Ashley was busy standing and entertaining us all last weekend in the RV.
She kept us laughing as she signed and danced to the music. We love this girl! Just look at those legs stand there all by themselves!
...its no longer if she'll ever walk, but when."
I looked across the room at her daddy and nodded my head. "You really believe she's going to?"
"I do and I think its going to be soon. I'm not so sure about the talking, but I'm confident she's going to walk."
I'm going to admit to all of you that I'm starting to think that way too. Crossing over into the land he lives in, you know the one, "the land of rainbows and daisies" is kind of fun and exciting. For the first time in her life I'm starting to believe that our girl will walk. Someday. I think its that belief that made it "ok
" for me as I sat and watched her be measured for a new wheel chair last week. I just kept reminding myself that this was so temporary. She won't be in that chair forever. I just don't believe that she will, and even if she never makes it out of it on this side of heaven I KNOW that she won't be in it for eternity.
Its heartbreaking and disgusting
to admit, but Dave and I have had hypothetical conversations about what we would choose for her if we could. Able body or able mind? What would we wish for her if we could? Obviously we wish for both, but if you could only have one of those things for your daughter what would you choose. We both agreed we would want for her mind to be whole. For her to have the ability to think, to communicate, and to process normally. The able mind far outweighs the able body in our hearts, but we still desire for her to have both. There are no crystal balls and we have no way of knowing if she'll get either of the two, but she is definitely making huge strides toward an able body. I wouldn't
wish these conversations or the silence that immediately falls between us after we've had one of them on anyone. I really wouldn't. Its one of the tougher parts of being us, but lets go back to talking about her progress.
Ashley Kate wants to get up and go. She is no longer happy and content to just sit and play. She has learned to sign "stand up" and thats
what she wants to do ALL DAY LONG. Its an incredible feeling to look at her and see her opening up to more of the world around her. I can't find the words to explain it, but it is incredible.
She is not able to stand independently yet. She needs for us to hold on to her underneath her arms or to help her find stability in something behind her, but as the picture clearly shows she is standing and weight bearing in her legs, ankles and feet. We know she is going to require some type of bracing and we have asked for the referral. Nothing has come of it yet, but we are hopeful to get that referral so that she can be evaluated and fitted. Her right ankle isn't quite right. She struggles with it rolling to the inside and it is going to have to be corrected before she is able to master walking, but as we wait for that referral to come in she continues to use it. She is getting stronger and stronger every day as she works. This weekend we timed her and she stood for 5minutes and 36 seconds. OVER 5 MINUTES on her own with just the support of a ball behind her. I think its more her "security blanket" than anything, but for now we'll take what we can get.
Tuesday in therapy she took 5 steps. Tears burned my eyes as I watched her pick up her right leg and step forward with it completely unprompted by me. Her left leg doesn't work quite right and it has to be dragged along for her, but she very clearly and distinctly picked up her right foot and stepped forward with it. Do you have any idea what it feels like to experience something that HUGE with your child? I never dreamed this is where we would be. I never knew what one little step forward at four years old would do to this mommy's heart. It brings me to my knees. It literally takes my breath. I would do anything for this child. I would give her my legs, my ability, my everything if only she could skip all of this struggling. How I wish I could do this for her, but I can't do it. There is absolutely nothing I can do to give this to her. So I smile, I encourage, I cheer, I assist, I applaud, I praise, and I pray for her. This is what I do. Each and every day of her life.
I wish you could see the look in Blake's eyes, or the smile on Allie's face, or hear the excitement in Dave's voice. I wish there were some way to share with you the raw emotion that we experience as we celebrate with Ash as she stands up. I've never appreciated anything more in my entire life than. She brings such joy to our home. The twinkle in her eye as we applaud wildly for her is so bright. She is SO proud. I love her so very much and I'm so grateful for her life. Even with the struggles, I am grateful. She has changed this family. She makes us "us", and without her and all of her struggles we wouldn't be who we are.
Tomorrow I will attend a meeting. I'm going there to discuss what Ash can do and I refuse to talk about all that she can't. I just do. I can't change those things, but I can work with what God has given her. We will lay out a plan for the year. Her teacher, her therapists, the school system, will all set goals that we will work together on, and for the first time I'm excited about one of these meetings. God has blessed us with a wonderful teacher and I KNOW that she has experienced some amazing things with our Ashley the last 3 weeks and she's ready to share them. I'm so excited to hear her speak.
Ash is amazing. She really is. She's happy. So very happy. Yes, there is still a long list of things she can't do or things she has lost, but the list of what she CAN do and things she has gained is growing longer and longer each day. I love her and I'm humbled to be her mom. I just am. I wake up every day and wonder "how I got so lucky". Why am I so blessed?