I was thinking about this the other day, and I thought it might make a good post. I feel it’s especially appropriate today, it being Rare Disease Day, according to the Center for Rare Diseases. You know Namine has DILV – double-inlet left-ventricle heart defect – and that’s rare enough, I suppose. But she also has CRS – caudal regression syndrome – and as far as physical limitations go, it is certainly the more apparent disability. But as serious as Namine’s disabilities are, she is doing exceedingly, exceedingly well. We were in the grocery store yesterday, and Namine was being her normal hyper self – singing and talking and kicking her legs. I thought to myself, you know, I wish I could write a letter to Jessica and myself when Namine was first born, when we faced the daunting and crushing prospect of a dying child – a disabled child, unable to do anything by herself. It was a time when we were promosed nothing but crushed dreams, a time when we faced nothing but dispair. If I could write to that couple and reassure them that God was still watching over them, that He had in mind nothing but to show His power through their tiny, fragile daughter, I would. Of course such a thing is impossible; but I think it’s good to reflect, to acknowledge what you have and give thanks for it. So here goes.
Dear Paul and Jessica,
I’m going to skip right over metaphysical impossibilities and assume that you’ll believe every word in this letter. I know I wouldn’t, but hopefully Jessica will. She’s always been the better part of you, Paul. So assuming you trust me, I’ll tell you, I’m you. I’m writing this letter to you from roughly two and a half years in the future. I know you have so many questions, Paul, questions that you will rage at God to answer. Frankly, He won’t. Not yet. He answers our questions and prayer on His own time, and for good reason. He loves you, Paul. You, Jessica, and your newborn daughter Namine. It doesn’t feel like He does, I know. I know it feels like He’s tearing your heart out, because I remember how it felt.
I know you think about how Namine couldn’t breathe when she was born. I remember our tears; I remember trying deperately to get through her rushed, frantic baptism; I remember us thinking that surely God wouldn’t let her die so soon, please, please let me get through it so that if she does, at least she’d be His child before snatching her life away. But she didn’t die. She didn’t die, but she’s still so fragile. And she needed heart surgery at only two weeks old – how unfair. And her legs. I know the doctors have promised that she’ll never walk, never move them. So many hopes and dreams you and Jessica had for your little Namine. How unfair, how unfair!
You won’t find this out until much, much later, but I’m going to tell you now. You’ll find out from Namine’s cardiologist that the CRS saved her life. Her heart didn’t need to work as hard, sparing her the need for heart surgery right away! Yes, I know she eventually needed the surgery. But it was able to occur at a time when Namine had had the chance to grow and become stronger. She was able to wait until she was able to survive it. She was alive, Paul, she is alive! And she will grow and become even stronger. You’ll see. You don’t see it now, with so many wires attached to her tiny body, I know, but you’ll see. She will surpass all her doctors’ wildest expectations.
I know the trach terrifies you. I know you would never admit it to your wife, Paul, but you should. I should have. Learn from my mistakes, and talk to her. You’ll find out that you share the same fears, and together, you are stronger. It was a lesson hard learned. Put down your fear and your pride, and trust your wife. And both of you, trust in God. He will get you through this. And He will get Namine through this! She’ll have the trach for two years, and I know for you that must seem an eternity. But it is the past for me, and it seems to have gone by so quickly, so quickly.
There are surgeries Namine will need, and you will feel that each one is worse than the last. You will feel trapped and crushed by the stress it will take on you and your wife, but you will lean on each other, and it will make both of you stronger. It will bring you closer together; together you will go through what will feel sometimes like hell on earth, but you – all three of you – will come out the other side a stronger, closer, more loving family.
I’m not going to give you a play-by-play with all the surgeries Namine will need. But trust me when I say that Namine will do just fine. God has her in His almighty hand, and He has carried her through. And those promises the doctors made? Don’t worry. She’s not mentally deficient – far from it. She’s as smart as you could hope for, and she’ll have you on your toes soon enough. She can move her legs just fine, and she’s learning to walk. That has been a particularly hard road, but Namine has come through amazingly well.
Paul and Jessica, I want to give you the assurance we never had. Know that all three of you will make it through. It’s not over for us either – Namine still has to get rid of her g-tube yet, and she has the Fontan coming up probably in the next year or so – but Namine is so much stronger now. She has grown so much.
Hug her and kiss her every day. Always, always tell you how much you love you. Both of you. Never take a day for granted.
Paul from the future
P.S. Namine loves Batman. Seriously, you should buy her Batman pajamas sooner than I did.