I need a moment

And a space to write this out, I am in shock still and not sure where to start.

Those that know me, also know my son, my middle son Bailey that is. He was born with Oliviro Ponto Cerebellar Atrophy. Many moons ago I went on various boards/groups/websites to see if I could connect or find someone else with the same condition. I would search hours and hours and hours, days spent just trying to get someone who can relate and some anwsers. I knew it was a long shot since the doctors told me that there was noone else on record or in case history, that there was only 11 kids from Hymalasia (sp?) that were only studied to the age of 2, and that was it. They don't know why he has what he does, I was told it was either 1. fluke, or 2. A recessive gene disorder where both mine and my husbands genes combined.

Bailey was about 5 when I gave up the search for someone else, it was useless, there was nothing out there.....so I thought.

Out of the blue the other day I get an email saying that she read my post from many moons ago on a cerebellar site (Bailey is almost 12 now) and wanted to know more about him. She shared a video of her daughter, and I BAWLED, like a little baby!!! It was ridicioulous, but to think there was another person out there who can relate, whose child has the same thing mine does, whose video was an EXACT replica of my own son...

my husband put it so well...."it's like being on a deserted island thinking noone is there for years and then all of a sudden someone shows up".

I gave her my number and last night we talked, I had just finished bawling from watching her video and sent her an email when she called, within minutes. So naturally I hadn't yet composed myself and when I heard her voice, I just started crying again! This is NOT hormones, this was a huge sense of overwhelming, shock, elation and relief from a mom whose done it alone for the past 12 years never knowing from one day to the next just what to expect. Never knowing a prognosis, or what the future may bring, never having anyone to judge this condition by. I can't even describe those emotions when I realized I was not alone.

During our conversation she shared more about her daughter, I about my son and they are almost identical. Her daughter has the diagnosis of Cerebellar Hypoplasia...funny how my son was labelled something different and yet both of our kids have the same thing, not just in disability but in MRI scans (both have underdeveloped brain stems, pons, cerebellums and olives), both have almost the same visual impairments, both are Deaf and use sign, both had G-tubes to feed the first year, both were born without the suck/swallow/gag reflexes and had to learn them, both had the same balance problems, and so on and so on...both have struggled to succeed and both our children are succeeding.

I later learned that there are a number of people out there I can connect with, so I will be doing that over this weekend although they have not progressed the same as what our kids have...many are adults and can't walk, some have died...etc. etc. Even still I plan to get more info and restart my research, I just gotta see who is out there.

Want to know the real shocker???!!!???

We both were at the very same hospital for our newborns going through tests and figuring out what was wrong, just 3 (yes 3) months apart. She was there with her newborn struggling to find a diagnosis for her daughter 3months earlier, and stayed a month there....I came after with my newborn, same age, same hospital, same conditions. Strange.

To top it off and kind of got me a little frustrated was that just 3 months earlier she was there, and you think her neurologist and my neurologist talked? NOPE. I was told there was noone else, she the same.

They're the same clinic for crying out load, same hospital, same rooms, they see each other every day and I imagine or at least HOPED they were sharing information on complicated patients like ours.

And whats more, same thing with the genetic doctors, same clinic different docs, and you think THEY would hook up and chat about things trying to figure out our kids who were really a puzzle to the docs...NOPE, same thing, they have no clue, don't know why, and never seen another case like it.

AHHHHH!!!!!

Anyway, I was all willing to get together and have our kids meet, maybe out for a coffee, she; I think; was not looking for that. It's kind of sad, it would have been nice to have someone who can relate, and we could have swapped stories and shared ideas, as our kids goals are much the same, as well as their struggles, but she didn't seem like that was what she was looking for.

I asked her how come she contacted me and if she was looking for someone to connect or if she was just seeking information or just curious, and she came right out and said "No, no connecting, she was just curious". OKAY...at least she was honest. I can take a hint.

Even so, even if I never talk to her ever again, which I don't think I will, it was nice to know I'm not alone, my son is not alone, and she did give me some resources too.

What a crazy couple of days.