It's 5am and I've been awake for about two hours now. During this time I have cuddled J back to sleep and dealt with a seizure and I'm now wide awake with no hope of getting back to sleep. I've read an article a friend linked to called The Mom I Would Have Been. This has inspired me to try and write down my take on being a special needs dad.
We've got two boys, J (5) and M (3). J had a difficult birth and has been left severely disabled as a result. He has quadriplegic cerebral palsy. M is "normal". I work full time leaving my wife at home as their mother and full time carer.
While my wife was pregnant people would ask if I knew what we were having. We didn't know but I stuck to the old cliche that I didn't care as long as he/she was healthy. Deep down though I knew I was hoping for a boy. I'm a big kid myself and enjoy mountain biking and generally anything that involves being outside getting covered in mud. I used to daydream about going out for the day riding or walking with my son then coming home covered in mud and getting in trouble off the wife. I kept up this dream during very difficult times in hospital after J's birth. After about two weeks in the hospital a doctor took us aside and explained that J would be moderately to severely disabled and may require help for the rest of his life. I heard what the doctor said, but I didn't really listen. I wasn't ready to let go of my dreams and accept the future that was on its way. Back then I was hoping my son would just get better and have a normal childhood.
I would have been a dad that took his son to the park and let him run around. I would have been a dad that got a bike seat and took his son for rides while he was too small to ride himself. I would have been a dad that took his son to play in the woods. I would have been a dad that read stories to his son before bed. I would have been a dad that built a go kart with his son then played with it in the street.
I tried to be a dad that took his son to the park. However there aren't many parks with accessible equipment. We go through the rigmarole it takes to leave the house. Drive to a park with something we know J can access. We wait patiently for other kids to finish on the big swing then get J on it, swing him for a few minutes enjoying seeing him smile and laugh. We ignore the stares from other parents and excuse the ignorance of the other kids who stare a bit more obviously. We get J off the swing and back in his buggy and look around the rest of the park hoping there's something else we can get him on. All the time seeing other kids around his age running around, laughing and playing. We spend a bit more time there pushing or carrying J around, trying him on other things and failing, then when we can't take it any longer, we get back in the car and drive home. We tell ourselves it was worth all the effort for a few minutes of smiles.
I tried to be a dad that took his son for rides. I bought a trailer for my bike and took him out for rides in the woods. This worked for a short time while he was small but as he grew it became harder and harder to enjoy this activity. It soon became clear neither of us were enjoying it so we stopped.
I tried to be a dad that took his son for walks in the woods but the rough ground meant a rough ride for J. We're trying to get a specialist buggy to allow us to take J out and have some comfort over rough ground but they're very expensive. However we have recently found a rucksack carrier that works for J so this is actually working out. Unfortunately he'll outgrow the carrier pretty soon but we'll use it as much as we can until that time comes.
I try to be a dad that reads to his sons at bedtime. M will cuddle up to me and get involved by looking at the pictures and following the story. J will just try to wriggle off my knee making it impossible to hold him and a book. I can only really cuddle J when he's really tired and falling asleep. Good job I like sleepy cuddles. I still read to J but usually only when he's in bed. I've memorised a couple of stories, like the Gruffalo, so that I can interact directly with J during the story without having to keep picking up the book.
Maybe one day I'll build a go kart with J and M but time will tell on that.
After seeing J miss so many milestones of development it really helped me value and celebrate the milestones he has reached. Seeing M waltz through the milestones has really drove home all the ones J has missed. It's great seeing M develop but it's always tinged with a sadness for J. He should be the one teaching his little brother stuff and helping him get in trouble. I take M out now and then and just have fun with him doing normal stuff dads do with kids. You know, the stuff I've discussed trying to do with J. We have a great time together but I always feel guilty about leaving J behind.
There are times I wish I had been stronger. For example J has received presents that really haven't been of any use to him. These have then sat around the house as a constant visual reminder of the thing J can't do or use or just has no interest in. I wish I'd been strong enough to refuse these gifts, they can be such a heavy burden due to the mixed feelings they give you. You're grateful someone went to the effort of buying the gift but at the same time wish they didn't, or wish they checked with you first. Eventually they become part of the house, I couldn't bring myself to get rid of them. If we did get rid of everything J couldn't use then you'd hardly think we had a child in the house. M came along and he started playing with all the toys J couldn't. So while it's great seeing him get pleasure out of them, again it's tinged with the sadness that J never got anything out of them.
I wish I'd been strong enough to persevere with some activities. Giving up is the easy option. Maybe J would've benefited more if we persevered more with his walker or trike. But there's it so much you can put them through as its equally difficult on us. Maybe if we'd pushed a little harder we'd have broke through the screams and heartache and we'd be able to take J on nice long rides on his trike now, or, maybe not.
I love my boys and I'm always looking at ways to involve J in everything we do and want to do. While I may give up on some activities I'll never give up on them.