It's Spina Bifida Awareness month in the US this month. We do it in June around here, but I have no problem with the double dipping! In honour of that, folks from Spina Bifida Connection are doing a blog link to let the world know what living with SB is really like.
So, here goes.
Kingsley is now 8.5 months old. We found out about his SB when I was 21 weeks pregnant, which was 1 year and 2 weeks ago. Pregnancy was no peach, but it did give me a lot of time to grieve, read, google, freak out, and adjust to our new reality. Once Kingsley was born the panic, pain, and fear did not go away, but it was as if someone hit the Mute button. Occassionally, someone plays with the stereo and the volume will suddenly get turned up to high (like it did a few weeks back), but for the most part we are just aware that the stereo is on and no one is listening.
Kingsley has four diagnoses on paper: myelomeningocele spina bifida; hydrocephalus; Chiari II malformation; and neurogenic bowel/bladder. I joke that aside from the shunt, medicine, cathing, and therapy, Kingsley is just like any other baby. People generally get a stunned look on their face as if those four things are so huge that he couldn't possibly be anything like another baby. They really aren't that big of a deal.
The shunt was once described by another SB mama as The Monster Under the Bed. A perfect description. If you're awake at night, it'll haunt you, but during daylight hours, you can forget about it. We choose not to live in constant fear of a malfunction/infection/problem. It will likely happen sometime. We'll deal with it then. Until then, we measure his head every few weeks and occassionally when he's acting oddly, it might cross our mind. Otherwise, his hair has grown over the scar and it's out of sight, out of mind.
King is on three meds as of yesterday, all related to his bowel/bladder. I keep them with his diaper stuff and give it to him first thing in the morning and last thing before bed. A lot of parents give their babies those Vitamin D drops. It's no different, just times three. Just like vitamins run out and you have to buy more, so do his meds.
Catheterizing was something that scared the bejeezus out of me when I was pregnant. No one wants to cath their kid on a daily basis, right?. Every mom/dad who does it though will repeat: It's not that big of a deal. It really isn't. I do it when I change his diaper (which all babies have done anyway) - in the morning, before lunch, after nap, and before bed. It takes a bit longer than a regular diaper change, but that's about it. After the first week, it gets easy. You can do it anytime, anywhere. I will admit, I hate doing it away from home. Public washrooms are a germy nightmare. I hate it. But, luckily with two little nappers, I generally need to be at home during the times he needs his business done.
And then there's therapy. We are a part of a home program that sends our therapist out to our home every 2 weeks, so that we don't have to go into the centre. She comes at a time that's convenient for us. On my own, I do therapy with King every day. Right now, we are working on: sitting independently, tummy time, manipulating toys, songs with actions (Paddycake)... basically all of the things you would be doing with any baby. The only difference is that Kingsley doesn't make the gains at the same pace as another baby might. We work at it.
Kingsley also has more doctors appointments than my other two children. He sees a handful of specialists and we go to clinics at the children's centre a few times a year. The appointments aren't overly taxing. I'm fortunate to have family in the city who are always willing to help out with babysitting the girls while I take King where he needs to go.
Otherwise, Kingsley is an 8.5 month old baby. He naps twice a day and doesn't sleep through the night. He has a fabulous belly laugh. He is still breastfed and loves being worn in a Mei Tai. He flirts shamelessly. He scrunches up his nose when he's really excited, just like his sisters do. He loves peek-a-boo, mini maraca's, getting scared, and raspberries blown on his belly. He hates lying on his side, the vacuum, and getting his face washed. His sisters adore him.
We all do.