"Suffering the Slings and Arrows of Outrageous Fortune"

We have an a wheelchair evaluation scheduled for next Monday and that has stirred up some interesting conversations around here.

To me, this is something that was a long time coming and quite expected. We already have a rental chair that we ended up mostly buying ourselves – have had it for almost 2 years. She doesn’t use it as much now as she did pre-Diamox, but she still uses it on a regular basis. For when she can’t walk long distances (well, medium distances – I guess it is all relative. Basically, a trip to Walmart or  going to a doctor’s appointment at the hospital requires the wheelchair – for her, those are long distances. Something like a trip to the zoo or an amusement park – forget it. Most days she wouldn’t be able, even in the chair.). For pain relief. For pacing. For joint preservation. For dealing with Orthostatic Intolerance/ POTS. For babying those frequent injuries since there isn’t a set of crutches on earth that she can use without damaging herself. In the aftermath of an injury, she would be essentially bedbound or homebound without a chair.

Em requested/demanded the original chair. She had rolled her ankle badly and literally could not bear any weight on it. She said,’ I have to have a wheel chair’, so I got a script from the doctor. I took about 2 minutes to freak out about it and then just got on with it. 6 months or so later, down at Cincy, the OT and PT had pointed out that she needed a better chair and Andrew and I agreed. At the time, Em was pretty resistant to the idea, so we didn’t push it.

Em has recently requested a custom wheel chair and I am now pushing for it.  Maybe she won’t need it forever, but she does now. When she says she needs it, I have to respect that. I don’t love the idea of a wheelchair, but I think Em and I have simply been down a long road that has brought us to a basic acceptance that this is her reality right now.

Andrew, not so much. In September, it will be three years since her big dislocation that started this journey and Andrew is apparently just now realizing that the EDS is for keeps. I think he has done his very best to bury his head in the sand, even while going to doctors appointments and discussing PT and meds and wheelchairs. Actually, it would probably be more accurate to say he buried his heart in the sand – I am pretty sure his head gets it, but his heart has been figuratively plugging its ears and chanting ‘I can’t hear you, I can’t hear you!’ like a 4 year old this whole time. I think he was convinced – or wanted to be convinced – that I was overreacting or just plain crazy and the doctors were just being pessimistic or just plain wrong; above all, he wanted to believe that she would grow out of it.  He is just now starting to face reality – so he is at least 2 years behind me and Em in the acceptance department.

So, when I casually said, ‘We have a wheelchair eval scheduled’, he didn’t just go, ‘Oh, ok. When?’ like I thought he would. No, he went the I-don’t-want-my-kid-in-a-wheelchair-and-she-shouldn’t-need-it-and-this-might-be-the-end-of-the-world route. While it was a tad bit bewildering, his reaction was not wholly unexpected. (It was, however, quite ironic considering he has worked in PT for almost 20 years.)

While he is able to nod knowingly at a PT appointment and professionally say what features are needed in a wheelchair, that is not at all the same thing as the heart accepting that your child is facing a lifelong medical condition that will do its very best to defeat her at every turn. Not an easy thing for a father to accept – especially when he is quietly battling the same condition. So, I have a lot of sympathy for his grieving process.

But, life marches on and she needs a wheelchair that actually addresses her needs, whether we like the idea or not. So, Andrew is likely going to be playing catch up for quite a while and it will probably not be a pretty sight – he is being dragged kicking and screaming towards acceptance, for his own EDS issues, as well as, his daughter’s issues.

Bottom line, Em is accepting and even a little excited about what a ‘real’ wheelchair will mean for her life. So, as parents, we need to suck it up and do whatever is best for her. If that means being happy about getting a custom wheelchair, then so be it. When your kid starts incorporating wheelchair accessibility in her plans for redesigning her bedroom, I am thinking that the least you can do is be as grown up as she is about the whole thing.

Easier said then done, most likely, but what other choice is there?

 

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Comments on: "The Path of Least Acceptance" (4)

  1. Hello Beth…
    I can understand how your husband feels…to me it is like you have a heavy heart. But, I agree with what you said …. you need to respect your child’s wishes and do what you can to make them happen. Amanda recently let me know she felt a hospital bed at home would be helpful to her…one that she can adjust the head and foot postions…help with her jaw, neck and back pain for sleeping and just a place for her to rest more comfortably than the present bed she had. So, I immediately began looking into it for her. Called insurance to see if they would cover it, found out who our durable medical equipment provider would be locally and we went to look at the bed to see what she would get if we could get a prescription for one. Then, after our initial research into the home hospital bed, I contacted Dr. Tinkle about it. I was pleasantly surprised at how quickly he wrote a scrip for the bed because I did not know what to expect….was not sure if he would write the scrip for the bed. It made us wonder why no one had ever suggested it before for Amanda. But, it worked out great…In a little over a week of Dr. Tinkle writing the scrip, her hospital bed was delivered and has worked out great. It’s like you said…our kids are mature enough to realize what they need and we need to respect that no matter how hard emotionally this may be to accept.

    Hope Em continues to improve after her surgery. Amanda is going to be back in the hospital next weekend for her colon dysmotility and a scope due to the Eos. Then, she will begin an all formula trial as the food elimination diet Dr. Abonia has her on is not improving her symptoms. We see how that goes and that will determine what path is next. A lot going on in August for appointments at Cincinnati Children’s.

    Take care,
    Karen

    • Hey Karen,
      First, I want to apologize for not getting back to you previously. I haven’t forgotten you! I just haven’t been very good at keeping up with my correspondence recently. Been kind of swamped and overwhelmed for a while. I will get to it – I promise!

      Secondly, our kids never fail to amaze me with their self awareness and maturity. I am so glad Amanda thought of a hospital bed and that you and Dr. T were able to make it happen. I know that the air bed Em had in the hospital was very comfortable – if I could get one like that for her, I think I would! Sleeping well is SO important – anything you can find to help is worth it! It does make you wonder why it wasn’t suggested by someone already. I am just glad that you got it and it is working out so well.

      I hate to hear that the diet hasn’t helped but hopefully Dr Abonia can find some answers for you. There have to answers somewhere! I will be praying for you – sounds like you have some important appointments scheduled and I will be praying that your path is illuminated by them.

      Will you be able to get to the Conference at all? If so, I would love to meet up with you for a face to face chat! Em is hoping to go down for a day, but we will see if that happens.S he is doing fairly well – she is still slowly losing weight but her appetite has improved a little and she is generally feeling a little better at least some of the time. The pain doc upped her Neurontin – doubled it – and so her pain has drastically reduced. I hope that lasts!

      I have been thinking of you and Amanda and will keep you in my thoughts – let me know how things go.
      Talk to you soon,
      Beth

  2. I have been very close to where you are now. I realize that my Alysha is not as severe as your Em though. Alysha spent 5th grade with earlier walking periods then her classmates. Middle school about wiped her out. We were trying desperately to get her a power chair when, amazingly, a family donated one to us. it belonged to the husbands mother, it was barely used! The lady had a small build so it was actually perfect for her.She used it for the remainder of 6th grade & on into 7th, 8th grade she was homeschooled, it was too much for her. Then she wanted to go back for highschool. She still used her powerchair for 9th. Then 10th she was getting worn out, but she did’nt want to stop. She did her best to keep going in 11th, but didnt want to use her chair anymore, social awkwardness. It didnt last. She came home and finished highschool. OK, I went a little off point. I just know that without her chair, she wouldnt have been able to accomplish as much as she did, so I get it at least on some level. She did use the stores power carts sometimes, but stores frown upon that. (They want you to be 18) We did use her chair for any events requiring walking, especially on hard surfaces, and the school was great on field trips, they even let her have a travel buddy. I hope things work out for Em to get her chair without too many obstacles. BTW Alysha donated her chair to an org who provides them for kids, and they play sports with them. It was a great org to find. I was so proud of Alysha, she did’nt want to sell her chair, just bless someone else with it.Yes, our kids are often very mature about these things. 🙂

    • Hey Katy,
      I know a lot of people have a real emotional reaction to the idea of a wheelchair. I was really ambivalent when Em first requested a chair but I couldn’t argue with her need for it at the time. But, when I saw how her quality life vastly improved and her world opened up after getting it, I put away all doubts – I hadn’t realized just how homebound she really was until she was able to go and do after getting it. It literally changed her life and I can’t imagine what her life would have been without it the past 2 years. So, I totally understand when you say Alysha was able to accomplish more with it. A wheelchair is just a tool to overcome challenges and anything that improves quality of life is a good thing!

      It is so great that Alysha was able to bless someone else like she had been blessed. EDS totally sucks but the kids who have it can end up with an amazing maturity and compassion. They will make the world a better place – I have no doubt! I bet you are very proud of Alysha!

      Thanks!
      Beth

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