Wednesday, May 25, 2011

364 days.....

I really want to blog tonight. I have so much in my head I need to get it out. Tomorrow is the one year anniversary of Charli's hemispherectomy. Tonight, in her brand new purple gait trainer, she took her first steps. My totally non weight bearing child took her first steps. and not just one or two. SEVERAL.

The problem is I have so much in my head it's hard for me to get it all out right now. I'm fighting with Charli's dad quite bad so that has just pretty much pissed all over my day. Now my urge is to just go to bed and pick up with a new day, a bright outlook, a great PT session tomorrow, and not let the negative crap bother me. But I'm tired, and it was a big day, and it's an emotional week for me to say the least.

So I'm going to blog about this. Just maybe not right now. It's funny, this time last year I was sitting in the Renn Center freaking out about how to send my child into the OR. What was going to happen. Would her smile go away. would her seizures go away. Did I make the right decision?

Tonight I got my answer as Charli cruised in her new Rifton Pacer. Everything in the last 364 days has been miraculous for us. May 26 2010 gave Charli a whole new life. In the NICU they told us she would probably never walk. I want to take these pictures, mail them to Dr. Foster with a very short note containing a few expletives.

HOPE exists. Everywhere. In all of us, in every tree, leave, cloud. Everything is bright with possibility, every dawn a new opportunity for a great day. Sure, we have bumps, and hurdles, and bad days, but my philosophy as of late is the glass is half full, things will be ok, I CONTROL MY DESTINY. I CONTROL THE OUTCOME OF OUR LIVES. And from here on out its ease up on the negative, full steam ahead with the positive. I feel alive. I feel better. Everything is brighter, more crisp. My appreciation for life is at it's highest. My daughter WALKED today!! I think I was numb with pride as I sat there taking pictures. I couldn't even cry..I was so happy. Because I KNEW she could do it. I had NO DOUBT. I knew once she got the right equipment she would be fine. And thankfully she has a wonderful therapist who agrees with me. Linda made this happen. She knew she was ready for a gait trainer. She fought to get her one, did the letter of justification , set up the eval for it.

Today was a glorious day. For many reasons. Overshadowed by sadness, friends losing children...a heartbreaking loss during a hemispherectomy, a friend taking Charli's birth buddy Hannah to the ER as we speak. My ex trying to assert his power and ruin my life yet again...but I won't let that get to me. He can do whatever he wants ...his failure to realize by getting me evicted etc doesn't hurt me, it hurts Charli. It's laughable really at this point, that he still doesn't get it. But whatever. this isn't about him. This is about all these emotions and feelings tied to surgery buzzing around in my head. and the fact that I watched my child walk tonight. Amazing. My heart was about to burst. I was so proud, and amazed..yet at the same time I knew all along she could do it. What an amazing feeling to watch your child stand, and then take steps. And MANY steps.

Ok. this is all over the place. Larry is text arguing with me so I'm losing all train of thought. Good night for now my friends. I will be all over the place emotionally tomorrow I'm sure...so expect a blog :) In the meantime, love hard, laugh often, hug your kiddos.. say prayers for those in need.

Love to you all.

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