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Confessions of a heart mom; a raw glimpse of life with a heart kiddo

In honor of Heart Month and upcoming CHD (Congenital Heart Defect) week, I thought it perfect timing to share a glimpse of what life was like for our family when Chance came along with his special little heart. Keep in mind that CHDs can vary from mild to severe. Chance happened to be on the far right of that spectrum.

He and his twin sister were born on March 4, 2009. I wrote the following in early 2010, while wrapping up our latest hospital stay:

Chance is being discharged today. He's waiting for a "swallow study" and then we are homeward bound. Hopefully we won't have to come stay again for a long time. I stayed out of work today. I miss work. I miss my husband. I miss snuggling him at night. I miss walking upstairs and seeing Ty chillin' on the couch, playing video games. I miss giving Tay her bottle in the morning. I miss "normal" and I've missed it for a long time now.

We prayed and prayed for God to give us a baby. Then, WOW, we were blessed with two. Several months later, when we found out about Chance's heart, it was like God said, "Okay, you begged me for a baby and I'm blessing you with two, but one of them is going to have a broken heart."

At the first ultrasound they said they couldn't see all four chambers of Chance's heart. They sent us to a specialist, but we had to wait three weeks. I kept praying to God and telling myself that Chance's heart was all there. They just couldn't see it, because of the way he was positioned. Even when we found out that his heart was, indeed, broken, it just didn't seem real. Dr. McDowell talked to us about the surgeries and the treatments and it all seemed like it would be okay. What he didn't know to tell us was about how Chance would struggle repeatedly to come off of the ventilator and that as soon as he did finally make it off, he would nearly die and need emergency surgery for a perforated intestine. He didn't tell us Chance would have multiple feeding issues and that he would continue to have struggle after struggle and set back after set back.

I often wonder if we've made the right decision in putting him through all of this. Will he ever have a life that is worth all of this suffering? What will he think? Will he be grateful to God for his blessings? Will he be grateful to us for believing in his fight and his strength? Or will he resent us for putting him through this constant pain for a life he can only half live?

The thing is, it's a lose-lose. I question the decisions we've made, yet had we decided to not try and to just let him go, I would have always questioned if he would have been a HLHS (hypoplastic left heart syndrome) success story. So, of course, it's in God's hands. Chance is in His hands. If God takes him from us, be it weeks or years, I will know that it's because he never really belonged to me in the first place. I just get to be his mommy for as long as God allows, and let me tell you that is no small task.

People say, "I don't know how you do it", "You're so strong", "You're my hero...." Guess what...we aren't strong, we certainly aren't heroes and the ONLY way we can do it is because we love our son and more importantly, we love God. Guess what else.....we break down....we cry.

We fight.

We want to give up sometimes. We say, "God, what did we do wrong??".

We aren't heroes. We love our baby. God has given him to us and said to take care of him. So, that's what we do. And, you would do the same.

God blessed us with these babies and he blessed us with friends and family to love us and support us every step of the way. I don't know what the future holds for Chance. Today, he gets to come home again. That's all I know. Tomorrow, he goes back to day care and we go back to figuring out what our "normal" is going to be.

Do you ever question yourself, your decisions...God? As heart parents, you WILL question yourself and you will question God. I've yet to meet heart parents that haven't. Chance went to Heaven on December 17, 2011. I still have many questions, although I've learned to focus on the most important one of all, and that is purpose. Not why did this happen to Chance, but what can we do with what happened to Chance? How can we glorify God through his life and story? How can we leverage his story to show God's love to others?

In honor of CHD Awareness Week, I tell you that having a child with a CHD will change your life. There are some things that only other heart parents will understand, but know this...that God will always understand. Chance's life was a roller-coaster. There were phases we looked back on and marveled that we made it through. I've always said, it can't have been for nothing. Seven years since he has gone to Heaven and God continues to guide us.

Heart parents, our hearts are with YOU, this month and always. We don't have the answers anymore than you do. I can only share that we found hope and peace in God. I can't imagine this journey without Him. We would love to pray for you and your families. Please forward those prayer requests via our contact card on our site. We didn't know hypoplastic left heart syndrome existed prior to Chance's diagnosis. We certainly never dreamed our child would be born with a heart defect.

Join us in spreading awareness of Congenital Heart Defects during awareness week, February 7th through the 14th. Join us in wearing red on February 14th for CHD Awareness Day, in honor of Chance and all of our heart warrior friends.

"Trust in the Lord with all your heart and lean not on your own understanding; in all your ways submit to him, and he will make your paths straight." -Proverbs 3:5-6

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