Ash and I have been running Blake and Al around to all of their activities all week long. Its been a little crazy as we get adjusted to all the new schedules. Trying to get one here and the other one there is almost comical as we navigate our way around town trying to figure out what will be the best route to give us the most time. Anyway, she loves getting out and its a blessing to have her well and home so that she can do all this running with us. A blessing so big that I almost tear up each time I see her smiley face in my rear view mirror.
Along with the running around we do each afternoon and evening there are a lot of emotional situations I am learning to overcome. Things that will get easier with time(I imagine)as we all adjust to what the world "out there" thinks of our little pickle. She is now riding in her new stroller (even though Blake and Allie aren't thrilled about it). To be honest it has taken a couple of months and a few modifications for Dave and I to get "thrilled" about too. I have to admit that it has been much easier to get her around since we started using it. Its not really a wheel chair(because it doesn't have the large wheels) but its not really a regular stroller either. Its a cross between the two. I think thats what makes it so hard on the kids. We've had few talks about it. Like acknowledging out loud that "yes, Ashley Kate is handicapped". OUCH! Its something we don't see because I think our gratitude for her life and each accomplishment is just so large, but its true and when we go outside our little circle, when we go "out there" it is something that has become obvious to us by the way people react to her.
Tuesday evening was such an emotional experience for me personally. The reaction to Ashley Kate started at one end of the spectrum and I found myself in the car with my mind racing and my heart aching beyond description to a couple of hours later my heart bursting with gratitude for those that God has placed in our circle who LOVE our Ashley and see nothing but an amazing little girl. It started on the soccer field with Allison's practice. A new team, a new coach, a new set of people. No one knew me or Ashley as we sat on the sidelines trying to pay attention to Allie and not the little kids who were gathering in a huddle trying to figure out why Ash was doing the things she was doing. Ashley was being wonderful, but I can see how confusing and interesting it would be to those who don't know why she is the way she is. Anyway as Ashley Kate played she was humming, and whispering, and grunting, and signing. I encouraged each sound and acknowledge each sign as we had our little conversation. She was happy. Smiling and giggling. Little ones just learning to toddle were constantly being pulled away from us, older children were whispering and wondering why she couldn't talk and why she had to sit in that "chair". Parents apologized to me because they didn't really know what else to do, and I reassured them it was ok. By the end of it I was an emotional wreck, because it really wasn't ok. It was painful. It was awkward. It was just hard. I felt guilty for reasons I don't really understand. Maybe because I was thinking things like "if she could just talk, or if she could just get up and walk" maybe... It was crazy! I am absolutely, 100% not ashamed of who she is. She is beautiful and amazing and intelligent and wonderful. Why in the world would I being trying to make excuses to myself as I drove away from that field? Anyway, it was emotional.
The next spot on our agenda was the baseball field. We got Ash loaded into her stroller and as we approached our friends sitting outside the fence watching our boys hit the smiles on their faces and the excitement in their voices as they asked when she got her new wheels and how she had been doing absolutely melted me. We were no longer "out there" where she is different, but we had made it to the safety of our world where she is loved. Oh what a difference! They reassured Allie that it didn't make her look different, that it was just a stroller and that they were so excited that Ash could sit up in it like a big girl. It mended my breaking heart in a way that I desperately needed. Now I struggled to fight off tears of thanksgiving rather than frustration.
The thing about our Ashley is that she looks "normal". Until she is approached and spoken too you wouldn't know that she is different from any other 3 year old. She is smiley and adorable. She has caught up in weight and in height. She plays with toys and enjoys life. She is so, so happy and you would have no idea that she struggles in a few areas. She is no longer on her feeding pump during the daytime hours so we don't have anymore questions about her tubes or her pump. She looks so good and so normal. She's just Ash. To us and to our friends she is normal. They celebrate each and every bite of food, each and every sign, each and every milestone right along with us. They love her and appreciate the fight she has fought. Oh, what a gift it is to be surrounded by those who love her.
So along with our adjusting to our new schedules we find ourselves adjusting to being "out there" this year with our Ashley. I promise you it is better than a PICU, better than a hospital, better than being miles and miles away from all the running and going that is the norm for our family. It is wonderful to be able to load her up and take her with us. It is fun and it is a blessing. It may just take me another time or two of going "out there" to adjust to our new "ride" and all the questions that our noisy 3 year old seems to bring about. If they could know how precious that voice and those noises are to this mom's heart!