A Birthday and a Flash Flood of Emotions

People often tell me I'm a very strong person. Internally I tend to not agree with them as I feel like I'm falling apart much of the time. I am disorganized, forgetful, impatient and a bit of a mess. But over time I have come to realize that I can be pretty strong. It takes a lot of mental effort for me to get out of bed every day knowing that I'll be greeted with a) a crying little boy who is in so much pain for which there is no help, b) an energetic pre-schooler who just wants as much of my time and attention as I can give him, c) a cat who thinks the whole world revolves around her need to drink water from the faucet, d)a busy workday full of twists and turns, e) a house full of clutter and dishes and footprints and shedding hair, f) all kinds of other things I'm too tired to think of. But I do it. I get out of bed every morning and throw myself into the task of getting Oliver as happy as I can as quickly as I can so that I can get ready for work and help Tobin with whatever he needs. I get the boys to school, usually spend another 20 minutes trying to calm Oliver down and then I'm heading into work.

I'm physically and emotionally exhausted by 9:30am every morning. But I do it, again and again and again. Often with a smile on my face, usually with a laugh and a high five for the adorable toddlers on my way out of the daycare. Those cute little faces remind me so much of the life Oliver won't get to have. They are walking and talking and learning their numbers. Some of them are potty training. One of them pointed at me today and asked me "where is Tobin?". Complete sentences! Amazing. Things a normal two year old should be doing, things MY two year old should be doing. I am good at allowing these thoughts to quickly enter my brain and then I push them aside just as quickly because wallowing in the misery that is my reality is just not acceptable for a functioning life.

So, yes, I'm strong. I can leap over typically developing toddlers in a single bound and I can speak frankly when other parents look at Oliver's ankle braces with a question in their eyes. I can come home from work every day and greet my boys with a hug and a smile and set right into getting dinner made, doing dishes, preparing Oliver's keto meals for the next day at school and hearing about Tobin's fun apple experiment that he did with his preschool class. But, sometimes, I break down and cry. This can happen at any moment, in the car on the way home from dropping off the boys or late at night while I try to fall asleep.

Last night, as I got into bed I looked at the clock and realized that if Oliver were going to have a seizure, it would probably happen sometime in the next hour. So I lie awake, listening to every little noise coming from the family room, tensing my body when I would hear him roll or move. I just couldn't let myself sleep thinking I'd be soon awakened to a seizure. As I was lying there, my thoughts were drifting and I remembered the day we learned he had CDG, and how I was sitting in the hospital room holding him. He was 5 months old and so sweet and innocent and I learned that his life would never be how I pictured it. I listened to the doctor for over an hour, trying to understand CDG, not shedding a single tear. When she walked out of the room, I put Oliver in his bed and I broke down and cried. That helplessness, that feeling of utter heart break, it comes back to me sometimes when I'm lying in bed at night trying to fall asleep. I can't stop it. It comes in waves and I have to cry and cry until I'm all cried out. And then I go and sit and I look at his gorgeous face and just try to put myself back together.

I don't know what prompted my sadness last night, I've been doing ok for a good while now. I think it's that his 2nd birthday is approaching so quickly. I haven't even bought him a present. I'm just thinking to myself that I'd rather forget about his birthday. Is that terrible? Other parents who have children with complicated medical disorders celebrate every day, every week, every month with their children. Some kids with CDG aren't expected to live past age 3 (which is really a crock, most doctors don't know much about CDG and just say that). So shouldn't I be celebrating his 2nd birthday with balloons and confetti and a 9 piece brass band? I just get stuck on the fact that Tobin was potty training on his 2nd birthday, and doing puzzles, and eating cake, and all the other things that normal 2 year olds do. Meanwhile Oliver still can't do so many things. He's never once tasted birthday cake because he started the keto diet before his first birthday. He can't open presents. Any toys we bought him he wouldn't be able to play with. He doesn't need clothes because he has so many wonderful things from his big brother. What do you buy for the boy who can't do anything?

Maybe it's good to have super sad days to get everything out so that the other days we can be strong and positive and full of hope and inspiration. And maybe, someday, Oliver will get to eat birthday cake. It will be chocolate, of course, and I bet he will smile big when he tastes it.