Chiari. Okay, I hate the word hate....but, there is NO other way to say it. I HATE Chiari!
WARNING THIS IS A VENT!!
Friday, Charlie was at school, he left at 5 AM to get there. I got everyone ready for school, left for Kaitlyn's school at 7:30 AM, dropped Kaitlyn off at 8:00 AM, drove to Ryan's school, dropped Ryan off at 8:30AM, drove to the hospital for Anderson's therapy at 9:00 AM. WHEW, we make it on time. Anderson has 1 hour of therapy on Friday.....we are leave therapy at 10:00AM.
Anderson and I get to the car, I can't find my car keys. Keep in mind it has been over 100 degrees here the past week....I am HOT, SWOLLEN, and grumpy about the weather b/c it is making me feel "pregnant"....when usually I do not feel this way. I SQUAT down next to my car with Anderson between my legs. I want him there so he does not run out into the middle of the parking lot. He decides he wants something in my purse. I do not know what, b/c my 28 month old does not know how to utter 1 word (b/c of Chiari). But, I say...Anderson, there is nothing in Mommy's purse for you. He gets mad and throws one of his 100 temper tantrums for the day (he has tantrums b.c he does not speak and gets frustrate). It makes me fall on my #$^$% !!!(remember I am squatting with my BIG prego belly!) So, I fall I am sitting there in the parking lot with my cream colored canvas purse on the dirty parking lot ground, Anderson in my lap screaming and throwing a temper tantrum, a big prego belly, and my legs are so swollen I can hardly stand up.
I quickly put myself back together (well, I pretended to...), found my keys, got Anderson in his car seat and buckled him up. I climbed in the front seat of my car and just cried. I sat and cried and cried.
WHY did all of this happen to us? WHY were we chosen for this journey? WHY can't I be at the park, at the zoo, at the pool in this 100 degree weather, at a friend's house having coffee? I could think of 50 other places I would rather be than sitting in the parking lot of the hospital where I just left OT and ST therapy for my 28 month old son who needs HELP! *SIGH * UGGHHH. I was so SAD, FRUSTRATED, ANGRY, etc. I do not even remember what a "Typical" 2 year old is like.....
For 2 years we have been driving to the Children's hospital 2-3 times a week. My older children have spent MANY of hours there...the security guards know us.... the lady's in the cafe, the valet parkers, the volunteers in the gift shop, the parking attendants, ALL the therapists (whether they treat Anderson or not), etc. know us..... WHY is this?? B/c we have spent hours and hours and hours there! WHY can't we just be "normal" and why can't I just be the stay at home Mom that goes to Mom's meetings, playdates, park days, etc? I can't do so many things b/c I have to say "oh, Anderson has therapy". I have so thankful to my friends that have volunteered to watch Kaitlyn and Ryan so they do not have to come all the time, I am thankful to the friends that have even offered to drive Anderson to therapy for me to give me a break :) The offers of kindness even just help....even if I do not take friends up on it....they are so appreciated!
Yes, I was feeling sorry for myself this Friday. It typically DOES NOT happen. Usually, I am so thankful to have found the resources that I KNOW are benefiting Anderson the most and while he is young it is so critical. I know all of this.
But, I want my little son to be out playing with friends, and I want to be out enjoying time alone with him while his older siblings are at school. I was just sad that we do not have the "normal" life so to speak. I wish I could just take him to Disney.....just the 2 of us.....maybe one day we will have to "skip" therapy and just do this!
(good idea Liz!)On the positive side, we are getting these treatments, we ARE seeing changes for the better in him (he is doing so well in PT they reduced his physical therapy to only 1 hour per week instead of 2)....we are getting Anderson the help he needs and it IS making a difference. And, we NO longer have all of the specialists' appts we had last year trying to decipher this whole mystery.
The journey of therapy started 2 years ago this month when Anderson was diagnosed with torticollis. He had Physical Therapy 2 times a week at the age of 3 months at Children's hospital. It was 1 year ago last month that his occupational therapist felt there was something neurologically wrong that we needed to see a neurologist and an orthopedic surgeon. So....our journey was just beginning. Today, we are at the hospital 1 hour a week for physical therapy, 2 hours a week for occupational therapy, and 2 hours a week for speech therapy....total 5 hours per week.
We have come a VERY long way....and I could not be prouder of our little warrior. He is a fighter, he is adventurous, he is couragous.....he continues to learn everyday and teach us something everyday.
But, some days....I have "days"....and Friday was one of those days....where I just wish I had NEVER known the word Chiari.
Then, ironically, I was checking in on our "Chiari friends".....(Riley and Alex in my link section on the right).....their Mom Rachel made a post on Friday saying she "hated Chiari".
OHHHH....and as Rachel said...we need to know MORE about Chiari. We need to know more about the it and related illnesses.
Sigh. VENT over. Sorry for that. Today has been a better day! :)