By Andrea Gish
Michael is just over 3 years old and it’s been a little over 2 years since our lives changed forever. Our warrior had his first seizure and diagnosis of Epilepsy at around 3 months old. I figure this is as good a time as any to share our journey!
Michaels first sign that something was off was his vision and inability to track objects or people. As a first time mom I had no idea that anything was wrong; and his pediatrician said every child develops different. But dadda (having 4 babies already) knew something wasn’t right.
Fast forward a couple months... his first focal seizure. Again not knowing what it was I thought he was choking or just holding his breath. So we brushed it off a few times. It wasn’t until he turned pretty purple and had them multiple times in one day I called 911 and took him to emergency. I then showed the staff all the videos and they got in contact with Santa Clara pediatric neurology department and had him transferred. With no known cause as to why he was having these episodes they ran every test in the book.
Seeing your 12 week old new teeny baby with tubes, oxygen all of the above is a major life changing moment. Thinking back I didn't realize that it was in that moment, my typical motherhood experience was gone.
Then came the results of all the tests. "Your son has GLOBAL BRAIN DAMAGE. We don’t know why, or how...the only thing we know is a possible when. It could have been late in pregnancy or shortly after birth because his brain is fully developed." We we're in shock! In the frame of mind I was in, one doctor stood out. Mind you usually docs come in check vitals, asks if we have questions and leaves as quick as they come in. But this doctor came in at 3am sat down crossed his legs and asked "how are you doing mom?" For some reason his easy demeanor, calming personality and being that is was 2 days of trauma, I just lost it. In all the chaos of the past 48 hours, I just focused on Michael and the trauma he was going through. That doctor gave me the best piece of advice. "You got dealt a very crappy hand and diagnosis today and I know it's tough but in just 1 year you will become more knowledgeable in epilepsy then most people will in a lifetime....you don't need to learn it all in one night, take time for yourself as well because you're grieving and going through a loss as well" I did just that....I became in the last three years I became a Neurologist, physical therapist, pharmacist, and nutritionist.
So now back to the why...why did this happen? Was it something I did or didn't do? My pregnancy was normal, labor and delivery was normal so we questioned everything! Vaccines, jaundice everything! But came up empty. So we were forced to move on with out a why.
Without knowing the cause I asked what’s next...the doctors said medications and maintenance. For 3 months we were just coming to terms with being “epilepsy parents/family” then another shoe dropped when he was 6 months old. A twitchy/spasm movement that his pediatrician said was still “Moro reflex/newborn startle reflex” After sending videos to his neurologist he confirmed it’s suspicious and had us come down for another EEG. I didn’t even get home from the drive back from Santa Clara and his neuro called back with results saying it’s #infantilespasms. My response “oh it’s “infantile” so they’ll go away that’s not bad!”
Boy was I wrong! Things went from bad to worse! I refer to infantile spasms and the meds he was on to cure them as "dark days" where all we could do to help him was feed him, walk around in the stroller him or swing him.
Right around the same time frame he also got diagnosed with cerebral palsy. Michael has mixed quadriplegic cerebral palsy. Where he has high tone and low tone in all 4 quads of his body. Doctors said he will more than likely never walk or talk. From 6 months-1 year old was basically our family just trying to keep our head above water and learn as much as possible about Michael's diagnoses and the WHY this happened to him.
We spoke with a geneticist and she did a thorough work up of both me and Ryan's family history and all of Michael's physical traits and current diagnoses. Took all of our blood tests and a few months later we got a WHY!!! He has a very rare gene abnormality COL4A-1, which causes strokes and bleeds. We don't know when it happened exactly just that it happened. And ever since then he's had countless blood draws, therapy sessions, doctor visits all the things most mommas cringe at the thought of. And yet it is our normal.
I think back at that naive version of myself and I mourn her. I mourn the mom I thought I was going to be...instead of cheering my son on at soccer games...I now cheer him on just trying to sit or crawl or communicate!
I think back to that "Hopeful" person thinking this one medication will be the cure all and I'll get my baby back on track. To now is this medication going to help him enough to be on it or should we go back to the drawing board? Finding the balance of helping with meds and side effects or without meds and seizures.
I think back to that trusting person who thinks oh they'll help with this program/therapy/respite/school etc why wouldn't they? ($$) . To now I send countless emails to supervisors and lawyers to make sure he's getting what I think he NEEDS.
I think back to that "optimistic" person who thinks every doctor, nurse, and staff knows what's best so just blindly do what they say...to now the doctors ask me to consider things and they ask me what I think would be best for Michael and they ask me for Michael's seizure protocols!
The fact is I have to advocate/fight for every single thing my son needs and deserves because he doesn't have a voice...and I am soooo thankful that we have social media to turn to for answers, advice and an outlet! With out Facebook and Instagram pages I would have felt so isolated.
Yes I'm jaded, yes I have major ptsd, and yes I question everything and anything. I say no more often than I say yes to things because I put my sons well being before my own. And no one knows him better than his momma.
Scoobs is still having daily seizures and we have come to the realization that epilepsy will just be a part of what makes him him. We will have great months and trying days! He may never walk or talk but he communicates in other ways and that is the most exciting thing to watch and see him so proud of himself. Michael is resilient and works hard to overcome everything and anything that is thrown at him. And this is just one chapter of Michael's life!