This post is a bit of a detour for me from my original plan for my #2 Adoption Reality. I feel the need to share this though, and to add a disclaimer that these Adoption Realities I’m sharing are MY realities. They may not be the same for all of us, but for me this is how I see it and have experienced it as we’ve stepped out and been blessed through the miracle of adoption.
I read on our agency’s blog that there are so many children available on the shared list with heart disease. There are also girls and boys available with cleft lip and palate. Just waiting. And then there are those children waiting … who have both needs. Those are the ones for whom my heart truly aches.
You see, two of my children were born with heart defects and cleft lip and palate, and another of our five children was born with heart disease. He had another marker that made him hard to place … he is 10 years old.
I know many of the children who wait with heart disease have complex conditions and/or have secondary conditions listed as well. I also know many of them are older with repaired heart conditions and perhaps unrepaired as well.
Our 10-year-old son was born with a PDA and had open-heart surgery in China a few months before we traveled to bring him home. We brought him home in June and in August our ped. cardiologist pronounced him healthy and to be treated as such with no restrictions. PTL!
Our 5-year-old son, who also came home in June, was born with TOF (tetralogy of fallot) and cleft lip and palate. He was seen in August as well. It appears his heart has some other issues going on, which is not totally a shock but we were definitely disappointed for his sake. And still, we will move forward one day at a time. We will be taking him this Wednesday for an exploratory and possibly invasive cath. After that, we’ll know if he will need another open-heart surgery. We are praying he does not. If he does, we’ll face it when the time comes.
Our 4-year-old daughter, who came home in Sept. 2008, was born with transposition of the great arteries along with several other defects and cleft lip and palate as well. She received open-heart surgery on Sept. 30, 2008, and has had 4 other surgeries since she came home, 1 on her heart and three for her cleft repairs (lip and palate).
But what is all of this really like?
I hear people say so often: we couldn’t do that; you are special; you must be superwoman, etc.
The answer to all of that is we are not special and I am definitely not superwoman though some days I wish I had her superpowers! In all seriousness, we couldn’t do it either without the Lord’s help.
Most days though are really not that different for our three children born with heart disease, ranging from minor to complex. They run, play, skip, swim, dance, etc. Some of them take daily meds, some have to face unbelievably huge surgeries and they do it so bravely. I admire their courage every day.
We do spend more time at doctor’s offices than we used to, we do have to schedule around our children’s surgeries and we have to endure those alongside them, we do have to make sacrifices in order to care for our children’s needs financially, but we are blessed immeasurably more by their love and the joy they bring to our family. We know that our family is different now and that many people do not understand why we would choose to adopt children with known medical conditions. We really do not have any grand answer other than to say the Lord led us to each one of them.
We like all other parents wish for a long and fulfilling future for all of our children. We however do not dwell on the what ifs as we’ve learned that each day truly is precious and that nothing in life is guaranteed. As we heard the news earlier this month that our 5-year-old son would most likely have to face open-heart surgery this fall we were heartbroken and saddened, but we also know we serve a mighty God who has shown His great love for our children and our family.
I really do pray every day for all of the children who wait, especially those born with heart disease and cleft lip and palate. I know they don’t have a huge chance of being chosen when they have those two needs listed by their name. And that breaks my heart when I watch our two youngest sleeping soundly in their beds or riding their bicycles down our driveway or working a puzzle together.
I know that many doctors and specialists say they are too risky or there must be something serious going on inside their bodies like a syndrome. And often that is true, they do have a syndrome.
Yet having a syndrome does not mean a child is not worthy of love or finding their own forever family to love and cherish them, to choose them.
As of the other day according to our agency’s blog, there is a smiling little 9-month-old boy who is waiting for his family. He was born with a cleft lip and palate and a heart condition, but I believe he was born to also know the love of a Mommy and Daddy and maybe brothers and sisters too.
I believe he was born not to remain an orphan, but to be chosen as someone’s son, as someone’s somebody.
I know there are other children just like him waiting, whose needs seem like too much to handle. I also know the BLESSING of being Mommy to children just like them too, and I can’t imagine our life without all of our children in it.
PLEASE if anyone has read this far and has any specific questions about heart disease, I would be happy to answer any I can from a parent’s perspective. I do not mean to make it sound rosy because many days are very difficult. But many more days are just normal, fun, carefree, crazy, and love-filled!
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