On several occasions throughout the past year, John and I weighed the merits and risks of putting Riley through soft-tissue lengthening to alleviate the strain his tight tendons were putting on the left hip joint. We knew that eventually Riley would require the surgery.
Category Archives: What to Expect
Riley leads a sedentary life. Sedentary is not exactly how I think of Riley. He has a lot of energy and being Riley takes a lot of energy. The reality, however, is that his activities are confined primarily to a seated position. My yoga instructor, Matthew, recently observed that “our body adjusts to how we live life.” In Riley’s case the body falls apart to how he doesn’t live life: no running, no playing, no exercise…
Some years ago Riley had a medical procedure done that I found barbaric. Basically it has something to do with his shunt… I called it the lightening rod procedure. Put a metal monitor (bolt) in his skull/brain (exposed) and hold him still for 48 hours, intended to be 24, so they can read what is going on. Given Riley’s expressive nature. Holding still was a task. But I did it (actually he did it… I was just along for the ride) and I never imagined anything worse…. Until recently…
Recently we visited our first potential residential school for my 15-year-old son Alex (PDD-NOS). The car service whisked us for two hours to a sprinkling of one-story buildings across what no doubt was once a meadow. These schools seem to be mushrooming and expanding; many of the buildings smelled of new lumber and of crisp appliances just released from cartons.
The staff made us welcome, fetched us bottles of water and said Alex would spend most of our visit in a classroom. “No!” said Alex, pulling away. “Car!”
Who’s aware? I hope all the people who don’t lead the life that I do. Self-pity? There’s no such thing to the dad I am.
I’m aware to my core. “I was going to send you an Autism Awareness Day card,” a friend wrote a few years ago,” but I couldn’t find one in the Hallmark aisle.” Why not? God, she was smart.
The word means different things to different people. For some, they break up with a lover they thought was “the one.” A friend of ours considers it not being married by 45. Not owning the latest designer brands for that year. The death of a pet fish (to a 7yr old) (while you feed him “mystery meat” (aka fish sticks”) that night his fish died). To some, the events that can bring about devastation mean something tragic. To those who didn’t like their lover, need material things, want to be married or never cared about how a fish lived…. These can mean different things. To those with disable children/loved ones it means something else. This week, my husband faced his own (another) devastation….
The MINI-VAN. Through the amazing efforts of people we did not know (or didn’t know well), we received a 1997 Ford Windstar WITH a FULLY AUTOMATIC WHEELCHAIR lift. Basically we are going from lifting Riley out of the chair into his car seat, which he would cry as soon as he was in (too small, too vertical, too much… for us all) to a van that our youngest can operate the lift (really cool… like a “Lunar Landing every time” he puts the lift down) and Riley just wheels into the van and is in (comfortable)!!!
The first time he was in it, I could see his expression… going outside he thinks (“warm FL air hits my face”), am rolling (“guess I am going for a Rollerblade with Dad?”), wait something is going on (“I am in my wheelchair and moving and Dad is not around?! How did we get to Naples Equestrian Challenge and I never left my wheelchair. Holy Crap!!!! I can fly!!!). Total confusion by Riley. How can this be so easy? (for him and us).
Christine, mom to Kaetlyn, wrote from a Naples hospital room this afternoon:
…it really makes me feel better to share our journey with others. We need to continue let each other know that we are not alone in this special life!… Today we are just letting her rest and regain her strength and such after this ordeal. The Dr cannot yet tell us when she can go home all we know for sure is that she will definitely be here through the night as it is standard protocol to remain hospitalized at least 24 hrs post extubation.