Oliver just had another seizure. It was nothing scary – some twitching and blinking, but it amazes me how much my life has come to revolve around these little bursts of energy. There’s the gratitude when he hasn’t had any in days, worry about upping his meds if he has and keeping alarms on twice daily to remember those meds.
He’s doing well. We started physical therapy this week. We’re working on pushing switch buttons (cause and effect), holding onto things and keeping that head up and steady in all positions. He’s smiley, talkative and such a snuggler. Where Margot makes me laugh and burst with pride, Oliver makes my heart melt into a teeny puddle.
He’s also changing me. Where I’ve always been a worrier, Oliver is smashing that habit single-handedly. Your brain cannot handle even thinking one day ahead with a child like him. It explodes in exactly 30 seconds as it snowballs from, “will the throwing up start again?” to “will he need a feeding tube?” to how you’re going to manage moving your family into a one-level home in the next year, and suddenly you’re at whether he’ll even still be with us next year. So you stick with TODAY, period. If it’s not on today’s radar, it’s off the table. And amazingly, this habit is growing anti-worry muscles that I can use in my professional and marital life.
He’s changing others, too. He’s pushing other parents to not take things for granted. He’s making the insensitive rethink their words. (I had to stand up to the first person who used the world “retarded” in reference to a kid with special needs this week. He immediately apologized and said that he realized his mistake as the words came out of his mouth. Thank you, Ollie.) And he’s making his daddy re-evaluate the definition of a father-son relationship to one that lives beyond the traditional playing catch and going to football games model. He’s still grieving the loss of those memories, but he’s now able to learn how to be a great dad to a son who needs to know love simply for the sake of love. Being present in his children’s life is that much more important and he’s even going to the extent of changing career directions to one that will allow him the freedom and flexibility to be a more active part of their lives.
We’re having some victories – we seem to be past the regular vomiting, his therapists are thrilled with his relaxed muscles compared to when he first started with them, and we’re slowly discovering the sounds and sights that interest him enough to motivate a reaction. (Vibration, good. Popping noises, bad.) But this is also when the setbacks are actually becoming real. At nearly six-months-old, we find it easy to write off his skill levels on his young age but recent social interaction with all of our friends with even younger babies reminds us that it has already begun – he’s slipping behind. He is not controlling his head like they are. He is not as curious about his environment. He does not reach out for things or put things to his mouth. Other parents of LIS kids tell me that the first year is the hardest – you’re still adjusting to the diagnosis and it’s a year full of comparisons to other children. They say that as they get older, it’s easier to see them as simply THEM and to see the comparison as apples to oranges. We just have to stay focused on celebrating every little thing he does do. If we don’t, that same mental avalanche begins and we’re quickly in the corner in fetal position over the unknown.
We cannot be more grateful for the family and friends here that have helped us so much already and are on board for the long haul. The grandparents are always available for both of our kids, the aunties and uncles take every opportunity to hold and love on them, my best friend from college stepped up to babysit Margot when we needed a new sitter, and we have a new set of friends in his teachers and therapists that work with him when we can’t. We would be lost without this support system. God knew what He was doing when He started having everyone move to Chattanooga a couple of years ago and it will go down as one of the greatest gifts of our lives.
In other news, Margot has started Preschool twice a week and we’re so thrilled to have her coming home telling us the memory verse she’s learned and singing new praise and worship songs they sing at school. And even more exciting for her, we’ve started her in ballet and tap dance lessons. She’s only had one lesson and is already obsessed. We spent 30 minutes this morning watching videos of Gene Kelly, Cyd Charise and Fred Astaire so that she could learn the difference between the two types of dance. She used to sneak out onto the dance floor while watching her older friends when she was two. But the little that the teacher saw of her move then led her to tell me that not only did she remember Margot, but she was excited to have her in class because she thought even back then that she had a natural rhythm and grace that excited her. Where she got this, I do not know. You should see Alan and I dance with her in our living room… Alan and I both have some new career focuses that are exciting to us and allow for us to have much more income potential. (More on that later.) And we can safely say that life is adjusting to a new normal. It’s not normal by any means, but it’s becoming our normal and we needed one desperately.