Let me start off by saying that this is my day, with my Cerebral Palsy. Everyones Cerebral Palsy is different. Different severities, different abilities and different outward appearances. Not every CP is the same. Now this is going to be a mouthful but I will explain. I have mild to moderate double hemiplegic hypertonic spastic cerebral palsy. I know, that’s a lot. In more basic terms it means that I have stiff limbs, increased muscle tone and spasms in my whole body but is affecting my right side more. It results in stiff limbs, no balance, speech impediments, and other difficulties.
If you’re an abled bodied person, then try picturing a lot of things you take for granted: tying your shoes, riding a bike, getting your nails done, walking without constantly wondering what you can hold onto for balance, getting into a higher car (like a truck), being able to walk around a whole mall with only normal fatigue.
My chronic pain usually makes it so that I get little sleep. I wake up not only still fatigued but pained and usually stiff. I usually do some quick stretches (I admit I could definitely do more). Because Becca works 3rd shift she usually comes home around 7AM and is usually home and downstairs when I wake up. Because we currently live with her parents, their stairs don’t have a railing. Which for the most part I’ve handled by luck and by butt scoots when I’m alone. But I usually call down to Becca and she comes up and helps me down. She’s kind enough to be the one who usually makes breakfast. I make my coffee and we start the day.
If we have anywhere to go, I have to put socks and shoes on. As I’ve gotten older, socks and shoes have gotten harder. I can do it myself, but the whole song and dance takes over 10 minutes and nobody has time for that nonsense. If we have the time, I do it myself, but usually Becca helps me get my shoes on and ties them for me.
We usually keep my wheelchair in the trunk of one of our cars. I really wanted a walker instead but the wheelchair works for what I need. I can walk and stand, but not for very long. I use the wheelchair for longer outings or if we have to go to multiple places. You’d probably wouldn’t be surprised at the looks I get when we park in the disabled parking lot, hang our placard, and get out. People try to identify the “disabled” one. So of course when Becca gets out they assume its the other person. But when at short glance, I look fully abled, they get a look like we’re frauds. Especially when we pull out the wheelchair.
My wife is an angel. She pushes me around wherever we need to go, she helps me down stairs, she ties my shoes, carries my drinks, and takes care of me in the best way possible. In our day to day life she reminds me what true love is, what taking care of someone is. It’s living life with someone who might constantly need your help or who will constantly have to adapt to life to survive. It’s being able to adapt with them, in stride, with little complaint.
There are days where I get so tired of being tired and constantly needing help or being in pain that I cry. I just let it out and cry. And Becca is always there to hold me and tell me how much she loves me no matter what. I don’t know what I did to be with such an amazing woman, but I am so grateful.
If you’ve made it this far, thank you for following us. Thank you for listening.