Category Archives: Epilepsy
Disability is Everywhere
It’s been exactly one year since Super Mighty Max was diagnosed with Spastic Quadrapelgic Cerebral Palsy. This diagnosis initially devastated us as we grieved that our son may not have a “normal” life and may not crawl, walk, talk, or live the life that we expected him to. But now a year later I can truly say that disability is everywhere and it’s truly a blessing.
This past weekend we successfully travelled out of town with Super Mighty Max the first time (we travelled longer than 3 hrs with him) this year, and ventured to DC to visit family. My father in love was able to get us tickets to the sold out online newly opened Smithsonian National African American Museum of History and Culture #naamhc (the museum is free by the way you just need tickets to get in).
So, we packed Super Mighty Max up and ventured out to DC to spend a few hours in the museum to show him our history, and to not limit sharing experiences with him. I snapped (@shareericaworld) the entire experience and it’s below.
During our time at the museum, I saw other families with kids with disabilities and other adults who were wheelchair bound. I love my people because they loved on my son like no other. They came up to him, smiled at him, held his hand, talked to him, asked about him and his age, and made me feel proud as his mom. They made me feel like Super Mighty Max’s disability is a blessing, that his little light just was shining bright, and his smile was ministering to others. He truly enjoyed being strolled around the museum and seeing the lights, music, and sound of people.
The NAAMHC is a must see in DC, I would recommend going during the week to avoid long lines and not being able to freely walk and see exhibits. Overall a positive experience for our family and up next on the family agenda is Disney on Ice!
Disability is everywhere around us and it definitely is a blessing no matter the ability of the individual!
Stay Super, Make Mighty Moves, and Be Blessed!
~Erica
Share this:
Why I hate well checkups?!
So, I’m sitting in Super Mighty Max’s pediatrician office as I write this. We are here for his 18 month well checkup. I get here, check in, and the receptionist hands me a questionaire to fill out. I take it and begin to fill it out.
I read through the first few questions and luckily there is a “Not Yet” column. The first questions were about his vision and hearing. The next set were about his fine and gross motor skills. I simply skim and just check “Not Yet”. Then we get to the questions above I looked at the headings for Problem solving and Personal-social and got upset. I felt like I was being punished for Super Mighty Max’s development. Trust me. I know I’m not. But to have to go through this process as if my child is a “typical” child is depressing. It makes me feel like it’s my fault and I’m not working hard enough for him to continue to develop these skills.
But we are working hard. He has physical therapy 4 x a month and occupational therapy twice a month. He is growing by leaps and bounds and I’m proud of the progress he has made. So, as the doctor comes in she starts to go through all of his specialists visits. I update her on his recent diet change and hospitalization. She then proceeds to look through the questionaire. I tell her I hated to fill out this questionaire every well visit. I tell her that it was torture for me to fill it out. She agreed that it wasn’t necessary, but wanted to make sure his early intervention services were addressing his development. We talk about his IEP/IFSP and what his physical and occupational therapists are working on.
We then discuss growth meaning height and weight. Super Mighty Max has grown 4″ in the last 6 months. But has actually lost weight. He currently weighs 23 lbs down from 26 lbs from his 12 month well check. Hopefully we will get some updates on feeding by mouth during his next gastrointestinal visit.
Stay Super, Make Mighty Moves, and Be Blessed!
~Erica
supermightymax.com 