We are home. I have given Eli the ACTH injection the last 3 days (one at the hospital, two at home). It is terrifying, as a parent, to stick your child with a needle knowing it will cause him pain – but, I do it because I know it will save his brain. Each time I’ve ended up in tears. In fact, I think Eli cries less
than me. He cries at the initial poke and then throughout the injection of the medicine. But when I pull out the needle and put on the bandaid I swear he smiles at me. It’s as if he’s saying good job mommy. Bless his heart.
Speaking of hearts – it has been 11 weeks since his was repaired. In fact, it was confirmed that he had Infantile Spasms exactly 10 weeks post open heart surgery. Throw in a week in the hospital for Bronchiolitis and that leaves a little less than 9 weeks, 9 very short weeks, that my sweet boy has been healthy. That just doesn’t seem fair! He has faced an uphill battle since birth (actually his battles started before birth!). At the beginning, he had to fight to breathe and eat. Now he fights the deterioration of his brain. I am so thankful his heart has already been repaired. A healthy heart gives him more strength to fight the seizures. I just wish he didn’t have to face one more obstacle. I wish I didn’t have to inject him with $30,000 medicine each day (which, thankfully insurance covers most of). I wish I didn’t dread when he wakes up because usually he ends up having a seizure. I wish I didn’t feel so defeated, only 4 days in. I wish the medicines (he’s on five!) would just fix him already. I wish my husband didn’t have to go back to work, leaving me to do the injections by myself. I wish Cody didn’t wake up each morning and ask in a hopeful voice, “Eli all better?”. I feel like we are missing out on his baby days. Instead of watching for milestones, we’re watching for seizures. Someone told me at the beginning of this journey that when you have a baby with Down syndrome the first year is the hardest. I didn’t realize it would be this hard. When Eli was diagnosed with Infantile Spasms it was like hearing he had Down syndrome or a heart defect all over again. We finally “get over” one thing, just to have to deal with another. Sometimes I find myself wishing things were the way they once were. But then I realize that would mean life without Eli. And I obviously don’t want that. I just wish things weren’t so hard for Eli, and for us as a family, right now.
I know things could be worse. I follow the stories of a few children who are far worse off than Eli. Two of those children have never even been home from the hospital. I constantly try to keep this in perspective. But, this is our life and I’m entitled to a few bad days. I am baffled as to what lessons I am supposed to learn from the struggles of my child. I try to remain inspired by his resiliency. But today is just a bad day. And I’m going to entitle myself to a few of those. I’ve realized it’s ok to be weak occasionally. I feel my shoulders getting heavier with the burden. I have reached out to those who understand. I am so thankful for these new friends. Friends I have made because Eli has Down syndrome and now, Infantile Spasms. The silver lining in all of this is the amazing friendships, lifelong friendships, that I have made. I thank God for these people every day.
I’m sorry this post ended up sounding like a pity party. That was not my intent. But remember, I promised to be open and honest with my feelings. This is how I’m feeling today. I pray tonight for a better tomorrow.
I do it all for them. My two beautiful boys.
$30,000 for this?!?