Still alive, struggling with this viral sinus infection/allergy icky that the tease of Spring brought to Cleveland.
I always hit a patch of writer's block when I start a blog, at least the few times I have over the years. When starting out a blog, you feel sometimes like you are talking to yourself and start to wonder how much to share. Not everything associated with our lives is negative, but it can start to seem that way when you are trying to spread information, knowledge and awareness. So I decided to take it back to basics tonight, give you an intro to each member of my little family.
As an aside, I also am blogging at http://www.lifebehindthesmiles.com - that blog is much less candid, much more all me with much less censoring lol. Consider that a warning that it will be the full Melissa :-)
Let's start with my girl, Gabbie. My vivacious, full of life, true to her name talker. She is my straight A student, the little girl I always dreamed of having - even if her preteen years have added the greys. She is extremely compassionate and maternal, inquisitive at times, complacent and chill at others. She is stronger than she can even understand at this point in her life, she has faced alot of adversity in her short life and come out better for it. She came screaming into this world on March 21, 2001 weighing 5lbs 13oz and her pace never slowed. A head full of beautiful thick curly hair and huge green eyes (too big to be in proportion to her teeny head), she was so alert. Like her brother, she never slept, but I think she was fearful she would miss something. She walked at 9 months, starting talking (simple 1 syllable words) at 8 months and, trust me, hasn't slowed down since. She was a peanut so when people would see her and hear her, they all did double takes. I am blessed to have her as my daughter and I truly can't wait to see what the next twelve years bring!
I was born August 23, 1974 to a family of four in Parma, OH. I was the youngest of three children, with my brother 7 years old and my sister 9. Surprise!!! I remember the age gap definitely had me observing what worked and what didn't as far as what my siblings tried to get away with. As a result, I was definitely the one who wanted to make sure the waters stayed calm and peace was maintained - the fixer you could say. I stayed home until I was 25 (seems to be a Parma thing!) and then moved West to Westlake and my first apartment. When I made the move I had also decided to pursue my passion for all things medical and focused in on abnormal psychiatry. I was, what I perceived to be, too old for a surgical position so this was the next best thing. Shortly after that move, my daughter came along and life changed completely. I wouldn't trade her or her brother for the world, and feel I gained my LPN by proxy in getting Will diagnosed and treated. I still daydream about being a trauma surgeon - one of the children close to me has to go that route lol.
My Will is somewhat of a local celebrity at this point! It amazes me regularly how many people know him, know his story, know his plight. The detailed story of how we got to today is being played out in his Facebook support page (http://www.facebook.com/WishesforWillAS), but at a high level, here is who he is. He also came screaming into this world a tiny force to be reckoned with. He weighed 5lb 14oz (seems my body had an auto eject around that weight) and he also never slowed down. Will's case of AS makes him look like this at 3 years old: developmentally Will is at, and has been at, about 18 months old. His cognitive language is about 15 months developed and his expressive is severely stunted. As you all witnessed, he took his first steps just about 2.5 weeks ago, although we don't have regular self mobility yet. Let me take that back, upright, two-legged mobility. He is a master crawler, climber and can even outcrawl anyone with two legs, one arm and a bottle in his mouth. He has no expressive language as yet, he has some hard consonant sounds (mmmm, ba, aba, opa) but nothing a 3 year old is capable of. By the grace of God, he doesn't have seizures to date. He has the typical EEG pattern of an AS patient with spikes and its own pattern really. He has swallow issues meaning everytime he drinks a liquid a portion of it bypasses his throat and goes directly into his lungs. As a small baby he would clear his throat when this happened, time and conditioning have caused it to happen silently now. As a result, we add a thickening powder to all drinks to get it to the consistency of 'nectar' - the thinnest liquid he won't aspirate. Surprisingly he doesn't seem bothered by this thickness of liquid as I think it is all he has known since 10 months old. He has awful respiratory fragility and issues. He has had 6 aspiration pneumonias (that we know of, caught and treated), 3 RSV infections and countless upper respiratory infections. Everytime we tried to give him regular, unthickened liquids he got aspiration pneumonia. So thickened it is! He has double astigmatism but refuses to wear his uber cute wire frame glasses. We are unsure if he is near- or far-sighted as he can't communicate to us what he sees. I assume he is near sighted as everything has to be close to his face. He has a wheelchair, a walker, a gait trainer, AFO braces, glasses, an iPad and iPod touch for communication (and he is a WHIZ on them - when he wants to be). I had to get a Ford Escape to just carry all his necessities. He is very loving, very social (once comfortable) and very much a mama's boy. He doesn't sleep for anything (part of AS) and I couldn't tell you the last time I got a full night's sleep with him. He loves to make others laugh and smile and will continue to do things for affect. He is just another facet of the light of my life, he adds to what his sister gives me!
That is our little family, not quite the typical family structure (don't forget Dolce the cat!) but we make it work. Ever since Will was diagnosed, and probably way before then, I have wanted to make a different somehow. That fixer/nurturer side of me has always existed but the drive to *do* something is stronger now than ever. I still am unsure exactly what that will look like but, until it becomes clear, I spread awareness and knowledge and write.
I can't tell you how amazing it is to have a willing audience who listens, asks, learns, loves my son and daughter and *believes* my words. I am grateful to all who read this (if you are out there!). I know there are many undiagnosed children out there, not undiagnosed angels, just undiagnosed syndromes. Syndromes with no names. If you or someone you knows has a child going through medical hell trying to pinpoint a cause, and they'd like an ally, I am here. I walked that walk 98% alone, navigated a bureaucratic system that I had no insight into and questioned renowned specialists nobody around them would dream of questioning. I dug to find hospital staff directories and pestered as many as I could. If someone needs help, I am an email away!
Happy St. Patrick's Day (come ON spring!) to all of you and I promise no more writer's block. I can't promise an exhilirating piece everytime but I am going to write from the heart, exactly how I feel - even if I fear it is too "Debbie Downerish".
Next weekend, if you are going to be at the Kid's Resale event we will have Will's awareness bracelets available for a donation. Stop by and say hello! Also, there is about a week left on Will's tshirts for awareness (http://campaign.customink.com/Will).