Thursday, March 04, 2010

Wheelchair (Mis)Adventures

While we were waiting for Emily's wheelchair, we could not wait to get it. The anticipation was almost overwhelming! Emily was really starting to outgrow her stroller and we were happy about getting a chair that would offer Emily the support that she needs.

Now, that we have the chair, we are starting to get used to it. This is a slow process (especially since the weather hasn't been great and she hasn't spent much time in it). We naively thought the wheelchair would make our lives easier. ha! We didn't realize how easy it was to put Emily in her stroller and go. We cannot do that with the wheelchair! The chair is better for Emily, and we are SO thankful to have it, but it is not easier by any means! Sometimes it is just easier to carry Emily in and out of places - especially if it is a quick trip.

First, let me explain that the chair does come apart. The entire seat pops off, the handles fold down and the entire wheel base folds up. The seat isn't too bad to lift, but the wheel base of the chair is HEAVY! The muscles I was building by carrying Emily were nothing compared to the muscles I will have from lifting the wheelchair! The funny thing is, the chair does fit into the back of our car all together, but I am not strong enough (or tall enough) to get it in or out like that.

The first time I used it by myself was at a weekend parenting conference at our church. Mike helped with the cooking so Emily and I arrived alone on Saturday morning. We don't always use her wheelchair when Emily will be with the kids at church because it is really high up and I want her to be able to interact with the kids (we use a Tumble Forms chair at church most of the time - it is lower to the ground). Since we would be eating breakfast and lunch, I thought it would be best to bring the chair so Emily could sit up high at the table with us. I was able to get the chair out of the car and put together with little trouble. I did forget to recline it so when I put Emily in it she just slumped forward (she cannot sit up on her own) - NOT good! Someone had come out to help me, so I had him recline the chair for me, while I hung onto Emily.

When we left the church after lunch, I put Emily in the car and then went to work on taking the chair apart. It was pretty cold out and it was starting to snow. I got the seat off with little trouble, but when I clicked the little lever to fold the handles down, I got my finger stuck. My finger was pinched between the lever and the medal bar. I was bent over in pain as my finger was THROBBING. I was trying to hurry since I had the back of the car open and I didn't want Emily to get cold. As I lifted the chair into the car, I noticed the blood. I managed to take a good chunk of skin off my finger. I ran back into the church really quick to rinse my hand and grab a paper towel. Not the best way to finish my first outing with the wheelchair!

The next time I used the chair by myself was at church on a Wednesday night (Mike and I usually drive separately). I could not get the seat onto the base no matter what I did. I tried to peek in the building real quick to find Mike, but he was not around. Two ladies came out to help. One entertained Emily while the other helped me figure out the chair. It was pretty comical! We finally got the chair together, but the whole experience was not helping my confidence with the chair!

Our next adventure with just the two of us, was a trip to the mall. I wanted Emily to be able to spend some time in her chair - so she could really get used to being in it while we are out and about.

Getting from the car into the mall was an adventure! We've had some snow here and the mall parking lot had not been fully cleared. I parked in the handicap spot and headed to the nearest door that had the handicap symbol on it. Turns out that store is closed so I had to go to the next store down. The curb was pretty high and I had no idea how I was going to get the chair down by myself. As I got near the end of the sidewalk, I noticed a slope off to the side. I went down there, but had to get in front of the chair to pull it through the snow. A security guard spotted me at that point and came over to help. He was nice enough to hold the door open for me while I went into the store. I would have been more grateful, but I was too busy wishing I was invisible, since the next store down was Victoria's Secret!

We didn't stay in the mall for very long. Emily did pretty well in her chair. She would whine when we stopped to look at things, but nothing major. She just wanted to be on the move! The stores were mostly accessible although some of the aisles were pretty tight. The reason we didn't stay long was because I have never felt so uncomfortable in my life! I felt like we had a neon sign above us and everyone was staring at us. I was not prepared for that kind of response! I expected some questions and even some looks, but this was much different. Every person we passed, stopped to watch us walk by.

I am really going to have to get used to the attention the wheelchair brings. When we first got the chair, I was so excited about the possibilities for Emily. I mentioned that I didn't feel emotional about it at all. Well, this experience certainly stirred up some emotions. We are now THAT family - the family with the special needs child. Of course, we have always been that family, but it wasn't obvious to strangers. When Emily was in her stroller, she looked like a typical toddler. That is not the case anymore. We have crossed a line in the sand and there is no turning back.

Please don't misunderstand me. I am not whining and complaining about our life. I have accepted Emily's diagnosis and what that means for our family. I do not wish for a different life, because this is the one that God has chosen for us and He certainly knows what is best. I just have to accept the fact that our life is different from the lives of those around us. I know that sounds silly. Of course, I know our life is different than the average family - I just don't spend a lot of time thinking about that. My life is all I know. I have to accept the fact that people are curious about what is different - maybe even afraid. I cannot hide away because people will stare at us. I cannot avoid talking to people because they may make careless comments.

I have been given this life for a reason. I have to embrace it fully and go out into the world with my head held high. I have to do my part to help people understand that CP isn't something to be afraid of. I have to tell people that my daughter isn't broken. She isn't less important than anyone else because she is in a wheelchair. She is exactly the way that God designed her. She is not just beautiful on the outside (in my completely unbiased opinion), she is beautiful through and through. I am just going to have to break out of my cozy little shell and let the world know that!


Anonymous said...

Wow - I hadn't even considered that the chair would bring that much attention to you. Everyone who knows Miss Em loves her for who she is and we really don't see the special chair - we just see her precious smile and beautiful face!


Territory Mom said...

Try not to define yourself as "that family". I have to work on it too. You were chosen for this mission because God's grace which makes you "special". People stare because Emily is so beautiful. I know its frustrating. It will all come together and you will be the master of the wheelchair.

Mo said...

Good for you!

When Oia wears her AFO's and her glasses I feel a bit of the same way but overall so darn proud of her.

Stephanie's Mommy Brain said...

Ow! Your poor hand! I hadn't thought about the attention that the chair would cause. Sounds like you are working through another 'reality check.'

I think any of us who are out of the norm feel that difference most keenly in public. I forget how strange I am to have 4 kids under 6 until I'm at the grocery store with all of them. I always get stares and comments. It was unnerving at first. Now it's mostly tiresome.

Anonymous said...

You've been a trooper adjusting to the wheelchair! Can you ask her therapists to advise you on each of the issues you shared?

There are commercially made ramps for rolling a chair into a vehicle. If your therapists don't know about them, try an online search. Here's one:

Crafty people make their own.

On most models (don't know what you have) you can recline the chair with the child in it.

Hang in there - it will get easier with repetition. If you would like the blogs of parents with older children who use wheelchairs, contact me. Barbara

Katy said...

I see Barbara made a suggestion about wheelchair ramps, but someone on teh CP support board suggested luggage ramps, which I suspect are cheaper!

I'm sure it's tough having people stare. Even if you haven't changed, the way people look at you has and that's going to take some adjusting.

Kristina said...

Just wanted to chime in here about the weight of the chair - definitely look into getting a ramp. Your back is really important and you can't afford for it to go out from moving a chair in and out of the car! We bought one that is a suitcase ramp that folds up and I store it alongside the chair in the back of the minivan. I have info. and a link on it on my blog if you search under equipment (it's the long post). Let me know if you want me to take some photos and send them to you. I practiced with a board at different lengths and rolled the chair up the boards before I decided what size to buy.

Also, on the staring. That was really hard for us to get used to. What I found out from conversations with people, though, is that many people really thought her chair was a stroller! I thought it had a NEON Wheelchair sign over our heads and several people came up and commented on how much they liked her stroller and asked me where we bought it! I couldn't believe it. I was even turned down by a shuttle bus drive to put down his handicapped ramp and he told me now to fold up my stroller as the ramp is only for the handicapped. After I explained it to him he was so embarassed, but it was quite nice to hear that he thought Emma was just one of the gang out in a stroller.

Sometimes the stares are not what we expect :-) While we do have stares still, I tend to think they are more at my happy, smiley little girl and less at the chair since now I feel more comfortable that most people just assume it is a stroller.

I also think the comment about checking with the therapists on how to address your issues makes a lot of sense. Our PT adjusted a few things for us when I mentioned in passing some mishaps and I couldn't believe what a difference it made!

Oh, and we now use an umbrella stroller when just running in to a store for a moment - no need to get out the big guns for a 5 min. round trip in and out of the car. Maybe your car has enough room for a small stroller for Emily for such situations?

Enjoy the chair and the newfound freedom for Emily!

Anonymous said...

Don't be discouraged by the attention-it's that attention that will make you the testimony God intends you to be. Please don't consider me insensitive. People are undoubtedly just curious and uneducated. When I first seen a picture of the wheelchair on the blog, I found myself studying it pretty hard-it is a beautiful piece of workmanship that is going to change Little Em's life for the better. I don't recall ever seeing one like that one, which includes me in the category for those who are simply uneducated about CP and the equipment used to aid. Sorry you had to experience this but glad to see your determined attitude.


AshleyS said...

They always advertise that the chairs come apart and you can just throw them in the car--yeah, right! I'm so glad you have the van now so you can just put it in without messing with taking it apart. Makes "quick trips" a tad bit quicker!