A Ride on the Morning Train-Post By Bill

 


 
     The train gives you time to think…when people say “how are you” I usually say “Great! Or Good!” I rarely say what I want to say, that I’m tired, exhausted, because those words are just used too much these days by people.  When I say I’m tired or exhausted its because there is rarely a time in the day in the last 4 years that Sophie isn’t on my mind, that I worry about her, of course I worry about Emily but I know she is “normal” or what we are supposed to say now “Typical”,  she can defend herself, she can make right and wrong decisions, she is an AMAZING young lady and I’m so very proud of her.  For Sophie I worry, will people take advantage of her, will people hurt her, are we doing enough? Is she getting the support she needs? The Doctors? Are the meds she’s on helping her? Hurting her? Maybe if I made more money I could get better Doctors? Better care? Then I start to doubt myself, feel like a bad father, husband, sometimes I feel like I don’t want to go home, it’s too loud, it’s too “crazy”…I think and think and it starts to wear on you, not just emotionally but physically, it gets harder to get up, you get 6, 8, 10 hours sleep and it feels like it’s not enough…worry…worry in your sleep…who will take care of her when I gone? Will she have a “normal” life? Get married? Have kids? Just wondering will she ever really understand or know what “love” is? To love someone else? How will she make it in life? She’s 14 and has no concept of money, of time, what’s real on TV and real in life, will other people make fun of her? Does she feel bad? I don’t know and for all the worrying I do I think of what must be going through her little mind, must be 1000 times more, no wonder she’s out at 8pm.  Man I love that little face, last night as she slept I snuck in and just stared at her, she was so quiet, so peaceful, it made me smile….worry.  You start to shut down, you avoid things, you lose interest in activities you once LOVED…yes hockey.  People think of you of as the “funny guy” …things aren’t so funny to you anymore. “date night” was fun, you’d go out see a movie have some dinner meet with friends…now some take out and quiet time (because quiet time is special, its rare in our house)… and bed by 8:30 is what it turns out to be…Tired, exhausted, those words bring on a new meaning…you avoid social events, friends, public places, “it’s easier if we don’t go, let’s just stay home we don’t want to explain, or get stared at” EVERYTHING is a struggle. You go out with friends and their “typical” kids, you see the difference and it breaks your heart, makes me sad sometimes (bullshit all the time) sometimes the other kids are younger and you see how much more developed they are…..thinking, worrying….. then you think why would God do this? Make your child, make ANY child like this, make it hard on families, make the problems, strain on finances pull a family apart? Then you hear “God picked you guys because he knew you could handle it” bull shit, I can’t…….you start thinking there is no God…you lose faith, ok lost faith…thinking, worrying…man I’m tired, sleep sounds good…I wake up each morning and look in the mirror, more gray, more wrinkles, bags under my eyes…”man do I look even older?” is this aging me faster than normal?  “hey let’s get some beers after work”…you make up excuses not to go…just too tired…exhausted…worry…but hey how are you today? J Have a great day all!!!! And oh yea GO KINGS GO!!!

Feelings- Our Day at The Library- Post By Aimee

    

Feelings seem to happen when you least expect them. You are going along, having a life, living each day and then BAM! Feelings hit you right smack in the face. Some are happy like the way your stomach drops and makes you laugh when you hit a dip in the road and some are just downright confusing and hard to comprehend.

The hard to comprehend type is what happened to me today.  I had planned on taking Sophie to the beach today but it was gray and breezy out so I let her sleep in and then suggested a trip to the library. She’s not been much of a reader but I know she likes to look at books and thought maybe I could find something to spark an interest. The first hurdle I hit was that my child doesn’t really understand what a library is.  She knows there are books there but that’s about it. Where are the comics? She asked. How about parrots? Are there books about parrots? I want to see the picture books. Is this for babies? Will they let me in? How about comics? What about parrots? Why do I have to be quiet? This went on and on as we walked up and down the aisles searching for something.  Finally by the computers she saw some comic-type books. This was good it made her very happy and she eyed those for awhile. Then she becomes obsessed with the “wimpy kid” books. Fair enough they are nearby on a spinning rack. I sit down beside her to let her take her time.  After she had picked out three books I asked her to walk with me while I look in the “grown up” section.

We turned the corner and I see a familiar face, the gentle, kind face of a woman whose daughter attended kindergarten with Sophie.  She smiles and warmly greets us. Comments on how tall Sophie is and then asks if she is ready for High School. At this point my heart breaks a little. My girl standing there hopping from foot to foot with some second grade reading material in her hands. “Oh-no, not yet” I say and quickly ask about her kids. One just about to leave for college and one about to start High School.  Am I jealous? Do I feel like I had lost at that mommy competition game? No, I think I am just struck with the huge gap between “normal” and my sweet girl. It’s easier to stay in my little community of Special needs moms. We all get each other. We can laugh at our kid’s quirks and stims, we can groan at the same toddler type meltdowns transpiring in large adolescent bodies and we can cry with joy at little victories like our kids ordering their own dinner.  This poor woman doesn’t know what to say other than “wow, she sure is tall”

As I write this the feelings are still swirling around me. I am happy we went on an outing. I am glad she found some books. I am relieved she doesn’t scream that she can’t find something and we were on our way out. Then I am Sad. So very sad at how far behind she is. So sad that that this group of moms and (their normal) kids have surpassed us. I am confused. Confused because I thought we were having a good day.

As we walked to the car I took a deep breath and asked Sophie if she would like to get Frozen Yogurt before lunch. She laughs and yells YES! We get into the car and she opens a book about a young girl who is a mad scientist and she begins to read! She reads and reads and reads out loud to me.  We may have been left behind but this is something. I never thought I would hear my girl reading to me. Now I feel proud and grateful. I know we had a good day!