Perfection and Heartbreak.

Makily's school had "Our Own Games" last week. It's like the Special Olympics but it's on a smaller scale and it is for all the physically impaired classes in Marion County.

I go every year.

During the opening ceremonies they announce all the nominees for the Matthew Stoltz Shining Star award. This year Makily was nominated. I was so excited and PROUD to be wheeling her up to accept her award. Then when I read the certificate I cried.



My favorite part is "perseverance and the love of life...."

If that doesn't describe my Makily I'm not sure what does.

Makily won first place in the switch car race and second place in bowling.


See the concentration on her face?


She got a spare. :-)

Things are going pretty good here. I am still struggling with this time of year. I will be fine and then WHAM...out of no where....a cry fest. I saw the shrink last week and she said just to let myself feel however I'm feeling, let the emotion out and keep taking my meds (which I am). I also can't sleep well really unless I take a Trazodone and I have issues with having to take one every night so I don't. Then I don't sleep and I'm cranky. Ugh.

Yesterday I had an out of no where cry fest. I was holding Makily and all the sudden I kept remembering her in the NICU, all the times it's been touch and go, moments where she was in excruciating pain and there was nothing I could do but sit and rock and cry with her. So that's what I did, I held her rocked and sobbed while she watched Spongebob. I realized how lucky I was that I COULD sit and rock her.....and sob. That she is still here and that in those moments I can pick her up and hold her, kiss her, feel her hair on my face as she snuggles her head into my neck. I AM SO GRATEFUL FOR THOSE THINGS. That being said the incredible heartbreak of remembering all the things she has been through takes it toll on me. I've been going through old pictures, trying to make myself overcome it somehow. There is still a part of me that's angry at how unfair it all is/was for her but I am learning I can't change it and all I CAN do is move forward. How I wish I could make her life easier on her but I am so in awe of her and all she has overcome. She takes my breath away. She has the most perfect spirit I will ever know. She is PERFECTION.

Doesn't she just take your breath away?


On a bright note Makily has started back with private PT. She is so much stronger and is just impressing us daily with her skills. She can go from a sitting position to standing up if you just let her hold onto your thumbs for some balance. She completely supports her entire weight on her own and STANDS UP on her own. It's just amazing to see the gains she is making since stopping the Keppra. We had her measured for a TAOS walker last week and we should have that within a month.

TAOS Walker


I'm so excited and I really hope this is the tool to FINALLY get her walking. I was starting to doubt she would ever walk but the last several weeks my hope has been renewed and I can't tell you what a refreshing feeling that is.