20 Days old with her bff the "chicken" that cousin Nick gave her
Apparently you can only upload so many pics on Blogger. That's kind of balls. So this will be a multi part tribute blog. With my random babblings in between. The monkey mat has been with us the whole time. The one pick up there (with the yellow and while jammies) looks like she is playing, but it's a spasm. That mat has seen a lot of spasm activity, a lot of miles, a lot of love from Charli, and MUCH abuse lol. It's been to all of our travel destinations, several hospital stays, and has been a favorite since as far back as I can remember. She has the "chicken" right in the middle the whole time. Her favorite. I realized this morning as I was looking around that I have to retire the mat. She doesn't need it anymore. My little baby, who you could barely see on it in the beginning she was so small...my now independently sitting and playing with all of her other toys toddler... doesn't need her mat anymore. And I didn't know how to feel about it. I should be happy...she is progressing so much she doesn't need the "infant" toy anymore. She is a big girl, with big girl toys, and sitting up like big girls do. Suddenly, I realize, that while my baby was growing up and will be THREE in July I feel like I've missed it. because it's been all medical. all the time. 24/7. I don't want her to not have her monkey mat. Because that means she doesn't need it. And that means to a degree she doesn't need me. She can sit (with a spotter but still) and doesn't need me to pick her up and put her on and off her mat. She is holding her bottle now. I don't have to do that anymore either. Suddenly my girl, the love of my life and entire world, is a big almost 3 year old girl. And all I can think is scratch marks in the seizure log, and Keppra changes, and ACTH shots, and ambulance rides thinking she had an aortic dissection, and sitting in the waiting room bouncing with caffeine and anxiety as she had MAJOR RADICAL brain surgery...to make the spasms stop. To make what has kept her on the monkey mat go away. Suppressing the toddler, keeping her in the supine position, batting at her toys... like my baby. But the spasms are.. well... we know we don't speak of it. I don't like to even let it creep into my head. For fear of it awakening. Because you always have fear. There is always fear of the monster. The monster that made her stay on an infant mat and use infant toys, because it was keeping her in it's grasp. Not letting go. Until we saw the light, Dr. Chugani, Dr. Sood, Sarah... Detroit. Until we pried the monster from tired, strong, brave, amazing, miraculous girl. And let it go. And I realize now I need to let it go. Because it was the past. Part of a bleak past, which at the time had a bleak unknown future. But the present is big girl toys, and iPads, and using her AFO/SMO in the stander.. and getting bigger. Becoming a toddler. no longer a baby. But a little girl. A bright, shiny, happy, beautiful, amazing little girl. My little girl. I feel like I've missed so much. So much time consumed by seizure counting. When I should've just enjoyed my time and what she was doing... but how do you do that when you are watching hundreds and hundreds of seizures a day. How is that not the focus? It's not now. Now the focus is the amazing abilities that she is gaining. Like putting a ball in a toy. ASTOUNDING for me to see. My baby repeatedly picking up a ball, and putting it in a toy, waiting for it to come out to do again. And shining at a new iPad app that Tracey has, and weight bearing for Joan, and standing in the pool with Linda, and telling us "tap" so we play too. That is no baby. That is a little girl. My little girl. Who no longer needs her monkey mat. But I think I do. I'll keep it no matter what. But I think I'll keep it out, just move it so it isnt focal anymore. So it's more if she wants it she can sit and shake Mr. Chicken. Until I feel I can put it away in her "box of things". I feel like I've missed so much time with her in life somedays. 13 days in NICU, these last couple of weeks at Larrys. They (Larry and family and the therapists) have all been great in keeping me updated, and pictures, and phone calls home. And I go visit. But the guilt is killing me. The loneliness is only bearable now because I had to ask Dr. K to put me on something else because my Effexor alone wasn't cutting it. Weeks I've missed...months even because I was so focused on appointments, and seizure tracking, and my journal. I should get rid of that too...but I do find it's useful even still these days for ER trips to have what's been going on written down. When Charli comes home, she is coming home a bigger, smarter, cuter (as if that were possible!) girl. Who doesn't need her monkey mat anymore. Even tho mommy still does. It's like an old friend. One that has probably overstayed it's welcome ten fold...but I hate to box it just yet. Even tho I have thrown out most of the toys associated with spasms after surgery, the mat stayed. Because she LOVES it. So it will be close by. In case she decides she wants to go grab it and chew on Chicken or froggie. But the focus will no longer be the "infant mat" it will be the new play area with all (and I mean ALL) of her toys out to play with. The ones with balls that she couldn't use before because she hadn't learned it yet... she knows now!! She can roll about the house and motor all over now. My little girl. My teeny 6 lb baby girl, who looked so lost on that mat in the beginning. Is now a beautiful, smart, amazing girl. I am so proud to be her mother, and proud to have the family we do who does anything and everything they can for her. Both sides. And therapists that go above and beyond the call of duty for us. I'm so incredibly lucky. She is so amazing. I need to buy that elephant thing Joan has cuz she loves that. My girl. My big girl. That I love more than anything in the ENTIRE world. I am so thankful to Larry and his family for helping her so much, allowing the therapists to come out there while she is there. They have done so much for her I don't know how I could ever possible thank them.
So the next blog will have more monkey mat pics. and probably more rambling. For now, I think it's bed time. Good night my sweet Chee... I miss you. I love you.