We are so wicked lucky. We live in a developed democratic nation with access to the world’s finest healthcare (for which we pay, but it’s right here). We have indoor plumbing (in our house alone we have five full bathrooms, which is insane and inane), water we can drink straight from the tap; we have made numerous home modifications to enable the Little Angel to continue to live where he belongs, with us, together, in our family home.
the Little Angel on his new Special Needs changing table in his changing room
And yet, on one of these home mods he just had a violent GTC (generalized tonic clonic — formerly known as grand mal) seizure during which his airway was mechanically closed (we call these cyanotic seizures as his lips / chin turn blue from lack of oxygen). Because I know him and his seizures plus I was literally right there I firmly but gently lifted his chin to open his airway. My face was right in his as I then slipped my fingers into his hypertonic fists (too tightly clenched as the seizure caused his muscles to contract) and I heard and felt his first intake of air. His body was rigid and I held him, explaining that he was having a seizure, and reminded him what a remarkable, brave, strong little boy he is.
Many days he is now unable to stand without significant adult physical support (he leans against us), and cannot walk at all. But he’s in there! I see him in his eyes and his adorable little smile with his huge teeth.
At his school they are rolling with the punches: when he is having a day where he cannot stand / walk / sit up, they let him lie on the floor propped by cozy body pillows; they also have a special flexible video monitor which allows the Little Angel to do his school work whilst lying on the floor. His current favorite video to watch is Feist on Sesame Street. The first time, actually every time I watch this video with him I get weepy, so grateful to this singer (of whom I know nothing) that she altered her song and agreed to be so good-natured about singing it on Sesame Street. My precious 8 3/4 year-old son loves watching and listening to her, and maybe he’s comprehending something from her “1 2 3 4.” He’s definitely comprehending happiness.
We’re so fortunate. Little Angel is loved and taken care of, even if the medical care he’s presently receiving is no longer meeting his needs and Needs, at least I believe they are trying to figure that Medical Enigma out … or at least a palliative or some sort.
I’m so conflicted. On the one hand I am so terribly superficial, excited by my new sandals and nail polish. I feel such joy with my life, with what I do, with what I have, with who I am. On the other hand, I feel such despair over my Little Angel. I find I feel both these at the same time. Yin and yang and all that jazz.