It consists of some pretty amazing people and we are so excited for her. Ashley Kate is surrounded by a group of teachers and therapists who all have a common goal in mind. Progress. Its humbling for us as her parents to sit in the midst of this group of people who want so much for her just as we do.
She has her private physical therapist, occupational therapist(who is fluent in sign), and hippotherapy therapist all through Kidz First Therapy. She also has her home bound pre-K teacher, physical therapist, speech and feeding therapist, and occupational therapist from the school coming to our home each week as well. Its a total of 9 sessions in 5 days each and every week. On the weekends we play and reinforce all that she is working on throughout the week.
Ash is happy. Feeling stronger than I can ever remember and making huge strides each week. She works so hard. She really does. Still opinionated and stubborn(I wouldn't have it any other way), but as sweet and silly as can be. She's beautiful and amazing. I sit and play with her each day, listen to her giggle, watch her sign and communicate, and I am in awe of all that our God has done in this child's life. I do my best to take nothing about her for granted. She is a gift, was given a gift, and continues to give gifts to all who work with her.
Our meeting yesterday was mostly good. Everyone was very positive and encouraging. They all set goals for her and Dave and I agreed with all the goals that have been set. At one point they gave their assessments and used a developmental age that shot me through the heart as though it were a knife. I could feel myself cringe inside and was hoping that it was not visible on the outside. The protective instincts kicked in and I so badly wanted to announce to the "world" that they had no idea what they were talking about. I wanted to yell, "do you have any idea what she has survived? do you even know what a miracle she is? do you know how blessed you are to place your hands on a real life, living, breathing miracle? Instead I sat there in my chair sitting on my hands as my insides raged against all the "assessments" and all the "necessary" paperwork. I so desperately wanted to argue, to insist, to inform, to anything, to them all, but it wouldn't have done any good. They were only doing what they were trained to do and they were only following the criteria they had been taught to use when assessing a disabled or a delayed child. They don't mean for any of it to be hurtful or offensive. Its just that as a parent of the child being discussed it does hurt. Plain and simple. It just does. It never stops hurting. It never becomes easier to hear. It never sounds "ok" to our hearts.
Her team is amazing. All wonderful professionals who want the very best for Ashley Kate. I'm not offended by them in any way. I'm offended by the truth. The truth that even though I know is the truth sneaks up on me when I'm not expecting it to. Still I refuse to have that truth define my daughter. I won't slap labels on her. I won't run from doctors office to doctors office just to have a diagnosis. Its not necessary. I will not allow her to be put in this "box" or that "box". She is who she is. She is more than amazing. More than intelligent. More than talented. More than capable. More than I had ever imagined.
So what if we didn't get to start playing soccer this year, it doesn't mean we won't ever be watching her kick that ball across the field. Just not a four. So what if her backpack contains a feeding pump and Neocate instead of crayons and folders. Someday it just might hold those things. Just not this year. Not her pre-k year. So what if she's sitting in a chair this year instead of skipping across the playground. She has time to learn to skip. I close my eyes and try to imagine just what that image might look like. Pigtails bouncing up and down. Someday, just not today, when she's four.
Her team is ready. They've all been assembled. They are all excited to see how much progress she'll make this year. Her mom and dad are ready. We've been waiting for these days to come. The days where she's well enough, strong enough, and home long enough to really begin. Blake and Allie are ready. They so desperately want more and more and more for her. If this is all there is then they love her as she is, but they both believe in their hearts that there is so much more just waiting for her to discover. Its going to be a good year. Her 4th year. Her 3rd since transplant(wow, that amazes me every single day). Her pre-k year.