Dear Friends of the Heart:
The last two months are a bit of a blur. Alexander and I have been conducting robotic summer camps and it's been all consuming. Joseph has been training for and attending swim meets. I had a birthday come and go. And amongst all of these things have been daily updates about Skylar.
A number of months ago I "met" Skylar through his grandparents. They called me when they discovered their unborn grandson would be born with hypoplastic left heart syndrome (HLHS). They purchased books, they talked to me on the phone and they wrote emails. I came to feel a part of this family. I prayed for them, for the baby and for all the people working with Skylar.
Little Skylar has had his Norwood and a number of other procedures. Sadly, the Norwood didn't take and a new heart became necessary in order for him to survive. Knowing how few hearts for babies are available, I worried for the family and prayed all the more.
One week after his parents decided to put him on the transplant list, a heart became available. I know, from having spoken to other heart parents, that this is a difficult decision. Basically you trade one set of problems (living with an imperfect heart) for another set of problems (living with a transplanted heart). What's worse, your child's chance for life is the result of another child losing his or her own. It's a bittersweet moment when the heart becomes available because you know that another family is grieving even while your own family is rejoicing.
What a tremendous gift one family has made to Skylar's family. They selflessly gave their loved child's heart to another family and gave Skylar a chance to live. Now Skylar has a chance to hit the terrible twos, to blow out the candles on his birthday cake, to learn how to ride a bike. Thanks to the caring and loving gift of a stranger, now Skylar has hope.
There is another sick HLHS baby out there that I've been praying for. Cooper is a sick little man. He, like Skylar, has endured too many surgeries for his young age. Like Skylar, he's suffering and fighting a good fight. He's hanging in there right now and just had surgery again today to try to help him survive. God Bless Cooper and his family. I know there are many people who care and pray that he makes it.
Going to swim meets, holding robotics camps and getting ready for summer vacations are all activities that make me forget about the daily concerns that come with living with a baby with HLHS. There was a time when I was in the hospital with Alex and I wondered if he'd be with me tomorrow. I was afraid to leave the hospital lest I receive a phone call that he'd taken a turn for the worse. Would I make it back to the hospital in time? How would I survive if my baby didn't?
I wondered, in those long days in the ICU, if Alex would lead a "normal" childhood. I wondered if he'd be able to ride a bike, roughhouse with his big brother, develop friendships and maybe even someday have a girlfriend. I wondered if he could beat the odds and what I needed to do to see to it that he did. I wondered if I'd ever go a day without thinking about whether he'd be with me the next morning when I woke up.
Time had been kind to me. After many sleepless nights and entire days filled with concern, I was rewarded with months and years of happy memories. There are still concerns at times. There always will be. But there are so many good times, so many times free from heart worries that I feel a need to let other heart parents know that things can get better and someday heart concerns won't consume your life.
Normal for us "heart" parents isn't normal for other parents. We appreciate the small things more than others do. We have a new baseline for what "difficult" or "unbearable" is. We know what really matters and lose patience with others who don't get it. Our eyes are open to the best and the worst that life has to offer. It's not easy and it's not the path that we would have chosen, but gaining wisdom isn't easy. When you have a heart child and you choose to love that child with all your might, and you pray for that child like there's no tomorrow and you believe with a faith that is far beyond yourself, then you become a different person. I'd like to think that all of us who go down that path are a little stronger, a little wiser and little more compassionate. I'd like to think that our children bring us closer to God.
Skylar got a heart. Miracles do happen. May God and the angels of heaven watch over Skylar and his family and may all who are touched by this young life witness this incredible miracle - a life reborn thanks to the kindness of strangers.
Don't take your organs to heaven. Heaven knows we need them here. Spread the word.
Peace be with you all.
Anna
