While I was coming up with a post title it hit me that my eight year old was being pushed around in an umbrella stroller, for a week, while we were in Boston.
This isn't a special needs stroller either.
She's eight years old. It hit me pretty hard. Eight is too big for a stroller.
Dignity tells us that she should be in an appropriate wheelchair that fits her needs.
For safety and comfort we decided within four days of our trip that we were going to take our old umbrella stroller with us to Boston instead of Caleigh's manual wheel chair. There was no way we were going to make it an entire week of walking and train rides in the chair that she was already hanging out of. I quickly looked up the weight limit on the stroller and as luck would have it we still had two pounds to go. Golden.
After a test run at home, we found out that the width was just a smidgen too narrow for Caleigh's arms. So I went searching for something to protect her skin from the bars. I found memory foam Bell Seat Belt Covers on Amazon that ended up being a perfect fit for the stroller, TSA Cares seat belt and now at home, the Special Tomato Chair and Chariot Bike Trailer. I ordered two. I plan on getting more because we can seriously use them anywhere. Since the stroller has a mesh type of plastic on the seat I went searching for a seat cushion. After doing some measuring I decided to try my hand at the Tivoli Couture Memory Foam Stroller Cushion. It fit the umbrella stroller perfectly and made me feel a little more comfortable about taking the stroller instead of the wheelchair.
Using a stroller instead of a wheelchair brought back a lot of emotions for me. I remember the intense wanting of Caleigh's first wheelchair. I wanted life to be easier for her. I wanted other kids to see her as a three year old instead of a baby. So when I decided to use the stroller my mind went to the "walk" tumblr page. Thank goodness it hasn't been updated since 2011 when the heat of parents pushed it off the scene. I would have gone internet crazy if my child ended up on a too big for a stroller casual post.
Overall this is my take away... The general public tends to treat individuals that use a wheelchair with respect... or pity and with more age appropriate comments. Add a communication device that is working well and you definitely feel the respect. Caleigh is small for her age. Even so, she is treated like a person who understands the world around her 90% of the time when we are out and about. The stroller changes that perception. I overheard a handful of children telling their parents to "look at that baby." I sent a evil eye to a father trying to calm his crying toddler down by saying "look, that baby isn't crying. Why can't you be more like that baby?" If he only knew.
The baby perception is huge in a stroller.
Sure the feeding tube gives away a lot of what is going on when you take a second glance, but Caleigh isn't hooked up to her tube 24 hours a day. Her AFOs might speak to someone else. There are visible signs of disability, but to a quick glance the baby stroller stereotype is there. The stroller even confused TSA agents on our return flight home when they asked Caleigh to get out of the stroller so they could send it through the x-ray machine.
I'm not going to lie though, it worked. I'm proud that we adapted to what needed to be done. Caleigh came home without sores, continued strain on her spine and a week of me crying over her positioning. She got in over 30 walking miles, whiplash inducing cobblestone streets, bumpy train rides, stairs and a few naps in the stroller. We joked that the stroller had been resting up in the attic for our marathon week of go go go.
We're in the middle of an epic battle with insurance that will go down in history as one of the most ridiculous waiting periods in all of 2015. In March of this year we decided it was time to start the process of getting a new manual wheelchair for Caleigh. She had started growing with recommendations of Boston's CAIR team and we knew she was going to continue.
Months later the paperwork was finished. Doctors had signed on the dotted line. Therapists had added their two cents. Caleigh's custom molded seat had been well.... molded to her body. The submit button was pushed.
Shockingly United Healthcare approved the "majority" of Caleigh's wheelchair. They denied the push handles, hand rims, arm rests and a few other items. This is HUGE though. Not once in the eight years that we have had UHC have they approved a piece of equipment.
Good news, right? Well, the way that the DME company works is a bit tricky. They get an approval, order the equipment, deliver the equipment and have the parents sign a form basically saying that whatever insurance doesn't pay they are responsible for. Then they bill insurance. Then they bill the parents.
Caleigh has Texas Medicaid as a secondary insurance with the Medically Dependent Children's Waiver Program. Medicaid typically picks up what UHC doesn't cover. This has been the biggest blessing our family could even think of having. If we didn't have this my friends, we would be writing to you from a cardboard box. They've covered every piece of equipment and medical treatment that UHC has denied over the years.
Suddenly we have a problem with Medicaid though. They have denied Caleigh's wheelchair twice now. Both times stating that her current chair needs to be repaired. There is no repair for an outgrown frame and seating system. Can't be done. We also received a denial for speech therapy the same week. That has since been resolved, but I swear were on the black list somewhere!
We've been assured that the new wheelchair is being ordered anyways and it will be delivered, Medicaid approval or not, before Caleigh makes her debut as a flower girl in her Uncle Heath's wedding.
This has struggle has been heavy on my mind for months now. I'm grateful to be able to choose a wheelchair for Caleigh and have insurance that covers her many needs, but at the same time I'm looking forward to the day she is scooting around in her new chair and not her old "baby" stroller.
So what would you have done? Would you forgo the age perceptions and went with the stroller or would you have pushed through with the outgrown wheelchair? I'd love to know!