This is written to the lady next to us in the parking lot today and to those surrounding us in the line at the grocery store.In so many ways I wish you could understand and then in other ways I hope you never really do. For if you do truly understand what its like to be "us" then that would mean that you must be one of "us". I'm not desiring one ounce of pity just a little bit of compassion and patience.
Its not often that Ashley Kate leaves the house to accompany me on those errands that must be done. If at all possible I run those errands such as going to the grocery store in the middle of the night so that she is home safely tucked into bed under the watchful eye of her daddy or perhaps only when I have a grandparent available to sit with her. Taking her along with me today was not ideal, but it was my only option. Sometimes there are items that just can't wait.
I can only imagine it was frustrating for you to have to wait as I unloaded her from our car and transferred her into her chair. If you were in a hurry then I can understand your frustration, but I would like to ask that maybe next time you not choose to park next to the lines that surround the handicap parking spaces. I realize they are closer to the door, but I'm wondering if you realize that those exiting or entering those vehicles might have difficulty in doing so? I would guess that 9 times out of 10 that would be the case. It takes us a little longer to get out of your way and to get the door of our cars closed. I have to secure Ash in her chair and fasten her lines and pumps safely onto that chair before I can push her out of your way. I wish it weren't so, but it is. There is absolutely nothing I can do to change this part of our reality. Trust me if I could I would. How I wish she could unbuckle her own belt and hop out of our car onto the pavement to hold onto my hand and walk next to me into the grocery store. I really and truly do wish this. I could see the frustration in your eyes and it was very visible to me that we were causing you stress. The way you pulled out of that parking space just as fast as you could was a pretty good indication of that fact.
To those of you who were wishing I would "discipline that child" and make her stop her hollering as we waited in line to check out, again I wish I could. If it were only as simple as a "discipline issue". If only the correct parenting methods would fix the fact that she can not speak to me to tell me what she would like then I would gladly take those parenting lessons from you. You see, she can't speak. I have no idea why. NO one does. She does sign, and I know you witnessed that we were trying to work together with the signs that we know to figure out her needs, but we are still learning as is she. It is very frustrating to her not to be able to communicate enough to make me understand. Yes, the hollering and pointing is inappropriate, but I don't know what else to do. I'm not sure if you could tell or not, but your looks and comments were making me wish I could crawl into a hole and disappear. I wanted for you to know what a miracle it was you were staring at. I wanted you to appreciate her the way those of us who love her do. I wanted so desperately to help you understand what you were missing out on by passing those judgements, but instead I just wished we could become invisible to you like the hundreds of other shoppers were that surrounded you.
To the majority of those we shopped with today all you saw was a beautiful, pig tail, bow wearing four year old with eyes that shined brighter than today's sun. You witnessed a happy little one signing "apples" and "lettuce" and "oranges" and watermelons" as we placed them into our cart. Your smiles were genuine and even though I know you didn't really understand all that she was saying to me with her hands you still paused long enough to share your smiles with us and I thank you for that. I truly do.
Why I titled this post try to understand I don't really know. If Dave and I don't understand I'm not sure how you are supposed to. So many times I have thought to myself if only we were struggling with transplant, or with prenatal abuse and neglect
, or with premature birth delays, or with the inability to walk, or with brain damage suffered during cardiac arrest, or with language, or with the inability to eat, or with etc., etc. If only, but we were handed each and every one of these issues all wrapped up in our beautiful bundle of baby girl and we are doing the very best we can to work with them and through them. There is a maze of disabilities
we are finding our way through, but along with each of those disabilities we are finding reasons to celebrate. I can honestly say that on one hand I would spare Ash each of her struggles if I could, but on the other hand I am so grateful for who we have become because of them. We are better people because of the way our God created our daughter. People I'm not sure we would have ever figured out how to be. We are more patient, more loving, more appreciative, more understanding, more in awe of our Creator, more everything. We take nothing for granted. As I watch Blake smash a baseball and run to first base and then second and look to see if he can go on to third I sit in the stands and I thank God for the arms, the legs, the brain, the talents he gave to my son. I don't take it for granted that he is on that field. I know it is a gift. As I sit across the room from Allison and watch her read a book, take notes, and ask questions on the meaning of the paragraph I thank God for her eyes, her mind, her ability. The ability to read, to think, to reason, to speak and to ask. Not everyone is born with those gifts. Our youngest child does not possess the same gifts as our older two do, but she does have some. They are just a little different. She possess JOY, fight, determination
, the will to survive(just to mention a few). All true and honorable gifts given to her from our God.
Ashley doesn't look that different than other four year olds
. Perhaps her face is a little rounder and her cheeks a little puffier thanks to our old friend Prednisone
, but other than that its hard to tell she's disabled. Hard to tell in passing, but if you take a moment or two to look closely then you will see that her chair is not just a stroller, that her tummy does in fact have a tube sticking out of it, that her body does move a little differently than others, that she makes constant noises that are not understandable, that her hands do most of her speaking for her, and that she makes very little eye contact. These are just a few of the things you would notice if you looked at her long enough. I never asked God to let her be beautiful, but He blessed her with that(and I'm not complaing
. I'm very grateful for it). Its that beauty that causes most strangers to stop and try to speak with her. Its in those moments that they begin to figure out somethings different.
So I left the parking lot in tears today with our little girl and as the tears flowed down my cheeks and I drove back toward home I thought to myself, "If only they could try to understand" and then I thanked God that they didn't.
Its been a tough day. Dave's been gone since Wednesday morning, Blake's in Arkansas, and we have no grandmother's available to lend a hand. Its been me and the girls figuring life out on our own and its not always easy to do that. I'm trying to model the right attitude in front of Allison by keeping my emotions in check, but the grocery store experience brought it all crashing down around me. Life is tough and sometimes getting through even the everyday experiences like grocery shopping can prove to be more than I have figured out how to handle with Ash in tow. Not complaining. TRUST me, I'd rather be doing it with her than without. Just venting in hopes that I'll feel better when I stand up from here.
I think I'll go roll around on the rug with Ash for a while before I put up the groceries. The lettuce can wait.