As I sit here with my sleeping boy on top of me, I can't help to be overcome with emotion, happy ones. Y'all tomorrow is February 1st, which means we're approaching one year of finding out about Easton's heart. I can remember the day we went to the hospital to for the big "gender scan" only to wait for the doctor to tell you she's sending you to a heart specialist. I remember that day so vividly. I remember February 6th even better.
What we thought was just a follow up on his heart blood flow, ended up being a three and half hour echo and start of a conversation with the doctor. I can remember lying on the table, while being screened, thinking it was too long of a scan for something not to be wrong, but the ultrasound tech reassured me else wise. I can remember waiting for the doctor to come into the room and when she handed me the tissue box and said it wasn't good, the room started becoming suddenly small. The walls were starting to close in around me, as I listened to her and watched Stephen try and formulate and ask questions about Easton's very rare and complex condition. But I couldn't do it. And with that, I told Stephen I needed some fresh air and that we could call the doctor later. I wasn't in denial, it was more so the shock and heartache of finding out something is wrong with your babies heart. A heart. The organ that beats and keeps one alive. What I was hearing that my baby's heart was broken, very broken, and he was quite possibly missing or had other contorted organs. Now you see why I needed fresh air.
We left, waited downstairs in silence as they brought us our car, and I told Stephen I didn't even want to talk about it on the way home. I know what you're thinking, "Courtney, that's denial," but it really wasn't. Remember how hard and long and tedious our journey was to even become pregnant?To know how badly we wanted to have a baby and to then find out that he was sick, very sick, with a tough outcome for any potential life. Even worse, being offered an abortion. As I sit here today with Easton sleeping on top of me, my heart aches and breaks at the thought of if he were in someone else's belly, would they have given him a chance. I am so incredibly proud of my husband for shepherding my heart during those critical moments, for our friends and family who cried and prayed alongside of us.
I write today, with a happy and sweet boy who no longer kicks me on get inside but on the outside, reminds me everyday of his fighting spirit and how full of life he is, even with an imperfect heart. When he sleeps, I marvel at the sheer magnitude that his little heart works and he is growing and exploring. I marvel at what the lord has accomplished through Easton's life and I can't help but hope that will be the case for many more years to come.
As a mom to heart baby, he is my warrior. There are schools of thought these days that say that we can't label our kids, but I do. I've seen him at his lowest of lows, on dialysis, paralysis, on a ventilator, with his chest cracked open. My child is a warrior because he is such a fighter and reminds me every day that God has filled his lungs with air and allows his heart to beat all for a greater purpose. Even if it's just for me to continue to trust God, day in and day out, I still thank him for our sweet miracle boy. For our trials have allowed us to lean on Him, and to know Him a little better. I eagerly look forward to all the Lord is going to continue to do through the life of my Easton Bauer.
So I'm not sure how many of you are aware, but there is ONE week in February that is dedicated to raising support for Congenital Heart Disease. It's such a cause that is near and dear to our hearts (obviously), but I do want to take time to raise awareness for CHD. Actual CHD Awareness week is Feb. 7th-14th, but every Friday, consider wearing something red in honor of our Easton, or other children who suffer from the disease. CHD is the number ONE leading disease that results in more children's deaths than ALL childhood cancers. It's affects 1/100 children born and is also FIVE times less funded than other pediatric diseases.
Please consider donating in the month of February in a variety of ways:
-You can give financially (I'll post a few links at the bottom of this webpage). If you're not comfortable donating to a large corporation, there are other routes you can take!
-Please go DONATE blood! Easton has had four blood transfusions and without blood, he wouldn't make it. I know everyone hates giving blood but there is such a shortage and it means so much to us who have received blood!
-Wear red on Friday in Easton's honor and to help raise awareness! (And send me your pictures!!)
-Pray! Pray for those who are currently in the hospital with children fighting for their lives, pray for funding, pray for doctors and surgeons
Writing has been such a healthy outlet for me since we found out about Easton's heart, and I'd like to sincerely thank all of you who read my blogs, send me messages, and who have walked this path with us. I've said it before and will continue to reiterate that we can't do this alone. I am truly blown away by all that has been done for my family and I only want to be able to share what God is doing in our lives with others.
Much love and thanks,
Courtney
Links to CHD websites:
(TCH is working on expanding the heart center and should be complete by 2018)
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