Hard to believe we are already in July (even if it feels like October) and the year is officially half over. Time just seems to fly anymore. Spent the last two weeks fighting the illness Will had and it definitely took its toll in more ways than one. It was a reminder, to me, of the road leading to our diagnosis and boy, I did not miss that. Being torn between jobs (mom and actual job) and kids and friends and life to be with a sick child and fighting doctors is really nobody's idea of fun. I still don't know what caused all this mayhem but have concern that a new affect of the AS may be with us to stay. Waiting to hear from Will's gastro to confirm or decline that new diagnosis.
Life just is too much fun. Paula Evans, founder and chairperson of the Foundation for Angelman Syndrome Therapeutics, shared a video on Facebook this week that has resonated with me. The gist of the video was that it was people who all received a life changing diagnosis for their child. What piece of advice did they have from that day now that they were further out from it. It made me laugh, cry and get angry at God all over again. It also got me to thinking, shocking I know.
Friday night seemed to be promising. Will had gotten yet another diagnosis of an ear infection Thursday and received yet another, different antibiotic to try. He went to bed Thursday night and had to be woke up Friday morning so I could log some hours at my actual desk. (As an aside, I seriously can't say enough for my manager, team lead and company. Without their understanding and belief in me getting the job done no matter where I am, I don't know where I'd be right now.) I decided to take the kids to see Monsters University that night, we hadn't done something like that in awhile. After the virus had Will practicing his audition as understudy for the new fillming of the Exorcist I obviously missed the announcement of, his ability to vomit was becoming prominent. Now, recent life changes have shown me that he will gag when faced with a stressful, anxious situation he is not comfortable in. A few times he has almost pushed that gag too far but I am usually able to calm him down. A talk in the past with his gastro taught me that kids with reflux are prone to that reaction, that sensitive gag reflex.
Seems now he knows if he keeps pushing the gag he can cause an actual physical reaction and it tends to halt whatever stressful thing or change is happening around him. This is something I've heard other angels go through but never thought we would.
So we made it through the movie with one small nervous bout of regurgitation. I cleaned that up inconspicuously and we all loved the movie. Went home, got the kids to bed and spoiled myself with a few digital magazines on my Kindle. Before I knew it, it was 1:30 and I knew I needed to crash. Laying there on the border between alert and asleep, I felt my little guy curl his little body into mine and put my arm around him and succumbed to sleep. It would not be long lived. Anyone with children has probably been in the situation I was about to awake to, in some capacity, at least once.
I was awoken to a wet, warm sensation in my hair, down my shirt, down my side. Would appear, in his semi-sleep state, Will's system decided it would be a great time to revisit some food. I seriously can't think of a worse way to be woke up. After a slight freak out on my part, I got up and cleaned us both up, peering at the clock where I learned it was a glaring 1:55 am. Moved Will to the living room where he stood by the love seat as I tried to clean myself and him off more. He then proceeded to hit both love seat cushions. At some point in this journey a person hits the wall of OMG. Is this *really* happening? Am I dreaming? Can I clone myself anytime soon?
Needless to say I truly lost all composure at this point. What followed was not my proudest moment but, this is the good, bad and ugly of our lives. I sat on the ground, next to my unwitting, beautiful little boy whose body just is out our realm of comprehension, and we cried. Both of us. He for the awful way I'm sure he felt and me for the overwhelming life I found myself in. The life I am powerless to alter, the life I live with gusto but would not have knowingly chosen, the life that at the moment seemed entirely too overwhelming to continue on.
I did laundry and cuddled my boy, the wheels of my head not stopping, until 6:15 am. It was this time that the love seat was back together, the bed was back together, the boy gave into sleep and I was about to fall over. Wrote Gab a note to not wake us up and crawled in bed.
Back to the referenced video, I had seen it prior to this not so great moment and it played in my dream. Parents holding signs with quotes, bits of advice, sage statements, harsh truths of their child's diagnosis. I did not awake in a better state. I was an emotional wreck who had a bit of a toddler day myself. Don't wanna, can't make me.
We are now just over a year and a half post diagnosis. October, 2011. Goodness, we are close to two years post-diagnosis and, honestly, I feel like I am stuck in quicksand most days. I look at his development and I know he is progressing and excelling. Gabbie is progressing and excelling. I'm aging and becoming jaded. This is the hand I was dealt. On this day, I truly hated many, many things. My heart felt shattered and I cried, lots. I questioned God and my own choices. I thought about the life I truly intended for myself and Gab, and the life I got... Now, 9 times out of 10 I know this is the life I was meant to live. I think I am entitled to a "woe is me" day once every 6 months or so.
I cried as I held my napping baby. I didn't ask for this or want this or even know how to deal with this. I didn't want to do it anymore and I'm pretty sure Will would gladly give it all up. A totally irrational thought process, I know, a thought process which only hurt my heart more and really had no easy resolution. But I needed to get it out. I cried for what we won't experience, I cried for the difficulties we have to endure, I cried for my own ignorance and denial of future affects of AS hitting us. I don't think I realized that I truly thought the Will of my everyday life was the one he would always be. I didn't think more stuff would surface, more things and issues to contend with, more doctors to struggle with, insurance to argue with, balancing every life thing that needed me. I gave up that day.
One of the signs is this video resonated with me, and does to this day - a mom holding a sign that read "God DOES sometimes give you more than you can handle". Wow. How many times had I heard that over the months, words I do appreciate, a belief in me others have that I don't have of myself. I think God overestimated me on this journey. I will break down walls to prove Him right, but some days I just want to throw my hands to the sky and say REALLY? Why me? I'm not that strong, I can't stay the course on this. And he'd give me a proverbial whack in the head, knock some sense into me (normally in the form of some skill Will has unknowingly mastered) and revved my engine back on this path.
And with that I know what my totally honest sign would say - it is ok to fall down and cry and question it all as the primary caregiver of this little child. It is ok to pout and stomp your feet and want to give in. The only way through it is THROUGH IT. Do not avoid it, go around it, above or below it. Walk right though it with your head held high, and your eyes cleansed of tears, knowing tomorrow is another day and you *do* have this. Nobody could do it better than you. At the end of the day, he *is* my angel, and I am his wings.