As a mom of a special need’s child, I have a natural connection with other moms in the same situation. We understand the challenges and worries, and we understand the joys and successes of our kids. They can vary as much as between two healthy kids or much more, but we do recognize them. We cherish them together.
Not long ago, I got to spend a little bit more time with a 5-year old boy with a mitochondrial disorder. He is amazing in my eyes. For the first thing, he’s cute as a button. He’s also doing things that Jacob and I could only dream of. He is speaking, he is sitting up on his own, he is pointing to things, and he is having good head and neck control. I was telling his mom how great I think he is doing. She is a very proud mom, but at the same time as I was praising her son’s successes, a sad shadow came over her eyes. She knows another boy that we have not met. She knows a boy who walks, a boy who has no issues with head control, a boy without a tracheostomy – she knows a boy I've never met. She knows another Cal than I do. She knows that the biggest threat to her boy is called mitochondrial stroke.
That brought me close to home, since loosing skills have happened several times to Jacob. I am sometimes not sure if it’s easier to face people who have known Jacob since he was born, and have seen the losses of skills he has experienced or the ones who never got to enjoy Jacob never stopping smiling, laughing out loud, working so hard on standing against our blue gym ball, standing in his stander playing with toys, making it around our kitchen island in his walker, rolling from room to room, scooting himself around in his blue chair on the school playground, grasping after light objects and holding them tight in his little hands, using his foot to make choices with his speech device and the list goes on. Some days, I don’t even want to think about the things he has lost. One thing I do know is that I would never have taken a single moment away from Jacob, even if they didn’t last a life time. They are still worth celebrating, even if they didn’t stick with him for life. That is the hard truth about living with a progressive disorder where loosing skills are part of the picture.
At the same time, I feel I have come a long way on our emotional journey. There were times where I would feel sick to my stomach when I saw Jacob’s head falling to the left after a hospital stay as his muscles were weaker than normal. With time, he regained his strength. There were times where I was impatient when Jacob needed more help to start rolling again after a hospitalization or regaining a skill. The view has changed. Every smile, every little success is cherished without comparing with the past. Learning to enjoy and cherish the day as it unfolds. I think it can only happen if you get a little bit too close to death. Everything gets put in a new very clear perspective. It is still sometimes hard when we meet someone who hasn’t seen Jacob in a while. You can see the slight shift in their eyes as they look at Jacob today, searching desperately for his big fat smile. Sometimes I feel I have to stand up for our boy, but I don’t know what words to use. Often, I just let the moment pass. No words can truly explain this. It’s a simple fact of mitochondrial disorder for Jacob.
What helps me to get through loss of skills is that I know Jacob prioritizes his abilities each day, and if he has to choose between breathing or smiling, he will always know what is most important. He will make the right choice each day for where he is, and I am for that forever grateful. I know the big fighter is in there each day, it might just be more visible certain days than others. It’s no difference from the rest of us. We all have to prioritize, and priorities don’t stay constant.
P.S. As we today had a perfect mountain day, we enjoyed it a little bit more, since we clearly remember this day a year ago as our little boy crashed in the PICU with sepsis, pneumonia and pseudomonas – truly fighting for his life. No one knowing that he would be having a great, great day a year later.