At the end of last month, Sam went on his very first school outing. After almost ten months, I'm still sort of getting used to the kid being in school so his first school outing was pretty huge! Outings remain an unpredictable phenomenon in Smurfville. The ones you expect to result in chaos don't and those you feel are "safe" have you searching for a hammer and nails with which to board yourself and the flappy dude up inside the house for months thereafter. With my woodwork skills somewhat lacking, I decided to prepare for a, hopefully, hammer-free ending and arrived at Butterfly World a little earlier in order to figure out how Sam-friendly the place was, as well as to mark out possible exit routes. Well, the kid blew me away! We could have been going on a tour of the local butchery for all Sam cared. All that mattered was that his friends were there, along with his beloved teachers and Sam spent the morning in flappy blissfulness! He was even keen to touch (most) of the creatures during the reptile show...a little more keen than mom I dare say!
My first-ever, school-made Valentine's Day card from my warrior! Well, my first-ever Valentine's Day card from him at all for that matter. But this kid...at school...holding a paintbrush! It might seem a little blasé for some, but you need to have felt the hopelessness of having your child's potential repeatedly overlooked...the guilt of not being able to provide him with the guidance and expertise he desperately needs to thrive...the fear of him never knowing the joy and excitement of friendship, to be able to fully appreciate the profound hope Edu-Play and seemingly insignificant treasures, like a precious little painted heart, ignite within you.
This one's a bit of a toughie...meaning, I am not yet in a good space with it all. On 3rd February Sam had an MRI and EEG after having experienced a change in both nature and duration of the, till then, very erratic seizures we were used to. We had tried to do an EEG before but when the lil flappy dude started resembling the Tasmanian Devil in his attempt to escape the sensory-overload of the electrodes, we surrendered after just 17 minutes with absolutely nothing worthwhile having been recorded. I had little hope for this EEG being any more successful. Surprisingly, Sam tolerated a full 20 minutes. No, not much longer than the previous EEG, except that this time there were enough "spikes" recorded during those 20 minutes to warrant an additional diagnosis of Epilepsy to our existing Rubinstein-Taybi Syndrome, Cerebral Palsy and Autism diagnoses. Sam struggled a little with the two hour anaesthetic needed for the MRI, which was to scan both his brain (for possible causes of the sudden change in seizure activity) and his spinal cord (to rule out re-tethering) but thankfully after about an hour-and-a-half his oxygen levels and blood pressure returned to normal.
The MRI confirmed the previous MRI's reports of Periventricular cysts and the RTS-related partial absence of the Corpus Collosum. However, this most recent report specified something new...static encephalopathy. It is effectively another form of Cerebral Palsy to add to the Periventricular Leukomalacia, but it is too an additional form of brain damage which was not there three years ago...and that's the part which has me unsettled. Sam's paediatrician reassured me that it is a non-regressive disease but does mean that developmental milestones not yet acquired, will most likely remain so...unacquired. For Sam, those developmental milestones include things like walking, effectively manipulating a spoon, etc.
While thankful that my Sam does not deal with heartbreaking medical issues like many of our friends do, there is still a sadness that comes with placing yet another obstacle (or two for that matter) on his path. There is also an underlying feeling of guilt which I cannot shake, despite knowing that it is something many mothers of differently-abled children deal with. Both the PVL and the encephalopathy are caused by oxygen-deprivation in utero and/or during birth...it is incredibly difficult not to dwell on decisions which were made by both my gynae and I during the last few weeks of my pregnancy...decisions which were undoubtedly instrumental in the difficulties Sam now faces. It does not end there...there is an irrational but incessant need to go back to where I was eight years ago, devoting every waking hour to Sam and ensuring I was doing everything within my power towards helping him progress...and on top of that a final layer of guilt that I am not doing that now.
You get my eluded "good space" now?
I can tell you one thing, with his RTS diagnosis at birth in 2009, Sensory Processing Disorder added in 2011, CP and Autism added in 2014 and Epilepsy and Encephalopathy added now in 2017...there is not a damn you're getting the flappy dude near a radiology department in 2020!! Lol!
But, in true warrior style, we keep on keeping on and will find our way back to that good space. Till then...
Sam celebrating his friend, Ethan's,
birthday at school.
Happy to do tasks he refused
to do at home. Go figure!
Sam and Leeanne, his dedicated and
Again...a puzzle I donated to the school
cos Sam refused to do it at home. Cheeky