Slowly I backed my van toward the single cement step leading up to my front door. This appeared to be the easiest way for me to load Josiah and Cody's motorized wheelchairs into the rear end of my navy blue Dodge Caravan. I knew I would still have to use our clunky awkward but dependable, steal portable suitcase ramp to drive the chairs across on entry. However, I felt somewhat relaxed with the low incline- from going step to van, and bridging with the ramp. A welcome relief for my fear, that should I slip the chairs would not roll back and trap me, as it had happened in the past. Glancing into the van I paused momentarily scanning the space available for me to haul the cumbersome equipment we now needed. I peered back to the front door where Josiah's chair waited for me. I again, sized the chair up form side to side. Yes, I knew what I had to do, and felt determined. After all I had been tackling loading equipment by myself for many years. However, as my boys have grown, so has their needs and size of wheelchairs. Unhappy with my limited choices, today I had decided on a different approach.
I paused thinking about the weeks earlier disappointments, my purchasing a gate trailer and hitch that I wanted to use to haul one wheelchair outside the van, allowing me more space inside to seat passengers while only having to load one chair in the vehicle. I had hoped my new scooter/wheelchair carrier would aide in my transporting the boys and their motorized equipment. I envisioned this would add new convenience into our limited world, giving me some major ease with the transportation choices for my sons. Sadly my latest attempt to find an affordable new spacious approach failed. Miserably I added the defeat to an already growing list for the week. Now not only did I have to recover from a several thousand dollar wage loss but I also owned very expensive beach chairs that were not owning up to its claim of ease. This new large metal rack now broke what had already weakened my spirit. So as it were I felt obstacles and stumbling blocks surround me. Leaving me amidst all my errors and set backs, left only to find new ways to set forth on a path to rise above my present demise.
Propping open my front door, I momentarily recalled how on previous trips, I had always resorted to lowering one of the stow and go middle passenger seats into its storage compartment in the vans floor. Giving me the very much needed space to load our 2 electric chairs, a ramp along with what ever else we would need for our adventure. Unfortunately though it never left us much room to allow us to have an adult size passenger ride along. The only area left to spare was a small split section of the very rear stow and go seat, with scarcely enough leg and foot space for a child, or small accommodating adult, such as my self. Desperately to day, the day of my niece Vanessa's wedding reception, I wanted to keep the left mid passenger seat in tact.
I had spent time researching and planning for this day, to find a way that allowed me the comfort to be seated with out having to crawl to the rear of my van, in my dress and heels. I wanted to have room and just this once be honored with the pleasure of an escort accompany us for our special night. My male companion for the evening was Craig. A very close friend whom I had been seeing and recently begun joining my boys and I on occasion to events. Standing at six foot three with very broad shoulders, it was very apparent, there would be no possible way to seat him in the rear, surrounded by equipment. With Cody and Josiah occupying their tourney seats there would be no other seat available to accommodate his size. He would have to sit in the drivers seat. I knew I had to try and find another way to load my cargo, or resort to crawling in the back, with gown and heels.
I thought about the tears I had cried earlier in the week from letting my hope build, and be left with yet another let down. Tears that grew out of fear from me failing at my attempt to become more independent with my sons and their ever increasing needs. Most importantly, tears because in so many ways this only increased the isolation and imprisonment I see ahead for them -for me -for us. Sadly, I just did not even begin to know where to turn too, to share my sorrow with out feeling I was being seen as a drama queen, or be showered with useless advice. I felt bad, and just wanted to have some where or someone to vent. With the reality that staff, family and friends are not always available, I felt an even more urgency to address the situation on my own, to keep from hearing again, the before mention label-Drama queen. Somehow I found the words still stung at me, while I scanned the door frame size one last time to my house. An uneasiness stirred in me, as I thought about what I desired most. Was it physical support, or just some real heartfelt emotional support, that would let me keep my dignity and not be judged. I had read a posting on Face book a few days ago where a friend had posted she was having a bad day. She was so thankful and delighted when a close friend appeared at her door unannounced with a bottle of wine. I imagined as I read the posting, how special and loved she must have felt. I was delighted for her- but found myself wishing I had that in my life right now. Just once, I wanted affection without having to ask for it.
It wasn't the money and time spent researching that left me so upset, it wasn't even the fact that I now owned items that were not living up to my expectations or needs they claimed meet and failed. But, solely the acceptance that once again DMD had appeared to have control over another aspect of my world -the world that my two sons and I live in. So, here I was recovering from a week of feeling like I failed in many choices lately, and at a loss, to find away to provide more accessibility for my sons. How many set backs can one week bring? I wondered, as I began to set up the rigid ramp. With no tears left, and a bit angered at myself for falling victim to self pity, I now felt determined to tackle my current dilemma. So far, no answer to our situation had been rendered that would improve my being faced with unloading these chairs at a very steep incline by myself, at some point, and most likely often. I shifted the heavy metal ramp and thought about the set back the current situation produced. Reality stung at me, single parenting slapping me in the face. Faced with- short staff and short funds I had to be everything and find ways to do it all. This was our life like it or not, I carried the load to our survival, our thriving.
Letting my thoughts carry me away, I wondered what was it even like to be a parent, and go somewhere with out having to put so much thought, planning and preparation into it. Unfortunately needs and emergencies arise often at the most inopportune times. Could I really have my sons transportation exist at the mercy of others? Hope that help would be available when I needed. Would that be acceptable for the bazillion of other parents I knew? Would they really accept living that way, of course not. I tried to imagine if I personally knew anyone, who really understood the stress and fear, of being in that situation. A situation, I knew to well. A problem I wanted to avoid ever happening again.
I began to disassemble as many removable parts as possible on both chairs. The backs with headrest and then foot rest. Carefully, with Josiah's chair on a very low speed I slowly backed it in the van. After several attempts I had it backed as close as possible to the passenger seat on the left side of the van. Cody's chair was next. All I could do was try, at the very worst I would be sandwiched in between the chairs for the ride, if my idea failed. With extreme caution and persistence, some clanking of wheels colliding from one chair to the next, it appeared I had made a successful fit, barely but it worked. I was successful. My first thought was take that DMD.
Half amazed that by myself, I had actually attempted something that no else that had offered me help had thought of. I surveyed my solution. Empowered I stepped inside the van to take a different look, just to ensure I had not forgot something. Yes, I had managed to fit it all. Even though it required removing the chairs of some hardware, it all fit. I finished placing the ramp and the other parts I had stripped from the chairs in my van. I smiled as I heard the rear gate door close with out so much as a ting. I was done and now had time to spend getting myself ready.
The wedding reception was wonderful. My sons enjoyed themselves and their freedom to roam. I found an inner peace with in myself that night. I felt joy that I was able to be more when I had too, once again.
I did manage to impress Craig and my brother-in law Bill some, with my talent to fit the wheelchairs side by side on my own, something, neither had thought of. However, I know in reality it only helped both feel assured, I had moved on and as usual made things workout. I, on the other hand had assured myself how very important every step I take towards my sons care must be. Most importantly, there is no end to learning on this journey and the level of commitment I need.
I may not ever know the comfort that comes with having someone to share your innermost fears and pain with. I do not ever expect anyone outside the DMD community to begin to understand the magnitude of emotions we struggle with daily, or the the strength it takes as parents of children who are born with an expiration date. Those are things I have no more control over than the progressing muscle loss my sons continue to endure. I do know, I at times need to be so much more, and hope for so much more. From time to time I will fail, and the ones that are around me offering support may fail. I can move past all that and grow. With dignity and pride, I will pull myself up to continue to discover the things I am capable of, through my perseverance and unconditional love for my sons. With out hesitation, I can tell you I am a DMD mother first and that is my whole world, where ever I go and what ever I am doing.