Wednesday, September 22, 2010

No reason

Tonight's one of those nights where everything is coming at me, all at once.

I can't write about this on Sawyer's blog, it's all too sad. Does that even make any sense, "it's all too sad" to write about it on my dead son's blog?

It's almost been four months. Four of the fastest and slowest days, hours, minutes and seconds of my entire life. I feel like it won't get better ever. Then I feel okay. But when it's bad, it's so very bad. Down into the deepest depths of sadness.

Nothing I could ever do can ever bring him back.

A million tears. Nothing.

Memories are starting to fade and I hate that.

I have the little hat he wore. Two little blue socks. A small bottle of baby lotion. The shampoo we used to bathe him the first and only time. I take it out sometimes and I smell it and I cry. He has one blanket. It doesn't even smell like him anymore and that makes me want to die a thousand times. He is slipping farther away from me. The time between then and now is growing too big. The gap too painful to bear.

I am angry. I hadn't been for a long time, but now I am. I wake up numb. I can't feel my fingers or my toes. My face tingles and I have no idea why. It's just how it is.

And that's what I hate, how this all is.

I hate the beautiful days, because without him here it all seems like such a waste.

I hate the rainy days, because it makes the pain more raw.

I hate seeing Sadie alone. She is not supposed to be alone. She is a big sister. She has a beautiful brother that she will never know and it is so unfair.

I hate not understanding any of this. There is no good reason that Sawyer was taken from my arms and there never will be.

Tuesday, September 21, 2010

Ewan and Joshua

Two mothers - Are going through hell. I don't even know these two women, yet I really do know them and what they're going through.

One has no idea whether or not her son will survive the night...

The other is learning what it's like to leave your baby, alone. In the NICU.

Two little baby boys. Ewan and Joshua. They need so many prayers. And the mothers, they need them too.

CHD's are hell.

But, there are a few out there who are working so hard in their baby's memory. Becuase all they have to hold on to are the memories. And all they want, is to give every mother memories that last longer than the short lives of too many of our heart babies.

Tonight, pray for these two babies. Pray for their parents. Pray for their siblings. Pray for their families.

Garage Sale - can you help?

Hello to all of my faithful followers. I will be having a garage sale at my home on October 1st anad 2nd in an effort to raise funds for our walk on October 16th. We are in need of ANY donations for the sale and you can drop them off at my house anytime. I live in Channahon and can pick up things if you don't live too far either.

We are having huge problems with t-shirt vendors, food, etc., so this sale is hopefully going to raise enough money to cover a lot of those costs. If you have an item to donate, please email me at and we'll talk. Thank you!

Wednesday, September 15, 2010

We are now a "2 in 100" family

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.

Thursday, September 9, 2010

One person

I'm sad. Sad for myself. Sad for my family.

And sad for all my friends who are working so hard to tell their story. Sharing the most intimate details of their loss and sharing their hope for change only to be ignored, written off.

I want them to know that I'm here. I'm listening. A lot of us are. Reaching one person, just one - saving ONE person that heartache, the grief - is all worth it.

Wednesday, September 1, 2010

September 1st, 2010 - Three months

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.