Tag Archives: Special Needs

Let’s start the New Year off with a scurry?

Friends,

I hope you had a wonderful holiday break. If your house is anything like ours, you are probably thrilled to be back at work, school, or in whatever routine normally shapes your life. There are lots of things to share with you, but I only have time for one quick update.

Let’s file this under: “Yes, that really happened, and I’m still having nightmares about it.”

A few days ago, I sat on the couch in our family room. This is my favorite room in our new house. It is a lovely, cozy room, not too big, not too small, and it has our TV and a fireplace, which are two of my favorite things. This room is also open to the kitchen, so I can sit on the couch and have my coffee while I’m still too tired to actually sit at the table and interact with the rest of the family in the morning. We all like it this way.

I was sitting on the couch, reading (an impulse library choice, Crazy Rich Asians, which is a fairly amusing, if kind of pulpy, novel that was popular a year or so ago), when I heard a soft “plop” in the fireplace. Mr. Fly built a fire the night before and the burnt remnants of logs and ashes were still in the bottom of the fireplace. I thought, “Huh, it’s weird that the logs would still be settling now that they have been cold for a while.”

I went back to my book and read for a few more minutes. Until, something near the fireplace caught the corner of my eye. That’s right, something moving. I looked over and saw the tiniest brown mouse, scurrying across the floor. I did the only reasonable thing, pulled up my feet and screamed for Mr. Fly to remove the intruder immediately!

But just in case you are not grasping the full horror of this situation, let me be direct. That “plop” was a mouse. A MOUSE FELL DOWN OUR CHIMNEY. It survived falling down the chimney and then happily scurried towards the kitchen, to dine on the delicious assortment of foods that constantly lives below James’ high chair.

I’m not sure what the moral of this story is, beyond “A soft plop in any circumstances is probably not a good thing,” and “Let’s constantly have a fire so that any other mice that fall down the chimney are burnt up instantaneously.”

I hope you are having a wonderful, mouse-free New Year. Now, I’m off to investigate hypoallergenic cats.

Mrs. Fly

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Busy Busy Bee

I’ve written a little about my work before, to the extent that you know that I like it. No, I love it. It’s the most fun job I’ve ever had, I like to think that I’m good at it (and have been told so by less biased parties!), I don’t have to wear suits, and it offers a schedule fluidity that is essential to my parenting of James.

I won’t share exactly where I work here, but I am a teacher of a particular kind. I spend about half the semester teaching and half the semester grading papers. This is a “full-time job,” but it is infinitely more manageable for me as a working parent than my previous full-time job. This is not the salt mines, people.

So, I’m left with these weird chunks of the semester where I have work to do, but it’s all done on my own. The problem with this is that when I look at the calendar during these times, it appears blank.

And a blank calendar makes me twitch. I immediately think “I have so much free time to do whatever I want! Let’s sign up for some new activities! I am going to learn to play the guitar! I am going to paint our entire house myself! I am going to be the room mom! I am going to sing in the choir again! I am going to start an etsy shop! (Selling what, you ask? I have no idea. That’s not the point. Don’t be a cold shower.)”

You remember I have three kids? Because apparently, I don’t.

So, I find myself in the grading, faux-free-time part of my job and am busier than I am during the more heavily calendared parts of my job. None of the time commitments I have are bad things, but I feel scattered and unfocused in a way that I don’t when I’m busy doing one thing.

And, our house is still a wreck.

I want the same things I wanted in my more intense, time-consuming job, but I was sensible enough then to understand that with children and a job, there isn’t time for the extras. Feeling pulled in two directions was plenty.

Now, I don’t have that same sensible filter and my scattered attention is starting to feel unmanageable. I have a full-time job but feel like I have to cram in an extra life of stay-at-home-mom activities on the side, during these more fallow work periods. (Or rather, the activities I imagine my SAHM friends do, because I doubt most of them have time to do this stuff either.)

Why do we feel like a blank calendar is a bad thing? Why do we feel like we have to schedule every minute for ourselves and our children? What would happen if we did actually have free time?

If you find out, I’d like to know.

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Did We Ask God for a Child with Special Needs

Big Boy is a smart kid. He’s book smart and just smart-smart. He’s starting to ask questions and say things about James that can unmoor me in an instant.

This morning, from the backseat of the car, we were discussing what we should have for dinner. As our fridge is broken (Because we need one more thing to deal with right now. It was making a hideous grinding noise that we first heard upon opening the door from being out of town for the weekend. The crime scene fridge-side was gory in the extreme.), I told him that dinner would at least be bacon. Because we had a package of bacon that partially thawed when the freezer shut down, and now we needed to cook it.

Bacon for any meal is never a bad thing chez Fly, so we both happily pondered this for a moment. Then, Big Boy dropped the bomb.

“Mommy, did you ask God for James to be special?”

I stammered an incoherent response about how we asked God for all of our children and that we didn’t know James would be special in the way that he is and that Daddy and I love you all and weren’t we glad that we were having bacon for dinner and wasn’t having to clean out the freezer kind of fun?

And then Big Boy asked me, “Well, Mommy, did you ask for Baby Girl not to be special like James?”

And as I drove in silence, I thought about truth and lies and the things we tell ourselves to protect ourselves, and the things we tell the ones we love to protect them, and I didn’t want to lie to my son.

After that beat, I said, “Yes. We asked God for Baby Girl to be just the way she is. She’s special, but not special like James.”

From his backseat booster of wisdom, Big Boy said, “Well, God knew that James couldn’t play with me and I really needed somebody to play with, so he had to make Baby Girl like me.”

I asked him if someone had told him that, and he said no and asked me why I asked that. And I told him that it was just a mature thing to say. (And then I tried to explain maturity, which is kind of an abstract concept. I had to boil it down to “acting like a grown-up,” but that’s not wholly accurate. I wouldn’t say that explanation went as badly as the whole “God’s magic thing” on Easter, but it was close.)

What I didn’t say at the time, and I wish I had, is that I am so thankful that he and Baby Girl have each other, and that we all needed her, and that the sibling bond has been one of the great joys of my life, and I hope they are close for their entire lives. I should have said that I am renewed and delighted and filled with hope for the future when I watch them play, or when, last night, she reached out her arms to him and asked for a kiss.

But that’s all probably a bit heavy for a Tuesday afternoon car ride. There is bacon to eat, after all.

The Family Fly loves bacon.

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On Pride

Those of you that follow us on Facebook know that I promised you a happy post. I told you we were having some good days. And yes, that was true. Unfortunately, we’ve been struggling a lot more recently with James’ health, his GI system in particular, and this overtook us before I could properly revel in the good days. I fully appreciate how unfair this is.

One of the most difficult things about parenting a child with special needs is seeing the good times when they are in front of you. There is an undercurrent of sadness and anxiety in parenting him that I’m not sure will ever go away, and so when things are good, sometimes it is hard to recognize that. In this instance, we saw the good time, but the bad thing swept in and I was surprised. Again. You’d think I’d be used to this ebb-and-flow of joy and sadness after the past (almost) four years, but I’m not. I may never be used to the surprising and unexpected new challenges that crop up when we least expect it. 

But, let’s go back to the good days. James started sitting up by himself (generally in the bed or on his mat at naptime), and this is a big deal. A tremendous deal. It’s been a long time since he’s passed any sort of milestone, and we’ve even seen some regression this year as we’ve dealt with his health problems.

So, imagine my delighted shock to walk into his room and see him sitting up in the bed, looking at me like butter wouldn’t melt in his mouth. 

I asked Mr. Fly whether he’d sat him up, and he said no. Still confused about what was happening, I laid him back down on his back and told him to go to sleep. Just as I was walking out of the room, however, he did it again. He sat up. By himself. And he looked at me again as if he knew all the universe’s secrets and was giving one of them to me right then, pressing a sweet into the palm of my hand. 

I cried, shouted to Mr. Fly to run and see this, and of course we videoed this for posterity. There were more happy tears at school when he repeated the same behavior. It is thrilling and unusual to see James able to control his body, and we are all so proud of him.

Pride, however, is not a simple feeling. My mother used to say of me as a child, as I often insisted on wearing some uncomfortable headband or pair of shoes, that “pride knows no pain.” Perhaps that’s true, but as a parent, pride feels exactly like pain. It is both sharp and aching, sudden and deep. It is a cliche of working with special needs children or parenting them that the joys are all the sweeter for the sadness and struggle that comes before them. I guess that’s true. The pride is sweet, all the sweeter for the high price we pay to feel it. But the pain is there too. 

I haven’t seen James sit up in a week or two. I don’t know if he is still doing it, or if he’s decided that it is no longer interesting. This happens sometimes, where he will master a skill and then drop it, as if he simply couldn’t be bothered to spend his energy on this anymore. We hope that if we can make some progress with his stomach issues, he will feel better and come back to himself a bit. 

My pride knows pain, but I will surely cheer again the next time I see him sit up. 

Thanks to all of you for your support and sweet thoughts over these last few difficult weeks. 

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Sunglasses – My Messy Beautiful

 

 

James sunglasses

On certain days, days that seem to occur all too frequently lately, I’d like to wear my sunglasses all the time. Day or night, sunshine or rain, inside or outside. My sunglasses are a secret identity, a cape, a mask, and a sign that reads “Don’t talk to me. I’m intimidating. Reeeeeeaaaally intimidating.”  Wearing my sunglasses, the garage door is locked, the lights are off, and I am hiding upstairs in my bedroom, wallowing in a safe, sad bubble, hoping whoever rings the doorbell will just go away.

With my sunglasses on, I can be a lady on her way back from the eye doctor after a friendly, afternoon dilation. Or hey, maybe I’m just hung over.

With my sunglasses on, I am not the lady that’s been crying in her car for an hour before walking into her son’s school because he had a cluster of seizures that morning and “you need to come now or we’ll have to call 911.” I am not the woman with under-eye circles so purple and permanent as to thrill the make-up counter ladies to offer her an “incredible deal on the best new eye cream!” I am not the person that runs a mental calculus every morning about what time it is and what time did James wake up and has he had his medicines. I am not so tired.

But there always comes a point, as it did earlier this week, in James’ classroom with his sweet teachers and sweeter classmates, that I have to take them off. No one has ever said anything to me or asked me to take them off, but eventually I feel like I have no other choice. (And no, it’s not because I’m afraid of looking weird. Or people thinking I look weird. We know this.)

I walked into his classroom after they said he was having seizures and I needed to come right away. Seizures aren’t new for us at the Family Fly, but this sounded like something different. Everyone at the school was worried, and I was worried, and Mr. Fly was so worried that he left work without telling me he was doing it and drove straight to the school as fast as he could. And I cried the whole way there, and I was sad, and I was angry about why this was happening to us–Am sad and angry, although it’s hard to hold on to that level of emotion all day long. And I wore my sunglasses, and they made me feel better. Because I thought no one could see my sad and angry.

The mask may may have worked on the strangers I passed in the church parking lot where James’ school is house, and it may have worked on the church ladies preparing the fellowship hall lunch (“Does that young lady have an eye infection like that poor Bob Costas?”).  Once I walked into the classroom, however, their magic stopped working.

I saw James, and he looked at me and said, “Mama.” It’s the only word he can say, but if he’s going to have just one, it’s a good one. To James, I will always be Mama– there is no mask, no cape, no secret identity that can change that. And he sees me, and smiles, and says “Mama.”  This is his word, no matter how dark and puffy my eyes are and no matter how much I cry.

The other children in the classroom love a visitor and I soon found myself in a swarm of little people with sticky hands and feet wearing colored orthotics decorated with sports themes, rainbows, and hearts. (James has blue fish on his– I can never decide if a colorful design on a medical device like AFOs (the orthotics a lot of special needs kids wear to help stabilize their ankles) is adorable or depressing. Both, I suppose.)  One of my favorite little girls in the class, Katie,* peered up at me and gave me one of her trademark hugs.

And with James’ “Ma-ma,” and that hug, and the children playing around me, I no longer wanted to be zipped up in that sad and angry bubble by myself.  I took the sunglasses off. Only then could I really see the children playing, the easter art projects they’d made the day before, and have a real conversation with his teachers.

Seizures are terrifying and unpredictable and watching one happen in someone you love is like watching them possessed by something evil and foreign. But they end, and your person comes back to you, and he calls you “Mama.”   No matter how appealing pulling the shades down on the world feels so much of the time, when you are locked inside yourself, you miss the good stuff too.

I don’t plan on getting rid of my sunglasses anytime soon. (For one, they make an awesome headband. And two, they are really cute sunglasses.) But I will try not to wear them inside so much. There’s so much fun that I’d miss if I was alone in that sad bubble.

*Names of children other than my own have been changed to protect their privacy.

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As those of you that have visited me here before well know, Messy Beautiful could practically be the title of this blog. Well, Messy Beautiful  Reasonably Attractive You Wouldn’t Recoil From Us or something of that nature. But anyway, this essay is part of the Messy, Beautiful Warrior Project.

To learn more and join us, CLICK HERE! And to learn about the New York Times Bestselling Memoir Carry On Warrior: The Power of Embracing Your Messy, Beautiful Life, just released in paperback, CLICK HERE!

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On grace.

I don’t talk about God or religion much here. It isn’t that I don’t think about them (or Him), but I’ve never been particularly comfortable talking about faith in the abstract or my faith, in particular. (Hey, I’m Presbyterian. We’re called the “frozen chosen” for a reason.) I’m not sure I understand what faith truly is. But what about grace?

Like no doubt many others when confronted with a major life struggle, I had those “Why me? Why my son? How could God let this happen to my perfect, perfect baby?” moments. I still do.

I had one of those moments on the way back from Thanksgiving when James had a seizure in the car.  This was the holidays, it was supposed to be happy, we were supposed to be thankful for our blessings.

But what do you do when one of your blessings has a seizure, when seconds before you were thankful he was peacefully napping? When you thought he had outgrown his seizures and that wasn’t part of your life anymore?

You cry, you wail, you gnash your teeth. Your husband pulls the car over, and he cries. This is a man built of people who are salt of the earth, warm and solid Midwesterners. He rarely cries–he gets things done. When he’s feeling feisty, he gets shit done. But that Thanksgiving weekend, you cry together, even though the seizure is over in a matter of seconds and your son just looks at you afterwards with utterly peaceful eyes.

And your older son asks you why the car is stopped, and why Daddy is crying (he doesn’t bother to ask why Mommy cries, because he knows it is simply an essential bodily function for her, like her soul has to pee every day), and you have to explain to your infinitely innocent five-year-old that his brother had a seizure. It’s a word this precocious child heard every day of his life for a year after his brother was born, and yet it is a word he has never uttered. To hear him speak it is to feel the devastation of your baby’s diagnosis all over again.

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The best of times, the worst(ish) of times

To reference the great Tale of Two Cities: it was the best of times, it was the worst(ish) of times.

You probably noticed that you haven’t heard from me in a while. Did she run out of inane, embarrassing stories about her life, you ask? Did she move to Morocco?  Did she fall down a well, like baby Jessica? (Note: this is only okay to say since they found her. Obviously.)

I haven’t not posted because I have nothing to say. (And, the prize for the most negatives in a sentence goes to ME!) Rather, I haven’t posted because I have everything to say. I have oceans, reams, encyclopedias of things to say to you. It’s boiling any of that down into readable and non-overwhelming form that gets difficult.

As a family, we find ourselves in a peculiar place right now. We are deliriously, madly, absurdly in love with Baby Girl. Every day is a new milestone, a new moment of cuteness, and minutes and hours of pure, unbridled joy. We love Big Boy and James equally as much, but even our awe at Big Boy’s developmental period cannot match what we feel as we watch her grow. We marvel at how easy things are for her, because we see how difficult almost all things are for James.  Continue reading

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