Stay Up to Date! Like us on Facebook  and Twitter  for the latest news and announcements    

Looking normal

For six months we have been fighting with our insurance company in order to get our daughter Eva a wheelchair. She turns 4 in April, and all of a sudden we left the world of overgrown baby items and crossed over into the land of special needs and durable medical equipment. Eva has Leigh's disease, a form of mitochondrial disease, that affects her muscles and neurologic system such that she cannot walk or talk. Sounds terrible, right? In reality, once we got over the diagnosis, we find so much joy in Eva. For a little one who doesn't walk or talk, she has more personality and charisma than many adults that we know.

Dealing with insurance for basics like formula or durable medical equipment (i.e., a wheelchair, a feeding seat, a way to take a bath) for a parent who already has her hands full working, running a family and caring for her dependent special needs child is the definition of stress. I have a Pavlovian response when I see an envelope in the mailbox from the insurance carrier.

Meanwhile, in January we finally got Eva's wheelchair. I must say, it's fantastic! The degree of support and size are perfect for her. At the time of delivery, the vendor commented, "This must be so hard for you…putting your daughter in a wheelchair." Are you kidding? I'm ecstatic. She weighs 40 pounds, and finally she feels comfortable. I've come a long way.

So, right away I pack up my kids and away we go to the mall (early, before the crowds). My kids have a blast pushing Eva up and down the mall at a racewalk speed. Eva is loving it. We are having more fun than Disneyland. We even have ice cream and hot dogs!

However, I can't help but notice that people are giving me sympathetic looks, or a sad smile. One woman even stuck out her bottom lip - really! We traveled into the Disney store (Eva loves princesses) and well-meaning mothers coveted their children and cleared the aisle. Keep in mind Eva looks pretty normal. While we were happy, jubilant in fact, to be out with Eva and her new wheels, I was taken aback by the sympathy and interpretation that our daughter was somehow less fortunate by her position. I sensed that people were afraid to interact with us.

As I mulled this over during the rest of the weekend, I started to think about how much we depend on appearance in order to estimate one's ability. That's probably the Achilles heel of mitochondrial disease. When one "looks normal", how can you really be dealing with a disease or disability? I've been out with Eva plenty of times in a stroller and we never got a second glance, even during the times when I really needed extra help (boarding an airplane, for example). Putting her in a wheelchair changed everything.

Many adults and kids with Mito can walk…some of the time. Or they can talk…until they run out of energy. Have we moved beyond discriminating against people with disabilities to a point now where we as a society have taken a hands-off approach instead? For fear of discrimination, the aisles will clear when the wheelchair enters. How do we, the community of people with all kinds of abilities and special needs - visible and invisible- teach our neighbors to embrace us instead?

Cristy Balcells RN MSN, Executive Director and Mom of 3

www.MitoAction.org Support•Educate•Advocate

© 2008 Cristy Balcells RN MSN, all rights reserved.

Eva & her wheelchair

No votes yet

Comments

bmckittrick's picture

bmckittrick

06/22/2008

I know exactly how you feel.  I have a 7 year old daughter that also has Leigh's disease and she is in a wheelchair as needed.  We don't need it at home just yet but we use it every time we enter a store.  I get the same looks from people in the store.  I can understand kids staring but when the adults stare it just bothers me.  I also have some people that will ask what is wrong with her and I feel better with them asking versus them staring.  My daughter is 60 pounds and it is hard even getting her in the van so we bought a step stool for her to step into the van and it has taken a load off my back.  Over the past few months we have noticed some progression of the disease and just take it step by step and hope some day soon there will be a cure.

Good Luck My Prayers are with you.

Becky

babybearbuzz's picture

babybearbuzz

08/19/2008

Look how pretty she is! We get the same looks from people. My son is 6 years old and uses his wheelchair any time he has to walk more than about 100 feet. I have even had other mothers of children in wheelchairs tell me that I needed to be making him try to walk and build up his muscles because that's what their childs therapists told them to do for their childs CP!

cellolover's picture

cellolover

02/03/2009

I use a wheelchair pretty much all the time. Sometimes people freaking out is just part of life. However, I have found that if I'm doing well a smile and a hello makes most people comfortable. People don't know what to do, so if I take the first step by saying hi that helps them relax a bit. Of course on bad days I don't talk to anyone! I am trying to learn to laugh at the silly remarks people make. My older sister says that often in life we only have two choices: laugh, or cry.
lorimar's picture

lorimar

02/04/2009

hi I use my chair, for long distance,I hate the stares I get too.Your right mostly from adults.My grandma was a card player,she would say to treat life that way. Play the hand your given the best that you can. So I'm going to open with a Hi, and a smile:) Thanks....Lori:)
arktjk's picture

arktjk

04/20/2009

We had the same issue with our daughter when she stopped walking suddenly at the age of 6 1/2 years. We needed a wheelchair right away. While waiting we pushed her in a baby stroller. What a relief when the wheelchair finally came. Some people did give us sad looks, but many came to us and asked about her condition. Some children even asked about her, although some looked scared. Not long after, she had a tracheostomy, so people were curious. We were more than happy to discuss MELAS with them. She died March 10 this year from septic shock as a complication of the MELAS.
janice's picture

janice

04/21/2009

My heartfelt sympathy to your family, from my "MELAS" family. Big hugs, jan
Pn02181's picture

Pn02181

04/01/2010

I just bought S-adenosyl methionine (comes in 200 mg tablets), Coenzyme Q 10 (comes in 100 mg tablets), vitamin c, and L-Carnitine (comes in 250 mg tablets). My son is 9 and turns 10 years old tomorrow. He developed dysautonomia suddenly after getting the H1N1 ('swine flu') intranasal spray, and I have bought the above mito cocktail items but do not know if anyone else has tried it on their child and what the safe dosage would be. I have been told by a Nutritionist at Jarrow Formulas (one of the distributors of the L-Carnitine and S-adenosyl methionine) that generally children take 1/2 the dosage of adults. He was not very helpful beyond this, and my pediatrician is certainly useless because she is not the one who knows about dysautonomia. I have had to educate her and the physicians that had misdiagnosed my son with attention-seeking disorder because they did not know about mitochondrial dysfunction and its role in dysautonomia. Any help from any of you is appreciated. My son is like many of your children described on this site: Cannot walk especially in the morning, and then he can walk later in the day if he is not stressed out from physical exertion and illness and weather change etc.
Tina_EvesMum's picture

Tina_EvesMum

04/02/2010

We have three children who use wheelchairs. I sometimes resort to one myself although I usually use one of the kids as my walker. Our favourite passtime/amusement whislt out and about is watching those who love to turn and stare at us as they back into a lamppost or knowc over a stack of baked beans in the supermarket...You can turn other peoples reactions into your amusement and it really can become a fun activiity...expecialy when they realise what an idiot they have been and how amused you are by it! We have been met with ignorance in supermarkets too. Often Christina and I take Rosie and Eve shopping. I push Eve and a trolley and Christina has Rosie in a disabled trolley, Rosie wil often jump in and out the trolley and lay across the floor or generally be a nuisance! Most people are great, the majority will laugh with us rather than stare at us! Rosie will sometimes get up and grab someone elses trolley to much amusement. However there is always one grumpy person...often an elderly lady oddly, they will strt to HRRMMPH and barge and generally make it known we are in the way...Christina is often known to go up to them almost nose to nose and say....The word you were looking for was EXCUSE ME PLEASE! It always wins a roar of approval from the other shoppers and a redfaced shuffle away by the offender! Enjoy your kids wheelchairs, braces, feed pumps, oxygen tanks...they are the wherewithall of keeping our kids as hepy and healthy as we can...rather than dreading each piece of euipment we have learned to embrace it as a friend and look forward to the benefits it brings in quality of life! Hugs