In nine days, Noah will be 18 months old. He’s tall and lanky, with a cowlick on the back of his head that makes his hair stand up like a British rock star. His feet are huge, and we’re certain he has my brother’s random tall gene, which means he’ll be taller than his Daddy, making the teenage years all the more interesting. Because of the damage to his vision, he tilts his head and moves it side to side to catch a better view at something – or maybe to see how light changes what he’s looking at – and every time he does this he reminds me of Stevie Wonder. It’s such a quirky quality that makes him different from everyone around him. It’s also a reminder of how he’s been forced to adjust after life threw him a curveball at four and a half months old. I worry that when Noah’s old enough, children in school will make fun of him because of how he’s different. Children don’t see quirky. They see weird. Different isn’t something they cherish. It’s something they condemn.
Because our house is outfitted with a bright tent, a blue tunnel that Noah can crawl through, rice and ball pits for sensory stimulation, and many, many toys, Noah isn’t often immersed in an environment with children. We tried Gymboree; in fact I wasted more than $300 on membership fees and we missed all the classes. Therapy sessions, drug reactions, seizures, and naps all made it impossible to attend the classes full of children, climbing and songs. It took me months to cancel the membership because I hated to admit that something so normal was too hard to fit into our life. I wanted that normalcy for Noah. Now, in conjunction with the therapists who come to our house to work with Noah, we spend hours working with him ourselves. We sit him in the tent with a little table over his legs and work with him on focusing and fine-motor skills. The other day I clapped so hard my hands hurt, all because Noah pulled a toy out of a small bucket and then he put it back in. We’d been working on that for months. He had no idea why I was so excited. After all, he’d only dropped a toy in a silly plastic bucket. What’s the big deal, Mom?!
When, on occasion, we get Noah together with the children who are his age, I am instantly aware of how different Noah is. His Stevie Wonder habit, how he walks or runs with his head down, how he never points to our cat and jabbers, all of those quirks are highlighted. First I feel sad that Noah is different. Then I feel guilty for being sad – because Noah doesn’t deserve that. As his Mom, I can’t be sad about who he is. He’s my angel, he’s everything. And so, no matter where I am when these emotions pummel me, I walk to Noah, pick him up, and hold him as tight as I can. Eventually he’ll push his slender arms against me, almost as though he’s saying, “Mom, don’t bug me!” And he’ll go back to pulling on a string or shaking a ball. My friends know, I think, when I’m feeling this way. You can almost sense their need to make things better for me. But they know they can’t – and so they pretend my boy is like theirs, and we talk about little things. It’s hard on all of us. But I appreciate that my friends haven’t given up on me, despite the fact that I sometimes find it more comforting to stay in our living room with my boys, away from the rest of the world that reminds me of how different we are.
When I was young I was skinny, very, very skinny. As a ten-year-old, twenty years ago, the girls weren’t envious of my metabolism; the boys didn’t think I was cuter or more charming because I was skin and bones. No. I was only different. There was no room for different in elementary school. Kids hurled hurtful words me. Eventually though, I was tougher, hardened with scar tissue. It helped me in the later years when, even though I was made fun of because I was still “different,” I managed to find confidence. I found strength in myself. Without that inner fortitude, who knows how I would handle our life now. Maybe, from the early years of my childhood, I was in training to be Noah’s mom.
What amazes me is that in spite of everything Noah is fighting against right now – continued daily seizures and a new anti-seizure med that has temporarily taken away his ability to walk – he is still breaking down barriers to thrive. Maybe that’s what really makes Noah different. He doesn’t know defeat.
Yesterday, while Noah was finishing his dinner, his father and grandparents hovering over him with giant grins of adoration, I was in the kitchen making our dinner (way less fat than Noah’s Modified Atkins Diet for seizure control). As I whisked our cheese sauce I heard Noah say, “Ma Ma.” It was as clear as could be, with a deliberate “mmmm” sound, and a final smacking of the lips. I dropped the fork and raised my head. When I walked into the family room a second later, Noah’s grandmother was lifting him from his highchair. He had chicken on his face and his hair was slicked back from the grease of the mayo, his cowlick gone wild, rocker style. “Did you hear that?” Mike asked. I nodded, smiling. It was all so clear then. Of course Noah is different. He’ll always be music to his Mama’s ears.
Way to go Noah! Erin, your boys are blessed to have you as their Ma Ma!
Keep up the great work! You’re making a difference in his life and in the lives of many others – more than you’ll ever know.
YEAH Good work Noah – Erin he must know when you and Mike need a lift. It’s like he’s saying “We’ll get there mum”!!
I hope the new meds settle down soon and his can be off and running again.
Still in our thoughts and prayers – hope little Avry is going well and you are all getting some sleep.
Love and hugs to our mate and his little brother.
Sally
Bris. Australia
I’ve been following your story since you first posted and I’m so glad with how far Noah has come. After reading your post I wonder if you have ever read the poem Welcome to Holland, by Emily Perl Kingsley. Here’s a link to it. http://www.our-kids.org/Archives/Holland.html
My brother has a lot of issues that make him different. I remember my mom crying a lot. When he was young 40 years ago, they told my parents to put him in a home and forget him. He’s come a long way, and my mom always talked about this poem.
I hope it helps.
I am so sorry for what has happened to you and your family.
Only ten days after your son was shaken our son was shaken at an in-home day care. We spent the month of May 2009 in the hospital with our son. Months later, one of our therapists told us of your site. Our stories are so similar, and our struggles (to this day) that we couldn’t bear to read it. It hurt too much.
Unfortunately, while the woman who did this to our baby has been charged, we have yet to receive justice.
we were happy to hear you did get justice on your end (though, as with us, it will never, ever be enough).
if possible, my wife and I would love to chat with you and your husband. hopefully we can help one another with resources, etc.
we can be reached via the login here and wish you all the best.
I’ve been keeping tabs on Noah and your family since your first posting over a year ago. I continue to think of Noah often and you as well. When I read your posting from yesterday it made me think of a story I wrote while in high school. I’m now 40 so yes this goes back many years ago. At the time I was 15 years old and I have an autistic brother who is 14 months younger them me. Now realize we are talking about 25 years ago….at that time Autistic children were treated much differently and not as accepted as they are these days. I loved my brother very much and we were very close growing up but I will admit I was very embarrassed of him and his behavior because he was different. My Language class assignment at the time was to write a story about someone important in my life. I knew I had to write about Tom, my brother. I titled it “What is Normal”. The title alone pretty much told my story. Yes he is different, we are all different in our own ways and that is what makes us unique. I understand Tom is different, but to me he is normal. I know that doesn’t make much sense but the easiest way I can explain it is I couldn’t image my brother any other way or “normal” as everyone refers to. To me he is just Tom, my brother. I will admit every night faithfully I say a prayer at bedtime and the first thing I always say, even before I pray for my son and nieces & nephew is “God, please make my brother normal.” I’ve asked for the same prayer since as long as I can remember as a child. I don’t think I’ll ever stop asking for that and there I times I get frustrated at God because he hasn’t done anything about it. However I’ve come to also believe that maybe god has answered my prayers and I just have to accept Tom as “normal” but not in the sense I think he should be. Again I know what I am explaining seems confusing but I just thought it might help you. To not think of Noah as being different all the time, but think of him simply as Noah. And whatever he does this is Noah’s normal behavior. I continue to keep you and Noah in my thoughts and prayers. Happy 18 month Birthday Noah. I’m sure your little brother will love your and adore you as much as I have my younger brother. Sherry
Continuing to pray for Noah and your family. If you want to, or feel you need to, you can always homeschool your boys. Homeschooled children are often more accepting of those who are different. After all, they are different themselves.
I don’t know if it helps, but I relate so much with your last post. I look at Devan everyday and think to myself, what a miracle she is! I shower her with kisses all the time just to feel her warm little cheeks!
Sometimes I also get caught up in her inabilities, but often it’s Devan herself that snaps me out of it. It’s almost as if she says, “See mommy I can do it, I just needed to do it in my own special way.”
I know it doesn’t need to be said that Noah is such a blessing….you guys live that blessing everyday! Just know that so many people continue to pray for him and your family, and rejoice in all his accomplishments!
Noah is so lucky to have such a great mom. The end of your post definitely got me teary with the “Mama, mmm” So sweet! Sounds like he’s doing great. Continued prayers, especially with the new med. Bless you all!
How lucky he is to have a mom like you…who takes the time to realize his differences are what make him so special.
God will be so much more real to you because of Noah, each little tiny milestone will mean much more to you and each moment will be so much more cherished..I know many who would not look on these things as blessings, but you are an inspiration who has chosen to be blessed and not wallow in dispair! Blessing and prayers to you and yours! 