Different Is Interesting

Different-Is-Interesting

Image via Shutterstock

Quirky I guess is what you’d call him.

When he was 1, he got attached to these puffy snow boots. Wore them straight through 2009. Even during summer, with shorts. No socks.

Smelliest 1-year-old baby feet I’ve encountered in life. Made my ears burn they were so bad.

He transitioned from those into a pair of fireman rain boots one of our neighbors gave him.

He was always so proud of his preparedness when it rained. He got to do a ridiculous amount of puddle jumping between the ages of 2 and 3.

All of his quirks didn’t manifest themselves fashionably. He had others, too.

I remember, once, I opened the toy box and it was almost empty. Like I could see the bottom due to lack of toys. It took me days to realize he had packed all of his things into various backpacks. Which he labored to carry everywhere with him. Even falling asleep on the floor with them strapped to his back.

He still appreciates an artfully packed bag.

When he got sick, his quirks sort of became ingrained into his being.

Like all of the kinda cute little things he used to do took over in his mind and became not-so-cute, frustrating tasks he needed to complete.

That’s sort of what OCD is like when you’re little.

You have all of these things your brain is telling you to do and they’re in there, no matter how much you try to ignore them, nudging, insisting, then pounding on your insides to break out. And then they do and you feel better, but kinda worse because OMG DID ANYONE SEE THAT? I REALLY HOPE NO ONE SAW THAT. WHAT IF THEY MAKE FUN OF ME?!

His OCD is exasperated by a tic disorder which means he performs a lot of movements (everything from eye blinks to limping) or sounds (he’s done throat clearing and humming) repetitively.

When it’s really overwhelming, he worries more about people noticing.

Because while he likes being different-good, he doesn’t want to be different-bad. And he knows that people make that distinction.

Recently, he’s gotten better about living with his disorder (I hate that word, because it sounds like a bad thing, and while sometimes it is, it is also just a part of this person I love). He can control it better, he can manage it more effectively, he can accept what it is and that it’s a part of his life. His ability to do this (thanks to his weekly visits to his cognitive behavior therapist this summer and more life changes than you can count on all of your appendages), makes it less pervasive, which in turn makes it again even easier for him to mange.

It’s a vicious and beautiful circle that I wish he wasn’t in, but also love being a part of.

We still have hard days weeks months, but we also have amazing ones. Ones where I feel that even as I wish his life were easier, I also love who he has become. Ones where I realize that his different is the kind of different we should all want to be.

He worries more about things other kids don’t even think about, like death, and old age, and the world, and its problems. He’s more accepting of things others question. He’s more open with his affection. And he lacks a filter that makes him honest, but also endearing.

Last week he started second grade.

On the second day of school he came down with his shirt on inside out and backwards, sparking a brief discussion…

Me: Oh, so you’re doing that? I didn’t realize it was a school thing, too. (He had been wearing them thusly all summer long.)

Him: Yeah, I like it this way.

Me: You know you will get a lot of questions, right?

Him: Maybe, but I think it will be fine.

When he got home, he had his shirt changed—still inside out, but not also backwards…

Me: Oh, you changed?

Him: I got tired of being questioned. Everyone thought I was confused, but really, it was them.

And he’s right.

He gets himself, it’s everyone else that can’t keep up.

He’s used to being the kink in the hose, the wrench in the plan, the *insert random other sayings used to describe the person who breaks the mold and bucks the status quo here*.

And his difference is both confusing and intriguing to those around him. He has a large personality accented by all of these special quirks that make him interesting and attractive and unique and even cool.

Which brings me to the socks.

They never match and they really never have other than when he was a baby. And for a brief period in kindergarten when I wanted to be in control of something at a time when all of my children were leaving my nest.

He used to actually unfold all of the matching pairs I made and select two non-matching ones. When I realized I didn’t need to bother with folding any longer, he would go into the laundry and just pick any two socks out, no regard for color, shape, or even owner, and put them on his feet. Recently, he’s gotten more intentional—at least one must be tall; patterned or brightly colored are best; and never, ever white, those are boring.

It has become such a thing that other moms have come up to me and thanked me for lightening their laundry load since, now that their sons won’t wear matching socks anymore, they don’t need to worry about folding socks.

You’re welcome. But don’t thank me. It’s all him, totally.

In fact, even I have been baffled by it. So, I asked…

Me: So, what’s the deal with the socks?

Him: They don’t match.

Me: Well, I know that. But why?

Him: Because everything in life doesn’t need to be exactly perfect. It’s ok for things to be different. Because different is interesting and I want an interesting life. Plus, I can never find the matches anyway.

And then I cried.

All of the tears. Pouring from my eyes.

Because I am lucky to have this soul in my life.

I don’t know why he came to me, but I feel afraid and excited and anxious and overjoyed all at once.

I asked him about this too…

Me: I am so happy you chose me for your Mommy.

Him: I didn’t. God sent me because He knew we’d be good together.

Can’t argue with that.

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Special Needs Parenting: Higher Highs, Lower Lows

Special-Needs-Parenting--Higher-Highs,-Lower-Lows

Image via Shutterstock

I read time and time again about the “gifts of autism.” Maybe it’s because my son is on a different end of the spectrum, maybe I’m a pessimist, but I have seldom used that phrase in our house. I don’t doubt my kid has gifts that are related to his autism, but for us, autism is not a gift. It presents another obstacle everyday and we work hard to help him overcome those obstacles.

While I would never classify autism as a gift, I can’t say that it hasn’t given me perspective. Am I saying I am thankful my son goes through everything he does so that I may come out the other side enlightened? No, absolutely not. I would not wish his challenges on anyone for any reason. I just wouldn’t. For me, autism is not a blessing, autism is not a curse, it just is what it is.

I would argue that we experience higher highs and lower lows as parents of children on the spectrum (or any special needs children, for that matter). I can’t really describe to you the feeling when a four-and-a-half-year-old uses a spoon efficiently for the first time. Remember how excited you were when your one year old used a spoon? Now imagine how much more intense that excitement would be if you had waited four times that long to see it happen. Not only had you waited, but you had worked and your child had worked tirelessly to make it happen. We worked with an occupational therapist to try to teach the coordination it takes to scoop up food and get it into his mouth without spilling it everywhere. We practiced at most meals even though he preferred finger foods. He often would not stabilize the bowl, he would get frustrated when the bowl would push around on the table, and as he would raise the spoon to his mouth he would always flip it and lose most of it. Then, if any of it got on him, he would have a full-out meltdown about something messy or wet touching his skin, or even his clothes. I’m not going to lie, my heart soars every time I watch him eat independently, something I honestly took for granted with our oldest.

After so many hours of speech therapy and so much effort at home, listening to him form a sentence is almost magical. There were so many times when he didn’t have the words. There have been so many heartbreaking instances when I would look into his eyes and feel like he is trapped inside himself. Hearing him convey his fears, express his needs, voice his feelings—in those moments I couldn’t be more proud of something so many take for granted.

When we have a successful outing (even a 30 minute trip to the grocery store) I feel like I have just run—and won—a marathon. Do you know why I post about those good trips, why I sing my son’s praises that he was able to handle the lights, the noise, the transitions? Because we had so many trips that ended with me in the car in tears. There were so many half-full shopping carts that were left in the aisles because I just couldn’t stand the judgmental stares anymore. So many trips resulted in entire days of trying to bring him down from the sensory overload. His tears, my tears, so many tears. So when we have an outing that doesn’t result in tears, you’re damn right I’m going to celebrate!

And the nights…I can’t really describe how hopeless I have been during the bad nights. Not just nights when he was up and talking and I wanted to sleep. Not just the exhaustion. But so many nights we had meltdowns, screaming, self injurious behaviors, and times when he would go after me. He wasn’t asleep, he wasn’t awake, he was short-circuiting and could not make sense of all his body was going through. On those nights that seemed to last forever, I have never felt more alone. But now, even though he never sleeps through the night, he gets up once and usually goes back to sleep within an hour without incident. That might not sound like a good night to you, but I cannot even express how grateful I am for 6 hours of sleep and a night without him going through the trauma he used to.

Higher highs and lower lowers apply to our view of the future, too. After receiving the diagnosis and the prognosis, I mourned for the life he will not have. I don’t know that he will ever play a sport, live on his own, go to college, have a family, or have a job. That is a heavy realization to have, one that continues to weigh on us everyday. But even in that mourning, there are glimpses of hope. With every little bit of progress with language, with every new skill mastered, with every academic achievement, my heart smiles and I am so hopeful for the progress that lies ahead. But, frankly, having witnessed him so fearful, so miserable, so pained, simply seeing him happy on the good days is enough to bring me unmatched joy. I know, with a lot of hard work and resilience, the rest will fall into place and we’ll be okay. Even if that okay looks different than I thought it would.

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Parenting Is About Today

sweet-iris-cover-photo

©Christie Waggoner

She was bent over in excruciating pain, one hand under her belly, the other hand steadying her body against the wall. I was flat on my back being wheeled out of the operating room after an emergency C-section. For a single moment, by rare coincidence, my colleague and I shared the same hospital hallway. In a flash she was gone. I was whisked away to recovery, and Christine was left gripping the hallway handrails, enduring the pains of labor.

Our daughters were born hours apart. We experienced those first blissful days of motherhood a few doors away from each other, sharing a hallway and a bond with our daughters. We held them, fell in love with them, and dreamed about their futures, never imagining one life would potentially be cut short.

I never thought about that hallway encounter again until a few months ago, when Christine shared a video on Facebook. Beautiful images of her smiling daughter, Iris, filled the screen on my laptop. Then text began to float over the images.

Degenerative. Fatal. No Cure.

sweet-iris-body-image

©Christine Waggoner

Seven years after we shared a hospital hallway, and a few months after her devastating post on social media, we’re driving to lunch on my invitation. Almost immediately, a date quietly slips off her tongue, August 26, 2013. I almost miss it, and then I realize this date is important. This is the day Iris was diagnosed.

On August 26, 2013, Christine and her husband Doug learned that 5-year-old Iris has a terminal degenerative neurological condition called juvenile GM1 gangliosidosis. There is no treatment. There is no cure. They were completely blindsided. Despite troubles with Iris’s speech and motor skills, they were told her development was normal.

As we’re waiting in line to enter the restaurant, I start chatting about my own 7-year-old daughter. After rambling for a few minutes, I stop myself and say, “Well, you know how it is with 7-year-old girls.” Without hesitation, she says, “Actually, I don’t. Think of Iris as a 4-year-old. She doesn’t really have friendships in the way other children do. She doesn’t have playdates. We were at a birthday party recently with other 7-year-old girls, and they were all very nice, but she couldn’t keep up. It’s more like they are taking care of her instead of being her peers.” And then it sinks in.

Juvenile GM1 is a slow, progressive disease that destroys nerve cells in the brain and spinal cord. Christine uses the words “inhumane” and “cruel” to describe the progression. She tells me they hope Iris will live many more years, perhaps even into her teens or 20s, but they don’t know how well her quality of life will be maintained. She explains that juvenile cases start getting pretty extreme by age 9 or 10, and many of the affected children lose the ability to speak, to swallow, and to move their limbs. Some become blind and deaf. The list of possible complications is frightening and extremely long.

Christine remains composed throughout our conversation. She speaks with great intelligence, understanding and compassion. It’s only as we exit the restaurant and head for my car that I see a glimpse of vulnerability. She asks, more to herself than to me, “What am I going to say if this ends tragically? I think about what I may have to post on Facebook. Right now, I keep everything so positive.”

©Christine Waggoner

What Christine posts on social media is important. It led to the development of a foundation that she and her husband started after the reality of Iris’s diagnosis sank in. “In the beginning at least one of us was crying daily. Anyone will tell you, it ruins you for a few months. Doug didn’t want to tell anybody. He was afraid someone would tell Iris or her younger brother (who does not have the disease) that GM1 is fatal. Then you start to process, and you start researching as a way of dealing. My way was to organize information and be proactive about the services and benefits we could get for her.” What they also did was start fundraising to provide money for medical research and find a cure.

In the past seven months, Christine and Doug have raised an astounding $485,000 for their nonprofit, the Cure GM1 Foundation. Their goal is to raise $1 million. The gene therapists and scientists funded by the foundation are working toward a clinical trial in 2017. The therapy being developed could potentially cure children in a single treatment.

For Iris, it’s a race against the clock. She takes experimental meds and follows a special diet to slow the progression of the disease. If the meds work and they’re lucky, they will be on the cusp of when the clinical trials hit.

I ask her if she has hope for Iris. She pauses briefly and says, “My hope is measured. We know the odds. We try to stay optimistic because it’s a nicer way to live. We don’t know how much time we have left, so we live day to day and focus on the small things like smiles, cuddling, dancing with her.”

I want to tell her she is a hero, that what she has done for Iris and the rare disease community is nothing short of remarkable. I want to tell her that I don’t know how she does it, and that if I were in the same situation, I would fall apart. But I know what she would say—if she didn’t get mad at me first. She would tell me that she is no hero, and that if I found myself in similar circumstances, I would do exactly the same as she has done, as most parents would do.

So what I will say is this: Christine, you are a really great mom. You’re a reminder that the very best part of parenting is about today. For all parents, that’s all we can ever be sure of.

For more information, or to make a donation, please visit www.sweetiris.org or www.curegm1.org.

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