I know who this is. Her name is Saylee, also know as: Say Say, Sully (Brodys name for her) Say Jay (Saylee Jean...only my Gma JEAN calls her that), the middle child, the only girl, the SPECIAL child, the AUTISTIC child, seriously the list goes on.
During my first trimester mid-life crisis/nervous breakdown of this last month, Saylee has been hurting. Being the mother of an autistic child is sort of like being a mom of a "typical" child but without having your sight or hearing. You know you have a child, you can feel them, hold them...but without ever seeing them you have no idea who they really are and without hearing you have no idea what they want and how to help them. Thats pretty much your 9-5 gig with an autistic mom.
I can't believe its been a year since we started this journey. She is such a different girl then she was a year ago. Just going from an 18 month to a 2 1/2 year old is such a change in itself. I usually only have really good things to say about her "recovery" however, this is not one of those times. The girl in this picture, she's checked out for the moment. Taking her place is a bigger version of an echo of a little girl I used to know. The phrase of the day at my house lately is, "I DON'T KNOW WHAT YOU WANT!" That of coarse comes after countless fits that don't involve ANY form of communication in any way, shape or form. It's more like lets make a deal, I choose what's behind door #1,2, or 3 and if its not what she wants...she destroys the door! Sometimes it works, sometimes...not so much.
I don't want to write down an explicit list of her unusual, "weird" autistic like behavior...I didnt write this to make her look less perfect than she really is. I just feel like writing this down will automatically somehow make it better. I can handle the no sleep, I can handle the non-social desires to be by herself ALL the time but what I can't handle is knowing that if the whole "disease" ends in triumph or pure defeat... that Im the one to blame. "No pressure Ma!! Just know that when Im totally incompetent, have no friends and no goals for my life, Im blaming you!" That's what the future Saylee says to me in my head in times like these.
Her life is like a dance. I step forward, 2 steps back...2 steps forward, HOLD...1 step step forward, 5 steps back. I want to be her dance partner, sometimes she'll hold my hand, sometimes we move as one and end with a dip! and sometimes she'd rather dance by herself. Its ridiculous. I guess with all these analogies I'm trying to say in a nice way that sometimes even with the positive attitude, the faith and the extra blessing, etc... this whole autism thing TOTALLY BLOWS!
I feel better already.
We started her back on her diet today. She's been off for about 6 months and it has totally taken its toll. We're just going through this process of elimination. We gave her normal food and she was fine. WE WON! I thought, but we we're just allowing the harmful things to her body to slowly regain control...and they have. We're also back up to about 8 supplements a day. Her bottles are more like cocktails than juices with all the stuff we put in it! Im confident that this first step will help us get back on track with her recoverry. I have another anolgy for that but Im sure you don't want to hear it. I done with my woe is me post and the positiveness is already flowing through me...at least for now. Its saying to me, "Find your in the journey, Kristen"...enough said.
"Life is like a box of chocolates, you never know what'cha gonna get!" I would have to disagree. If life were like a box of delicous, tempting, indulgent chocolates, I could just eat my worries away. (and we all know what that can do to a gals figure!)
P.S. I made the dress Saylee is wearing in this pic...it's my first one!
I don't know why I didn't take a better shot of just the blanket, but this one is one of my favorites to date. It's the first decal I've sewn on a blanket and Dustin drew this bird up for me, I love it!
Ain't she puurrty??
I also used the same decal for a matching onsie with a different print. This is before I appliqued it on
with this blanket I used a new mink because Joanns was out of the dottie one. It's alot thicker so I did'nt put a border on it. I really liked it, it was oober soft and fairly easy to work with.
double stitched borders
My first mini nugget outfit. The skirt is pretty full, I tried it on Saylee's cabbage patch doll but I still couldn't imagine it on a little baby girl! I can't wait to actually see it on the new addition to the Hon Family, Tiffany's baby girl Taylee Rae.
