Saturday, June 20, 2009

Reality

Have you ever been doing something, and all of the sudden realized.....this is my reality.....this is my day to day? That just happened to me. I recently created myself a new personal e-mail account, but I still have my old one; so from time to time....I go to check it. As I was checking it this morning and reading about the ATAA (Autism Treatment Accelerated Act) which is fighting for insurance coverage for people with autism, I found myself thinking.....my son has autism!!! Now it's not like I was stunned by this or just now realized that, since I've known it for approximately 6 1/2 years; but sometimes I step back.....take in the scene around me and think....this is my reality! Actually I find myself doing that often when I'm watching my children playing, singing, sleeping or basically anything where I am truly observing.....I find myself thinking....WOW, I am their mother.....it's hard to believe they ever fit in my belly! I get overwhelmed by the gratitude I feel to God for blessing me with my children. For some reason this morning, I was reading that e-mail.....and it just hit me.....my son has autism! Cal has been on my mind a lot, not that he isn't always, but lately he has been struggling; and I am pretty sure that it is just due to changes in his life. School has ended, he just began summer school, we are getting ready for VBS at church which takes a lot of my time right before it begins, one of his best friend's....his sister Addi....has been gone for a week, his life and routine have been changed! I will be the first to admit that he handles these changes so much better than he use to, but there is still always that uncertainty as to what he is going to do, how he is going to act, when will he meltdown, etc.
Drew and Bryna went to VBS all week at a church right down the street....it's not our home church, but it's a church where we have been involved in their preschool and their Upward program; so my whole family is familiar with it....even Cal. Last night was their big carnival/program, and the girls really wanted to go which would normally not be a problem: BUT NPayne was going to be gone fishing and not home to hang with the boy. I debated not taking the girls at all, because honestly if Cal meltsdown; it could be a true NIGHTMARE! What would I do if he had a meltdown (which includes screaming and crying), he is too big for me to carry out of anywhere any longer. How would I get them off the stage, I couldn't just leave them up there to figure it out....someone would call CPS on me, since they would assume I had abandoned my girls. I told him about the program, and he happily agreed that he would like to go"watch his sisters sing"; so off we went (Me, Drew, Bryna, Cal and Elliot). As soon as he realized that we weren't just dropping them off and heading back home, he began to get nervous.....he is OVERWHELMED by crowds, noise and anything that he is uncertain about. He started to meltdown, but I was able to talk him into sitting out in the lobby while the program was going on. Elliot and I sat out there with him, so we really didn't see Drew and Bryna perform; but they knew that was a probable possibility. The program lasted nearly an HOUR.....good night nurse.....after about 30 minutes, we weren't the only ones in the lobby, there were parents and little ones everywhere waiting for it to end and wondering as I was....WILL THIS EVER END???? As people began to come out, I noticed a few folks staring at my son who was continually and loudly counting backwards from 8-1. He was also doing sound effects which he is quite good at, but can also be a little quirky. Then of course there's the black hand towel....actually it's a cloth napkin but he calls it his "towel"....the he carries everywhere he goes, except school which I still haven't figured out.....he kept trying to put it on Elliot's head. As soon as it was over, I collected Drew and Bryna in the chaos and said that we were going to leave....there would be no carnival for us. It was crazy crowded and loud and completely on my last nerve.....see I'm not a fan of crowds, noise or waiting in any sort of line....much less in line for a juice box and bag of chips! The girls gave their tickets, that they had earned all week, to some other little girl. I could tell that they were a little disappointed....okay Bryna was initially really disappointed, but when we got into our car; I explained my reasoning.....We had already been there an hour waiting patiently (not really, but they didn't need to know that) for the program to end, and it was too crowded; and Elliot and Cal were hungry. Cal was not too excited about the uncertainty of the "carnival", and that is not his idea of a "carnival". I told them that we were having a little carnival, after our VBS, the following Friday; and we would definitely be going to that one. As I continued to explain and watch their faces in the rearview mirror, I saw Bryna's frown begin to lift as she understood my reasons. Then I looked at Drew's face, she had not said a word but had been listening intently.....to reasons she had heard hundreds of times before as far as Cal goes....she smiled brightly and said, "It's fine mama! I'm fine with not going to the carnival!" Then I sprung my "surprise" on them....we are headed to Sonic for some burgers and ice cream! They both then smiled and asked if we could sit outside to eat which we did. As we were driving to Sonic, I kept looking at their faces in the mirror; NPayne and I made a deal a long time ago....that our girls would not miss out on things, because Cal didn't want to participate. We have been able to stick to that about 95% of the time, but every now and then (like last night); they have to compromise. As I looked at their faces in the mirror and secretly wondered if they were holding a grudge, Drew's eyes met mine.....I think she could tell that I was concerned about their feelings. She looked right at me and said, "I would much rather be going to Sonic with my family than eating a hotdog at that crowded carnival!" The lump in my throat officially formed, and I fell madly in love with my little girl for the gazillionth time. She knew that night that Cal had done something completely outside of his comfort zone, so she could sing in that program. She knew that even though he didn't realize it....he had compromised for them too. I told them how much I appreciated them being so understanding. My girls have had to make sacrifices for their brother....they have been called out of class to help calm him at school, they have had to leave events early because he "couldn't take it anymore" as he will tell you, they have had to do things without one of their parents (usually their dad) so that parent could stay with Cal, they go to church every single Sunday and sit together with their mama but minus their dad and brother who sit in the narthex or cry room to watch the service on the screens.
As they get older, they realize the improvements Cal is making, the strides he is making, and that a few years ago....last night would have never happened....he would not have compromised and sat in the lobby for an hour while they sang....counting backwards from 8-1 and making sound effects! They are better people because of the love they have for their brother....they are not judgemental....they are caring....they are kind....they will sit right down with him and play with all of his Thomas the Trains....they will listen to him sing the theme song from "Blues Clues" and happily help him look for clues....they are proud of him when he willingly shares....they are excited when he will hug them....they are so willing to sacrifice. Do my girls get annoyed with their brother? Sure they do. Do they fight with their brother? Sure they do, they're siblings....they all get annoyed with each other and aruge from time to time.
This is not the way I had imagined it when I dreamed of being a mother, but it is all I have known and I am grateful for what I learn through my children.
Do I wish my son would be cured? Yes, I do. Am I grateful he has autism? No, I'm not; but I am grateful that he is able to communicate and that he doesn't have a terminal disease. Things could be much worse. What I do try to do is embrace the "good" that comes from this reality.....my reality, Cal's reality, my family's reality. I'm not always good at doing that, but I try. My girls are much better, as is NPayne, at doing that than I am. So this morning as I listen to my girls giggle and my boy sing the theme song from "Blues Clues", along with a little arguing here and there, I know that......this is my reality....this is their reality!

4 comments:

Gracie said...

Oft times, our reality isn't gum drops and lollipops but it is the plan God has for our lives. This post rang so true to me as I have found myself in the same place with Kylee's seizure disorder. I hate it so bad, yet I am so thankful it is not a terminal illness. What a special bond your girls have with Cal. Great Post. Have a great weekend, Friend =)

Jen said...

Yes, I definitely have those "this is my reality" moments...probably too many. It's sometimes hard to see my friends' families going here and there, doing this and that...with me thinking, "That should be us!" But, I do try to remind myself that I'm being very blessed in other ways, even if it does look like the others are having a really good time! :) I'm not saying you don't already know that, because I KNOW you do, just saying I understand the "reality."
You're family is so beautiful!

Following Him said...

I truly believe that you and NPayne were blessed w/Cal because HE knew you could handled and help Cal with his Autism. Cal is such a blessing and YES the girls may give up an event or two, but they do it (sometimes) becuse they know what Cal can and can not take.

No one wants any child to suffer or be blessed w/an illness. But you take on whatever is up and face it. Each one of your children are STRONG and unique in their own ways.

I have always wondered where Cal and NPayne were during the services and now I know.
~Elyse

whimzie said...

Since my dad was diagnosed with cancer in December my mom and I have talked a lot about our "new normal." I think we've had to mourn "what isn't" in order to accept what we can't change about "what is" but daily we choose to adjust and make the best of a situation that none of us would have chosen. But God chose this for us and knew we could handle it in His strength.

I teared up reading about the love your family obviously has for you. You could be mired in self-pity, but you do what you need to do. You make sure that ALL of your children are affirmed for who they are. And you're raising children who know how to have compassion and who understand that life isn't always about them. What a legacy you're creating for you family to continue long after any of us are on this earth. Just beautiful!