This post is more or less a combination of some tangentially related subjects, all smooshed together into one.
Starting with topic 1: We are so fortunate that Ari’s last seizure in November didn’t take her life. With its horrible timing (at night) and duration (an hour and a half?), it is so obvious to me that we witnessed a miracle in her recovery yet again. I know that sounds so horrific, but I don’t like to soft pedal around what is really a very serious and terrifying reality, because it does no one any good to ignore the struggle and the threat and the burden that it is on me and our family. I also have the opportunity to feel such a deep gratitude on such a daily basis, which is a blessing in and of itself. A gratitude for her life and her continued presence in our world… something that too many moms may too often take for granted. I dare not take this for granted, lest I receive a bitch slap in the face reminder of the fragility of what is most important in my life. And while a miracle did occur, Ari’s most recent seizure has not left her unscathed. Ari seems to have not endured any regressions in cognition, but her gross motor skills have suffered setbacks. Ari’s muscles are much tighter, especially in her right arm and her legs. Her legs are frequently scissoring (crossing) to a much greater degree than they have in the past (see photo below). Without active correction, her legs literally reach over one another, whereas before they merely rubbed each other’s insoles or stepped on each other’s toes. If walking was ever an option, this has definitely caused her chances to dwindle. Ari also has much more significant problems bending her knees. This affects her not only when she is trying to take a step, but also in normal daily activities such as dressing and using the restroom. She used to be able to dismount off of the couch or her bed fairly well by going backwards, feet first and bending her knees until she was in a sitting position on the floor. Now, when she attempts the same feat, she can achieve everything up until the point where she is required to bend at the knees and since she can’t, she just falls off to one side. This has led to her hitting her head on the coffee table more than a couple times and also enduring other awkward bumps and bruises since she tenses up her muscles while falling. This is very frustrating for her, and it is very hard for me to watch as her mom.
We are considering what is called a Dorsal Selective Rhizotomy for her. This is a very invasive and major surgery, which will cut nerve root ends in her spinal cord. I am oversimplifying here, but to sum it up, the aim of the surgery is to reduce the spasticity in her lower extremities. The surgery is very risky, and it will require an extended recovery period as well as at least one year of daily (read daily) physical therapy, the majority of which will take place at CRS in downtown Phoenix. We are told that we can expect to basically put life as we know it on hold for the whole year. The toll of not getting the surgery would also be major. She would need a great deal of orthopedic surgeries and have a great many health problems down the road. Her ambulation potential would be null, our ability to be able to care for her as she is older would be lessened, and a great many other downfalls. In addition to everything else we have going on, I am told that we need to seriously consider getting the surgery before Ari turns eight years old, as the benefit is much decreased after this point. If you know of anyone who received this surgery, please give input. I am very torn.
This brings me to my next topic, which probably should have been a post all on its own. What does the word “special” mean to you? Because to me, it means “important in its own way, exceptional, extraordinary, individual, significant, unique, specific, and different”. To me, it refers to my child, Ariana, in each and every one of the aforementioned ways but also as in the phrase “has special needs”. Lately, I’ve been hearing the word “special” used in entirely different, inappropriate, incorrect, and frankly, despicable contexts. I’ve been hearing, and I’m sure that you’ve been hearing, people use “special” in place of another word that I abhor, “retarded”. All of a sudden, people have taken this wonderful word (“special”) that I use to describe my own child, and have polluted it and degraded it to the level of an insult for someone behaving foolishly, out of control, embarrassingly, or worse. If you hear someone misusing this word, please speak up. This word, when abused, is like the R-word, in that it derogates and promotes the exclusion of people with disabilities everywhere. It hurts people like Ari and those who love her.
When I look at Ari, I see the true meaning of special. I hope you will too.