I can feel myself starting to wrap up this month already. I'm ready to close the book on April and start a new chapter for May... Lots of things coming up. Meetings galore for Vicki's school. More doctors appointments to go to and more labs to be drawn.. crossing our fingers that IVIG is in Vicki's future. We have Ally's First Communion next weekend with family coming down to celebrate and pray with us. Then it's Vicki's birthday, and the day after that Joey's birthday, laser tag and sleepovers. Throw in Mother's Day. Add a few more birthdays to go with that... some graduations of some very special people in our lives. A few cups of soccer, scout events, dance, gymnastics, field trips, my husband out of town for a week for work... gotta fit in a pedicure so Vicki will be happy! (didn't have time the other day...) lots of baking- to Vicki's delight. And add some yard work, deck resurfacing, painting in the master bath and ordering our kitchen countertop. That should about do it. I'm sure there will be a few little surprises along the way. It wouldn't be a good book if there weren't twists and turns and bumps in the road. Hmmmm..... Maybe I don't want to close the book on April yet... just doing that little looksy into May kind of just made me tired and freaked me out a little bit.
I'm sure I've told you before that the first of the month is one of our 12 favorite days of the year. :) There is something about a clean calendar. Vicki loves it too... it's all fresh and open and just stretched out there daring you to jump in and fill it up. As long as I am armed with white-out, I'm good to go. Can't let May get too messy! I'm hoping we get some answers in May. I'm usually pretty good at writing about everything that is happening in our lives when I do this blog for the month. I try really hard to give you a front row seat. But I've kept a lot inside this month...partly by choice and partly because I feel like I have to. At least for right now... I really don't mean to be so vague, but I will say this... If you could say a little prayer this week for Vicki, for mommy and for daddy, and for all those that work with Vicki and love Vicki. Like I said before, autism sucks. There is so much that goes on below the surface and behind the scenes. I've tried to give you a quick little tour... but it's almost like... I was thinking... those backstage tours at Disney? I've never taken one before.. And I'm not sure I would really want to. I liked experiencing the magic of Disney. I don't want to know what it takes to give me that magic. All of the work and planning and coordinating. I just want it to happen. I don't want to know how it happens. It's probably pretty overwhelming. You know what I mean?
I've gotten so many fantastic notes and emails and texts and calls and letters from so many of you this month. It's truly been an amazing experience for me. For you to allow me into your lives and for you to care so much about ours... what a gift you have given me. And there is something in every single note that pulls on my heartstrings. And makes me think. And makes me appreciate. So thank YOU for making me dig deeper, making me feel more, and allowing me to share with you feelings that I didn't even know I had. I had a conversation with someone extremely close and important to me a few weeks ago and it really made me sit down and question my feelings about autism. And here's what I came up with...
I wonder what would happen if....
my husband and I took Vicki to one of her many doctors and they put her on a new medication, like they sometimes do... We discuss the medication and the side effects and what we hope this medication will accomplish. And I would be lying to you if I told you that I didn't still hold out some sliver of hope for each one of these new meds... Hope that it will be our Vicki that is that story or video that circulates around facebook and gets shared a gazillion times because it makes you feel good. Hope that this new medicine will be the one that turns the key and opens the door in Vicki's mind... and then all of that knowledge and all of that brilliance and all of those words just start pouring out of her. And she's cured of autism. Those kinds of stories, to me at least, are so hard for me to read and watch and think about. I remember when Vicki was 4 or 5 and we were at a very important developmental pediatrician's office who was looked upon very highly in the field of autism. We sat in her office and she was typing away at her computer; she showed us graphs and numbers and I felt like I was sitting in an infomercial. 'These kids' respond this way to my treatment. One day I gave this kid a shot of .... and two minutes later he was speaking full sentences. It is so hard to fill your heart with that and then think, well... why not my kid? You gave my kid that shot...Why isn't she talking a mile a minute right now? Why didn't she 'recover' from autism? We gave you money. Money out of our pockets. Not money from our insurance. Money from our future. Please, please, please... just let us be one of those stories.
I know Vicki wouldn't be who she is today if she didn't have autism. I know that some of the very things that I love about her are because of autism. And I know that her personality would be completely different if she didn't have autism. And I know that I would be completely different if I didn't know autism.
I'll use the analogy of Vicki's autism with Joey's asthma. Because they are both medical conditions that can wreck havoc on the body and the mind. Do I wish Joey didn't have asthma so that portions of his life could be easier? Absolutely! So, if someone were to give me a pill that would make autism disappear for good, would I give it to Vicki? Absolutely! Would Vicki be the same? No. BUT... there are so many things that autism has stolen from Vicki, from me, from our whole family... I know that Vicki doesn't even know what could be... or what she is missing, or for that matter what she is beautifully oblivious to. Or does she know? Is Vicki lucky?
I think Vicki is beautiful and I love and accept EVERY little thing about her. I do. With every fiber of my being. And there are sooo many things that have made an impression on my soul that are directly because of autism. And in a strange way, I am grateful for that. I don't want to change who Vicki is. I embrace every knee slap. Every fruit adoration. Every.... but could I do without worrying for 11 years and probably many more about potty training and cleaning up poop that I would never wish on anyone. And safety issues and behavioral tantrums and worrying about what will happen to Vicki when I die. I could live with out that. I hate autism for that. I hate autism for the sadness that I have seen in her eyes that I will never forget. But on the flip side, I see a gleam in her eyes and the unabashed joy for life that Vicki has that could possibly be a direct result of autism. I embrace autism because I have to . I embrace Vicki because I want to.
So that's about it tonight. I don't know what I just wrote. But I do know that today was a good day. I guess I should write some more 'feel good' posts... Because today I felt good. Vicki felt good. She was happy. I was happy. It was good. Maybe I should post a video to you tube. I wish I had made one of today. So you could watch her fold her hands and pray this morning. So you could see her smile when she did her inspection of the fridge today. So you could see her laugh and laugh and laugh while watching Gnomeo and Juliet. So you could see her make a jelly and baloney and cheese sandwich with the play food and then pretend to eat it. So you could see her put a princess puzzle together today with Ally. So you could have seen her face when she saw Joey home this morning. So you could have seen and heard her when we painted an egg carton flower wreath. It was so beautiful and amazing. So you could see her say, 'mommy feet' and smile at the mere sight of my feet. Ahhhh there are so many things I would have pushed the play button for today. And a few that I would delete as well. I would delete the part when I had to change her sheets again this morning. And the part where she just sat and stared off into space. And the part where she had a poop accident. And the part where super mommy comes to rescue to unclog the toilet again.
So, I guess there are parts of everybody's day that you wish you could (1.) Record and share with the world and (2.) Press delete and hold the rewind button down for.
Sorry. I am rambling on a lot tonight. Probably because I know I have to do some research tonight after I am done writing, that I just don't want to do or think about. Or it could just be that my brain had lot to be dumped out tonight. Sorry for clogging your time up! Ha ha... Poor excuse for a joke at one the morning. I think I'm hilarious right now, but when I re-read this tomorrow morning... more than likely, not so hilarious. :) Thanks again, as always, for listening and reading and reading and reading....
xoxo
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