At the End of the Day
At the end of the day this is the image I laid down with. A smile crept across my face and gratitude filled my heart. A perfect ending to a not so perfect day. Nothing else mattered. We survived. She still blows me away with her courage at every single bend in the road. This beautiful child of mine. That last sentence sent goose bumps up and down me. "Child of mine". I've done nothing in my life to deserve such a gift, but I am grateful. Even on the rough days.
My frustrations come from a broken heart. I can do nothing to spare Ashley Kate from the pain that she will and does experience in her life. Through the years I have been able to shield Blake and Allison from most things that would bring hurt to them. For Ash ? I have not been able to do this. Instead I am forced to make the decisions that allow the hurts to be done to her. Its the hardest thing I've ever done. The absolute hardest. Sitting by and watching her experience physical pain and many, many times being one of those who must hold her or pin her down while she endures it is something I wouldn't wish on anyone. My heart breaks again and again.
On top of all the "nonsense" that took place in her life yesterday it was a very emotional day. Her physical therapy session consisted of me sitting on one couch crying my eyes out and asking questions to our therapist that she too had asked herself many, many times in her line of work and hearing that there are no answers to those difficult questions. Sometimes Sue is more than our physical therapist. I thank God for her. She is a blessing in our lives. A friend who allows me to fall apart at the seems while she continues to encourage me along this path with my daughter.
I've spent the last month reading through the gospels and then Acts. I wish I had kept track of the accounts of healings that have taken place just in those 5 books. Each and every time I stumble across another person being told to "arise, to get up, to take up their bed and walk," I get those goose bumps. I wonder to myself "Why Not". If He is the same God today that He was yesterday(and I believe that He IS), then "Why Not?" I read the words recorded about the man who left "walking, and leaping, and praising God" and said out loud to no one that "She could do that". She really could. I would teach her to walk and leap and praise God. With each and every step I would remind her to give Him the glory. I would encourage her to tell her story and to never stop. Still, I'm left in awe of His power, His spoken word, and His mercy on those who had been shown none.
As we begin peering into the world of wheel chairs, accessibility, home modifications, a newly equipped vehicle, lift systems, etc., etc., I find myself praying for it all to change for her before we actually enter it. If it doesn't? Then Ashley Kate will be just fine. She is happy. She has no idea that she is missing out on anything. As I shared with Sue yesterday, "Ash doesn't have a problem with her life, the rest of us are the ones struggling to deal with it."
As a baby and a toddler its been easy to get by without any of this. She's always been so tiny and I have been able to care for her. Still as an almost 4 year old its relatively "easy". I mean lifting the 34lb, long legged, beauty is a little exhausting by the end of a day, but I manage pretty well. Its the future that concerns us. She's only almost 4, but what about 6 and then 8? 10, 12, 14? How will we adapt our home, our vehicles(getting her in and out of car is an exhausting task and becoming more and more difficult), our hearts to all of this, if that is even where she is at that time. God could heal her. I KNOW that He could and she could begin to walk at some point. Either way we as her parents have to prepare. It is our job to take care of her and to give her the absolute best care that we can. With this in mind we peek, we tiptoe, and we begin to make plans to enter this world that is very, very unfamiliar to us.
In order to do all of this moving is necessary. There is no getting around it. On top of Ashley Kate's needs Blake will be changing schools and he would like to attend the school district that most of his friends are in. We are supportive of that. This places a limit on the homes available to us. I know the right one is out there. I just wish I hadn't seen the other one because it would have been just right for us. We have a clear budget in mind and much of that budget is being set aside to make the modifications for Ash's needs to the home we purchase. Again, limiting our field of possibilities. One of our biggest desires is wide doorways, hallways and large open spaces. We plan on fitting Ash with a chair that she can learn to control in the very near future(more than likely by the end of the year) and we are looking for a place where she might have room to experience the feelings of freedom and movement. Currently she stays wherever I place her in the house. (I hope that answers the questions asked about why we consider moving.)
There are big changes in store for our family this summer. Change isn't easy. I like for things to remain steady and constant, but its not always the best way to see growth. Its in the growing where we tend to see God's hand in our lives the most.
My apologies to those who were offended by the photos from last night. To tell you the truth I never know what will trigger an offense and things that I wouldn't think twice about tend to sometimes do just that. I'm sorry you were upset about her dentist pictures. I really didn't intend to be offensive. Ash's story is just that. Ashley's story. I record it for her and for our family and I knew my family would want to see how things went during her appointment. That is the reason behind showing her there and also showing her photographs while in the hospital.
So today's plan? Ultra sound in attempt to locate a good vein for a catheter, stool cultures, and fluid replacements. That's all I know. We do have a slot blocked in the OR, but I have no idea what time it is. Hope your day goes well and that you are blessed beyond what you expected. Take care my friends. Trish