The Faces of CHD

Congenital Heart Disease (CHD) Awareness week is February 7-14, 2012.
Statistics show that heart defects are the #1 birth defect in the United States, and about 1% of babies are affected.  These defects are also the leading cause of infant death from birth defects.

Since I realized I would be a "heart mom" in July, it seems like other affected families have come out of nowhere to share their stories and offer support.  Congenital heart disease affects so many families, and shouldn't be taken for granted.

In order to help raise awareness, Ruth has started a board on Pinterest dedicated to the "Faces of CHD."  Pinterest is a very neat, very addicting website that allows you to "pin" things that interest you on the web.  You can find everything from recipes, craft projects, home decorating ideas, and just about anything else.  Sharing the stories of families who have been affected by CHD will help bring awareness to many people who might not realize how common and serious this really is.   Thanks for your support!

Two Months Later

Dear Thomas,

It is hard to believe that I held your little hand for the last time two months ago tonight.  It was also the first time I got to bathe you, dress you, and hold you without wires and tubes.

I have never been so scared in my life as I was that night, Thomas.  I couldn't believe it was happening.  The doctors and nurses working on you were able to fix just about anything....but they couldn't fix you.  They couldn't bring you back.

Looking back on that night, I now understand why.  God gave you to us for fourteen days.  Those days were written before you were born.  It was your time to go, despite the doctors and nurses who worked so hard to save you.  It seems like it may have been easier  if we'd known we would only have you for two weeks.  It was painful to lose you, and to lose the hopes and dreams we had for you.

It is so hard to think about that last night, Thomas. I usually can't think or talk about it without crying.  I have to remind myself that you don't remember it like I do.  The most traumatic night of my life was your first night in heaven.  It was a beautiful night for you, and I am so thankful for that.

You are part of a bigger story, Thomas.  God has redeemed your two weeks, your broken body, your life-cut-short.  He is also redeeming our own hurt, sorrow, and tears.  He is showing us over and over again that He is good, and faithful, and true to his word.  

Losing you has put our broken world into perspective for me.   This isn't how God intended it to be....babies aren't supposed to die.   We are anxiously waiting for the day when things will be made right again.

"He will wipe every tear from their eyes, and there will be no more death or sorrow or crying or pain. All these things are gone forever."   (Revelation 21:4 NLT)

"I have told you all this so that you may have peace in me.  Here on earth you will have many trials and sorrows.  But take heart, because I have overcome the world." (John 16:33 NLT)

Tough Week

This past week has been a hard one for me.
I've been more sad than usual.  My heart has been heavy, and I've felt that knot in my stomach that I had the whole time Thomas was in the hospital.

Thomas would have been two months old yesterday.  He would be smiling, cooing, and laughing by now, and I'm sad I won't get to see that.  I think each of these little "birthdays" are going to be hard for me.    All of the two month olds are coming in for their checkups now, too.  While I love seeing them, it is hard as well.  As time goes by it will get easier, and this little group of babies born around Thomas's birthday will always be special to me. 

Being back at work has been good for me, for the most part.  I love my job, and I have missed my patients and coworkers. It has also been a good distraction, as our house just seems too quiet. Most people know about Thomas, and they have been sweet about giving me a hug or telling me they've been thinking about me. Of course there have been a few awkward encounters where people didn't know and have excitedly shouted out "Congratulations!" when they saw me.  I usually cry as I tell them about him, and they cry with me.  I am grateful for every acknowledgement of my baby's life.   I appreciate that they care enough to congratulate me and care enough to cry with me. 

Being back at work has also been draining, though.  I'm out of the habit of long days, and am slowly getting used to it again.  While I love talking about Thomas,  I have to do it about thirty times a day.  Its often hard to keep myself together, keep my head clear,  and focus on work.  I've realized I need to block out time for myself at night and on the weekends to just let myself be sad. 

Yesterday and today I went out to the cemetery and just sat and cried and prayed. The weather was beautiful, and the cemetery was so peaceful.   The sun was shining on the water, the birds were singing, and the wind was blowing through the giant oaks covered with Spanish moss. 

I miss my little buddy.

"You keep track of all my sorrows.  You have collected all my tears in your bottle.  You have recorded each one in your book. " Psalm 56:8

Thoughts on 2011

2011 has changed our family forever.
We had Thomas for 41 weeks last year. I carried him for 39 weeks, and we were able to love on him for fourteen days. We experienced the highest of highs and the lowest of lows through our sweet baby, and we will never be the same.

I have always heard "Blessed are those who mourn, for they will be comforted" (Matthew 5:4 NIV), but I have never really understood what it meant. Now I think I am starting to get it.

The Message version of the same verse says this: "You're blessed when you feel you've lost what is most dear to you. Only then can you be embraced by the One most dear to you."

According to the cliff notes in my Life Application Bible, "'Blessed' means more than happiness...'blessed' means the experience of hope and joy, independent of outward circumstances."

I wish things had happened differently with Thomas. I wish more than anything that he was still here. Losing Thomas hurts, and I will miss him every day for the rest of my life.
While these awful circumstances could have left us bitter, miserable, and ruined.....they haven't.

We are grateful to have been given that time with Thomas. Through God's grace we have been able to experience hope and joy in the midst of our crisis.  The Lord has bound my heart to His like never before over the past six months. We are already noticing some healing in our hearts, and we are hopeful that 2012 will bring more of that. We are looking forward to what the new year holds.

"Come near to God and he will come near to you."(James 4:8 NIV)