Sawyer's Heart

1 year, 3 months and 26 days

2011-09-26T08:40:00.001-07:00

It still feels like yesterday.

Now and then

2011-09-16T07:31:00.000-07:00

I haven't found the time to write here in so long. We have been so busy. Planning the memory walk, getting Sadie off to school for the first time, and - of course - taking care of a new baby.

And along with all the craziness that each day brings, there is Sawyer.

Always there. Always in my heart. Always on my mind.

Landon looks so much like Sawyer that I often find myself trying not to look at his face while he's asleep. That is when the familiarity is all-too real. Erik shared with me the same fears - they look so much alike that a few times we've both thought Landon was dead in his sleep, with the same peaceful face his brother kept.

And yet, here we are.

Going through the motions of life. Somehow moving farther past the moment in our lives when he was here - time growing between now and then like a gaping wound that will never heal.

The Other Mother

2011-07-21T10:17:00.000-07:00

We went out for a shopping trip last night, one of our first as a family. Landon was fed and full, slept the entire time in his carseat. We were stopped, more than once...

"He's so sweet!"

"How old is he?!"

"I bet you're not sleeping at night!"

We smile, say thank you and move along.

The one thing I can't get out of my head though, is Sawyer. And especially how I felt just one year ago. I can't be completely beaming with the pride of a new mother. Instead, I worry that there might be another mother, grieving the loss of her baby. Trying not to look at our baby, but finding herself staring - hiding her tears.

I want to tell her I'm sorry, and that I was - and still am that mother.

Brothers

2011-07-18T06:20:00.001-07:00

Every time I look at Landon when he's asleep, I cry. Most of the time, it's just for a moment - But there are some days, where the tears just won't stop.

He looks just like his brother.

Landon Sawyer Williams

2011-07-04T14:26:00.000-07:00

Born June 30th, 2011 at 5:10 p.m. - 6lbs 7oz and 20 inches long. Our son.

If I only knew...

2011-06-02T22:06:00.000-07:00

I thought we were doing well.

Today, was hard. Such a small word to describe the enormous pain of reliving every moment of one tiny life.

I feel so much guilt.

We were getting ready to go to bed and I couldn't remember if I prayed the night before he died. I looked at Erik - my eyes filling with tears, "Did I even pray? I must not have prayed hard enough."

How many times did we visit the NICU on his second day? Was it really only three? What kind of mother visits her sick, premature son only three times in an entire day? I never should have left his side. I wouldn't have ever left his side if I knew...

The last visit we had with him was perfect. I held onto his tiny hand and stroked his delicate cheek. I remember talking with his nurse, we were all so hopeful for Sawyer.

The last thing I said to my baby was that I was sorry for not being there more. That every single day I would be able to visit longer and longer as my body healed from the c-section.

It was so hard to leave him that night because he looked so good. His color, his stats - he was stable for the first time since he was born. We went to sleep with peaceful minds, thinking that we had better rest up because the coming weeks and months that were ahead of us were going to be long.

If I only knew...

Sawyer's first birthday

2011-06-01T20:29:00.000-07:00

We let balloons go for you.

Sadie gave you a beautiful windchime with tiny dragon flies.

Mommy and Daddy read poems. We all sang "Happy Birthday" and watched as a hawk circled gracefully above.

After dinner, we went back to the cemetery. It was dusk. The sky turning from dark blue to black right before our eyes. Instant stars twinkling in the night sky.

I had to go back. I told you how sorry I was that on the day you were born, we never had the chance to see you. If I only knew Sawyer, I would have never left your side. I would have stayed with you every second of your tiny life and held your hand.

I know you are safe. I saw where you went, and each day here on earth is just one closer to being with you again. All of our love...

One year

2011-06-01T05:31:00.000-07:00

Happy 1st Birthday Sawyer.

Tuesday morning

2011-05-31T21:23:00.001-07:00

Today felt like the day.

Tuesday.

The day after Memorial Day.

A trip up to the hospital.

The last time we did the exact same thing on the exact same day, it all started.

I was awoken out of my sleep when my water broke. I was half-dazed, walking to the bathroom and could feel my pants starting to soak with fluid. I thought I had urinated on myself at first.

When I turned the light on, I looked down to notice that my pants were tinged with a pinkish color. I smelled them. It smelled like nothing at all. I knew what happened.

Erik had been sleeping on the couch because he had a terrible cough just like me. I punched him hard in the back to wake him up. I had him smell my pants too. Same thing, nothing.

I was terrified and shaking. Erik called my mom and told her she needed to get to the house, now. I - and I still have no idea why - took a shower. I felt that I absolutely had to take a shower first before we could leave. Besides, we had time - no one was here yet to watch Sadie.

While I was in the shower, Erik had tried to call our friends - Carrie and Mike - a few times (they live just a few doors down from us) but there wasn't an answer. So he ran down to their house and rang their doorbell until someone came downstairs. Carrie was here just minutes later as we were ready to walk out the door.

I will never forget how scared I was at that exact moment - Carrie gave me a huge hug.

I remember the sound of my shoes as they pounded down the stairs out to the garage. I remember driving in the darkness and silence all the way to Chicago. I remember Erik pulling into the parking garage, desperately telling the attendant that I was in labor - where do we park? I remember, with each contraction, thinking that we were never going to make it to the hospital.

We did make it. And for that time, we were still okay - together. Three hearts beating.

May 29th, 2010

2011-05-28T09:06:00.000-07:00

The last picture taken of me while Sawyer was still safe inside my womb. A blurry picture taken with Erik's phone. I was happy here. Happy because I could just lay back and listen to his tiny heart "woosh" with every beat. Little did we know, just how broken it was.

One year ago, my sister was having a birthday party for her son, he was turning three. Erik had just picked up Sadie the night before from my mom's house - that's where she was staying while I was home on bedrest.

I was so excited to see Sadie and even more excited for a long holiday weekend together. The days sitting here by myself were really starting to get to me. I was trying so hard to stay positive even though I knew something was just not right.

My sister had called to try and convince me to come along with Erik and Sadie to the birthday party. I wanted to go, so badly. But I was on strict orders from the doctor to stay put. My sister even offered to make up a place on the couch for me in her den, and bring me food or whatever I needed as the party went on - but, I didn't want to be stuck in the house, on a beautiful day with everyone feeling sorry for me. Alone, yet still surrounded by everyone. So, Erik headed off with Sadie to the party without me.

While I sat at home by myself I couldn't help but notice that something wasn't right with Sawyer. He was making his kick counts (10 within an hour) but the thing is, he wasn't exactly kicking. He was barely moving. Just enough for me to notice, but not enough to make me feel that he was okay.

We had known that my fluid was very low for the past month. I tried to relate that to the reason why he wasn't moving the way I felt he should be. But something in my heart kept telling my head to worry. And that's what I did.

I called over to the party and talked with my sister - crying between sentences, overwhelmed with dread. She said I shouldn't worry, and to call the doctor just in case.

Then, I called my sister-in-law who is a NICU nurse and explained to her how I felt. She has this very gentle way with words, and highly suggested I just go ahead and call the hospital. I needed that encouragement. I needed to know that what I was feeling made sense in some way.

By the time Erik came home and put Sadie to bed a few hours later, we were on our way to the University of Chicago. When I arrived, the standard tests were done. NST, BPP and everything checked out perfectly. The resident who took care of us that stormy late-spring night, reassured me that coming in wasn't a mistake. That she'd rather see us here and be wrong, than stay home and be right.

Two days later - she delivered our son, limp and gray, after my placenta abrupted.

Time in my heart

2011-04-28T19:33:00.000-07:00

It's almost a year.

I don't want it to be a year. Or two years. Or ten. I don't ever want anyone to forget you.

I just want more time.

I miss you Sawyer. I love you. I'll never be the same without you.

No words

2011-04-17T19:59:00.001-07:00

My cousin lost his baby girl this morning.

Sometime in the night, she quietly slipped from this world to the next.

When I think my heart can't be any more broken, a new crack forms.

Please pray for his family. This was their first baby, their only child.

Sawyer's Heart Project - Our Wish List

2011-03-25T16:19:00.000-07:00

Sawyer's Heart Project provides immediate support and comfort to bereaved parents who have experienced a pregnancy loss, stillbirth or the loss of an infant through the distribution of hospital memory boxes.

As most of you know by now, we have recently been welcomed by Angels Of Hope, Inc. NFP based out of Morris. They are a fantastic organization that supports families who have suffered the emotional or physical absence of a child.

It will be a few weeks before their website is updated with our information (http://angelsofhopeinc.org) so until then I will be posting our "Wish List" of items for our memory boxes here and on our Facebook page.

Thank you to everyone for your continued support and please feel free to share our mission with your friends and family.

"Our Wish List"

-Plaster molding kit sets for hands and feet
-Receiving blankets
-Hat and bootie sets for newborns and preemies
-Newborn and preemie sleepers
-Small candles or votive candle holders
-Disposable cameras
-Copies of the booklet "When Hello Means Goodbye" - Available online only
-Copies of the books - "Empty Cradle, Broken Heart" and "The Christmas Box"
-Travel-size baby shampoos and lotions
-Small notebooks or journals
-Angel ornaments
-Baby's handprint or footprint ink kits
-Picture frames (Nothing larger than 5x7 please)

Please send all items to the following address

Sawyer's Heart Project
c/o Michelle Williams
25645 Bridle Path
Channahon, IL 60410

Donations can also be dropped off at:

Holsinger Meents, Ltd.
101 West Illinois Avenue
Suite 1
Morris, IL

Holding on to what I have

2011-03-06T13:08:00.000-08:00

Yesterday was a particularly hard one for me and Erik.

I'm not sure why. It wasn't a significant date and there was no specific reason. The sadness just hung over us.

I could hear Erik in the kitchen late last night, humming a song that we both sang to Sawyer as he died - "You Are My Sunshine" - and he had a chair turned, facing out the window. He was looking at Sawyer's angel turning colors in the dark. I don't know if he knew that I could hear him, but I did. And I left him alone. You learn that about grief. That your spouse sometimes, needs that space to just be. And you grow together in learning how it all works. We grieve so differently, and at other times - we're right in sync with each other.

I crawled into Sadie's bed in the middle of the night. I needed to feel her against me. Know that she was safe and warm. I do that a lot. I can feel my broken heart pounding inside of me so powerfully when I do this...

Because when I yearn for Sawyer, there's nothing to hold against my chest. No cheek to stroke or hair to smooth.

I hold Sadie and I'm grateful. And I pray that nothing ever takes her away from me.

The sun is out today and we didn't talk about anything last night. The mood is softer, Sadie makes us laugh. And a new baby is persistantly kicking me all day long.

The hope mixed with the grief. The love pouring out over the loss.

Finally, heart happy

2011-02-19T18:23:00.001-08:00

As many of you know, we are expecting our "rainbow" baby sometime in the next few months. We're hoping that this little one stays put a lot longer than their big brother and that labor, delivery and everything after that is complication-free.

Yesterday we had our first fetal echo of the baby's heart - and at this point, things look very promising. No glaring issues to be seen, but the heart is so tiny at this point that there is no way to see everything. So we head back in April for one final echo before the baby is born. Of course, we'll be having another echo done on the baby's heart after birth - just to rule out every possible CHD out there.

Our journey has been a mixed blessing. We are happy for our new bundle of joy while we continue to mourn the loss of our son that is still so fresh in our minds and hearts.

Thank you everyone for the continued love and support. It has helped us so much and we are thankful for dear friends and family.

CHD Awareness Week - A Song for Sawyer

2011-02-14T07:11:00.000-08:00

February 7th through the 14th is Congenital Heart Defect Awareness Week. Every day this week, we will feature one guest post from the parent of a CHD warrior or angel. Today, we feature the lyrics to a song written for Sawyer by his father.

Popcorn and Unicorns (A song for Sawyer)
by Erik Williams

Sunshine and clouds, always bring the rain
Why did you have to go and leave us with this pain?
Your perfect broken heart, was just too beautiful to stay
We’ll see soon, I can’t wait for that day.

Here comes the rain, comfort with pain
Makes me feel that I’m the one to blame.
Feels so good to me
Holding you as, I hold on to that June day.

Popcorn and Unicorns, we’re going around that carousel
I’m holding you oh so tight, but awaken in the dead of night.
Then I know it’s just a dream, I wish you were here forever
Maybe someday, we’ll see.

Here comes the rain, comfort with pain
Makes me feel that I’m the one to blame.
Here comes the rage, where will it be tomorrow?
Holding on to that pain, before it goes away.

Stuck in this cage, life is rearranged
Until we meet again one day.

CHD Awareness Week - Allison and Arley's Story

2011-02-11T05:46:00.000-08:00

February 7th through the 14th is Congenital Heart Defect Awareness Week. Every day this week, we will feature one guest post from the parent of a CHD warrior or angel. This is the story of Allison and Arley as told by their mother, Dana...

Our CHD Story starts in 1997, on Tasha's 3rd birthday, when her younger sister Allison was born! Allison was born at 9:47 a.m. in Hot Springs, AR. Miraculously, they discovered she had a problem rather quickly, due to an x-ray taken of her clavicle, which was broken during the birth process. This x-ray also showed her heart, specifically, that there was something very wrong with the size and shape of her right ventricle. ( Alan, my husband, was almost thrown out of the nursery and delivery area, because he was telling the nurses something was wrong with her and they didn't believe him - but that's a long, detailed and ridiculous story for another time. I had to tell the nurses to shut-up and listen to him!) Then the x-ray tech walked into the nursery and said "you need to get a doctor in here for this!"

Allison was flown by Arkansas Childrens Hospital's Angel One helicoptor to ACH in Little Rock, AR. My doctor had told me that they would NOT release me from the hospital to go with her; I asked him how many security guards they had available. I WALKED into the main entrance of ACH at 12:17 p.m., just 2 hours and 30 minutes after she was born. She had her first OHS (open heart surgery) at 2 days old, and her second OHS at approximately 5 months old, which was an amazingly short time between the surgeries, for what she had. She had progressed so well. Her first surgery made an opening where her Pulmonary Valve should have been, and placed a shunt to the pulmonary artery, to route some blood directly to the lungs, and decrease pressure on the right ventricle(RV). Without the pulmomary valve, in utero, the right ventricle does not form properly, and is usually very small and underdeveloped in the pumping chamber, yet the tissues and muscle walls are usually increased in size (defined as Hypertrophy). Allison's RV was small enough to see a serious size difference in the x-ray, but it managed to grow quickly, almost miraculously, into a close-to-normal size. Her second surgery removed that shunt, to prevent too much blood flow to her lungs, and allowed her RV to do it's own job. But she still had just an opening where her Pulmonary valve should have been. At that time, 1997, general medical consensus said this was not hereditary and we should not worry about future children having issues. She spent a good amount of time in the hospital and came home on meds, had regular monitors and very frequent cardiology checkups for years... but ultimately, things had settled into NORMAL. Sure, if she got a fever, it was a cause for concern. All the normal concerns and warnings for CHD children were in place for her, but she was "an exception to the rule", according to her cardiologist. She rarely had any complications, no excessive illnesses, a few antibiotic shots and rounds here and there, but other than the "big, glaring CHD" issue, the induction into "the zipper club", she had no real health problems. The years rolled by, and ultimately, all was well and we were doing pretty good with our own little version of NORMAL.

So let's enter 2007 - We have had many good years and were doing really well when we found out we were going to have our little boy. 2007 was my "pregnancy year." Normal ultrasounds, we had several, and everything went well.

Late October 2007, just one week before Arley was born - our daughter, Allison, had a "regular" annual cardiology exam. The ECHO and stress tests showed "issues". She was to be scheduled for an MRI within the next month. At this same appointment, our regular cardiologist, who specializes in fetal echos, asked me if we had performed a fetal echo on this baby? I said, NO, we hadn't, but that no one had recommended one... should I have had one? Was there anything to worry about? She said we were now too late in the pregnancy to see one, but that it should have been recommended. SHe really wanted to reassure me it would be okay.

On Halloween, at 12 NOON, on the dot, little Arley came into this world, on his daddy's birthday. While my husband did have to make a little bit of a scene here too, it was rather quickly apparent to the nurses that there was some oxygen level problems with our son, and within a few hours of birth, Arley was sent by ambulance across town to ACH.

I, again, WALKED into the same Arkansas Children's Hospital entrance, just as I had 10 years before, at 4:14 p.m., just 4 hours and 14 minutes after Arley was born and being 10 year older and far wiser (ha!), immediately after I walked in, I was convinced that getting a wheelchair ride would be more sensible : )... so I rode to the NICU, where my baby was now waiting...

His diagnosis took a little longer than Allison's had 10 years before. I honestly think they were testing and retesting to make sure there was no mistake. After all, it really couldn't be correct. It was practically impossible that Arley would have the EXACT SAME HEART DEFECT as his older sister. But again, our diagnosis was Pulmonary Atresia with Intact Ventricular Septum! Let's talk DejaVu?? Really? You HAVE to be kidding me, right? ?

Within his first 4 days of life, he had undergone multiple tests and catheter procedures; unsuccessful catheter procedures. They got info and pressures and pictures, but could not "fix" any of the problems as they had hoped, so on Nov 6, 2007 he had his first OHS. For all the medical advances of the previous 10 years, his surgery was basically the same as his sister's in 1997. Didn't take quite as long, newer meds, newer tools, more confident surgeons, even, (not necessarily better surgeons, because we were blessed all around with great surgeons, just that these procedures were a little more common and tested by 2007 than they had been in 1997) but still, pretty much the same procedure. Enter a long hospital stay, one suspected stomach bacteria that turned out to be a reaction to the formula they were adding to my pumped breast milk and tubing into him, tedious issues with teaching a baby to suck on a bottle after they've been sedated for too long, etc.

In Dec 2007, Allison finally had that MRI she was previously scheduled for- remember? the one we had postponed during Arley's critical stages - and YES, guess what? She needed her 3rd surgery, a valve implant, and soon; docs said I needed to schedule it before summer, at the latest. Her heart was having problems, it would be okay for a little while, but whatever time we delayed would continue to cause further damage to her heart. Damage that it might or might not be able to "recover" from... Needless to say, we adjusted our calendars and got her on the schedule for March, 2008.

In Feb 2007, Arley had a balloon angioplasty, due to post-operative stenosis in his branch pulmonary arteries. Short hospital stay, bad reaction to the anesthesia, but he came home and recovered well.

In March 2008, Allison had her 3rd OHS (she was 10) to put in a prosthetic pulmonary valve. The valve she has is also a newer development, at least it was NEW in 2008, and although it was placed during an OHS, the internal parts that wear out and and require replacement can be removed and replaced by a catheter procedure, if all goes smoothly.

It is quite different to have an older child, who can talk and communicate and tell you "what for", go through an OHS, than it is to have an infant go through OHS. One is tiny and you can't hold them, and they can't tell you what they feel. The other is still your "tiny baby", just grown a little, and in a bigger bed: but you still can't hold them, and they ARE verbal enough to understand AND to be able to tell you what they feel.

I can honestly say it doesn't get easier just because we've done it several times before! We may be "old hat" at the processes, but the emotions never get dulled. If anything, I find each surgery and procedure is harder than the time before. It definitely takes a toll - on the patient, on the family!

In June, 2008, Arley had another balloon angioplasty.

In August 2008, he had his second OHS, closing down his shunt. The surgeon also used this opportunity to place some patches on his Branch Pulmonary Arteries, these are small sections of tissue added to the arteries in an attempt to expand them and allow them to grow further on their own, little "expanders", sort of. He has more severe right ventricle hypertrophy than Allison did, and he has the branch pulmonary artery stenosis. His progress is not going to be as steady and easy as Allison's was. He'll have to clear his own path and write his own story.

Since the last OHS surgery in 2008, Arley has multiple catheter procedures, Echo's, EKG's, some just diagnostic, some balloon angioplasty, cutting balloon angioplasty, as his doctors are determined to prolong his growth time before his next OHS. We've had a weekend stay for a still unexplained spiking fever, which rated not only multiple IV's and blood draws, but also rated a spinal tap. They don't sedate feverish "heart" children for spinal taps. That's not an experience I recommend for anyone. The post-operative stenosis of his branch pulmonary arteries is a persistent problem, and the one that we believe will ultimately create the need for most of his future procedures. And that's not even approaching the subject that he currently has only some partially functioning "flaps" where his Pulmonary Valve should be. Nor is that discussing his right ventricular hypertrophy. Nor any weakness of his lungs caused by prior low blood flow... nor... anything else...

His most recent procedure was in November 2010, when he was admitted for a cutting balloon angioplasty. They did perform the angioplasty as planned, but the internal findings were severe enough that they also placed a stent in the lower branch of his Right Pulmonary Artery. Thanks to recent medical advancements, the stent that was used is expandable, via catheter procedures, which means that rather than requiring an open chest procedure to replace this stent as he grows, the stent can most-likely be expanded by catheter procedures to grow with him.

We know that Arley will definitely have future balloon angioplasty procedures, on both his Left Pulmonary Artery (which they left alone during this last procedure) and on his Right Pulmonary Artery again. The secondary branch to the upper lobe of his right lung is still exceptionally small at one point, and of course, there will eventually be the expansion of the stent that will be necessary as he grows. The stent is placed in a section of the RPA, towards the lower lobe of the lung, just past the branch to the upper lobe. After this last procedure, the increased blood flow to his right lung was more than his body was prepared to handle, and he had problems maintaining his pulse oxygen levels, the level of oxygen in the blood. His lungs were not capable of pulling the oxygen from the air and putting it into his blood. This was a very scary development. The doctors called this pulmonary reperfusion. It also places him at even greater risk, should he develop any kind of lung infection. However, he now seems to be stabilized and returning to "normal". That's his normal, our normal, not your standard definition of NORMAL.

Arley suffers from night terrors and nightmares, he has woken up screaming "NO, Doctors HURT Arley". He has woken up just SCREAMING, not stopping. When he first slept through the night, I would wake up suddenly, heart pounding, lump in my throat and roll over, or run to his bed, just to touch him, and know he was okay. ( I did that same thing years before with Allison, but I think shock had dimmed my memories of that, until the "DejaVu" experience of Arley's birth and surgery brought it all back.)

Allison was an outgoing, wonderful child before this last surgery. She was extremely intelligent, hard-working, eager to please. She still is. She's just not her old normal self anymore. I guess this is her new Normal...

They say that there are always risks of some damage from the bypass machines - limited oxygen, the cold, the sedation. She's not "damaged", not by any medical standards. She's still just as beautiful, and still smart; but she's changed. And she's old enough, and smart enough, to know that there's a little difference, just a little one, but it's there. I feel self-concious even writing this, almost like I'm betraying her, or being unfair, but I know that she knows there's a slight difference, and we've talked some about it, so it's only fair to be truthful here, and say that there ARE differences.

Allison cries now when we talk about Arley needing another surgery. She knows what it means for him.

She knows she will have future procedures, as well, but she doesn't cry for herself; Just for him.

And then there's Tasha, the most awesome big sister ever. Sure, those surgeries were physically and emotionally traumatic on my two littler ones, but it's so easy for us to forget that it has had it's effects on our older daughter as well. Maybe those scars are unseen, but they are there.

I've so enjoyed FaceBook and the CHD community that it has brought into my life. I never had anyone to really talk to when Allison was little about living with CHD and what it does in a family. Your average people, the day to day people in your life, love you, certainly, but they have no concept of what CHD really does to you. It's easy to say, oh, they were born with a problem, but they've had surgeries and it's fixed now. My children will never be fixed. They will always have some issues, some tests, future valve replacements, future Angioplasty, further damages, etc; all of these are complications of PA-IVS, which is a form of HRHS (Hypoplastic Right Heart Syndrome), of which Congestive Heart Failure is a "concurrent diagnosis". What does this actually mean, non-CHD "people" ask? It means my precious little children have a problem that isn't "curable". It can be treated, and the heart can be made to work in other ways, but it can't be cured. It means our "NORMAL" IS NEVER NORMAL!

But you know what?

My hope is to live life to the fullest and make every moment count, and to help my children do the same. We are refocusing our life to help them understand that while money is important for comfort and survival in this world, it is not the answer to all problems. While there are moments that fear is very harsh and I get so scared I can't breath, I remind myself that "Who of you by worrying can add a single hour to his life?"- or to anyone else's? I want to enjoy the time that I have with my children and my family. And I believe that theirs will be a long and happy life. I HAVE to believe!

I beleive that I will someday have grandchildren. Grandchildren who may be at extreme risk for CHD. Without CHD research and further genetic research, there's not an answer as to why I have 2 children with an identical condition. There's no knowledge as to whether Tasha could be a carrier of some unknown gene, there's no knowledge of what the chances are that Allison and Arley will pass this on to their children. There's the question of whether Allison's heart could survive pregnancy and childbirth. There's so many questions that need answers. To get answers, we must have research!

I support CHD Awareness so that, possibly, future CHD parents and children won't have to face all the extensive procedures that I have seen. So that, as each new doctor has an idea for a way to do a procedure through a catheter, rather than having to open a tiny child's chest, there's funding available to test and improve and implement that idea. So that, all those tiny, ridiculous, unusual, yet deadly, little complications - that can take a precious child's life in a heartbeat <3, can be studied, can be controlled, can be shared between professionals in the field, so that one hospital, one doctor, who has discovered a way to decrease the incident of those complications, will have a way to quickly, easily and openly share that information. If a new development can save the life of just ONE LITTLE BABY, one child who beats the odds and continues on to share another day with their family, then that will be success. That development will mean the world to that child, and to that child's family, and to that child's friends, and to that child's future. That child WILL HAVE a future. I've seen so many children lost, so many angels earn their wings; and it's so hard to know that one little bit of research, one more bit of shared knowledge, MIGHT have prevented that.

Ignorance is no excuse! Share the cause, share the info, share your stories.

Because: Awareness = Funding = Research = Answers = One more day for a CHD Warrior

CHD Awareness Week - Luke's Story

2011-02-09T13:23:00.000-08:00

February 7th through the 14th is Congenital Heart Defect Awareness Week. Every day this week, we will feature one guest post from the parent of a CHD warrior or angel. This is baby Luke's story...

I guess you could say that our heart story began in July 2008. We found out that we were pregnant with our third child. We were overjoyed with the possibilities that a new life would bring to our world. After all, Emily and Matthew had already brought us such joy (ok...with a bit of frustration at times). To add a third child to our family just seemed like the perfect plan.

The pregnancy continued without a hitch. When we went for the “big” ultrasound, we found out that our baby was a girl. To say that Emily was excited to have a baby sister would be an understatement! I remember asking the tech if she saw what I saw (as in, a little penis) and she told me that she thought she saw “something” but that no, it was a girl. But she was healthy and that is all that really mattered to me and Tommy. About 9 weeks later, I was still not convinced she was a girl, so I had my OB check the baby's sex once again. She assured me that there was a little girl hanging out in my tummy. Even though I took her at her word, I still knew that something was not right with our little girl, Ava “Caroline”.

Fast forward to 37 weeks pregnant. I went for our final ultrasound to make sure that Caroline was head down for delivery. At that time, I asked my OB to check the sex “just in case”. Lo and behold, she saw testicles. Yup, Caroline was a BOY! My OB sent us down to get a more in-depth ultrasound to double check the testes status. It was confirmed: Caroline was a Luke. I remember hearing his heartbeat a lot during that final ultrasound, but when I asked the tech about it, she blew me off and told me she was listening to the artery in his umbilical cord. I knew that something wasn't right with Luke.

March 12th, 2008 started out as an amazing day. Tommy and I woke up (but did I even really sleep?) bright and early. I called the hospital to make sure that they could handle our induction. We kissed Emily and Matthew goodbye and arrived at the hospital a bit before 7 am. The induction went well and I laughed through contractions. It was perfect. And then we had this amazing baby boy. Luke Thomas.

The signs appeared to me almost instantly. When the nurse gave Luke to me to nurse, I noticed his hands. I know, I know. Most babies have bluish hands right after birth. His hands were not “blueish”. They were blue. I asked the nurse and she dismissed it. Then he kept falling asleep while he nursed. I knew that something was wrong with my baby.

My parents brought Emily and Matthew to meet their baby brother. The pictures of them holding Luke in the hospital room are the last pictures we have of our innocence. As the family was leaving, the nurse told me that she detected a heart murmur. That is the moment that we lost our innocence.

A few hours later, we received Luke's death sentence: Hypoplastic Left Heart Syndrome (HLHS). This sounds harsh, but it is the truth. It is how I feel. Luke was transferred via helicopter to the Houston Medical Center.

The few days before Luke's Norwood surgery were mostly a blur. But there are certain memories that are so vivid: the sight of our baby with monitors and iv's all over, the smell of the hospital soap, the cardiologist telling us how quickly hypoplasts can die.

Luke had his Norwood surgery on March 18th, when he was just a week old. He sailed through surgery as well as recovery. He came home 13 days post-op and was eating out of a bottle rather than an NG tube. Amazing—just like him.

It was good at home for a about a week and a half. Luke was growing, he was loved, he was such a good baby. It was the last week of his life that I noticed something was wrong. Again I knew that something was wrong with Luke. Luke had begun to have some issues while eating. He was having trouble drinking from the bottle and he was vomiting a lot. We went to the cardiac clinic on April 18th and our suspicions were (once again) dismissed. The cardiologist told us that Luke must have had reflux and wrote us a prescription for some anti-reflux med. I accepted her diagnosis because I trusted her, but I knew something was wrong.

We lost Luke that night. I don't talk much about what happened or how it happened. We lost him and that is enough for me.

Why share this story with you? Why do I keep repeating that fact that I knew something was wrong? I share this with you because I want you to learn something from Luke's life. I want you to trust yourself. Trust your instincts. Be an advocate. Let the powers that be know that you are concerned about your child's health. Whether your child has a cold, a suspicious bruise, or half of a heart...be an advocate.

The thing that affects me the most in regards to Luke's life and his death is the fact that I was not the advocate that he needed me to be. I failed him and the guilt that comes with that failure is overwhelming. Almost three years later, I am confident that he is much better in heaven than he would be here with us. I just wish that I had pushed a little bit more.

A few days after Luke died, my OB came to visit me and Tommy at the house. While talking with us, she shared that she had seen thickening on his heart during that final ultrasound. She admitted that to us. But then she saw his testicles and forgot all about his heart. That is a problem. Although testes are important (especially to the man to whom they belong), the fact that she “forgot” about his heart is absurd and unbelievable. This is the problem, though: heart defects are hugely under diagnosed.

Thank you to Michelle and Erik for allowing me to guest blog on Sawyer's Heart. What a beautiful little boy they have in Sawyer. Feel free to visit our blog at www.lukeslegacy.blogspot.com and check out our charity in Luke's memory: www.lukestree.org. Hopefully there will be a day in the future when parents don't have to bury their children because of broken hearts. Let's find a cause and find a cure! God bless you all!

CHD Awareness Week - Gwenyth's Story

2011-02-08T05:52:00.000-08:00

February 7th through the 14th is Congenital Heart Defect Awareness Week. Every day this week, we will feature one guest post from the parent of a CHD warrior or angel. This is baby Gwenyth's story...

Gwenyth was born with a congenital heart defect (CHD) called Truncus Arterious type I. She had surgery two days after birth and was doing so well. She came home only to suddenly be taken away just shy of two months old. Based on the little bits of info the doctors have to go on, it appears to be a virus that took her life. No huge symptoms gave us any foreknowledge and it was too late by the time we took her to the doctor.

Awareness=Funding=Research=Hope=Life

Gwenyth's mother, Laura Carpenter, wants everyone to know about the #1 birth defect. To read more about baby Gwen and Laura's journey through loss please visit http://www.gwenythcarpenter.com

CHD Awareness Week - Cora's Story

2011-02-07T10:43:00.000-08:00

February 7th through the 14th is Congenital Heart Defect Awareness Week. Every day this week, we will feature one guest post from the parent of a CHD warrior or angel. This is Cora's story...

Through my journey with congenital heart defects, I'm always surprised about how different, yet similar, this journey is for all of us. I have no clue what it means to spend time in the hospital beside a sick child. I cannot imagine the pain that Michelle went through keeping watch over Sawyer and that thousands of other families experience each day.

My daughter was diagnosed by the coroner. We never knew she was sick. I had a healthy pregnancy with Cora, and she was given a clean bill of health at the hospital. One early morning I was feeding her. I looked down and she was dead. I had no clue why. I first heard the phrase “congenital heart” from the coroner.

This week is all about making sure moms like Michelle and I don't have to talk to coroners and doctors telling us our baby is dead. I can still hear the doctor, “I'm sorry, but your baby is dead.” It's surreal. I cannot believe it happened. But, it does happen.

I know this awareness week means more to those of us directly affected, but I think everyone can relate to that. Babies shouldn't die.

- Kristine McCormick is the mother of Cora and an active advocate for the importance of pulse oximetry screening in newborns as a proven method help earlier detect congenital heart defects. Currently, legislation is pending in her home state of Indiana to make pulse oximetry screenings a mandatory test for every baby born in the state. For more information about Cora's story please visit http://www.corasstory.org

Loss and hope

2011-01-20T21:27:00.001-08:00

A friend that I haven't seen in a really long time came over for a visit today with her three boys.

Our kids had fun terrorizing each other and making a mess. And as mothers - we were constantly refereeing the mayhem.

In between the yelling and the playing, my friend asked me about my pregnancy. Questions about how I was feeling and what it was like to be pregnant again so soon after losing Sawyer.

Everytime a question came up, one of our children were about to hurl themselves off a chair or decided that the toy somebody else had was worth beating each other up over.

Amidst our shouts of discipline, I didn't really get a chance to answer...

But the thing is, she asked me things that no one ever asks - questions that I think a lot of people are afraid to ask.

But, at that moment, it meant the world to me that someone was acknowledging my pain, my loss - and my hope.

Always heavy

2011-01-19T20:55:00.001-08:00

Today is one of those days where I could just cry forever.

The more this baby grows inside of me, the more I miss him.

Two days. Not even two days.

I held him while he died. I held him for his entire life - the end of his life.

It doesn't stop. It doesn't stop.

Time does not make it easier. The person who said that is wrong. It's bullshit.

The weight of the grief? Is always the same. Maybe some days, it's easier to pick up - but the size never changes. It's always heavy.

Please, help us save babies

2011-01-17T16:08:00.000-08:00

Each year since Sadie's birth, we have joined the March of Dimes to promote a healthy start for babies everywhere. On our third anniversary of the March for Babies, this year's walk means more to us than we could have ever imagined.

This year, we walk in memory of our son, Sawyer.

For the first time, we are joining the Joliet March for Babies and I will be there as a special guest to promote support and awareness for pregnancy and infant loss as well as speaking about prevention.

I know times are tough, but what the March of Dimes does for our babies goes beyond the NICU. When Sawyer died, the March of Dimes personally contacted our family to lend their support through bereavement materials and pure love.

A huge reason we continue to support the March of Dimes is that they support grants that fund Congenital Heart Defect research. A CHD took the life of our son, and thousands of babies and children each year. Did you know that TWICE as many babies and children will die from a CHD than from ALL forms of childhood cancer...COMBINED. Those numbers have to change, so that another family doesn't have to let their child go, just like we did.

Please take a moment and consider donating to our team this year "Sawyer's Heart Heroes" - any amount helps greatly, and we appreciate EVERY donation. So please, help us honor Sawyer's brief life and the lives of all other babies gone too soon.

Just follow this link to make your secure donation. And again - Thank you. http://www.marchforbabies.org/mktarrant

Life, without him

2011-01-16T20:22:00.001-08:00

Sometimes, I wish the people who knew me the most could really see how we face life every day without our son.

It will never get better than what it is right now.

The hole in my heart will never heal.

I will never forget.

They say that time heals all wounds...

But one thing time cannot do, is erase the scars that those wounds leave behind.

Hope

2011-01-15T18:09:00.000-08:00

An old friend gave me a heaping dose of hope a few nights ago.

I received a beautiful card from her, congratulating us on our pregnancy and tucked inside the tiny package was a newborn sleeper.

Until that moment, the mere thought of buying anything for the new baby hadn't crossed my mind. When you lose your baby, things drastically change the next time around.

You fear everything. Anxiety grips you at nearly every turn.

You become too afraid to have hope.

But, that's just the thing that my dear friend Kristi gave me...

Hope to dream of a future for our baby.

Hope to imagine this child in my arms someday.

Hope for the rainbow at the end of the storm.

14 weeks

2011-01-15T18:08:00.001-08:00

So far, so good.

This has been my quietest pregnancy so far. And quiet is good.

I go back to my MFM at the end of the month to start the dreaded 17P injections. Thankfully, I have a sister and sister-in-law who are able to administer the shot for me each week so that I don't have to find an "injection clinic" to visit as an alternative. The 17P injections are to prevent preterm labor and while I'm on the fence about them, I'd deeply regret it if I passed on the shots and something happened to the baby.

Two weeks after this we head to Comer Children's Hospital where an ECHO will be done of the baby's heart. We are both anticipating this appointment very much and pray each night for a healthy heart and baby. A pediatric cardiologist will do the ultrasound and we should know about any structural abnormalities or defects of the heart right away.

We continue to thank God every day for what he has given us - Sadie, Sawyer and now our new baby - each has blessed us in so many ways.

We would appreciate prayers for this baby's health along with a few for my emotional strength which has been tested greatly the past few weeks. I'm having a difficult time trying to balance my grief and joy while not worrying about the outcome of this pregnancy. It's a fine line to walk, and I'm not sure I know what I'm doing really.

We're all very thankful for the continued support from our loved ones and will keep everyone updated on the new baby and some big news about "Sawyer's Heart" project.

Instant

2011-01-06T19:46:00.001-08:00

There are these moments that I can't imagine will ever escape me.

The moment of panic.

The moment I saw my son for the first time.

The moment they said, "There's only so much we can do."

The moment I touched him.

The moment I thought I was going to die.

The moment he died.

They revolve in my head almost constantly - a merry-go-round of beauty and suffering.

Away...

2010-12-23T23:43:00.000-08:00

Away in a manger,
No crib for His bed
The little Lord Jesus
Laid down His sweet head

The stars in the bright sky
Looked down where He lay
The little Lord Jesus
Asleep on the hay

The cattle are lowing
The poor Baby wakes
But little Lord Jesus
No crying He makes

I love Thee, Lord Jesus
Look down from the sky
And stay by my side,
'Til morning is nigh.

Be near me, Lord Jesus,
I ask Thee to stay
Close by me forever
And love me I pray

Bless all the dear children
In Thy tender care
And take us to heaven
To live with Thee there

Sawyer's special gift

2010-12-13T19:30:00.001-08:00

We received this in the mail today from a stranger. Thank you so much for remembering our son when so many close to us are afraid to say his name. Thank you.

A mother's instinct

2010-12-12T21:29:00.000-08:00

It was a year ago today that we found out we were pregnant with Sawyer.

It was cold and snowing and I had taken a home pregnancy "line" test that showed the faintest little plus sign. I obviously couldn't trust that and neither did Erik.

So at midnight on that Sunday, he dutifully drove 10 miles down to the 24-hour Walmart and picked up a digital test. Needless to say, I slept easier that night after the word PREGNANT popped up on a tiny, gray screen.

When people asked how I was doing during the pregnancy, I'd always say that I felt good, but that something with the baby just "didn't feel right."

I said it over and over. I can't explain how I knew. And sometimes, I wish I really knew...

After Sawyer died and I looked back on my journal and all the blogs I had written about his short life and the journey to his birth - Almost everything was prefaced with that "not right" feeling.

I tell people now, that my heart always knew - it just took a while for it to get to my head.

And that's the thing about pregnancy and motherhood that gets lost today. Instinct. We ignore it when our hearts are pounding. Sit silent when a doctor attempts to calm your fears. Even though you just know something is dead wrong.

If I had any advice to give to any mother it would be to always follow that instinct. We have it for a reason - even though we might not always know it at the time.

My instinct saved my life - and gave me two precious days with my son that I might have never had.

Making arrangements

2010-12-08T10:02:00.000-08:00

No mother or father should ever have to.

I never wrote about our experience with the funeral home because it's perhaps the one part of losing a child that we all want to forget. Except, I can't forget it.

We didn't have a typical funeral. No wake. I didn't want that for him. He was our baby and deserved a remembrance that would leave everyone touched by his spirit and love.

I wanted it to be beautiful and breathtaking. Just like Sawyer.

And it was.

All heart

2010-12-02T10:34:00.001-08:00

Sawyer's doing so much good. I can't wait to share my big news soon.

I'll never believe in a reason that he was taken from us, but I truly believe in the purpose of his short life.

Thank you for teaching me so much Sawyer and for touching the lives of so many. Our work has just begun.

"As we light a path for others, we naturally light our own way." - Mary Anne Radmacher

The ache in my heart

2010-11-29T21:33:00.001-08:00

There are so many things I want to say here - so many things I need to say. But they have to wait.

I wish you were here Sawyer. I just want you here with me. At night, I pray to you before I fall asleep. My eyes closed, trying to remember the feel of your skin against mine. Your head was so soft and smelled sweet and beautiful. I want to kiss you again, but instead - I kiss your grave.

I keep your blanket against my chest when I sleep - it's the only comfort I have.

Sometimes, I feel you kicking me. I know it's you because I've never felt anything so close to that in my life - and I can't explain it.

I miss you, sweet baby.

Surprise blessing

2010-11-26T21:51:00.000-08:00

We went to the cemetery yesterday after dinner and while there, I met the mother of the twins who are buried next to Sawyer.

It was very cold and I had my winter coat on, hood up - facing opposite the wind - so I had no idea that this woman was standing right next to me as I wept and talked to my son.

I turned around and was surprised to see someone there.

She smiled, opened her arms and held me as I cried. We shared our stories and in that moment, I didn't feel the wind or the cold. Just a warmth over my heart that I haven't felt in a really long time.

Erik said as the two of us were hugging each other, the hawk - which we hadn't seen since the end of the summer - lept off the branch of a dead tree and soared over us as the sun set in the cold, November sky.

Thankfulness of heart

2010-11-24T10:07:00.001-08:00

So once in every year we throng
Upon a day apart,
To praise the Lord with feast and song
In thankfulness of heart.
~Arthur Guiterman, The First Thanksgiving

When Sawyer died, I was alone.

I had no one to identify with. I didn't even know myself.

Today, I am so thankful for all of the wonderful and beautiful mothers I've met who have also experienced the pain of losing a child. The friendships of these women have meant more to me than anyone on "the outside" could ever really understand.

Sending all my love and prayers over the coming weeks to my dear friends Megan, Whittney, Laura, Emily, Kristine, Becky, Tricia, Shannon, Kim, Nicole, Renee and so many more of you. Without your love and ability to be there when I really needed someone to just listen - I can't imagine how I would have been able to come this far in my grief.

I love each one of you very much and am so grateful to have you in my life.

Something I haven't seen before

2010-11-23T10:02:00.000-08:00

Next to my desk is the display case we bought to place our pictures of Sawyer. And in the moment, it catches you.

Just pictures. His face. Those tiny, perfect toes and soft legs.

He's in a case. On a shelf.

There should be a swing in this corner.

My kitchen counter should be a mess with bottles and nipples. Dishes waiting to be washed. Laundry - piles and piles of laundry - sitting in a heap by the washer and dryer.

Instead, everything is clean and neat. Too neat. Too normal.

The sadness swells and that sick feeling like I've been punched in the stomach creeps back inside of me. And I look at his pictures for something - anything - I haven't seen before.

Sawyer's Giving Heart Project

2010-11-20T19:24:00.001-08:00

Soon after Sawyer's death, I knew I wanted to do something. I had to do something.

Not something for me, but something for him. Something for him that would help people. I wanted to fulfill Sawyer's purpose.

It wasn't too long before I started talking about making memory boxes to donate to local hospitals. Then Erik suggested we start taking steps to become a non-profit.

But, after the walk in October we attempted to get some work done on the non-profit, and quickly began to realize that this takes a lot of money - among many other things. Then there is the time, the waiting, the millions of hoops everyone keeps telling me that you have to jump through.

All I want is to relieve one mother of the heartbreaking agony of leaving the hospital with nothing. I know that the day we left the University of Chicago Hospital, as Erik was pushing me away from the place where our son was born and died, I clung to all of Sawyer's things with white knuckles. It was all I had. It is all I have.

And every mother deserves at least that.

Sawyer's stocking

2010-11-19T12:05:00.000-08:00

Last year, I bought Sawyer a stocking for Christmas.

This year, I don't even want to look at it.

Christmas Ornaments

2010-11-12T10:14:00.001-08:00

I've been working on ornaments for friends who have lost a child over the past year or so. They're turning out beautiful so far!

Retreating

2010-11-08T17:23:00.000-08:00

Life is so busy.

No time to sit here and really write what runs through my mind. I have a journal that I keep on my dresser. When a thought comes, I jot it down as quickly as I can so that I have it forever.

The memories aren't as vivid any more. I hate that.

I find myself drifting a bit. Away from family and friends. Wanting to just be alone with what I have now and needing time to consume all of it.

The fog of our nightmare, however, is lifting. The heavy pain heaped upon my shoulders is beginning to become more bearable to carry.

There are days when out of nowhere, a certain feeling creeps back into my stomach and heart. That sensation of feeling like you've been kicked in the stomach. Realizing that all of this did happen to you.

Sadie has been talking about her brother a lot. I wonder if he visits her in dreams or in beautiful fall sunsets. When I asked her what she wanted for Christmas a few days ago she said, "My baby brother."

How does a mother answer that? There isn't an answer.

A mother smiles through the tears, hugs her daughter and says "I do too sweetie. I do too."

It's almost six months.

Six months.

Sawyer's treat

2010-10-31T20:29:00.001-07:00

Sawyer gave us a treat when we went to visit him today. His headstone was finally placed. Happy Halloween to my little pumpkin - we miss you.

Heaven's Sky

2010-10-30T21:31:00.001-07:00

Erik took Sadie to the park this morning.

She asked him if she could go on the swings and while he was pushing her Sadie said, "I want to go high in the sky like my baby brother."

Erik gently explained to her that she can't do that because her baby brother is in heaven. Sawyer was very sick and he had a broken heart.

Erik started to cry and Sadie said, "Don't be sad Daddy."

She always says that when we cry.

Christmas wish

2010-10-28T05:34:00.000-07:00

Erik brought Sadie into our bed before he left for work this morning. When she woke up she asked "Mama, can Santa bring me my baby brother for Christmas?"

Oh Mammers :'(

"There is no footprint too small..."

2010-10-23T06:46:00.000-07:00

Sawyer's flowers, casket

2010-10-22T07:03:00.001-07:00

A Walk To Remember 2010

2010-10-16T18:04:00.000-07:00

Today was moving, powerful and beautiful.

Over 150 people came out to support our first annual "A Walk To Remember" in honor of Pregnancy and Infant Loss Awareness month.

The idea to start a walk sprouted up just two months ago when we learned there were no events locally to remember our babies. Erik came home from work that night and I told him, "I want to do this. I want to do it for Sawyer and I want to do it for every other parent who has lost a baby."

Less than 24 hours later, we booked a site for the walk and the next two months we poured our blood, sweat and LOTS of tears into making this day a success.

By our early calculations, we have raised well over $3,000 for Angels of Hope - NFP, Inc. This local non-profit organization supports bereaved families, assists parents who can't afford burial costs for their children and provides funding toward families who are in need of IVF treatment but cannot afford the cost. We are so happy to say that our goal of raising $1,000 was met and exceeded beyond our expectations!

This morning as we began to load our vehicles, Erik and I were standing in the driveway when a giant red-tailed hawk swooped down so low you could see his face. He gracefully soared right through our front yard, over our heads and then down the street. I never in my life have seen a hawk fly so low to the ground like that. There is no doubt in my mind that it was Sawyer's way of saying hello to us and he continued to visit us throughout the day.

We had such amazing success with our silent auction and raffle. T-shirt sales were through the roof and the kids loved painting pumpkins, hopping around in the inflatable jumper, face painting and LOTS of cupcakes.

The weather was breezy, warm and beautiful. As we neared the end of our walk the sun began to dip lower in the sky - warm, bright rays shooting out from behind the clouds. It was breathtaking.

We had a remembrance table upon the top of a hill, decorated with little pumpkins and gourds - where each family placed a flower when their baby's name was called. After the walk was over, Erik and I took all of the flowers, gently placing them in the river behind the pavillion and watched them slowly drift away with the current.

I am so thankful to our many friends and family who came out today to help - sisters, cousins, friends, family and neighbors. To our walk committee who has been working so hard to get this walk accomplished in such a short amount of time - We thank you so graciously.

To my friend Carrie - without you I couldn't have done any of this. She was my never-ending support and friend during the entire planning process. I always say she was the last one to hug our "lil Sawyer" when we were rushing off to the hospital at 4 a.m. the day he was born. Again Carrie, thank you from the bottom of our hearts.

To my husband, Erik. I never could have accomplished this without your support and constant love.

To all of you - the mothers and fathers of our angels and their sisters, brothers, grandparents, aunts, uncles, cousins and friends - Thank you for making today so beautiful.

And to my Sawyer - we love you so much and your short, beautiful life has touched so many. Today we were able to share in our grief and grow from the love you have shown us. Your spirit keeps us going. We miss you. We love you.

Today is for you.

2010-10-16T05:20:00.001-07:00

Today is "A Walk To Remember" and this undoubtedly goes without saying but if it wasn't for my beautiful baby with his perfect, broken heart - none of this would be happening today.

Sawyer - It's been four months. Four months.

I don't know how we made it to here and every day, your father and I question where "here" is and whether or not we will ever find that place.

I carry you in my heart with each sunrise and each sunset. Each glimpse of a rainbow or the morning dew. As each leaf turns its brilliant color and falls to the ground.

Today, is for you.

Remembering

2010-10-08T05:01:00.001-07:00

Last night we were in bed, remembering.

When I was pregnant we used to play this little game with each other. I'd rub my belly, trying to find where he was hiding those little feet of his. They were always in a different spot, he moved around so much. Breech one day, head down the next. When I'd find him, I'd give my tummy a poke - and in an instant, he'd poke back. It was our special way of saying hi to each other.

One night, right before he was born, I couldn't fall asleep at all because of how uncomfortable things were getting with my growing stomach. I always slept on my side, with a pillow between my legs. But that night, my back was aching and all I wanted was to lay on my stomach. Somehow, I managed to lay halfway onto my tummy and quickly started to fall asleep. Sawyer, however, had other plans and was not happy being squished. He kicked. I didn't budge. He started to squirm. He got my attention. And eventually, he pushed and kicked so hard that he literally rolled me over himself. I sat up in bed, and laughed. Sawyer.

Whenever I would lay down in bed for a nap or at night, I always held Sawyer. Gently stroking my stomach, he would slow down his kicks and fall asleep with me.

The time we had with Sawyer was so agonizingly short. Through the tears and in the dark, we talked about our only wish - to hold him in our arms again.

Ewan's purpose

2010-10-05T08:53:00.001-07:00

"The purpose of life is a life of purpose" - Robert Byrne

The death of baby Ewan has hit so many in the congenital heart defect community very hard.

Like Sawyer, he was diagnosed with Tetralogy of Fallot, had Pulmonary Atresia and no visible PDA.

A grim diagnosis no mother should ever have to hear.

I remember the moment when Sawyer's neonatologist came into our hospital room while I was pumping for the first time after his birth. It was June 2. A beautiful late-spring afternoon in Chicago.

As she began to speak, I sat there in my hospital chair giving her my full attention as the quiet hum of the breastpump did its work. I don't remember much about that conversation except for the very last thing she quietly told us before leaving the room and giving my hand a tender squeeze.

"Full-term babies with this type of heart defect have a very poor prognosis. I'm sorry."

My heart sank, but we never gave up hope. Just as Ewan's mother, Kirsten, had done. She never gave up on that beautiful hope. Ewan inspired us all - on the days he made a stride and on the days he had a setback. We cried with Kirsten, we prayed with her. And now, we grieve with her.

This beast known as "congenital heart defects" continues to ravage families all over the world, every single day. There is no known cure, only quick-fixes - and it is the number one birth defect and leading cause of infant death in the United States. These numbers are more than startling, they're horrifying.

It's easy to make a pledge to change these statistics.

What's not easy, is getting out there and sharing the most personal details of your story with a total stranger. All in an effort to hold on to the hope.

I want to thank Kirsten for sharing Ewan with all of us. I want to hug her and cry with her. But most of all, I want her to know that I'm not giving up on hope.

Ewan Eliezer Petermann

2010-10-04T13:42:00.000-07:00

Beautiful Baby Ewan died, in his mother's arms last night.

Fly high sweet angel.

http://www.team-ewan.com

Sawyer's purpose

2010-10-02T16:31:00.000-07:00

Today, the Compassionate Friends posted this quote:

"Grief with purpose is an awesome force."

For weeks, other bereaved parents have asked me "how I can plan an event so big, so soon after Sawyer's death?"

And that quote is the answer I've finally found, but have never been able to put so perfectly into words.

During our garage sale today to raise more funds for our walk, I came inside to take a moment for myself. I walked over to the beautiful display case Erik built, with all of Sawyer's pictures and keepsakes neatly tucked inside - and I cried.

Through the tears, I told Sawyer about everything we've been doing. And that we're doing it for him and for all the other babyloss mothers and fathers out there who had their hearts - filled with so much hope and love - shattered, and broken.

I want to hold him. At night, I lay in bed thinking about the bassinet that should be next to me. He would be four months old now. Sweet and beautiful.

But he's not here.

And that's where the purpose comes from.

When bad news hits twice

2010-09-20T07:25:00.001-07:00

Around this time last week, we discovered that our 2-year-old daughter had an undiagnosed PDA (Patent Ductus Arteriosus). Not a particularly alarming congenital heart defect, but after losing our son in June to TOF (Tetralogy of Fallot), I was beside myself with worry and concern for Sadie.

Sawyer in the NICU

When we revisited Comer Children's Hospital to meet with Sawyer's neonatologist after he passed away, one thing she said to me had stuck out among all the medical terms and tears. She suggested that it wouldn't be a bad idea to get Sadie's heart checked out, as congenital heart defects tend to group themselves in families.

Shortly after Sadie's birth, she began to have her share of troubles too. In the NICU for a few weeks and on a ventilator - she fought very hard and made huge strides every day. But,one thing I never thought twice about was her heart. We were told she had a murmur and that most babies outgrow them and that they are most often "innocent."

Sadie in the NICU

When the cardiologist began listening to her heart last week, I was taken by surprise when she mentioned the murmur again. Her pediatrician hadn't said one word about it at any visit we've had in over two years.

As the appointment continued, Sadie had an EKG and finally, an echocardiogram.

Sadie was a trooper and was sitting in her pull-up on the exam table, coloring while the cardiologist informed me that she indeed had a PDA and narrowing of her pulmonary artery (Pulmonary Stenosis). Thankfully, her PDA doesn't need to be repaired surgically at this juncture in her life. She will continue to be monitored each year for changes and eventually it will be repaired.

I never would have thought twice about Sadie's heart if it wasn't for the suggestion from Sawyer's doctor.

According to the American Heart Association, "the risk of having a child with congenital heart disease is higher if a parent or a sibling has a congenital heart defect."

Most parents of heart babies struggle to come to terms with the often scary diagnosis of their infant or small child. And often, other siblings can be overlooked in the craziness that is the life of a CHD family. As mothers and fathers, we have instinct for a reason and I've talked with so many parents who question whether or not their other children should be seen by a cardiologist. No one wants to hear bad news twice, but we also want to do what is the best for our little ones.

In sharing our story, I hope this helps one family that may be struggling to make that difficult choice an easy one.

We are now a "2 in 100" family

2010-09-15T06:09:00.001-07:00

For those outside the loop, the term "1 in 100" refers to the alarming rate of congenital heart defects among children. 1 in 100 babies are born every day with a CHD. And now, we are a 2 in 100 family.

Yesterday, Sadie was taken to the cardiologist after suggestion from Sawyer's neonatologist from the University of Chicago. We were told that CHD's tend to group themselves in families (sometimes) and that it might not be a bad idea to get Sadie's heart checked out.

When she was 6 weeks old, she was diagnosed with a heart murmur, but we had it checked out and were told it was an "innocent murmur." Apparently, if it persisted we were supposed to follow up. The message was never received on this end. Which infuriates me.

Long story short, Sadie still has a murmur and after an EKG and ECHO of her heart she was diagnosed with a PDA (patent ductus arteriosus) and Pulmonary Stenosis (a narrowing of the pulmonary artery).

Tomorrow we see a pediatric cardiologist at Christ Hospital in Oak Lawn and from there, schedule her surgery to fix the PDA.

At this point, I'm thanking God that this is a very fixable situation. At the same time, as a mother, I can only wonder "why my babies?" I know Sadie's little brother is looking out for her though. Because if Sawyer was never in our lives, we would never know about Sadie's heart.

CHD statistics are alarming and many do not realize that research for CHD's is one of the most underfunded. More children and infants die every day from a CHD than from all childhood cancers combined. Those are numbers that you can't argue with. And numbers that prove we have a lot of work to do, and a long way to go.

I have joined the "Fight for Preemies"

2010-09-09T12:22:00.000-07:00

My son was born on June 1, 2010. Exactly 12 weeks before his August 24 due date.

Because of his prematurity, my beautiful Sawyer was unable to even have a chance to fight the congenital heart defect that was diagnosed shortly after his birth.

Did you know that congenital heart defect research is one of the most underfunded? Did you know that more infants and children die each year from a congenital heart defect than from all forms of childhood cancer combined?

It is amazing to me and a testament to his will that Sawyer survived long enough for his father and me to hold him and say goodbye. He fought harder than any of us could have imagined, especially given his diagnosis of a severe form of Tetralogy of Fallot.

At my 20-week ultrasound, Sawyer was positioned in such a way that the ultrasound technician was unable to get any scans of his heart, abdomen, kidneys and bladder. We were scheduled to come back at 24 weeks to complete these scans. Nothing was out of the ordinary and we were thrilled to be welcoming our first son.

During the ultrasound scan at 24-weeks, the technician simply said "Oh, are you here because of the low fluid?"

I shot straight up and asked what she was talking about, and she ignored my questions as she went on to complete the ultrasound. We then had to wait nearly an hour to see the doctor. That was one of the longest hours of my life, as I was so worried and concerned about our little Sawyer. Would he be okay? What does low fluid mean for all of us?

My doctor, an excellent MFM out of the University of Chicago, immediately informed me that I would need to go on bedrest and I received steroid injections to mature Sawyer's underdeveloped lungs in case I went into labor too soon.

Four weeks after that, on June 1, my water broke early in the morning at 4 a.m. By 4 p.m. that same afternoon, I started to bleed heavily as my placenta started to detach.

I had an emergency c-section that I was not awake for. I thank God for that turn in events every day, because when Sawyer was born he was limp, gray. He had no heartbeat. His premature body had no idea that labor was in progress and his body failed to complete many important tasks that babies do naturally before being born.

Not even two days later, on a beautiful, late-spring morning - Sawyer died in my arms. His heart slowed over the course of an hour and he continued to fight. He struggled to breathe and even let out a tiny coo for me to hear.

Before his death, the NICU counselor presented us with important information from the March of Dimes. I wish I was able to put that NICU information to better use, but unfortunately, our time with Sawyer was brief. In the weeks following his death the March of Dimes sent us a bereavement packet - and I want to take the time right now to thank them.

Sawyer's story is just one of thousands that prove how important it is to continue to support this organization. The March of Dimes currently funds research for congenital heart defects and premature birth. Sawyer died because of a broken heart, and every single day I wish that my own broken heart would take me home to my baby. Some day, all babies will be born healthy - but it is up to us to make that happen.

12:08 p.m.

2010-09-08T10:08:00.000-07:00

He should be home now.

Meant to be

2010-09-06T12:01:00.000-07:00

We're on our annual family vacation in the Wisconsin Dells for the long weekend. This was our trip, originally scheduled for June (thinking back, we made this trip for June, thinking about how far away August's due date would be) but had to reschedule - so here we are.

It's been fun to take Sadie to all the places we went to as kids - the Ducks, Tommy Bartlett's Exploratory, Pizza Pub, mini-golf, waterparks.

There have been many sad moments. Everywhere we've gone, I've thought of Sawyer. As Sadie bravely traversed giant waterslides, I couldn't help but think that I should be sitting with the moms feeding and cradling their tiny babies. But, I'm not. And I stare at them, wondering if they realize - wondering if they can see the pain and know my story just by looking at my face.

Today, we took Sadie to the Dells Mining Company. It's a cute little attraction where you "pan" for crystals, gems and other rocks. Whatever you find, you keep and if you happen upon a special stone, they can polish and cut it for you and ship it back home in about six weeks.

We got busy and found lots of big and small gems. Ruby, saphire, emerald - we found them all - and my birth stone and Sawyer's - a beautiful pink little crystal.

I wasn't planning on purchasing a stone, let alone getting it set and buying a necklace - but when I saw it, I wanted it.

The woman who was showing us all the stones and carefully describing each gem to us one at a time asked "Who is the June birthstone for?"

I told her it was for our son who passed away. Our beautiful Sawyer.

She looked up, with tears in her eyes and said, "My son died four years ago. Today."

The tears in my eyes couldn't stay put any longer and started streaming down my face and hers. We held each other's hands, as we shared this bittersweet, common bond.

I don't think these encounters are coincidences, but moments that were meant to be. I'm sure her heart was heavy with her child's memory all day long - as was mine - and we finally had a chance to both speak about it, something she said was the only thing that has helped.

I will keep talking as long as people are willing to listen. I want everyone to know what happened to Sawyer. I want everyone to know about congenital heart defects and how they take more lives each year than all childhood cancers combined. I want everyone to know that I gave birth to my son, prematurely at 28 short weeks. And most of all, I want everyone to know that my love for him will live on as long as I can share his story, and hope that his spirit brings hope to those who have lost sight of what's important in life.

September 1st, 2010 - Three months

2010-09-01T14:43:00.000-07:00

How did three months go by so fast, and at the same time, so agonizingly slow?

Summer is a time when life is thriving and all we've had have been dark clouds floating over our heads. A tiny flame blown out too soon.

First, we learned it was okay to smile and then to laugh. We've been able to appreciate the miracle that is Sadie more and more as each day has passed.

We learned that there is no such thing as closure and that hanging white sheets over a bassinet and crib do not erase the events that led us to today.

We know that grief is out of our hands. It comes in waves and drags back out to sea our tears and pain like grains of sand.

I've had to watch my daughter slowly come to realize that her brother isn't coming home. I've comforted her in the night, when she wakes up in tears asking for her beloved Sawyer.

I have watched my husband stand so strong, going back to work so soon after - only to have the grief sneak up and rest itself on his broad shoulders. I have comforted him when I hear his quiet weeping coming from our bedroom in the darkness of night.

With the bad, surprisingly, comes the good.

Every day we hear a friend tell us of a butterfly or a rainbow, a hawk soaring in the sky or a beautiful sunset and how the moment spoke to them - Sawyer's spirit is everywhere.

I have discovered new friendships that will never die. Women with who I can be so painfully honest. Women that share my pain. Women that have loved and lost - and continue to love in the face of adversity.

Sawyer's time on earth was too brief. That time, however, is out of our hands. Where he left off, we have begun to pick up the pieces of our broken hearts and started our journey down a road dimly lit by the light of hope.

We love you, our sweet angel.

"An Exact Replica..."

2010-08-31T15:16:00.000-07:00

I just finished reading "An Exact Replica Of A Figment Of My Imagination" by Elizabeth McCracken. I bought it after reading the post from a BLM blog about how much she enjoyed the book and felt connected to the author.

I have to admit, the first two or three chapters were very hard for me to follow. She is living in France at the time of her son's stillbirth with her European husband. So there was a little bit of dialogue that was difficult for me to follow (and the fact that they named their baby Pudding), but once I got past that, this book consumed me and I loved Pudding too.

Here are a few entries from it that I found particularly moving and could relate with very well:

"I thought stillbirth was a thing of history, and then it happened to me, and yet now when I hear of a baby dying I'm just as incredulous. You mean they still haven't figured this out?"

"I want to hear about every dead baby, everywhere in the world. I want to know their names, Christopher, Strick, Jonathon. I want their mothers to know about Pudding. The dead don't need anything. The rest of us could use come company."

"When I returned for every successive appointment, the pregnant women in the waiting room made me sad: there they sat in the present, dreaming of the future. I couldn't bear watching. I wanted a separate waiting room for people like me, with different magazines. No Parenting or Pregnancy, no ads with pink or tawny or pearly smiling infants. I wanted Hold Your Horses Magazine. Don't Count Your Chickens for Women."

I've also found great comfort in the books Still by Stephanie Cole and Waiting With Gabriel by Amy Kuebelbeck.

What books have you read that helped with your grief or at the very least - reassured you that you weren't completely alone in this? My Amazon account is open and waiting for suggestions.

A special day for Sawyer

2010-08-24T20:57:00.001-07:00

Tomorrow's broken promise

2010-08-23T20:16:00.001-07:00

Tomorrow is Sawyer's due date.

August 24, 2010.

I remember sitting up after my ultrasound in late December, and thinking to myself, "I can't wait to meet you!"

I was so happy. My chest swelled with so much love at that moment. I knew I was pregnant and my little baby was so safe inside me.

Tonight, I'm up late and think about all the things I'm missing. It's easy to do when I think back on our time with Sadie. It seems like yesterday when we brought her home, after weeks of worry in the NICU. We were stuck in traffic coming home from Chicago, and I didn't care. It meant a long ride home, and I was sitting in the back with her and couldn't stop touching her soft face and smiling. No wires, no tubes - just our little miracle - all to ourselves.

Some days I think I kid myself. My head can wander to that place if I let it. The place where Sawyer is just in the hospital, and he'll be home soon. The place where we're worried, but happy. Because he's going to be okay.

Instead I'm here in a world without my precious Sawyer.

It hurts my heart so much to know that I'll never feel his skin against mine. I will never know how beautiful it would have been to nurse him against my breast. I cry myself to sleep at night, so sad that I never got to see his eyes. Oh, how I wish I could just have looked into them for one second.

I go through moments where I would do anything to be with him. I want to curl up, close my eyes and just be blanketed by his love. I want to die, I want to live. My heart has been shattered - I feel like I've only been able to put together some of the pieces. So many are still scattered all over. And sometimes, it takes so long to find one just one.

Grieving mother's brain

2010-08-23T14:57:00.000-07:00

We have no water in the house, no bread. I assumed we had things like cheese and peanut butter on our last shopping trip.

But, I knew we needed vanilla extract for baking. Because it kept popping up in my head.

So I bought the vanilla.

When I got home, I put it in the pantry - next to the four other unopened boxes of vanilla extract that I've bought in the last three months.

So, who else stands in the middle of the store, trying to remember what in the heck you were supposed to go there to buy in the first place. Or who stands in front of an open fridge or cabinet? Wondering what you were supposed to be doing, but never remembering?

Wishful thinking

2010-08-21T18:31:00.000-07:00

Things I will never do again if I ever get pregnant.

Wish on stars

Knock on wood

Put the crib up

Wash and fold baby clothes

Keep the baby's name a secret

Throw pennies in a fountain

Assume everything is going to be okay

Diagnosis hitting hard

2010-08-19T20:46:00.000-07:00

I found an article regarding Sawyer's congenital heart defect - Tetralogy of Fallot with Pulmonary Atresia and VSD.

Here is a link - http://emedicine.medscape.com/article/899368-overview

I guess I'm mostly posting this for other CHD moms out there to see how severe Sawyer's heart defect was and that his chances of survival were very grim.

Some things that stood out to me, made me cry - brought so many more questions to a head that's already swirling with a million of them.

Pulmonary atresia (PA) with VSD is considered the extreme end of the anatomic spectrum of tetralogy of Fallot. Tetralogy of Fallot with pulmonary atresia is worthy of separate consideration. Because of the wide variability of pulmonary blood supply, diagnosis and surgical management of tetralogy of Fallot with pulmonary atresia is more difficult than that of classic tetralogy of Fallot.

The Baltimore Washington Infant study reported an incidence of 0.07 cases per 1000 live births. This condition accounts for 1.5% of all forms of congenital heart disease and 20% of all forms of tetralogy of Fallot.

Patients with tetralogy of Fallot and nonconfluent pulmonary arteries are subject to increased morbidity and mortality related to the frequent need for multiple cardiac surgeries.

Many patients with tetralogy of Fallot with pulmonary atresia have associated syndromes and extracardiac malformations.

Sawyer had NONE of these - NONE!! And I had none of the maternal associations either

◦Conotruncal cardiac malformations associated with a chromosome arm 22q11 deletion have been incorporated under an acronym of CATCH22 (cardiac defect, abnormal face, thymic hypoplasia, cleft palate, hypocalcemia, microdeletion of band 22q11). Patients with tetralogy of Fallot with pulmonary atresia have a higher incidence of this syndrome than patients with classic tetralogy of Fallot. The prevalence of deletion 22q11 is 16% in tetralogy of Fallot with pulmonary atresia with confluent pulmonary arteries and 41% in patients with tetralogy of Fallot with pulmonary atresia and multiple aortopulmonary collateral arteries.6 Surgical mortality has been reported to be is greater among patients with tetralogy of Fallot with pulmonary atresia with a 22q11 deletion compared with patients with normal chromosomes, perhaps due to depressed immunologic status or other factors.7 ◦Other syndromic associations include the vertebral defects, anal atresia, tracheoesophageal fistula with esophageal atresia, and renal and radial anomalies (VATER) syndrome; the coloboma, heart disease, atresia choanae, retarded growth and retarded development and/or CNS anomalies, genital hypoplasia, and ear anomalies and/or deafness (CHARGE) syndrome; Alagille syndrome; cat's eye syndrome; Cornelia de Lange syndrome; Klippel-Feil syndromes; and trisomy 21.8 ◦Maternal diabetes mellitus; maternal phenylketonuria; and maternal ingestion of retinoic acid, trimethadione, or sex hormones increase the risk of conotruncal abnormalities. Infants of mothers with diabetes mellitus have a 20-fold higher risk than infants of mothers without diabetes mellitus

Triggers in the most unexpected places

2010-08-17T23:25:00.000-07:00

I told a few close friends about this today, because I pretty much had one of those moments where I thought I was completely crazy.

I was with Sadie at Walmart (of all places) and we were shopping for veggies for a homemade pizza I was going to make later that night. I only had a $20 bill with me, so I had to be mindful of how much everything was costing us. I grabbed some green peppers, then a bag with three onions and weighed each one to get an idea of the price.

When I put the onions on the scale, it tipped just over two pounds. Actually, they weighed exactly 2lbs, 2oz - Sawyer's birth weight.

I was just standing there, holding the bag as it swung slowly, back and forth.

These stupid onions. These god-damned stupid onions!

I stood there with the bag in front of Sadie, tears in my eyes, asking her "How can these weigh as much as Sawyer? HOW?"

So I threw one back. I didn't want that last onion.

Triggers.

Mine were three onions today.

Happy holidays - not so much

2010-08-17T10:33:00.000-07:00

I know it's only August, but who else is dreading Christmas and the holidays? I know I am.

We're already trying to figure out our escape plan.

I don't even want to pull out our decorations, but for Sadie's sake, we'll put the tree up this year. And that's probably all we'll do.

The reason behind it

2010-08-15T18:55:00.000-07:00

This past weekend, Erik and I were able to get away - alone - for a few days. It wasn't so much to escape our lives, as we are constantly thinking about Sawyer - but to simply be together, and grow closer through our loss and grief.

On Saturday, we decided to make reservations for dinner at a rustic lodge inside White Pines state park here in Illinois. It was straight out of a postcard - walls and beams made of logs, a table next to a giant stone fireplace and delicious "down-home cooking."

There was a wedding reception outside in a beautiful foyer between the restaurant and gift shop and Erik noticed a white, horse-drawn carriage taking guests from the wedding for rides through the pine forest. He jumped up in the middle of dinner to book a trip around the park before the driver and his horse packed up and left for the day.

Excitedly, we paid our check and hopped into the buggy for the last ride at sunset (my first carriage ride ever!). Our driver was a friendly man in his 60s, lean and tall with a light southern accent - he introduced himself to us as Jim.

Throughout the ride, we all talked and shared short stories of our lives. Where we were from, how long we've been married...

And then the topic of children popped up. The first time I had been asked since Sawyer died - "Do ya'll have any children of your own at home?" Jim asked us.

I told him we had a beautiful little girl that kept us quite busy. Then, hesitated for a moment, and said that we also had a son who had died in June.

Jim listened as I briefly talked about Sawyer and I noticed that his stature had shifted - and for some reason, I knew he understood.

He told us that he had two children of his own - a son and a daughter - grown with children of their own. And then he told us about his first child - a boy, "born sleeping" in 1976.

As the sound of the horse and carriage moving through the woods echoed off the canyon walls, he told us all about the baby that he and his wife lost. He said that things happen for a reason, but what that reason might be, we'll probably never know.

He offered us his condolences, as we did for him and I thought about how beautiful the moment was. That we could share such an intimate part of our lives with a total stranger would have seemed crazy just a few months ago.

And now, it will be a memory that I will treasure in my heart for a long time to come - and know that somehow, Sawyer brought us here to that moment...

For a reason.

The Nothing

2010-08-13T00:35:00.000-07:00

Sadie knows Sawyer.

She knows he is a baby and knows that he is her brother. She is a big sister, with no sibling. An only child to most people.

Sadie keeps asking for Sawyer. She doesn't ask if he's coming home, instead - she demands.

"I want my baby brother! I want Sawyer!"

Her demands come with tears and anguish. Do you know what it's like to see your two-year-old child look at you with that kind of unimaginable hurt in her eyes?

Sadie sees other children with their baby brothers or sisters and wants to be with hers.

She loves Sawyer so much. I can tell you for a fact that she hugged and kissed him more than any of us ever got the chance to. Constantly lifting up my shirt to hug and kiss her baby brother.

She was full of the same anticipation that we were bursting with. And now she's full of nothing. The nothing posed a lot of questions at first, and now, the nothing wants what it can't have.

God, I wish she could have seen Sawyer. I wish she was there to hold him. To say hello and to say goodbye.

We miss you Sawyer. Sadie loves you so much. She was going to teach you so many amazing and wonderful things. We were all going to marvel at it.

And we were going to live happily ever after.

A letter

2010-08-13T00:29:00.001-07:00

A mother came to me. She lost her son - same heart defect. Same tragic ending. She asked me about Sawyer. This is what I wrote.

We were told Sawyer had Truncus Type 4 - which is also classified as a severe form of Tetrology of Fallot. He also had pulmonary atresia - which meant - his pulmonary artery never formed. It makes me sick to my stomach.

I didn't know any of this. When I was 24 weeks along, my fluid was very low - so low that they couldn't see the heart. So I was put on bedrest and I waited. Unfortunately, I didn't wait very long.

At 28 weeks, my water broke - then my placenta detached - I started to bleed out. I was rushed in for an emergency c-section and was not awake. Sawyer was born - limp, no heartbeat.

Somehow, they managed to revive him - only to have the cruel hand of fate deal us a bad card. The day after he was born - they told us about his heart. And how there probably wasn't anything they would be able to do. So we waited.

That night, Sawyer got worse. And worse. Finally, nothing they could do would help him any more, and we took him off life support. He died in my arms while I cried, my tears fell upon his face. He was gone.

I don't understand it. I still can't figure out how a baby made with so much love could have a broken heart. I've cried so much that the tears have made a permanent path down my cheeks. And they are huge tears. Tears only a mother cries for the baby she doesn't have in her arms.

Every day, I carry it all, while carrying him.

Grievance

2010-08-11T07:18:00.001-07:00

I was having a chat with another babylost mom last night and she brought up the topic of things she now hates.

There is a dresser, full of her son's baby clothes that she has yet to put away - there is hate there. In preparation for a long stay in the NICU she bought tupperware to conveniently bring food back and forth to the hospital. She hates that too. At one point, she said that it sounded silly to hate tupperware, but - I get it.

I hate going into my daughter's newly painted room. It is a bright and sunny yellow. The day before Sawyer was born, I helped my husband tape the walls because my dad was coming over the next day to paint. It was going to be the baby's room and Sadie's room. And the color we picked was a beautiful sea green.

So, in my closet, sits this bucket of paint. Oh, I hate that bucket.

I bought these cute white baskets - with a checked green liner - just for Sawyer. I had them full of his things, neatly arranged in our linen closet and filled with his little ducky towels, blue bath rags, burp cloths and blankets. I hated those baskets so much that they were one of the first things I begged Erik to take and hide behind the basement stairs after Sawyer died.

I hate the minivan we bought because our family was growing. Now, the seat next to Sadie sits empty. It's ghostly almost.

I hate how Sadie's bedroom feels so empty to me now. There is supposed to be a crib, a changing table, a baby swing. It looks almost barren with just her bed and tall, narrow dresser.

People say that hate is such a strong word. But when your grief takes over you, the hate comes along with it.

Once upon a time...

2010-08-10T21:40:00.000-07:00

Sadie woke up crying this morning.

I was in the shower and could hear her on the monitor. I turned off the water and stepped out to dry off while her crying continued to get louder.

I quickly wrapped a towel around me while my mommy instincts kicked into overdrive and I rushed into her room.

I asked her what was the matter and she was sitting straight up in bed, trembling and kept repeating to me over and over, "I want my baby brother, I want Sawyer."

Since this has all happened, we've tried to be very gentle with her in explaining what happened to Sawyer - while being very honest at the same time. She asks me to tell her the story of her brother and I tell it in the only way a two-year-old can comprehend...

Once upon a time, there was a little girl named Sadie. And she had a Mommy and a Daddy and a baby brother named Sawyer. One day, God saw that Mommy and Daddy loved each other so much, that he put a baby in Mommy's tummy. One day, Mommy and Sawyer got very sick and they drove in the car to go see the doctor. Mommy went to sleep and the doctor took Sawyer out of Mommy's tummy. Mommy got better, but Sawyer was still very sick. Soon, God came to Sawyer and said it was time to come to heaven. And Mommy and Daddy were there when Sawyer became an angel. He is watching over you and he loves you very much. And now, Sawyer is forever an angel in heaven's sky. The end.

Over the past week, Sadie and I have visited a some friends with little babies at home. It's also been the first time that she's been around other babies and hasn't pointed to them and asked if they were her "baby brother!"

I think she finally understands that the other babies aren't Sawyer, and that Sawyer really is gone and that he's not coming home. I tried so hard this morning not to cry in front of her, but I couldn't hold back the pain of seeing my little girl so upset and missing her brother so much.

I wish she could have held him. I know she would have loved every moment of having him here in our lives. She is an amazing big sister. And she loves her Sawyer so much.

Fear takes over

2010-08-08T20:05:00.000-07:00

I am afraid.

Afraid to get pregnant again and afraid for every pregnant woman I see. When I look at pregnancy now, all I see is a ticking time bomb.

Mothers walking around, their faces glow and beam. And I think to myself, you have no idea.

One of the most beautiful and precious gifts of life is tainted. My body failed me, and there is no reason why. My son is buried and my arms are empty.

I feel everything hitting me so much harder now. I've heard that it gets better, but I'm still waiting and waiting.

Sadie plays alone. Sawyer's crib is hidden behind the stairs with a white sheet draped over the top. It shouldn't be like this!

I've been focusing a lot of my anger into organizing a walk for mothers to honor and remember their babies that have been taken too soon. I can't just sit here, idly waiting for life to get better. And I'm trying so hard to just try.

And again, life goes on - and I'm still trying to adjust to the "different."

The first "Sawyer's Heart Memory Box"

2010-08-07T20:37:00.000-07:00

Here is the first memory box made in Sawyer's honor. The news of the baby and family that were in need of this came so quick, that I had such little time to put it all together.

I wanted them to have something special - something like we had. It's cruel enough that we have to leave the hospital without our babies, but to leave with nothing would be the worst thing of all.

So, included in the first basket was a plaster kit for the baby's tiny feet. A beautiful, pink blanket, "When Hello Means Goodbye," a box of "no-more milk tea" and a book that we read to Sawyer named "Sleep Baby Sleep."

I know this was our first box, and I didn't have much time to put it together (and trust me, I'm going to be more prepared from now on) - but what types of things did your hospital or bereavement counselors provide you with when your baby died? I want to make these even bigger and better for the future and am open to any suggestions.

xoxo ~ Michelle

Fly high

2010-08-05T10:59:00.000-07:00

A beautiful couple that attended the same birth class as we did, lost their baby girl this morning.

I don't know details. And really, does any of that even matter?

I am calling on all of you for prayers. Pray as hard as you can for this mother who has yet to deliver her daughter. Pray for her pain, her anguish and the soon-to-be-overwhelming grief that will consume her.

Pray for her to have strength. The worst days are yet to come.

Pray for her to have comfort. It is all she will have to hold on to.

Please, share this blog with as many people as you can. I want her to feel our prayers, thoughts, vibes - whatever it is that you do - please give them to this mother who is living the nightmare that is infant loss.

I will carry you

2010-08-01T19:13:00.000-07:00

Overcome with exhaustion, I decided to lie down late this afternoon. I fell asleep almost immediately and had a dream that was so vivid and alive that I woke up instantly when it had ended. Stumbling - consumed with fatigue - I had to grab my journal off the dresser and write. I didn't even know what I had written until I finished.

It was a moment where the words poured out of me - rare - and one I won't forget...

August 1, 2010
2 months since you've been gone.

Days and days with no sleep and I finally just crashed, collapsed.

I don't remember falling asleep - it was instant.

I had a dream. Same life as I live now. Sawyer is dead - life has moved on - but we never buried him. It was my choice.

Wherever I went - I would take his tiny body and carry it with me.

He wasn't anything awful to look at. It was just, simply, Sawyer - and he was dead. And I didn't care - and I loved him - and I carried him around to prove it to every single person that could see me.

And as I furiously write, to not forget, I realize, that is exactly what I have doing the entire time - this unthinkable image is real.

You might not see Sawyer - but he is here - and I am carrying him with me everywhere I go. Every single moment of every single day for the rest of my life.

And this dream has helped me to realize that he really is with me - and it is a beautiful burden that I must endure.

And life goes on - and I carry Sawyer through it all.

BitterSweet. But not in that order

2010-07-30T22:31:00.001-07:00

We discovered tonight that Erik's mom had two pictures of Sawyer on her camera. Grandma Carolyn and Aunt Sarah had come to the hospital the day after Sawyer was born to meet the first grandson of the family.

At the time, Erik was home - grabbing a quick shower and picking up some essentials that I needed for the hospital stay. I had just told my nurses to put a sign on my door to direct visitors elsewhere because I was beyond exhausted and hadn't sleep in over two days at this point.

So there were Carolyn and Sarah.

They went to the NICU to meet Sawyer for the first and last time. And they took two pictures.

Two pictures of Sawyer I never knew existed. Two pictures of my baby getting a test done - that within an hour - told us we were going to lose our beautiful son.

Thank you God for this. I didn't know they were doing an echo of Sawyer's heart when I decided sleep was the best thing for me at that moment in time.

And now I have these pictures. I can be there in that moment, and cry.

A million pieces

2010-07-30T02:24:00.000-07:00

I met with a good friend for dinner tonight. And the entire time, I struggled to be "normal."

And by normal, I mean the old me. I don't know who I'm trying to fool more - myself? Or my family and friends?

The moment Sawyer died, it was all different. In an instant, we were blindsided with our new existence. We had no choice but to take it upon ourselves to carry this grief, and all the change that comes with it, upon our backs.

Now I'm left with the remnants. Trying to pick up the pieces of my life that broke into a million shards of glass. Each one is sharp and jagged, bringing with it pain while leaving a new scar on my heart.

And the pieces...

They never fit back together again the way they're supposed to.

Cry

2010-07-28T07:33:00.000-07:00

I've cried every day for eight weeks. It's not that I keep track, I just know there hasn't been one day that I haven't broke down. When did you have that first "tear-free" day? I want mine.

Eight more weeks

2010-07-25T07:32:00.000-07:00

On Tuesday, I would have been 36 weeks pregnant with Sawyer.

My doctor said she would have brought me in tomorrow to start an induction. I anguished over this day and that number for such a long time - even before Sawyer was born. Looking back on my blogs from May, my goal was to make it to 28 weeks. The actual day he came into the world.

I knew I was never going to make it this far. I talked to my nurse early last week and she said that she's "been doing this for 23 years, and there are the women we remember. The women like you who tell us the entire pregnancy that they know something is wrong. And they're always right."

I wish I realized it in my mind sooner. When I went to all those appointments week after week I would say the same thing over and over again - I didn't feel right.

I guess it wouldn't have mattered if Sawyer was born on June 1 or July 27 or August 24 (his actual due date). I know what the neonatologist said, "Even if he was full-term, the outcome may not have been much different."

But, to me the past eight weeks have been a blurry, painful nighmare. I could have had him eight more weeks. That would have been eight more weeks to get to know my baby. Eight more weeks to pinpoint what Sawyer's favorite food was. Eight more weeks that he would have felt my pure love and heard my heartbeat as we both waited, unknowingly, for the same end.

Sawyer's Angel Day

2010-07-21T07:30:00.000-07:00

Sawyer's Heart

2010-07-20T07:29:00.000-07:00

Today we met with Sawyer's neonatologist to get a better understanding on his short life and the heart defect that took our baby too soon.

A healthy heart has four chambers. Between two of those four chambers, the left and right ventricles, there is a wall that separates the blood. In Sawyer's heart there was a "large subaortic anteriorly malaligned VSD" - simply put - a large hole where there was supposed to be a wall.

The American Heart Association defines a VSD as "A ventricular septal defect (VSD) is a defect in the septum between the right and left ventricle. The septum is a wall that separates the heart’s left and right sides. Septal defects are sometimes called a “hole” in the heart. It’s the most common congenital heart defect in the newborn."

Sawyer's VSD, the doctor explained, was large (between 5.6 to 6.0 mm).

Healthy hearts also have two main arteries that take blood to different parts of the body. The aorta, which takes oxygen-rich blood to all parts of the body - and the pulmonary valve (which branches into two arteries), which carries oxygen-poor blood to the lungs to become oxygenated.

The doctor went on to explain that Sawyer had "Pulmonary Atresia" - sadly, this meant that his pulmonary artery/valve was completely missing.

The American Heart Association defines Pulmonary Atresia as "a congenital malformation of the pulmonary valve in which the valve orifice fails to develop. The valve is completely closed thereby obstructing the outflow of blood from the heart to the lungs."

To make up for this catostrophic defect, Sawyer's heart formed several small "MAPCA's" which are small arteries that develop to supply blood to the lungs when pulmonary circulation is underdeveloped (Pulmonary Atresia in Sawyer's case).

His official diagnosis was "Tetrology of Fallot (Pulmonary Atresia) Truncus Type IV". Again, here is a better definition to help you understand the severity of Sawyer's heart defects.

"Tetralogy of Fallot with pulmonary atresia is a severe variant in which there is complete obstruction (atresia) of the right ventricular outflow tract, causing an absence of the pulmonary trunk during embryonic development. In these individuals, blood shunts completely from the right ventricle to the left where it is pumped only through the aorta. The lungs are perfused via extensive collaterals from the systemic arteries, and sometimes also via the ductus arteriosus."

All of this put together, meant that Sawyer's little heart - as hard as it was working and even with the maximum amount of help that the doctors and nurses could give him - would never function well enough to survive. If he had been full-term, there may have been surgical options for him, but this would have been if he could ever have gotten stable enough to handle open-heart surgery - to which the neonatologist explained "the outcome may have not been much different."

Sawyer was a very sick baby. With his prematurity and heart condition combined, there weren't any options for our son.

Over the past few weeks, I have felt immense guilt over the choice that we made to take Sawyer off of life support. Today, his doctor explained to us that it was only a matter of time before his body gave out. They were doing everything possible to keep him stable, and even then - his stats continued to drop rapidly.

The doctor told us something today that I will never forget as a mother. She said "There was only so much we could do and what he really needed was you."

And that was it. Erik and I quietly cried as the realization of what happened to our baby boy was finally understood.

No parent should ever have to sit there and hear the things we were told today. It was painful and heartwrenching to fully understand and comprehend just how serious and fatal his congenital heart defect was.

Our journey is just beginning. And as we begin this walk down a new road in our lives, our hope is to honor Sawyer's memory by working to fund research on all congenital heart defects and premature birth.

Again, thank you all for the continued love, prayers and support. We need them now more than ever.

Love - Erik, Michelle and Sadie Williams

"I will always be there for you"

2010-07-18T07:28:00.000-07:00

I light a candle every night for you next to all of your beautiful pictures. I pray to you to come to my heart when I'm sad. I hope you aren't lonely, and know that I am a part of you and that I am always with you wherever you go.

I love you so much Sawyer that my arms hurt. They are so empty without you in them. My chest is so heavy with grief, that when I cry, it hurts. I can hardly catch my breath when I think of you, and that is almost always.

The little things remind me of you. I notice so much more than I ever did before. The dew twinkling on the grass in the morning sunlight, beautiful clouds floating across the horizon and all of the beautiful summer sunsets. Everywhere I look, I find beauty - and in that beauty - I see your face.

Your big sister asks about you a lot. I spend so much time wondering what the two of you would have been like together. It breaks my heart to see Sadie playing alone in the park or here at home. I know you're watching over her now - but my heart aches to know that the two of you would have been the best of friends.

Daddy thinks of you just as much as I do. He wanted to do so much with you - camping, fishing and cub scouts. He had so many hopes and dreams for your life. He wanted to be there for you because his dad wasn't there for him. He loves you so much Sawyer. When you died, he held you in his arms, looking out the big hospital windows - talking to you about the construction workers down below, singing "You Are My Sunshine" into your tiny ears.

Every day we go on. And it looks like everything is the same - yet everything is so different and so sad.

I am going to sleep now. I will close my eyes like I do every single night and pray to you, hoping for dreams together. Know that I will always be here for you Sawyer. I love you.

"No matter where or how far you wander - For a thousand years or longer - I will always be there for you - Right here with you."

Sawyer's fight

2010-07-18T07:27:00.000-07:00

When I was pregnant, Sawyer was sick.

I knew he was sick in my heart, but I think it took a while until it caught up to my head.

Right before we discovered that my amniotic fluid was low, I started to share with Erik my thoughts on Sawyer's movement. How he didn't move right. I know that every pregnancy is different, and that's what everyone kept telling me. Reassuring my frantic brain that Sawyer wasn't like his big sister.

I wasn't trying to scare Erik or myself, but something wasn't right. Even after my doctor told me he wouldn't move much with the low fluid, I knew he wasn't okay. He hardly kicked, and instead squirmed. That's the only way I can describe it.

Sawyer was breech the entire time too, always seeming to try and climb up as high as he could. I like to think that he was just trying to get close to my heart.

Some days, after I went on bedrest and was home all alone while Sadie was at my mom's house, I would wake up in a sweat. Sawyer wasn't moving. At all. I never told anyone about any of this. Not even Erik. I just didn't want people to think I was complaining or worrying about nothing because that's all I had time to do.

I would go straight to the kitchen and drink a tall glass of juice, that always got Sadie moving so fast it felt like she was dancing inside of me. And even after 20 or 30 minutes, still nothing from Sawyer. Then when I was about to think the worst, he would slide a leg or his arm across the front of my stomach. It almost felt like a wave to let me know he was okay.

The time when he would move the most was when I would take a bath. So I took them almost twice a day, every day. Just to be reassured that he was happy and healthy in there.

On May 27th, for the first time ever, he woke me up. It took me a few minutes to realize, that he had the hiccups! That was the first and last time Sawyer had them. I was so excited that I texted Erik to tell him. I felt - at that moment - that Sawyer might just be okay. And maybe it was just taking him longer to adjust to life inside of mommy.

Five days later - and after one trip to L&D triage because I just didn't "feel right," Sawyer was born. Not even a day and a half after his birth, Sawyer died in my arms.

People don't realize that Sawyer fought his entire life. The heart is formed within the first five weeks and it was then that Sawyer began his fight to survive. Knowing everything we know now, it's amazing to me that Sawyer lived as long as he did. And that he wasn't born until 28 weeks.

He held on. So tiny yet so strong.

Walking through a nightmare

2010-07-17T07:26:00.000-07:00

I swear to God, I've lost my mind.

Last week, Sadie and I took a nap together and the next thing I know, my neighbor is standing next to my bed, letting me know that "They found Sadie."

She wriggled out of my bed, opened my bedroom door then opened the sliding glass door and was found outside in the street. Yeah, you read that right. In the street.

I was so exhausted, so drained, so done with everything. I didn't even know she had snuck away. I didn't even hear the doorbell. Or hear my phone ringing - and it was right next to my head.

Taking care of Sadie, some tend to think, is a welcome distraction. It is in some ways, but most of the time, it isn't. Taking care of a two-year-old is nonstop. And when you have to put someone else ahead of yourself - you can't get better.

I feel like Erik's the lucky one. He gets to leave every day and go to work. He has three hours to himself on the train. I have no hours to myself. Ever.

Don't get me wrong, I don't want people to think I don't care about Sadie, because I do. But, I can't be the best mom for her when I'm a complete wreck. And that's an understatement.

I'm calling a counselor on Monday to set up my first appointment. I need this. I never thought I'd understand what it would be like to be insane. But I get it now. I know insanity.

My head and my heart are doing these things that I can't control. I'm alive - but the world is rushing right past me. And I'm left alone to walk through this nightmare.

My baby

2010-07-15T07:26:00.000-07:00

Last night, I couldn't sleep. Tuesday was a difficult day and the reality of what happened really didn't sink in until yesterday. My arms were heavy, aching for Sawyer. The massive migraine that I had the week Erik went back to work, suddenly came back with full force. I was instantly brought back to the pain I had felt nearly a month ago. One step forward, one hundred steps back.

I came to bed late. Erik was already asleep and I had just spent the last hour standing in front of Sawyer's pictures, crying. Searching for any sign that he was with me. Wanting him in a way only a mother who has lost a child can understand.

Feeling so overwhelmed with sadness, I crept into Sadie's room to hold her as she was sleeping. Stroking her cheek and laying my head on her chest. Listening to her heartbeat.

My headache at this point was at its worst, so I climbed into bed and asked Erik to get me a compress to alleviate the pain. When he came back, I lost it. I couldn't stop crying. Over and over again I kept saying "My baby, my baby..." and thru the tears I prayed to Sawyer. Sometime after that I fell asleep.

In the past few weeks I have made new friends. Mothers like me who have lost a baby. Friends that I am grateful for. Megan is one friend I have connected with very well. We both lost our babies around the same time and have found much comfort in knowing that we aren't alone in a world that seems to go on when we are so stuck in our suffering.

She sent me this today:

Everyday, I question myself of what heaven is like for children. My mom asked me the other day "do you think there is a playground in heaven?" I didn't respond as I only tried to imagine what it would look like. After she asked me that, I began thinking of who Wyatt would play with, and I thought about Sawyer and Whittney's son, Owen. All day on Tuesday, I continued to imagine the three of them hanging out together and playing on the playground of heaven.

All of this is probably why I dreamed what I did. But my dream was about this woman who came to visit (I never saw her face), but she had this little baby boy with her. He was in his car seat and she put him up on the counter so I could see him. The dream is basically a blur from there, but I remember this baby like it was real. The little boy was probably about 2 months old, he had a perfectly shaped head, and green eyes. I remember asking the mother if I could hold the child and she said I could. As I was picking him up out of the car seat, she told me his name was "Sawyer".

My baby.

Will I ever understand

2010-07-14T07:25:00.000-07:00

Today is a bad day.

Everything is swirling around in my head. I think visiting the hospital yesterday brought so much back to the surface, even brought back that feeling of hope before Sawyer was born - that I feel that he's almost with me still.

At night, when I lay in bed, I try to hold my tummy the same way I did every night when I was pregnant with Sawyer. But there is nothing there. Even though I can still feel him kicking inside of me, he's gone.

I just feel so sick to my stomach, knowing he struggled, even before he was born. The only comfort I have is knowing that he had to have felt me holding and cradling him each night.

How can a baby made with so much love have a broken heart?

"Our story"

2010-07-13T07:24:00.000-07:00

Today was my post-partum visit with my MFM doctor. We learned more about Sawyer and a lot more about what also happened to me during the pregnancy and delivery.

First things first - "Dr. Digi" sat down and went over Sawyer's brief life in the NICU and we were informed that he had a severe form of Tetralogy of Fallot - Truncus Arteriosis Type 4. We are going to get a much more detailed explanation from Sawyer's doctor when I meet with her next week - but from what we were told, his condition was not only rare, but fatal.

Dr. Digi also explained to us that Sawyer's heart defect and the issues with the pregnancy (premature rupturing of the membranes, low amniotic fluid, placental abruption) were two completely separate things. The fact that both these things occured simultaneously was extremely rare. Basically, we had a better chance of winning the lottery.

So, to try and figure out why I had such premature labor, Dr. Digi is doing a full thrombophilia work-up to determine if there were any underlying causes that we aren't aware of. I'm hoping that this bloodwork finds something because at least we could have an answer and know what we were up against if I get pregnant again.

What does all of this mean for the future? A lot.

I'm at a much higher risk of having premature labor and having a baby with congenital heart defects. But, my doctor and I are going to meet again after more testing over the next few months to determine a plan of action for the next pregnancy.

At the very least, today's visit was the furthest thing from the nightmare I envisioned it to be. I was so nervous when we arrived and was shaking so bad that I could barely sign my name when we first arrived.

My doctor's receptionist - Karla - stood up, reached over and hugged me and said how sorry she was. And we cried together.

It was at that moment that I felt "home" - My nurse, my doctor, the residents - everyone in the Maternal Fetal Medicine department have been there since the beginning - and all of them were here for me in the end.

The dream

2010-07-12T07:23:00.000-07:00

Nearly three years ago, when I was pregnant with Sadie, I had a dream - that is actually more of a nightmare. It was so vivid and realistic, I remember waking up my husband and calling my sister to tell them about it because it had shaken me up so terribly.

There isn't much to it...

Erik and I were in a room with dark paneling on the walls, wood floors that creaked under our feet every time we took a step. It was an older house but we were in a quiet, office-like setting and a man was leading us around the room.

The man was a funeral director. And Erik and I were there to pick out a casket for our baby that died. We picked a white one.

Sawyer's casket was white too.

Sawyer, everywhere

2010-07-10T07:22:00.000-07:00

I appreciate when people tell me they feel Sawyer near them. I truly believe his spirit has touched so many, and I love when friends and family share their moments.

My sister, about a week after he died, said she saw a beautiful hawk by her home and it kept flying all around her as she went on a walk. She called and told me it reminded her of Sawyer.

Karlene told me about a beautiful sunset, and another friend said a rainbow that appeared out-of-the-blue instantly made her think of our beautiful baby.

I love whenever someone shares these moments with me and Erik. I hope it never stops.

Mary Todd

2010-07-10T07:21:00.000-07:00

We're in Sprinfield on a weekend trip and visited the Abe Lincoln Museum with Sadie. This is the second time Erik and I have gone together and on our first trip here, I was pregnant with Sadie.

The one thing I remembered most from that trip, and not just in light of recent events, was Mary Todd.

She lost her three-year-old son when she and Abe lived here in Springfield, followed by another son while they lived in the White House. And then another son after all of that.

Mary Todd had one living son left after all of that grief. All of that unimaginable heartache and pain. And her only living son had her committed, called her an insane, crazy woman. Well can you blame her?

To me, Mary Todd was a woman of unimaginable strength in the face of adversity that almost no one could ever imagine in a lifetime.

So there we were, looking at a figure of Mary Todd - adorned all in black, sitting next to a dark window - raindrops reflecting off her grief-stricken face.

And I wept quietly.

The last time...

2010-07-09T07:20:00.001-07:00

When you lose a child, the little things you do can sometimes become ritual. You have to do these things in order to go on, to survive your ordeal.

Almost everything in the house is a "last time."

We're about to head down to Springfield for a weekend trip and as I grabbed the camera and the charger I thought to myself, "The last time I used the charger, was in the hospital with Sawyer."

It happens almost constantly. The last time I wore this shirt I was pregnant. The last time we ate here I was pregnant. The last time I heard that song I was pregnant.

And it goes on and on. Every day.

Madison's swing

2010-07-09T07:20:00.000-07:00

I can't escape it.

Sadie wanted to ride the swings at Lion's Park, and I notice something as I begin to put her in the swing. A green sign, screwed into the front of it that says,

"In memory of baby Madison. September 27th, 2009 - January 9th, 2010"

Are. You. Kidding. Me?

Whoever baby Madison is, I'm sorry. I'm so sorry for her mommy and her daddy. And, I'm also sorry for myself.

In a way, it's a beautiful little tribute. Every time a new baby rides that swing, and the wind blows through their hair, maybe baby Madison's spirit is right there with them. That's what I hope.

Stuck

2010-07-08T07:19:00.000-07:00

I want to scream. I want to pull my hair out. I want to dig my nails into my skin until I bleed.

My baby died. He's gone. My beautiful Sawyer is forever an angel. And there's nothing I can do about it. I feel like the world should stop and can't understand how life can go on when I'm so stuck in this pain and in this place.

Empty Arms

2010-07-08T07:18:00.000-07:00

Erik and I went to our first support group meeting last night. We were the only ones there (July is a big vacation month. Completely slipped my mind) but it was still a very positive, but difficult, experience.

The woman who runs the class is a certified bereavement counselor and tragically lost her son in an ATV accident 20 years ago. He was only 7 years old.

After leaving group, I realized one thing. I'm that woman now. The woman that people avoid, the woman that people don't want to hear talking about her dead baby. I know this because, although it's only been 5 weeks, I've already experienced it firsthand, even from family.

The nurse who runs the program, Mary, reassured me that I wasn't going crazy. That was a surprise to me, because I've been fairly certain that one of these days Erik was going to have to call an ambulance to take me away and have me committed. That's how crazy I've felt about my life.

Next month, more girls will be there to share their story and their grief. I'm glad the first session was a "warm-up" for us, and I'm very fortunate to have such a supportive husband that wants to learn from the pain too. There's no right way to grieve, but I'm learning that my way is okay.

Wings like butterflies

2010-07-05T19:53:00.000-07:00

As the sun was setting and the lightning bugs began their early-evening show - Erik, Sadie and I visited our favorite park in downtown Morris. We love going there to play in the shade of the tall oak trees. A true park reminding us of our own happy childhoods.

We walked to the park after dinner and found ourselves among the buzz of cicadas as Sadie hopped along from the swings to the slide. I asked Erik if he remembered the conversation we had around the same time at the park last summer...

As we watched Sadie clumsily learning how to climb and play at the same time just one year ago, we put our arms around each other - my head on his shoulder - and I quietly said to Erik, "It's not going to be like this forever." Sadie was going to grow up, and soon she would be a big sister just like we had planned.

And here we were. One year later. Our lives changed more than we ever could have imagined. Yet, one thing hadn't changed - It was still just the three of us.

As Erik and I thought back to the memory that for some reason, won't fade, a butterfly started to flutter about all around me. I stood up and said to Erik as he was helping Sadie down a slide, "Did you see that?!"

The little black and orange butterfly didn't stop. For the next ten minutes it fluttered about so quickly, swooping in right at my face then flying away into the sky. As Sadie roamed the park, the butterfly kept following me everywhere I went. I have never seen anything like it in my life.

As I stopped again trying to keep an eye on this tiny, yet quick, butterfly - it suddenly started to flutter right in front of me then landed on my hand. The butterfly landed on my hand!

My jaw dropped as my eyes filled with tears, I blinked them away as Erik and I stood in amazement at this beautiful butterfly, poised so perfectly on my right hand.

It was Sawyer.

As fast as it landed on my hand, within just a few seconds the butterfly flew off into the sky and didn't come back.

But I knew it was my Sawyer.

Erik told me that he knew it was him too. He said that he came down to tell me that he's alright and that he loves me very much. And I know that's why he was here. The past few days have been so extremely difficult for me and when I almost gave up the ltitle bit of hope for happiness I had left - A beautiful butterfly comes into my life, lands on my hand and touches my heart.

Mommy loves you too Sawyer. Every moment that goes by, is one moment closer to us being together again. I love you.

2010-07-05T19:52:00.000-07:00

Yesterday was one of the worst of my life. Erik and I continue to keep trying as hard as we possibly can to make Sadie happy - to make each other happy. Except the thing is, we're not. I don't know who we're trying to kid more. Our friends and family? Or ourselves?

I'm at the point where I'm scared for myself. I don't care about anything. The reality of our lives is too much to carry. Too much to understand.

I want my baby. I need Sawyer.

Every night I pray to him. I tell Sawyer that I need him to come to my heart. That there is such a huge part of it that's missing and the only way to piece it together again is to feel the love and spirit of him inside of it. I love you Sawyer. I love you and think about you at every moment. I hope you're thinking of me too.

Sunshine in my heart

2010-07-03T19:52:00.000-07:00

Right now, I'm glad it's summer.

If this had all happened in the dark and cold of those long winter months, I really think my progress emotionally would be significantly slowed.

For my daughter, I have to go on. She's a fiesty two-year-old and she deserves the best I can possibly give her right now. I love her as much as I love Sawyer, so why would I deny her the joy of the summer sun or her first trip to the beach?

I'm glad the warm weather has forced us out of the house, not only for Sadie's sake, but for all of us. I know Sawyer is with me everywhere I go. He is part of me and I am part of him - that will never change. I'm forever his mother and the bond I had with him will never end, only change.

I'm glad we got to the beach today. Sadie really loved it, so did her mommy and daddy. Even though I never stopped thinking about Sawyer, I was happy. And I'll take what I can get right now.

Grief

2010-07-03T19:51:00.000-07:00

I am full of pain.

So full of it that my legs hurt, my arms hurt. The space between the bones in my fingers hurt.

I literally know what a broken heart feels like because mine aches with every beat.

I constantly think about Sawyer. What life should be right know, what life would be. It's a cruel cycle. And it never stops.

I want to be dead. I want to die. These are the things I think. This is my life.

My waves

2010-07-01T19:50:00.000-07:00

Today was hard. Saying that almost makes what I experienced today a huge understatement. Everywhere I looked around the house, every single time I looked into my daughter's beautiful eyes - Sawyer was there.

It was one of the first times since we've been back at the house that I didn't force myself to go out and "keep busy." My arms and legs were like rubber, my heart was aching and I felt sick to my stomach all day.

It was probably one of the most beautiful days of the summer, and I couldn't drag myself out of the house and I feel terrible for keeping Sadie so cooped up.

I tried to keep busy in different ways. Researching again all morning long - trying over and over to find another family who has experienced our heartbreak and pain. I have yet to find another mother or father who has dealt with the same type of Truncus Arteriosis that Sawyer had. I just need to know I'm not alone.

After looking for leads, Sadie and I had lunch. Just like we used to before our lives changed. Sitting at the kitchen table, the sunshine pouring in through the windows - we eat our lunch. But the banter is different. I lose myself in almost every moment, thinking of how things could have been. A single tear rolls down my face. Sadie stops her playful talk, looks at me seriously and asks "You okay Mommy?"

No. I'm not. I'm not okay. I miss my baby and I'm just so sad. It's such a small word and it consumes me at almost every moment. Sad.

The grief is just like my mom said it would be. She lost her second baby too, a son. The pain, she assured me, comes in waves. And that's how it's been. Big waves, small waves. There are never days where there are no waves at all. Just like a calm day at the beach, there's always the tiniest wave lapping at the shoreline. Making its presence known, not letting you ever forget.

And that was my day. Huge waves. One right after the other.

No tears at bedtime

2010-07-01T19:49:00.000-07:00

Last night was the first time in over four weeks that Erik and I went to bed without crying.

Part of me wonders how bad this is...

Am I a horrible mother for not continuing to mourn the death of my baby until the day I die? Because that's how I feel this morning.

Sawyer's Heart

1 year, 3 months and 26 days

Now and then

The Other Mother

Brothers

Landon Sawyer Williams

If I only knew...

Sawyer's first birthday

One year

Tuesday morning

May 29th, 2010

Time in my heart

No words

Sawyer's Heart Project - Our Wish List

Holding on to what I have

Finally, heart happy

CHD Awareness Week - A Song for Sawyer

CHD Awareness Week - Allison and Arley's Story

CHD Awareness Week - Luke's Story

CHD Awareness Week - Gwenyth's Story

CHD Awareness Week - Cora's Story

Loss and hope

Always heavy

Please, help us save babies

Life, without him

Hope

14 weeks

Instant

Away...

Sawyer's special gift

A mother's instinct

Making arrangements

All heart

The ache in my heart

Surprise blessing

Thankfulness of heart

Something I haven't seen before

Sawyer's Giving Heart Project

Sawyer's stocking

Christmas Ornaments

Retreating

Sawyer's treat

Heaven's Sky

Christmas wish

"There is no footprint too small..."

Sawyer's flowers, casket

A Walk To Remember 2010

Today is for you.

Remembering

Ewan's purpose

Ewan Eliezer Petermann

Sawyer's purpose

When bad news hits twice

We are now a "2 in 100" family

I have joined the "Fight for Preemies"

12:08 p.m.

Meant to be

September 1st, 2010 - Three months

"An Exact Replica..."

A special day for Sawyer

Tomorrow's broken promise

Grieving mother's brain

Wishful thinking

Diagnosis hitting hard

Triggers in the most unexpected places

Happy holidays - not so much

The reason behind it

The Nothing

A letter

Grievance

Once upon a time...

Fear takes over

The first "Sawyer's Heart Memory Box"

Fly high

I will carry you

BitterSweet. But not in that order

A million pieces

Cry

Eight more weeks

More questions, never any answers