Don't Make It Too Easy....

 

Given the recent shooting in Highland Park, Illinois, in which an 8 year old boy was critically injured and paralyzed from the waist down,

Six weeks after getting shot at a Fourth of July parade, an 8-year-old left paralyzed feels 'hopeless' and angry as new reality sets in

I thought it prudent to share just a tidbit of what my own family went through after Anne Marie, my daughter, was shot and also paralyzed from the waist down as a result of the Columbine massacre. I won't dwell on what she, and the members of her family went through as she went through a very long and very painful rehab at Swedish Medical Center and Craig Hospital except to say she was admitted to Swedish Medical Center on April 20, 1999, the day of the massacre, and was discharged into my care on August 15, 1999. You, the reader, can do the math on that length of time in order to better comprehend how difficult that rehab was and what we ALL went through to help her survive. During that time, my first wife, Carla, and I virtually lived with her in each of these two hospitals. It wasn't easy, but we did it....for Anne Marie. To this day, Anne Marie still does not know the full extent of what was done for her and our family to accommodate her and her disability. But that's fodder for another blog post another time.

All that being said, when it came to everything that followed the massacre, one thing sticks in my mind: The experts virtually ALL said, "Don't make it too easy." They were, of course, referring to Anne Marie and her effort to live what can only be described as an altered lifestyle given her paralysis, her healing from the gunshot wounds notwithstanding.

The first thing that came to my mind upon being told not to make it too easy for Anne Marie was how could anyone in their right mind even suggest to me not to make things too easy for her? I couldn't believe it. After all she'd been through, now I've got experts telling me not to make things too easy for her? She's in a wheelchair, for Christ's sake! She's been shot, dammit! It's a miracle she's even here, for crying out loud! Don't make it too easy for her!? What are you people thinking!? 

That was my initial reaction to being given this advice. It wasn't easy to have someone suggest to you not to make it too easy for your own child, especially given the circumstances of her being shot and critically injured at Columbine High School April 20, 1999.

But I had to listen; I had to take their advice seriously - not because of who they were as experts in their fields. Rather, I had to listen because they, themselves, often times had experienced traumas of their own; because they, themselves, were in wheelchairs because of paralysis, because of traumatic brain injury, because of Multiple Sclerosis, because of Muscular Dystrophy.

Anne Marie's injuries were serious, critical in fact. There can be no doubt about that. As her Father, I took that so much to heart, sometimes it was almost unbearable. It would, in fact, sometimes even cloud my thinking, hinder me from being as rational as I could be, or should be, about these things. But looking to these experts for help who had a ton more experience than I did with these types of medical conditions, who actually were experiencing their own life challenges as a direct result, gave me more than enough reason to heed their advice as much as possible, to finally be able to accept that Anne Marie can do this! Yes, she can, and so can we. So can I.

One such individual, a certified subject matter expert, came to our new house that would be renovated and modified to accommodate Anne Marie's disability. He was an expert in his field, that's for sure. His wheelchair was motorized because his paralysis also affected his upper body. At least Anne Marie's was below the waist, and she still had full use of her upper torso and arms. 

Anne Marie was still an in-patient at Craig Hospital when this gentleman, along with some therapists from Craig Hospital, and I met at the new house. I noted he was driving a specially equipped van with a lift. It was a mid-size van, no driver seat (his wheelchair became his seat when in the correct position), and the lift came out the sliding side door. I took note.

With some extra maneuvering, we were able to help him inside the house. The house didn't yet have a ramp for access through the front door, so we had to get him up two steps into the house. It wasn’t easy.

I don't know if my trepidation showed, or not (we hadn't yet gone through the extensive training at Craig Hospital that we would need to go through on what would be required of us, Anne Marie's family members, to accommodate her disability). He didn't indicate he was aware of my trepidation one way or the other.

Once inside, his recommendations came at us fast and furious:

• Open up the two guest bedrooms on the main level into one bigger bedroom (that would mean Nathan's bedroom had to go into the lower walk-out level - one would need to be added because the only area that was already finished was a rec room - the rest of the lower level was storage and was huge, so adding a good size bedroom for him shouldn't be too much of a problem, right?
• Open up the wall from the main bath into Anne Marie's bedroom (that would mean Nathan would have to use the bathroom in the lower level - luckily it had a shower, but was very tiny);
• Open the cabinet underneath the sink in order to accommodate her legs while in the wheelchair (note to self - must ensure the "hot" water tap line wouldn't pose a risk to her when her legs were under the sink - remember, she had no feeling in her legs);
• Cover the opening with a cloth drape;
• The shower must have a curtain, no glass doors;
• A flexible hand-held shower head would be best;
• Don't get rid of the tub (make her work to transfer from her chair into the tub);
• A shower seat would be good, but not absolutely necessary in this case because there is a ledge at the foot of the tub that she can sit on;
• Do not widen doorways - The Americans with Disabilities Act (ADA) specified doorways to fit the normal width of a wheelchair's base of 28". Most doorways are already 28" wide or wider. Leave the doorways as they are (make her work to get through them);
• Don't even begin to worry about scratches to the woodwork - rather, expect them;
• Carpeting is okay, hardwood floors are better (sometimes carpeting can be a problem for turning of a wheelchair if the pile is too thick. But it isn't something that should be a special consideration);
• Are your washer and dryer top loading? If so, get rid of them and get front loading;
• Furniture placement should consider spaces in between pieces wide enough to allow her wheelchair to pass between unimpeded;
• Leave the kitchen as is (make her work to use it).
• Don't lower any of the appliances or counter tops. She can turn sideways in her chair to be able to access the sink, faucet, and stove-top. A stove with controls on the front is a must; can't have her reaching across a stove-top to access anything just in case a burner might be on. A microwave oven should be face level in order for her to reach into it. Over the counter cupboards should contain only those things she won't need to access much, if at all. Everything else should be placed in the lower cabinets. The refrigerator/freezer should be a side-by-side with most of the things she needs placed on the lower and middle shelves;
• A stair glide into the lower level would be good, even if it takes up most of the stairwell (which it did);
• Carpeting in the lower level should have a very short pile;
• A ramp meeting ADA specifications would be a good thing if she plans to use the front door. If she plans to go into the house from the garage (if she starts to drive), a lift from garage floor level to main floor level will be necessary.

These are just a few of his recommendations. There were many others. Most of them were incorporated as part of the renovation. Some of them were incorporated later at my own personal expense. 

Driving instructors recommended a vehicle with hand controls, of course. They had us watch several individuals with similar paralysis to Anne Marie's where they would transfer into a car, reach out and remove one wheel from their chair, toss it over their back into the back seat, turn the chair and remove the second wheel, toss it over their back into the back seat, and recline as far back as they could to pass the seat of the chair over their chest into the passenger side seat. The instructors also indicated vehicles could be specially equipped to elevate the chair into a container on top of the car, or a van with lift would also work well. Their recommendation was, once again, to not make it too easy for her. Their suggestion was to get a smallish vehicle fairly low to the ground and have Anne Marie take it apart as in the first example. That would also require that the chair, itself, be made from materials light enough for her to be able to handle.

After several fits and starts, the vehicle she ended up with a specially equipped Ford F-250. More on how this became her vehicle of choice another time.

There are so many things to consider, and the things I'm sharing in this blog post are just a snapshot of the big picture. Throughout the entire process, I still had a lot of trouble with the possibility anything at all might be too hard for her. I wanted to make her life as comfortable as possible.

Something extremely important needs to be mentioned here, and I'll talk about it in later posts, as well:

While Carla and I purchased this house with equity from the sale of our older home when we realized that older home would not, in any way, shape, or form, accommodate Anne Marie's disability, virtually all the interior modifications made to the new house to accommodate Anne Marie were donated by organizations and individuals who wanted nothing in return, who actually, in some instances, even refused any offers of compensation for their charity. I can't even begin to express in words the gratitude I felt for their goodwill and caring. But it was, still is, and always will be deep and heartfelt. It is a debt I will never be able to fully repay.

There was not only gratitude, but relief, as well. For a long time, I worried about how much of an impact the cost of everything would have on the Trust I'd set up for Anne Marie. We didn't have GoFundMe back then, so these donations, along with monetary donations into that trust I'd set up for Anne Marie's long-term supplemental needs were crucial to us being able  to survive. Now I could rest a little easier knowing the impact would be much lower than expected. I also knew that most people in similar situations to hers didn't have the kinds of resources, both financial and community, coming to their aid that Anne Marie and her family did. 

I can only hope that Cooper and his family will have the sort of resources available to them that we had in our situation.

My two cents.....

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