When we were home that first time I took Ellie and Dean to the Library. I couldn't help it, I wanted to show off. I love the people there and I miss it terribly and I was so excited to be home that I just wanted to show them all how beautiful and wonderful and strong our son was. When we went I overheard a woman talking to an older man, they were regulars, people we saw at the Library often. They were talking about writing and I overheard this small snip-it "you should write your story, that's why the Bible says so often to write things down."
I've remembered it and think about that often. About how I'm writing this story, about why I am writing this story. About people telling me that I'm a wonderful writer or that they are blessed by my words.
It amazes me that people read these things and are blessed by them. Especially because I'm awful at grammar and spelling and sometimes I jumble my words. I think of Moses. He was awful at talking and God still used his voice. Let me be like Moses, Father.
I wonder when Dean's story will come to a close. I wonder what the final chapter will be and how I will write that. I worry, as I will for the rest of his life, that the final chapter will be when he goes on to Heaven and leaves me here, waiting for him. I will always worry about that. I will constantly bring that before the Lord. I have to. Or the weight of it will crush me.
Each chapter of his story tells such a different tale, starts so differently. He had his second open heart surgery today. It almost feels that I was hardened to what was happening. What no one tells you when you have a child diagnosed with Hypoplastic Left Heart Syndromes is that it's not always the surgeries that will be hard, it's the recovery.
Surgery I can handle. You eat a lot, wait a lot, read a lot, maybe craft a little bit. You don't see your child cut open. You don't see them on the operating table. You don't see that part.
The part you see is the part that stings. Your child on a big hospital bed, pale and swollen. Chest tubes and dried blood stains. Their mouth hanging open, nose cannula taped to their face. You see the machines with the medicines, the nurses sitting IN their room, the lights dimmed. You see the IV's hooked in their arms, the Arterial line sewn in. You hear your child cry hoarsely and you can tell that they are in pain, it is written on their face...
That. That is the harder part.
We have weathered another storm. Gotten to the boat and then been asked to step out onto the waves. I wonder, when Peter did that, if his legs got tired from walking on the water? We know that Peter sank because lack of Faith, but I wonder if his legs were burning to. If his muscles were pushed beyond what he thought he could do and in that moment of weariness, if that is when he lost Faith.
Faith does not show itself when you are strong. It comes to you unbidden when you want to hid and run and throw temper tantrums. It reminds you that in the end there is One Winner and that you are following Him. It reminds you that the battle is not yours, but His, if you are willing to trust that He knows the best strategy.
If I could have given my son life any other way than this, I would have. Which is why I'm not the one giving him life, He is. And this is what He has chosen. This is the story that God has given Dean.
I write about this because one day I will forget. I will forget the machines and the endless waiting and how it felt to leave him at night to go sleep. I will forget that he looked awful after the Norwood and the Glenn and that all I wanted was to hold him. I will forget that life is precious and I need to treasure it. I think we all do. It is easy to. It is easy to forget that you are not promised tomorrow when there are bills to pay and work to go and chores to be done. It is easy to forget that there is joy in life when your child is in pain and you can't help them. It is so fragile. I write because I don't want to forget. I want to be Faithful. I want to push through this. I want to remember that we will not ALWAYS be in DC. I want to remember that next year Lord Willing we will be home and these will be but scars upon our memories. Scars are there, but they are not gaping wounds. We are in a place right now with fresh wounds. With hurts and fears. But Praise God, they are scabbing over.
They are scabbing over.
And my beautiful son will come back home. And we will struggle. And I will go crazy wanting to do everything. And Ellie will drive me batty. And Dean will cry while I make dinner.
And it will be part of this beautiful story.
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