These two little boys are my miracles. They were never suppose to be here today. They turn 5 on October 23rd. You see, my water broke with that little trouble maker on the left (his name is Miles) when I was just 17 weeks into my pregnancy. That little trouble maker on the right (named Max) held him in, saving both of their lives, until 26 weeks, when they were born weighing just 2lbs, 1oz, and 2lb 10oz. They spent the first 5 months of their lives in the NICU at Helen DeVos Children's Hospital. Miles came home on oxygen for his first 18 months at home, and Max has had NINE yes NINE brain surgeries in his four years due to a grade 3 and 4 bilateral brain bleed resulting in hydrocephalus, two VP shunts and several VP shunt revisions. They both have cerebral palsy and as you can see use walkers to get around most of the time. They just got their first wheelchairs a little over a week ago that are used for bus transportation to school and for times of fatigue (since strollers aren't really appropriate anymore).
This is where my current struggle begins and why I'm sharing our story with you today. As this cold weather is quickly approaching I wasn't prepared for this new life with wheelchairs. The thought of our home not being equipped to get them out of the house IN their chairs. Normally I'd keep their strollers in our garage, wheel them down the driveway, carry each boy down our front deck steps and set them in the strollers, then push them down to the curb and wait for their wheelchair lift school bus. In the winters I'd bring the strollers inside our house, strap them in and wait in our enclosed front porch for the bus, once I'd see it come around the corners, Id just tilt them back in the strollers and bump, bump, bump, push them down the steps. Well,.... that doesn't work in wheelchairs. I've contacted several agencies, groups, etc who "help" build ramps, they all point to each other, the ones that DO return my calls (like Love Inc) will not be able to come out and build until AT LEAST the spring. Which the winter, and cold rainy days are the times that I am MOST worried about A woman I met through a Michigan Cerebral Palsy Facebook group so generously gave us one that we picked up in Jackson over the weekend but sadly it is too small/steep for our steps. Our front porch/deck is 31" tall and it's just too short for our steps.
I posted this story on a Facebook this evening and have had an overwhelming response of people willing to build, donate their time, etc. A few even willing to donate money and materials. I hate asking for help, but with these wheelchair costing us $610 out of pocket and now this, it’s getting a bit overwhelming. I thought I’d never make one of these pages and here I am, swallowing my pride....
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