Well, yesterday was an extremely emotional day for our family. Though some of us handled the news better than others. It wasn’t a total surprise when Natalie called me to let me know the news. Hailey’s PT recommended that Natalie contact children’s hospital about getting her a wheelchair.
There has been talk about this in the past, so I don’t know why it hit me so hard, but it did. Like a ton of bricks. I was at work and I just couldn’t wrap my head around it, I couldn’t get myself together and I felt awful when my waves of emotion took the place of getting my job done, but I couldn’t concentrate, I just wanted to go home and go to bed, put the covers over my head and wake up in the morning and discover it was all a bad dream. I felt compelled to drive over to Natalie (because I know she was feeling it even more than me) and hug her and let her know that everything was going to be o.k. Little did I know that she was already headed over to my house with Hailey. She said she was in the neighborhood, but I think that subliminally, she wanted to be with people who love Hailey. She knows that she can always count on us for support. We have all been through so much together as a family. I guess I kind of secretly hoped that Hailey would get to a point where she would be able to walk with assistance, and that one day the only thing that she would need would be help from a canine assistant. So to here from a professional that this is not the case, it just knocked the wind out of me.
Now that I have digested and regurgitated the news, i’m o.k. with it. Why wouldn’t I be? As my husband says “Hailey is still the same beautiful girl today, as she was yesterday and will be the same beautiful girl tomorrow” I know this is true. So, as I usually do when I hear new developments about Hailey. I get on the internet and I talk to my blogger friends, the people who understand first hand about what is going on in our lives, because it is also going on in theirs.(special thanks to Cary from
about the small stuff) I have to constantly remind myself to stay focused on the positive and not let these barriers swallow me up, and to remember that wheelchairs are just a good way of getting around if a person has trouble walking. I also know that there are others out there who do not have the mobility to use a wheelchair and I should be grateful that Hailey is a candidate for one. Just because Hailey will be using a wheelchair does not mean that we are giving up hope, that one day Hailey will walk. We will continue to challenge her to reach her own personal potential, whatever that may be.
There are just so many unanswered questions:
I wonder if Hailey will use a manual wheelchair, or if she would be better suited with a power wheelchair? Will her motor limitations allow her to maneuver the controls like a joystick, or will she have the strength to push herself along. She will have to get used to it in school, at home, travelling etc. It will be quite different.
I wonder about how the wheelchair will transport? If we need some kind of conversion van, or lift. I wonder if we will eventually need a wheelchair ramp? I wonder how Hailey will adapt to using this new mode of transportation? My sense and my hope is that she will adapt fairly well. Her strength, determination and perseverance will be tested once again. As I have said so many times before, I believe in Hailey, she has led the way for our family on this uncertain path this far and she will continue to lead us down this bumpy road, only this time she will be doing it on wheels!
Glad you found Cary! I do have to say, getting a wheelchair for Nina was the best thing! It allows her to be INDEPENDENT and ultimately that is what we want. And you are right, there is this wrong idea that wheelchair means that a child won't walk, it is an idea encouraged by the phrase "wheelchair bound" which really should not be said any longer! First of all, because people that do need their wheelchairs at all time, are not bound, but rather freed by them. But also, because it gives independence in areas. I don't think Nina will ever be able to walk long distances on her own without some sort of help, so in those times, she can wheel around and have fun...on her own! It really will be okay, it seems so difficult, I cried too wrestling with this at the beginning, now I look back and I am so glad we have it! And Nina is especially glad!
ReplyDeleteThis post made my heart heavy, both for you, and for myself as I am fairly certain this is coming for us down the road. From what others like Cary tell me, I KNOW it is a good thing, but I can understand how hard it is to get used to. Thinking of you and Hailey, but she will rock it like everything else, and you her family will as well!
ReplyDeleteI love the quote. "Never give up on anybody Miracles happen everyday" Just a short story about a friends child, born at 26weeks TINY 1st told he wouldn't make it, then that he was blind and would not walk or talk. Yes he is blind but he walks and talks. It took a long time for him to do both but they never gave up and he is a miracle today.
ReplyDeletePrevious comments said everything that I am feeling and thinking. Your attitude and the stories about Hailey are truly an inspiration to all of your readers!
ReplyDeleteOh gosh I sooooo get this pain as we just went through it. I echo everything Ellen said and I have to say getting Aidan a power chair has been the best decision ever. We almost didn't get it because it doubted his ability (shame on me) to drive it and now he can go where he wants without getting fatigued. I've never been so excited about his accomplishments, but yes, I understand why pain is the first response. Can't wait to hear about your family's journey with this one.
ReplyDeleteIt can be a pretty tough event. Indeed, it can be a test of her inner resolve. During times when she doubts herself, you guys have to be there to support her and bring her back to the right path. Good luck, and you can do it!
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