Channel 12 news

Saturday, August 24, 2019

13 years ago my goals were very different

Brendan was 3 years old. I was just beginning to accept this life thrown at me. I definitely was not through all of the stages of grief. I may have been slightly in denial, but I am not positive. I just remember 13 years ago I made a vow. I said that I would never order Brendan another wheelchair. Boy was I wrong!

Thinking back to those first years is tough. I still feel sad every time I think about his birth. I just wish I could have changed that day. I wish I went to a different hospital. I wish it wasn't Thanksgiving. I wish people listened to me. But I can't change any of it. Here we are 16 years later. Not only could I not keep that vow, I literally had no control over it. I thought I could 'fix' him if I tried hard enough and did every therapy available. I thought he would progress but little did I know most spastic quads regress as they age. It isn't the proper term because the brain doesn't regress or become any more damaged but the spasticity takes a toll on their bodies and effects them adversely as they age. I had so much hope so no wonder I hadn't reached acceptance.

It is far from easy being 23 and having your first child endure a birth injury that would effect the rest of your lives. I had friends at the time but they all had typical babies. They all grew and progressed at a normal rate. Over time it depressed me to hang out and see all of their babies growing, babbeling, crawling, walking, talking. My son couldn't do any of that. I had to eventually seclude myself for a while. I had to grow (stronger). I had to learn and I had to prove to myself that I was going to be the best mother that I could be for my son. He didn't choose this life. He got the short end of the stick. He was also thrown into this life without anyone prepared to raise him. My marriage ended. I had to work part time so I could take care of him. Life changed in an instant. I was trying to figure out this new path. I am not sure if denial fits exactly because I did absolutely everything for my son. My life revolved around him. I had set him up with therapy at 6 months old and I accepted everything that was offered. He had 3-5 appointments every single week. I took him swimming and to music gymboree and 3-4 therapists would come to our home. Every single week. I took him to the park and I would take him for walks in his wagon. I kept him busy. I kept my mind busy. It was just him and I at the time. I had all day to care for him. I worked back to back shifts on the weekends while he stayed with his dad and I was utterly exhausted during the only time I didn't have to care for him 24/7. I did it all for him. I don't regret it one bit. He wouldn't be where he is today if I hadn't been so motivated.

He turns 17 this year and I can't believe it. Kids grow up way too fast. Some days it feels like I just ordered his first wheelchair. It is odd but I still can picture every moment when his first chair was delivered. I wasn't mentally ready and I absolutely hated it. I think the therapists talked me into it for bus transport. He would start school at 3 years old in order to receive therapy because he would age out of early intervention at age 3. It looked huge and it was too big for him. Back then they didn't have adorable little wheelchairs. Although I am sure those moms starting out on this path don't think they are adorable at all. It must have been so tiny because it actually fit behind the drivers seat in my X-husband's car. I can't even picture how small it actually was because in my mind it was a monstrous piece of equipment. I seriously hated that wheelchair and never used it and instead I ordered a Convaid EZ Rider stroller and let me tell you those are the best! We have had many sizes and they have served him well. I highly recommend that brand and for any mom not ready for a wheelchair.

I would say Brendan was around 8 years old when I finally was ready to order a wheelchair. Mentally I was okay with it. I wanted a power wheelchair mostly because I didn't think he could maneuver a manual wheelchair. His right hand was fisted most of the time and he kept it up in the air. He had very little strength. I was talked out of it and I am so glad I listened. Having a manual was the best therapy for his right arm and hand. He has also had Botox, therapy and arm surgery which has helped him gain so much use. He has been mainly in a wheelchair for 8 years now. That sounds insane! I have still tried everything including multiple surgeries, tons of therapy and working out at home constantly but ultimately Cerebral Palsy always wins!! I can't say that I didn't give it my all. He doesn't want it enough and when I say that I mean he doesn't want to walk. He is content sitting in his wheelchair. He is content having everyone help him. In a way that isn't a bad thing. I rather him be content then hating his life being stuck in a wheelchair.

I realized that I was the one that had to fully accept it. I was the one that had to change the goals in my heart. I was the one that had to let him choose for once what he wanted. I was the one who had to let go of the control. So here we are days before he begins the 11th grade (yes the 11th grade!) and Brendan just had his first power wheelchair fully approved by insurance. I was oddly ecstatic when I received the phone call. I never thought I would be happy hearing that his 4th wheelchair has been approved but I was. I have definitely hit acceptance 100%!

I will post pictures and videos once we pick it up. Brendan will soon be the proud owner of a Permobile F5 with standing feature! Everyone said that the standing feature would be denied but his Physical Therapist must have written one amazing letter because I do not have to appeal it. Permobile will custom build his wheelchair and we will pick it up in a month. How cool is that!?

He will still use his manual in the house and we don't even have an accessible vehicle at this time so he will use the power chair mostly at school for now. I need to figure out the best vehicle for him in the future so that his care takers can take him places as well. I want him to use this chair and love going out and about. He won't worry about fatigue or having people push him around or not being able to reach things. He can push a button and talk face to face with a cashier. He is going to love this chair and he doesn't even know it!

Stay tuned. This kid will be riding in style very soon.