Dear Autism.

I freaking hate you.

I hate last night.  I hate the blindsiding meltdowns. I hate lifting him from off the floor where he fell asleep, tears stained on his cheeks.  I hate punishing him for something wrong he has done, because I can’t tell if it’s his Autism or blatant disobedience.

I hate that everyone knows me, not for Becky, but for “the mom with the Autistic kid”.  And that isn't his fault. I hate that Rowen is known for having Autism, and not for his amazing forgiveness.  Or for his kind words and giant hugs when he sees his mother crying.   I hate that no one sees his huge heart- instead they see a clumsy, unfiltered five year old boy.

I hate the fact that you are his constant companion.  He doesn’t get a break from you.  The good thing is there are times he forgets you are there, when he is extra happy or concentrating on a task.  But those are rare moments.  Sometimes I forget about you, too, but it doesn’t last long.  You never take vacations, do you?

Autism, you make waking up in the morning really, really hard sometimes.  You make falling asleep at night really, really hard.  Even when I close my eyes to rest, you are there in my dreams.  You never go away; not completely anyway.  And I am tasked with the job to make sure my son succeeds with you.  Do you want him to succeed?  Are you here to make sure he doesn’t?  Who and what are you really?  Sometimes I think if I knew you better, then I’d know my son better.  But you are two different entities, and I feel like I am constantly in a battle to keep you off his back.

I don’t appreciate you.  I don’t enjoy you.  It is days like this I wish you did not exist.  My eyes are swollen and I’m tired, and Rowen is barely making it through the day because of yesterday.   Yesterday we had “a bad day”.  That is what we call it.  A day when everything seems to go wrong and his little emotions get the best of him.  And the next morning we are left tired and sad and edgy.   

I hate bad days.  He hates them, too.  He understands.  He knows.  He asks me how many meltdowns he had that day and I’ll be honest with him.  Then, at the end of the night he asks me if we are going to have a better day tomorrow.  I encourage him and excitedly tell him we are.  I can feel the determination in me when I say it out loud, and I see the hope in his eyes as he smiles and pulls me in for a tight hug.
And in that moment I’m not thinking of all the things he did wrong that day that drove us to having a bad day.  I’m thinking of all the things I did wrong.  And the things I didn’t do.  I go over in my mind all the mistakes I made and how I should have been easier on him.  Because he is not like other kids.  He has a special companion with him who doesn’t give him a break.  A companion who will forever be the thorn in his side.  And even I, the wonder woman he truly thinks I am, cannot get rid of you.  And I hate you for it, Autism.

So I tuck him in, tell him goodnight, and remind him to stay in bed.  As I descend downstairs for some quiet time I know it is just a matter of minutes before I hear his little feet tiptoeing down the stairs, coming to find me for one last hug.  I tell myself not to be mad and usher him back to his room.

Then I say a prayer that tomorrow won’t be “a bad day”.  
Andrew
6/10/2017 11:40:30 pm

I love you Becca. I really honestly do. You have ALWAYS for some reason just struck a chord in me with how deeply and sincerely you love. I'm sure you don't remember but, when we were younger, going to institute, and having sleepovers all the time ( Labyrinth and 16 candles anyone? ^_^ ) we would talk about if we were ever going to get married and have kids. One time you came over, we sat on the couch, turned on "Linkin Park - Minutes to Midnight" and you layes your head on my lap and you started bawling. I didn't say anything for a few minutes just to make sure you knew that I was there for you and I was there to listen no matter what. When you called down a bit you stared talking about how lonely you were...about how no relationship you have ever works and that you don't understand why Heavenly Father wouldn't give you a family, that you didn't think it was much to ask, and that you sometimes wonder if he's even listening....but then you just stopped mid-sentence and said "You know what though Andrew? He IS listening to me, he really is. Sometimes I think that I'm being punished because of things I've done in my past, but I know it's just Satan trying to destroy me....Heavenly Father has a plan for us....I know it's going to be hard and for both of us Andrew, but it's going to be amazing and every single step of the way is going to be worth it because one day we will be in Heaven with our families after finishing this life and we will never gave to worry again...because we held to the rod and we endured to the end to receive our blessing of eternal life with our eternal families." I know it sounds really lame that I remember that ( I also remember you always laughing about my 3 legged dog named Cassie lol )but your testimony has always been so strong to me. Even when you don't see it yourself. Sweet Rowen saw you that day. He saw the tears fall down your cheeks and he knew that he would be with you soon and that things would be difficult, but he still chosee to come to earth and endure this life with Autism as one if his companions....but he knew he would have you as another one of his companions, as his Mother. He was strong and knew you guys could all do it together. Sorry to be super cheesy but you are an amazing, smart, STRONG, daughter of God. Please don't ever forget that. Love you Becca.

Reply
Mirranda
6/12/2017 02:00:39 pm

OMG I cried when I read this. I love you Becky and until recently I always thought "Autism? ... nah not a big deal." .... It is a big deal... Just sitting in your house quietly watching you is amazing. I don't know how you do it every. single. day. ALL DAY LONG! (and into the night) YOU. AMAZE. ME. Recently I got to see the "Real" Rowen come out. The Rowen that you say you have "bad days" with and Ill tell you what... You make me so proud to be your sister. I think that you are the strongest, most patient, loving, observant, smart, beautiful Mom ever!! I have had the best examples of how a mother should be from You (Mom and Shelly too). IT IS SO HARD!!! It breaks my heart!!! I love him to death and I love working with him. I love his smile the MOST!!! His smile with his twinkly eyes and loooong eyelashes!! MELT ME!!!!! You have made a beautiful little boy that is SO LUCKY to have you as a mommy!!! Thanks for everything that you do. I appreciate you. I appreciate all the messes you clean and all the tears you wipe and all the smiles you create. I know that Those bad days make you feel sad, or small, or heartbroken and tired. But... Those babies love you so much. ... they would be NOTHING WITH OUT YOU AND DAN!!! You save them every day, I cannot tell you enough that you are so amazing and I know its hard but you I feel like to can do anything ... you are like SUPER WOMAN!!!!!!! Your Rowans Super Hero!!!.... mine too ;)

Reply



Leave a Reply.