Honestly, what is normal for us anymore? Nothing in our world seems right and things are definitely not fun. Before it was jumping into the car to go for a hike on a nice day, or spur of the moment catch a flight to Florida, or pack the kids up for a day of playing in dirt at the farm. Now it seems like everything is schedules, phone calls, medication adjustments, feedings, therapies, appointments, check-ins, etc.. the "is he uncomfortable and in pain or is he just being a 3 year old?" It's a lot of scared, tired, nervous emotions. It's a very hard battle between getting sucked into a dark hole and trying to find joy in the small things.
I always dreamed of having a big chaotic family of my own but anymore I don't know what it's going to be for us. My biggest fear becoming a mom was knowing you could lose someone that is actually your whole world, at that time the fear stemmed from kidnappings, drownings, car accidents.. you know, the normal things parents fear. However, here I am having to watch as my child gets stolen right out of my hands and I can't do anything about it. It's heart wrenching and soul crushing and we are being robbed of our whole lives, all of us are.
Some people have the audacity to say "enjoy the time you have" as if any mother can fathom living the rest of her life without one of her kids. Others will ask "how are you doing?" when you should all know the answer is absolutely terrible. This is not something someone can cope with or accept, it's something you figure out how to manage living with to get by not shatter into a million pieces.
We've had a lot of support with Axel's Early Intervention team with getting him the assistive equipment he needs to make him more comfortable, but every time I look at the equipment I get sick to my stomach. I remember the first day he got fitted into a new seat, I couldn't stop crying watching him sit in that seat, getting the straps adjusted. Why him? Why our family? Why does he have to lose out on SO MUCH of his childhood because of MLD? Although it's been months since the diagnosis I still cannot believe this is our lives. I cannot believe everything MLD has already stolen from him, from us.
I've been trying hard to understand, figure out, come to terms with what we are going through. But mostly I am trying to figure out how to forgive myself. I always joked that Axel was just a difficult baby because he was needy and clingy and people say the second born is so much more difficult than the first so I always played him off as he was just more demanding than baby Ryder was. Although if I would have taken a second to really listen what Axel was trying to tell me maybe we could of caught this earlier, if I would have pushed the doctors harder we could be having different results or options. If I would of or could of just done anything to make this go away I would in a heartbeat. I hate all of it. I hate Ryder doesn't get the "normal" joys of growing up with a brother, causing havoc and making memories. Instead he is always worried if this or that is ok for Axel, and saving his money "to pay for Axel's doctors", or when he sees a smaller kid than Axel walking he is always taken back by that. He has grow up knowing what it's like to have a "sick" sibling and that Axel's health will always come above everything else and it's just not fair to Ryder.
So if you were wondering how we are adjusting to the new normal, we're not. But were figuring out how to survive it.