(Does that make anyone else think of the song by Ben Folds:
Next door there’s an old man who lived to his nineties
And one day passed away in his sleep
And his wife; she stayed for a couple of days
And passed away
I’m sorry, I know that’s a strange way to tell you that I know we belong
That I know
That I am
As an aside, my sophomore year roommate loved this song and it drove me insane. But, she listened to it so much that I eventually fell in love and chose it for the first song that Armydad and I danced to at our wedding.)
Anyway, back on topic now. I have written this blog post in my head about a million times, but never wrote it for anyone else to read. Why? Because some people are going to think I am nuts. And some will think I am morose and focusing on the bad. And most will not understand. But, that’s okay. Because most have not lived this life.
I have a son with a critical heart condition. It is a condition that affects one in a million kids. And the long term prognosis is not good. From the research I have done, the survival rate 5 years post diagnosis is somewhere between 25 and 40%. Those are not great odds. The only chance of surviving is through a heart transplant. There is no other form of treatment for his condition. (Unfortunately for a lot of people with this condition, the first symptom is sudden cardiac arrest and death. That is part of why the prognosis is so bad. We know Thing1 has it and are being proactive, so his chances are probably higher than the average.)
And you know what I think about my son having this condition? I think I am so lucky. I have a constant reminder that life is so fragile. That God can choose to take any of us home at any point. So I cherish every day. I never wish my kids away. I never wish for them to hurry up and grow up and move out. I am actually shocked and upset when I hear parents complain that their college age kids still live at home. They should be thanking God for being lucky enough to have kids living at home!
I have been blessed beyond words to have Thing1 in my life. He made me a mother. He made me the woman I am today. If I only get a few years with him, I am still the luckiest mom in the world.
I frequently get asked how I do it. Usually I want to respond with a smart ass comment like, “Do I have any other choice?” But, I try to be polite. Want to know how I do it? I put Thing1 in God’s hands every day. Because God decided before he was even born what day he would die. So, no matter how much I worry or obsess, he is going to die on the day God chose. There is no point in wasting my time with him worrying or obsessing.
Usually I hate it when people tell me that my kids are lucky to have me. I did not adopt for them. I adopted because I was selfish and I wanted to be a mom. But, I do feel like Thing1 is lucky. Because we can handle this. We take it all in stride. I keep track of multiple doctors, tests, medicines, specialists, etc on a daily basis. So maybe he is lucky. But, I am so much luckier than him. Because I have a son whose condition is a constant reminder to cherish him.
When I first mentioned withdrawing Thing1 from school and home schooling, I felt a lot of people judging me. It upset me. I am actually really excited about this year. He and I get 3 1/2 hours 4 days a week for just the two of us. How often does the older child get that one on one time? Homeschooling him is not going to be easy. (I swear the child has the attention span of a fly.) But, I get so much quality time with him. And with such an uncertain future, that is a gift from God.
I did not write this as a warning of things to come. Because we don’t know what is to come. God may have a purpose for Thing1 that he will not fulfill until he turns 80. I wrote this because I needed to. I needed to get it off my chest. I needed to put it out there. Maybe it will help another mother facing this. Maybe it will just help me. It did help me.