Monday, June 10, 2013

Facing Your Fears - Do Disabilities Scare You Away From Enjoying Family Outings?

When we were kids, my Uncle Victor and Aunt Lina used to take me and my cousins to K.I.S.S. park every summer. At that time, there were about 6 – 8 of us, cousins and siblings, all elementary-school age. K.I.S.S. is an anagram that my uncle made up but back then, I really thought the park’s name was Kiss – only years later did I find out that it wasn’t! The adventure would begin with a mysterious letter we would get in the mail (what kid doesn’t love pulling a letter out of the mailbox with their name on it?) It would be in the form of a puzzle or note of some kind with clues. We would put the puzzle pieces together or figure out the riddles and discover that we were about to embark on another great day at the park. I honestly can’t remember if there were any other adults there besides the hosting couple or how we all even got there! I just have these wonderful memories of hot summer days, dusty games of soccer & freeze tag, canoe rides, horseback rides and fun, fun, fun! The entire time I wrote this section, I did so with a big smile on my face!

Many years later, when I was in my early 20’s, there was a thought to revive this old tradition. Several of us were excited when Uncle Victor suggested we hit the ol’ park again. My daughter was a toddler and I was having a (very) difficult time with adjusting and accepting life as we knew it but I was filled with nostalgia and excitedly looked forward to K.I.S.S. with my family. By this time, I was in a very deep depression over my daughter’s state of health. She couldn’t sit on her own, let alone walk; she was non-verbal so there were no first words or “mommy”; she was having seizures that were progressively getting worse. When I was pregnant, as all moms-to-be do, I had these visions and fantasies of how life was going to be. Her first steps, first words, going to the playground together, shopping for school supplies, sleepovers, giggle-fests…Everything crashed and burned the day she was born. I found myself constantly running through flames, trying not catch fire as I stumbled through the burning building that became our lives. Every milestone missed, every specialist appointment, every “normal” kid who walked by us was another spark, a new fire threatening to engulf me. I can tell you that practically nobody in my life had even an inkling that I was feeling this way. I’ve always had a hard edge to me and I’m sure I came off as angry or bitchy. But I felt tremendously lonely and terrified and sad. These are still feelings that stick with me today, thankfully not to the same degree, and I know that the majority of parents who have children with disabilities know what I’m talking about. I was having a tough span of days filled with these icky feelings when I wrote “Mom Missing Out On Her Milestones.

It was difficult for me to enjoy the day at K.I.S.S. park even though I had hoped that it would be a great day. There they all were, those walkers & talkers, flitting about, eating burgers at the picnic table we couldn’t get a wheelchair under no matter how we angled it, playing kickball, just doing what normal people do at a park. Enjoying the sun kissed summer afternoon, their laughter floating in the peaceful breeze as puffy clouds gently slid across a sapphire sky. That’s how my eyes saw their joy. Soft. Velvety. Melodic.

All I could think about was the uneven ground that I had to fight with the wheels of her chair. There were tree roots and branches littered about, hilly sections, small ditches and other barriers that come naturally in a park. We were supposed to walk over to the canoe area – a walk that we always enjoyed in the past – but I kept thinking about the struggle I would have pushing the chair over the grassy areas to keep up with the rest of the group. Not to mention the uncomfortable bumpy ride for my daughter who was sitting in the chair! And what about the canoe ride itself? How were we going to safely transfer her into the canoe when she can’t help at all? She can’t sit without full assistance – how can we get her to actually stay in there? And if we do manage all that and make it back, how will we get her out of it now that we’re IN the water and the canoe is bobbing about?

These of course were only (some of) the PHYSICAL worries that consumed me. I haven’t mentioned the bigger meaning behind the physicality involved in bringing along a person like my daughter to a fun day at a park! Seeing everyone else dashing about care-free made our reality (mine & my daughter’s), our differences, actually palpable. These differences weren’t just a notion. No, they were real; unquestionable; cold and hard. The toll this takes on a person’s psyche is sometimes unbearable. There are some days where I have to work at keeping my joy.

She is now 15 and looking back I wish I had done so many things differently. Isn’t that how it always is; 20-20 vision tends to be perfect. Why did I allow myself to focus on the negative parts of the trip? Thinking back on it, the only memories I have from that day is a sad game of kickball (for me; everyone else was having a great time, as I should’ve been) and the canoe ride. (Which, by the way, wasn’t at all terrible. She was still little so transferring is not the game of logistics it is today. But even today, I have Nick Vujicic to remind me that pretty much anybody can get in and out of water!) Because of my own personal issues, I didn’t allow myself to enjoy what she could do. She was having a beautiful time with her cousins even though she couldn’t run around bases or get a turn throwing the boomerang and wasn’t that the point of the day?

I find myself still paralyzed with fear to this day. I want to do things or go places and decide that I will take her no matter what but then I chicken out at the last minute. I start thinking about the things that can go wrong – maybe there won’t be an accessible area for us to sit/stand; maybe there will be steps we can’t get up; maybe it will be too crowded and she won’t be able to see anything except strangers’ butts; maybe we won’t be able to find parking. The list goes on and on. And yes, those things can happen. On our first family vacation in 2012 we found ourselves blocked out of a building that housed the resort’s pizzeria, arcade and ice cream parlor because it had steps, even to the first floor!

But what if things like that don’t happen?? What if we go and there is a spot waiting for us to park in, the venue has curb cut-outs and ramps leading to it so we can get there and there’s a wheelchair-accessible area so she doesn’t have to miss out on seeing what everyone else is seeing? What about that?

There are some things that we just can’t do, for logistical and emotional (on my part) reasons. We can’t go to certain people’s homes because they're just not accessible. Taking the train into the city for a day of sight-seeing and shopping – not gonna happen. Spending a Sunday at the beach from dusk till dawn with coolers filled with bagels, cold cuts and bottled water – a thing of my past. But why should that stop us from creating wonderful, loving, fun-filled memories doing things that we can do? It shouldn’t –  and it won’t!

Did you have fears or sadness surrounding family outings like me? Do you still? What do you do to try to get past these feelings?


  1. Fear is something that envelopes us as human beings. I think we've all had moments like that (God knows I have too many of them), but I think if you asked your daughter what she sees when she sees you she'll say a hero because that is what a hero does. They put aside their fears for the sake of someone or something else to ensure sanctuary. That is exactly what you did which caused her to be around people she loves. She realizes the sacrifices you make for her and in her eyes she probably doesn't see fear. She sees bravery, a person who can defy the obstacles that she cannot and a person who can provide protection when she needs them. Take comfort in the fact your her hero or better yet Walking Fortress Of Solitude.

  2. Thanks, Vlad! When I reeeeaally don't want to do something because I'm afraid of what may be, I just try to tell myself that it's not for ME, it's for HER. I won't lie and say it works every time but the truth is, it has gotten as with pretty much everything in life, practice makes perfect (or as close to it as possible!)

    1. Despite what many authors would have us believe, parenting does not come with an operators manual. Even under easier circumstances, there's always going to be trial and error, and typically more error than we'd prefer. (And, of course, there's the perfect hindsight you mention in your post.) It's hard to avoid feeling self-critical--and a certain amount of self-criticism is crucial as an antidote to complacency--but I can't see that you have anything to beat yourself up for. And what you've learned during your daughter's lifetime is valuable not just in terms of how you care for her, but also in the value that others receive from your candid and thoughtful reflections.

    2. Thanks, Prof...that means a lot to me.

  3. Yup, Melissa, been there, still there, and still doing that. For us, it has also been 15 years; for the first 12 Adam was energetic, athletic, yet, he knew in the deep cellular levels that life would change. We have not been on vacation for 15 years, but it's ok. Life, as it is, has much purpose and has taught something I would never have known about...
    We don't take Adam to any place where he cannot have our full attention. I don't mind navigating the barriers like steps, narrow hallways, etc. I do mind that no one pays attention except for about 10 seconds. They expect that we should plant him in front of tv and get on with the party. There is no party unless you choose to involve and engage him. Probably fear, lack of knowledge, indifference...who cares, doesn't happen. So our small unit stays small.
    Most comforting reading which explains it like it is, a book called "Chronic Sorrow" by Susan Roos. You just wrote about it quite well.

  4. Yes, you hit a very important point. I don't want to go somewhere where she will be "planted" somewhere and expected to stay in that spot for the duration of the "party". Honestly, I don't think people really have a conscious expectation that we do that. I just think that they don't consider all the walking and moving around they do when they visit someone's house (just going from the kitchen to the living room, for instance)and how it's just not possible for my daughter, hence for me.
    When she was smaller, I tried to go - usually at the urging of my mother so that I would stay included - and found myself following the group around like a lost puppy, trying desperately to fit us in on a small couch or between furniture or down narrow hallways, sweating all the while from the lifting, tranferring and carrying, holding back tears from trying so hard to attain something that just wasn't in the cards for us.
    I'm done with that. It took me a while to feel comfortable with it. It took my mom a while longer. But as you say, our small unit stays small. And most of the time, I quite like it.
    Thanks, as always, for your thoughtful addition.

  5. I think parents of people with disabilities are way too over protective. I was diagnosed with a genetic neurological condition when I was 16. Till then I thought I was pretty normal.

    Being able to walk became instantly more difficult. But it was when I was 22 that I began using a wheelchair. I'd left home when I was 18 to go to university. I returned to my dads when I was 20/21 while I got a wheelchair.

    I returned to uni before I was 23 and I've preferred to have my own life. 300+ miles away -almost the furthest I could be while still living in England. I've got what I wanted from life a nice job, a great wife. I have ambitious goals and aspirations; importantly I have control.

    It's been difficult at times but that's life. I know it's not going to suit everyone and I've had to work hard for what I have but I'm glad my parents let me.

    It's possible to over parent a child and if they have disabilities it's seen as normal. But maybe they want their own freedom.

    Friedrichs ataxia +cardiomyopathy.

  6. I completely agree with you Steven. Whether or not a child has a disability, over-protectiveness can have disastrous effects on a person's life. Sometimes it's so hard not to cross over that line!