the toddler years – naps

I carry him up the steps while he clutches my neck and keeps his little legs wrapped tightly around my middle. He lets go with one hand, pops his thumb in his mouth, and rests his head against my chest as I climb. He could ascend the stairs himself, but he is sleepy. And he is my younger baby–and likely my last baby–and I know I won’t be able to carry him up the steps like this forever. We grab his blanket and his monkey–“Key!” he exclaims enthusiastically–and we make our way to my bedroom. I toss him gently on my bed so that he bounces–just barely–and lands comfortably among the pillows. He smiles at such fun. He clutches his blanket and monkey, rolls onto his belly, tucks his legs under his little body, and points his diapered bottom at the ceiling. He turns his head away from me slyly, returns his thumb to his mouth, closes his eyes, and pretends to snore. He giggles, then looks at me. I laugh too and he does it again.

I roll over and wait. I know what’s coming. He does this every time. I brace myself by holding my breath and closing my eyes. Within seconds, like clockwork, I take an elbow to the kidney, then a knee, as he crawls over me to see if I’m awake. He assesses my level of consciousness to determine how much he might get away with this time. I open one eye just enough to see what he’s doing, but I can already feel him creeping closer to my face. He wants to be sure. When he’s satisfied that I’m asleep, he crawls back over me to the other side of the bed. He doesn’t yet understand that crawling over someone is a good way to wake them up. This makes me smile.

He slides to the edge of the bed and dares to make his escape. I turn just in time to catch him jumping off, and he knows he’s busted. We both laugh. He tries to evade capture, but it’s no use–I snatch him up and smother him with kisses as we get back into bed. He needs to take a nap and I will win this battle. I try again, rolling over so I’m not facing him because I know he won’t go to sleep if he can see my face. He’ll just try to play. No matter–he crawls up to my head this time, grabs it, and attempts to turn it toward him. I am forced to roll over and face him. He places a chubby little hand on either side of my face and turns my head one way, then another. He shoves a finger in my nose, then another in my eye, forcing it open. He turns my head the other way sharply, catching me a little off guard, and he laughs. He does this a couple more times before I start laughing too. Each time he does this, he studies my face, waiting for my reaction. He wants my approval. He wants me to laugh. He is proud to be funny–he loves being the family comedian. He brushes my hair from my eyes.

He snuggles up to me and rests on my chest. I’m rubbing his hair. He, of course, is sucking his thumb. Again. He is so very sweet, and I think about how quickly he will grow, how it won’t be long until snuggling with his mom is a potentially reputation-ruining offense. The moment is fleeting. He snaps up and tries again to make a getaway. I’ve lost this battle. He is not going to sleep. And actually, I’m ok with that.

He makes his way to the door and knocks. He tries to reach the doorknob and knocks again. I follow and open the door for him. He walks to the steps because he wants to join his sister downstairs. He adores her. His sun rises and sets with her. He grips the banister and begins to maneuver down the steps standing up. This is big boy stuff. He refuses to go down the steps on his rear, and he has paid for his determination in the currency of bumps and bruises–he’s tumbled down these steps more than once trying to be so independent. Each time has shaken me to the core. His cries tear me apart. For a moment, I flash back to just a few days ago when he fell last, and I’m reminded that he’s not exactly like other almost-three-year-olds. I think about my niece–about how she is just a few months older than he is, about how she is potty trained and speaks in complete sentences. It stings for a second. I acknowledge the sting, and I move on. I will not live in this place of fear or grief or regret. My heart is much too full for that. Besides, I’m not sorry my child has Down syndrome.

I go back to celebrating him for where and who he is now. His worth isn’t defined by milestones, and he isn’t less valuable because he needs some extra time. I see him learning every single day. I watch his eyes light up with each new discovery. I delight in his facial expressions, and I can see his wheels turning as he processes the bombardment of information all around him. He is learning. He is growing. He is capable. He is smart. He calls downstairs to his sister. I hear her running to him, and in seconds, she is up the stairs. He squeals excitedly and leans into her. She opens her arms and embraces him. They make their way downstairs and I feel peaceful. This life isn’t scary. It isn’t tragic. It’s wonderful and hard and worth it. So worth it. He has a purpose. He is meant to teach the rest of us patience and tolerance and unconditional love. I can feel it in my bones. This boy. This precious boy. He matters.

I worry sometimes that he is growing up in a world where the number of babies born with Down syndrome is decreasing at a troublesome rate. I worry because we accept disability as a reason to abandon one’s post as a parent. I worry because we live in a society that believes the birth of a child with Down syndrome is cause for an apology. And I worry that others won’t see that he’s a human being, worthy of dignity simply by virtue of being human. I look at his blond hair and bright blue eyes. I take in his smile and I can’t imagine how our family ever got along without him. He watched his sister and dad walk out the door today without him and he covered his face and sobbed. He has feelings like we all do. He is not simple. Not at all. And his existence is part of a divine series of life-affirming events. He saved me, this child. He still saves me. While I do not know what the future holds for him, I know this much is true: before he was born, he was wanted; after his diagnosis, he was wanted; and –without a doubt–he is loved. Immensely. And I hope he knows that forever.

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Anxiety

Sometimes I worry. A lot. I love the Momastery blog, and when Glennon posted the “I can’t keep calm because I have anxiety” shirt, I think I did a fist pump and declared that the shirt had obviously been made for me. Those closest to me have seen my hand-wringing-can’t-sleep-can’t-eat moments when I fret over everything in a vain attempt to somehow control that which is very clearly out of my control. Throughout my life, I have learned how to mask this from most of the rest of the world, and I don’t even think I really understood what was really at work on my mind and body until recently. I could go on and give you more specifics about this, tell you things that would make you either think damn, this lady has issues or ohmygosh, I can relate. But that’s not the point of today’s post. The point of today’s post is to offer a little insight about the type of worries those of in the world of special needs face.

I’m a teacher. A special education teacher. An Intervention Specialist according to my license. My work days are spent in a self-contained classroom teaching a transition-based, employability and independent living skills program to high school students nearing graduation. We focus heavily on post-school outcomes–living and working in the community with minimal or no support, participating as an active member of the community, and improving overall quality of life. When students are referred to me, we consider those things primarily–is she employable and what’s her quality of life likely to be if she doesn’t get some specialized training in this area? Some people no longer believe programs like mine are necessary, that inclusion solves every problem. While that topic deserves a post of its own, let me just say a couple of things: 1) I really really believe in inclusion–it is fundamentally important to everyone, not just those with special needs; 2) I also really really believe in my program, in the idea that inclusion isn’t enough and much like their peers who attend career/technical programs or take college prep classes, my students deserve to participate in a specialized curriculum that is geared toward their unique needs; 3) what I teach is just as important as traditional subjects, and sometimes, for these students more important; 4) a comprehensive, excellent education allows students to access services across the continuum–that a great education can and does strike a healthy balance between the inclusion setting and the resource room setting.

Now, to get on with my point…Our class (along with our sister classes across the hall) schedules regular community outings throughout the school year. This allows students to practice their banking and budgeting skills, learn how to shop for groceries and other items and handle money, participate in recreation and leisure opportunities, and so on. Every time we go into the community, I worry about how my students will be perceived. Did you catch that? I don’t really worry about how my students will behave in the community, about how they will conduct themselves–even my students that have some behavioral issues in the classroom have demonstrated excellent behavior in the community. But I worry that other customers or patrons will be annoyed with them. I worry that store clerks will roll their eyes when we walk in or follow them around, expecting them to make a wrong move at any moment. I worry that other people will simply ignore them, pretend they aren’t there, effectively stripping them of their humanity and dignity by imagining they don’t exist. And I worry that my students will pick up on all of this–they are, after all, sensitive souls, and they do, like the rest of us, experience the normal range of human emotions.

By now, you’re probably thinking this is one paranoid chick. It’s ok because yes, yes I am. And I know that I am because our experience in the community has been overwhelmingly positive. Stores and restaurants have been welcoming and accommodating, customers at the bank and store have waited patiently while my students finished their transactions, sometimes needing coaching from a teacher or staff member. But I do believe the fact we’re there as a group benefits us. It’s much easier to express one’s impatience or disapproval when there’s only one person with a disability holding up the line. It’s much easier to look through them or avoid eye contact when you pass only one person with a disability in the aisle. It’s not so easy when you come upon a large group of these lovely folks, especially when they are protected by the armor of their teachers and paraprofessionals. 🙂

But back to my point. Again. Yesterday, we took our students to the park after our other activities were finished. We were planning on doing a shopping activity in a local mall. Students were going to plan an appropriate outfit for a job interview. But it was a beautiful day. And at this point in the school year, we all needed some sunshine. So we decided the rec/leisure component of our program would trump the practical aspect of our program for the rest of the afternoon and off to the park we went. On the way, I was calm, excited. Not nervous, not worried, like I often sometimes am. And then we pulled into the parking lot. And it was like a switch flipped in my brain. Oh, shit. The park was buzzing with energy–there were kids everywhere, out with their parents and caregivers to enjoy the beautiful weather. And these kids were younger than our students. Much younger. As we got off the bus, I felt my breath catch in my throat. I’ve always been protective of my students, but now–since Eli came along–I’m fiercely protective. It bubbles just under the surface and it doesn’t mean that I coddle my students or “mother” them. And I have to deal with problem behaviors sometimes that make me want to pull my hair out and render me exhausted. But they are still my students. We spend most of the day together. And ultimately, it doesn’t matter what challenges we face together because it’s my job to face those challenges with them. I care about them deeply. The day that I stop caring is the day I know it’s time to move on.

As we walked toward the park and I glanced around at all of the other people, I wondered how they would react to our students. The range of their abilities is great, and in some cases more noticeable than in others. I followed closely behind my students–many of whom headed for the playground–fully expecting to see parents grab their children and whisper to them to stay away from “those kids.” My mind went into overdrive and I imagined conversations might go something like this:
Mom (in a strained whisper, eyes darting wildly around the playground): Kid, come here! See those kids? I want you to stay away from them. Stay out of their way. Don’t go near them.
Kid (in that too loud, too public voice kids so often use): What, Mom? Why? What’s wrong with them?
Mom: Ssshhhhhh! Nevermind. Just stay away!
Kid (getting louder): But, Mom??!!
Mom (straining to hide frustration at this point): Because I said so. And because they’re…different.

Yes, as crazy as it sounds, I really expected to see at least one mom do this as my students stormed the playground. I imagine how our group might have looked–my students, with their young adult bodies, running with the glee of children, thrilled with the prospect of swinging and climbing and playing basketball and basking in the sunshine. Few people would expect them, at first glance, to be so excited about a park and a playground. I think about these things not just for my students, but also for my son. Because the older he gets, the harder it will be to blend in, and the more obvious and pronounced his differences and challenges will become. Babies and small children like my son seem to fare better than adolescents and adults; people have more patience and tolerance because they’re so young, because they’re so cute.

I have to say that my fears yesterday were, ultimately, unfounded. Although I did notice a pair of women exchanging a hushed conversation while they pointed at a few of our kids and looked around, not one mother snatched up her child and left the playground, and not one sitter told her little ones to stay away. We even got a few knowing smiles from people that were either being polite or approved of our outing and the fun our students were having. One young man even invited a group of our young men to join him on the basketball court. Otherwise, for the most part, we were ignored. Which I suppose in our often-socially-awkward-and-contradictory American society, is what a lot of people do to each other at the park.

And that brings me to my next point. Being ignored is another one of my fears. For my students and my son. Because ignoring those who are different–pretending they aren’t there because their differences make us uncomfortable–is a subtle, but no less demeaning, form of discrimination. It is easy to pull off. And it is easy to justify.

“I don’t talk to anyone at the grocery store, so why would I talk to him?”

“That woman doesn’t know any different anyway.”

“Eli won’t even realize he wasn’t invited to your birthday party, honey.”

What gets lost in all of this is that no matter what challenges anyone faces, everyone longs for acceptance. We all want to belong. We all want to be part of the group. And I suppose so many of my anxieties stem from this: that someday, Eli might be the only kid in his class that doesn’t get invited to the birthday party. Someday, one of my students might be the person on the bus that no one wants to sit with. Someday, my son might be the kid that’s picked last for dodgeball or soccer or group work in class. And I promise you, he will know. And he will understand. My students know. And they understand. And it is, and will be, heartbreaking.

I was talking with someone the other day about my son moving up to the next room at his day care. Eli and Evie attend a wonderful day care center. I am thrilled with the care they get there while I’m at work. My children are really loved. Eli’s teachers work on his therapies with him even though they don’t have to, and he was welcomed there with open arms, no questions asked, and with no additional fees. When my kids started there, I was assured that Eli would transition from one classroom to the next with his same-age peers, even if he wasn’t walking, even if he wasn’t talking, even if he wasn’t potty trained. Because the people at his center understand that would be best for Eli. Because they understand that it also benefits the other kids (some people doubt this, but trust me–there is plenty of research proving it…I’ll write about it someday). Because it is the right and loving thing to do. But in this conversation about Eli’s transition to the next class, as other parents were shuffling in and out to get their kids, it hit me very suddenly and very hard: what if the other parents don’t want their kids to be around me son? I faced this as a teacher early in my career, during parent-teacher conferences when a mother literally backed me into a corner and wanted to know why her son had to be in the same class with “those retarded” kids.

And so by my own past experience and my newfound concerns about the future, my fears and anxieties are compounded. And I think I become hypersensitive to things going on around me where something similar could happen. Which is why I worry when we take our students into the community. I worry because I’m not sure how to respond if something like that does happen, and I’m not sure how I would respond. I worry because it will break their hearts. And because it will break my heart.

The truth is, someday, somewhere, someone will be mean to my son. Someone will leave him out or say something ignorant and cruel. There will always be parents that think my son will somehow affect their kids in a negative way. The challenge isn’t simply in how we respond to those situations, but also in teaching my kids to be resilient. And I’m not exactly sure how to do that yet. I see my students, who are acutely aware of being regarded as “other,” and I hear their stories of being excluded or made fun of, and my heart hurts. They don’t deserve to be treated as outcasts. They are no less human than their peers without disabilities. And their disabilities and diagnoses are not their fault.

The fact remains that Eli is different than kids without Down syndrome. He faces challenges many other people will never face. My students are different too. I teach and I write and I share because I long to see the day when that’s ok. It’s ok to have Down syndrome. Or autism. Or a learning disability. Or to be in a wheelchair. Or to be nonverbal. It’s ok. In fact, it’s more than ok. It’s normal, whatever normal is. And it is worth celebrating. People with disabilities are valued members of their families. And they are more frequently being accepted as valued members of their communities. That is reassuring and a sure sign of progress. It obviously doesn’t assuage all of my fears, but it certainly makes me hopeful that the tides are changing.

We parents (and teachers) of children with special needs have a lot of worries sometimes. We have social concerns and medical concerns, fears that get the best of us sometimes. Sometimes, this is a really rough ride. And sometimes we wonder if we’ll survive. Or if our kids will. I can’t take away the medical fears we face–a diagnosis like Down syndrome means there is an increased risk for certain medical complications. Period. (Complications that, I might add, don’t devalue our kids’ lives.) But I can, and I will, continue to try to affect the social aspect. I will continue to write and share, and I hope that you will help to spread the word that kids like my son, kids like my students, deserve to be celebrated.

Have a great weekend! We plan to!

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Sunshine and rainbows

Not all days for our family are easy. Some of them are difficult emotionally, overbooked, overwhelming, or exhausting. Sometimes I can’t wait for my head to hit my pillow at night and sometimes I wish my parents were nearby so I could ship the kids off to their house for a night while I got some sleep. In my own bed. Alone. Without a foot in my face.

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Today is one of those days. One of those overwhelming-too-much-going-on-kids-in-meltdown-mode days. My daughter is in her room crying as I type, deeply upset by the consequences she suffered after a series of unfortunate choices this evening. Apparently, not being allowed to have dessert before dinner is reason enough to tell me that she wants me to die. This is not the kind of talk she hears in this house, although I will take responsibility for participating in an argument a lively discussion and/or using inappropriate colorful language on occasion. But she is only four years old. And where on God’s green earth could she possibly get her hyperbolic dramatic flair??…

Following in his sister’s footsteps is the little brother, who has become very vocal about what he likes and doesn’t like and what he wants to do and doesn’t want to do. And in his own dramatic style, he covers his face when told “no.” As a developmental milestone, this is thrilling–he gets it, he understands what “no” means. As a parent, it is usually adorable. Unless I am already exhausted. Then it’s not so adorable.

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Ok, it’s still pretty adorable, but you know what I mean.

So today I’m exhausted. I can feel my patience wearing thin and my anxiety building. We were out the door before 7am and we got home after 6pm. After work, I took Eli to physical therapy while my sister-in-law took Evie to dance (thank you, Sara!!). I made dinner for the kids, swept the kitchen floor, packed lunches for tomorrow, put out the fires unique to preschoolers and babies, bathed my darling children, earned the rank of worst mom ever (according to my daughter), tucked in the kids, and collapsed onto my bed where I am now hiding from all the other things that demand my attention.

It feels like there are just so many. My kitchen floor desperately needs to be mopped and my living room and dining room need to be vacuumed. There are mounds of laundry to wash and almost as much clean laundry to put away. There are bills waiting to be paid and taxes waiting to be filed. I need to finish cleaning up from dinner and find something to eat myself. The dogs are ready to come in and they’re probably hungry, and I’ll have to keep my eye on them so they don’t crap in the house 🙂 (they seem to be fond of doing that when my husband isn’t home). There are still things to carry in from my car, I haven’t worked out yet today, and there is plenty of work I could be doing from home to catch up.

But I’m not doing any of those things. At least not at the moment. In a few minutes, I will let the dogs back in and make sure they are taken care of. Spoiled even. In a few minutes, I will finish cleaning up from dinner, think about folding some laundry, and make plans to mop the floor. Tomorrow. But now…well, now I want to take a few more minutes to reflect on my day…

I started this blog to be transparent. To share our journey. To document what it’s like to have a child with special needs. And I’ve just shared with you the nuances of a less-than-perfect day. I’ve admitted that I’m tired and anxious and cranky. I’m admitting that there aren’t enough hours in the day to accomplish everything I need to do. And now I want to be very clear about something else: it’s not because of Down syndrome. It is simply because life is hard sometimes. For everyone.

My daughter would be just as feisty if her brother had been born without Down syndrome. If my son didn’t have Down syndrome, my kitchen floor would still need to be mopped and the laundry would still be piling up and I would still insist that my children eat their dinner before their dessert. Yes, without Down syndrome, I wouldn’t have to spend time at therapy, but make no mistake–there would be something else to fill that time. Because that’s just life. I’ve been busy my whole life. The only thing that’s different now is that I have to shift my focus to my children from myself. And as a parent, I would have to do that anyway, even if my son didn’t have Down syndrome.

The truth is, I enjoy taking Eli to therapy. It’s exciting to see him progressing so well. And I enjoy watching my daughter dance. It’s fun to see her pour all that energy into something constructive. I certainly don’t enjoy mopping or doing laundry. I don’t enjoy cleaning up after the dogs or washing dishes or being exhausted. But even on these long days, these hard days, these imperfect messy days, I still love my life. And I still wouldn’t change a thing about Eli, including his diagnosis. I wouldn’t even dream of trading these days for easier therapy-free days. Because these are our days. They are our moments. And they are all at once beautiful and frustrating, exhausting and exhilarating. This might not have been the life I would have chosen for myself, had I been given a choice. But I’m so glad it’s the life that was chosen for me.

Like any other family, we face our challenges. It’s not all sunshine and rainbows. But life never is. And that’s ok. It’s really ok.

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Just look at them–of course it’s ok.

It’s Been a While

Since my last post in August, I’ve started five new posts (not including this one). I’ve finished zero. It’s November 1st, and I’ve fallen asleep or abandoned every new post in the past few months. If there is one lesson the universe wants to be sure I know, it’s that I’m not Superwoman and I am not capable of doing everything. For my part, I have a really hard time accepting this. I know it. I admit it. But I don’t accept it very readily.

Over the last few months, our family has endured another hospitalization and Eli has been stay-home-from-school sick at least 3 times. (By school, I mean daycare.) The afternoon I picked him up to find out that he’d had three seizures was, thinking back on it, pretty surreal. I walked into his classroom expecting to take my kids to a friend’s house for a low-key evening and I left trying to keep my wits about me while rushing my son–with my daughter in tow–to the CCHMC emergency room. I had phone calls to make and I didn’t want to panic. Oh, and there was that whole driving thing. At rush hour. In a city that has some of the worst drivers anywhere. My husband rushed from the firehouse to meet us.

That evening in the ED was a long one. We entertained our hungry preschooler (who just didn’t understand why we had to go back to “Children’s Hostibal”) as best we could and tried to appease her with the wholesome vending machine treats. When my husband finally left with her at 11:00, Eli and I snuggled in together on a gurney. John and Evie headed to the firehouse to retrieve my husband’s things and we met them at home a while later. The hospitalization followed the next week (and thankfully only lasted a couple of days), and my mother came to stay with Evie so John and I could be at the hospital. After being hooked up to monitors for 2 days, Eli was found not to have a seizure disorder (thank God!), and we were sent home. Not sure what was going on, although the neurologists were quick to blame reflux. One of his nurses wasn’t convinced and I captured several of the events on video. Even Eli’s PCP thought they looked like partial complex seizures. But, thankfully, increasing his ranitidine means he hasn’t had any episodes since then. I guess those neurologists are pretty smart after all. How ’bout that? Throw in a stomach virus twice, two double ear infections, and thrush and my little guy had had a rough few months. You’d never know it though–he is so full of light. He was even happy with electrodes on his head.

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During the last few months I’ve taken time off work–even though I exhausted my sick time last year–to take care of my kids when the bugs hit. My husband has done the same. It’s meant going without overtime pay, and in some cases, going without pay, period, but that doesn’t seem to be so important when your kids aren’t well.

During these months, I’ve wasted countless morning minutes to scrambling for socks for my kids when we have not a minute to spare to get out the door. I’ve done the same thing packing lunches, looking for car keys, and trying to find jackets. In those moments I admonish myself–if I had just put the baskets of clean laundry away, I would have the stupid socks. If I had just packed lunches and planned outfits the night before, like we do most nights, I wouldn’t be in an anxiety-fueled frenzy trying to get my little ones out the door. And it’s hard on them, getting up so early. Bedtime in my house is around 7pm and they get up at 6am. But, of course, there have been too many nights over these past few months where we just didn’t make bedtime. And we paid for it the next morning in the form of preschool meltdowns. Don’t you know that black is an ugly color and preschoolers forces to wear black coats will cry because black is not pink? And of course having to brush your teeth before putting on your shoes is nothing short of tragic. Pick your battles, Stephanie, pick your battles. During these last few months, I’ve threatened to take my daughter to school in her pajamas or without shoes or with “stinky teeth.” I’ve hurried her along while her brother gets carted around happily, not bothered by much unless he’s hungry. I’ve felt guilty all the while knowing that I shouldn’t be hurrying my kids so much, wondering how I can possibly slow down with them and enjoy them for those few minutes we have together in the morning before we go out to take on the world. Yes, if I had just put away that laundry. And packed those lunches the night before.

During these last few months, I’ve started Weight Watchers. Again. And failed. Again. Struggled. Again. And tries again. Again. I’ve spent a lot of time trying to figure out how it is that I’ve managed some pretty impressive weight loss feats in the past, but this time is so impossible. I’ve determined that damn it, I’m hungry. And stressed. And carrots will never satisfy that lethal combination. At least not for me. I’ve tried to build more exercise into my routine and I’ve failed at that too. I get up at 4am with gusto ready to work out. Once. And then sleep trumps exercise every time. I make it to the gym regularly for a few weeks and then a kid gets sick–man down, man down!–or those 7 o’clock bedtimes creep up on us (and so do the morning meltdowns) and, once again, sleep trumps exercise. And there’s that whole getting-home-at-5-and-squeezing-in-family-dinner-and-time-to-play-with-the-kids thing. Yeah, that’s pretty important to me too, especially after being away from them all day. And don’t forget the ready-to-walk-out-the-door-and-realizing-you-must-nurse-baby-now problem. Things at the gym could get really messy if you don’t. And bouncing up and down during exercise class with a chest full of milk is not for the faint of heart.

During the last few months, I’ve had arguments with my husband, and all at once resented and enjoyed the fact that he is working almost enough hours to have 2 full-time jobs. (He has 1 full-time and 3 part-time jobs–such is the life of a firefighter, I guess…) Each month, more of our money has gone to child care than to our mortgage, and I’ve had to rework the budget (more than once) to make things happen. In these few months, we squeezed in 2 date nights, and both ended in our passing out, exhausted from the week, drooling on our pillows. Sleep also trumps nooky.

During these last few months, I’ve quit bringing work home with me because it just isn’t fair to my kids to keep working in the evening after being away from them all day. I’ve brainstormed ways to stay at home, especially with so much money in child care expenses, but we just haven’t been able to get that creative with the budget yet. I’ve had days these last few months that I’ve loved my job, and days that I’ve had some real concerns about the state of education–especially special education–and what that will mean for my kids, especially Eli. (And let me tell you, my concerns have nothing to do with the teachers.) I’ve made late-night runs to the pharmacy to pick up those meds I forgot, dragged a couple of sleepy kids to the craft store to grab t-shirts (at the last minute) for the craft project at school, and made some dinners that really sucked. I’ve gone to work with wet hair (sleep trumps beauty) and mismatched sock, and accidentally sipped my coffee from a mug with coagulated milk in the bottom (that was not awesome). I’ve cleaned my house only to let the clean laundry pile up, or put away the laundry to the detriment of the dishes. I’ve scrubbed the shower while I was in it and cleaned the rest of the bathroom while my daughter played in the bubbles during bath time. At least I was in the room with her, right?

Yes, it’s been a chaotic few months. I’ve had to admit defeat on many levels. I’ve had to stop thinking of my life in terms of “If so-and-so saw my house right now, he/she would be mortified,” and “I don’t want to run into anyone I haven’t seen in a while because I’m embarrassed I’m still carrying the baby weight.” These things get to me. They really do. And I have such a hard time reconciling the perfectionist in me with the me that has a messy house sometimes and the me that hasn’t made losing the baby weight a priority and the me that jets out the door with wet hair.

And over these last few months, I have been gentler on myself than I’ve ever been. I’ve snapped out of my hard-on-myself funks more easily than I have in the past, and I’ve been a little less inclined to believe that my self-worth is determined by the degree of wetness of my hair. I’m not a failure of a woman for choosing sleep over eyeliner, and I’m not a failure of a mother for not batting an eye when my kid eats a stale cracker off the floor (how did that get there, anyway??). I have wanted to prove for so long that I can be everything and do everything and do it well. I’ve created so many contingencies for myself–it doesn’t matter that I’m a good teacher because I’m a fat good teacher. It doesn’t matter that I’m a good mom for playing with my kids in the evening because I’m still the mom with the piles of laundry to finish, dishes to do, and toys on the floor. It doesn’t matter that I’m a good wife because…well, to be honest, I’m not sure where I stand on the “good spouse scale.” But you get the point. For most of my life, I’ve set up these unrealistic, unhealthy, and anxiety-inducing expectations for myself. The funny thing is that I’ve never expected any other woman to live up to my standards. But for myself, I have this impossible set of rules. But during these last few months, I’ve started to let some of that go. I credit my kids–and Down syndrome–with that. My kids have taught me the value of patience, but not just with them. I don’t want to project my unhealthy habits on them, so I’ve worked hard to fake it. I walk a fine line between teaching my daughter that the way you present yourself does matter but you aren’t a slob if you have a few mornings without perfectly styled hair. I never want my kids to obsess over their bodies the way I have mine (that’s a post in itself), so I’ve learned to be a little gentler with myself. I walk a fine line here between teaching my kids to be healthy–to maintain a healthy weight and healthy habits–and teaching them to wrap their self-worth up in it.

I see things a differently because of my kids. I see things differently because of Down syndrome. Down syndrome has taken every experience, every emotion, and made them just a little more poignant. Patience has become a little more important. Acceptance–self-acceptance–has become a priority. I want my son, who has Down syndrome, to value himself just the way he is. I want my daughter, who doesn’t have Down syndrome, to value herself just the way she is. I have to start by valuing myself. Right here. Right now. Just the way I am. No apologies. No excuses. I have to value myself while also working to better myself. But instead of focusing only on the end result, I’m learning to value the journey.

There is order in chaos, right? So somewhere, in this hectic life of mine, things make sense. 🙂 I’m working on that. In the meantime, here are a few of my favorite snapshots from the last few months.

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Evie

My daughter just turned four. FOUR. I swear to you I blinked and my sweet baby girl all of a sudden morphed into this sassy little preschooler. I think of little moments and I wonder where the time has gone…

Let me introduce you to her, my firstborn, the baby that almost wasn’t…

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The baby that almost wasn’t. One choice brought her into this world, although I had no idea at the time. When I realized the impact of my choice a few days later, I humbly thanked God for the choice I made. I suppose had things gone another direction, I would never had known. But to think of my life now, with this child in it, I shudder to think of the alternative.

Let me explain.

When my husband and I were planning our future together–before we were married–there was one thing we kept coming back to: kids. We both wanted them. Lots of them. Of course we had fleeting discussions about marriage, but we weren’t in a hurry for that. But kids, well, we were in a hurry for kids. I always had this nagging feeling that I should be having kids sooner than later, that things in the reproductive department might be a little hard for me. I had absolutely no medical or scientific basis for this. It was simply a gut feeling that had always been there. It wasn’t something I necessarily discussed with anyone, including my girlfriends. But it was something I knew in my heart to be true. Always.

So, when I fell in love with my husband, and we determined (without any rings involved) that we would be spending our lives together, we set out to buy a house and make some babies. This news might surprise some folks. I apologize to any family members led to believe my daughter’s conception was an “accident”–it certainly was not. In fact, after trying for 6 months unsuccessfully (we started trying before we even lived together–double whammy), we made an appointment with my doctor. Adding to our uneasiness was the fact that my cycle had been on hiatus for months, but pregnancy test after test came back negative. We were nervous but excited. After examining me and finding no obvious physical defects that would prevent me from conceiving, my doctor led us to her office, where she offered us two very expensive pieces of advice: go home and have a lot of sex and there was a pill available that would make me start my period. I could take it, she said, and be able to start tracking my cycles from scratch.

My husband (then-boyfriend) and I looked at each other. I took for granted that we were on the same page, thanked the doctor politely, and declined. I felt more comfortable letting nature take its course, I explained. I walked out of there feeling like we had learned little and feeling disappointed that I was so not pregnant (as if there are varying degrees of pregnancy) that I could have taken a pill to jump start my cycle and it would have been no big deal.

That was on a Friday. I remember what I was wearing that day–a red cable knit sweater with jeans and my black Merrell mules. I remember that I made a special effort to dry and curl my hair that day even though we were taking students on a field trip. I wanted to look pretty if the doctor told me I was pregnant. I knew exactly how I wanted the scene to play out and I did my best to stage it to my satisfaction. I remember receiving a compliment as I got on the bus that morning and thinking maybe I had “the glow.” But when we left the doctor’s office, I had to accept that “the glow” was nothing more than a good foundation and some skillfully placed blush. Good makeup. Nothing more. I said this already, but that was a Friday.

On Sunday, I was pregnant. I mean, it wasn’t like I wasn’t actually pregnant on Friday. It’s just that I didn’t know I was, and my doctor didn’t know I was, and seven pregnancy tests didn’t know I was. Until Sunday. And finally, after months of trying, I was pregnant. I guess my makeup skills weren’t as expert as I had thought. It was the glow after all.

One decision made in less than a minute guaranteed my pregnancy would continue. When I realized the magnitude of that choice, I was overcome with emotion. Had I taken that pill, I would have effectively (and unintentionally) ended my pregnancy. My daughter wouldn’t be here. My life would be very different.

But she is here. In a big way. She is here and she wants the world to know it. She is precocious and spunky. She is loving and independent and resourceful. She is mouthy, she is feisty, she is thoughtful. She is a living, breathing dichotomy. And I love every bit of her, even the stubborn streak she unleashes at the most inopportune moments. She is my heart, my soul outside of my body, my breath and my life. She is my world.

When Eli was born, one of the first concerns I verbalized was how his diagnosis would impact my daughter. I cried because she had dreamed of having a healthy sister. Instead, we were giving her a brother who had to be whisked away to Children’s Hospital just to survive. Certainly not the healthy sister of her dreams. Would she resent him? I asked that seething question through my hot tears. I couldn’t bear the thought of her resenting him. And I resolved then to shape her experience of Down syndrome into something positive. We could teach her to embrace it. That’s a delicate dance.

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Today, Evie adores her little brother. There is no resentment (although that could come later) and she sees him as a person, not a diagnosis. She will be his greatest teacher and therapist, and I am looking forward to seeing how their relationship develops over time. I believe she will always love him. And I believe she will never regard him as a burden. She is as compassionate and tender as she is stubborn. And I love that about her.

We get moments, you know. Only moments. And we can never go back and live them again. I’m going to make this my mantra as we sail through the next four years. And then the next four. And the four after that. She will be grown in no time, so for now, I want to enjoy our moments.

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In God’s Image

Yesterday, I cried at Kroger. In the produce department, while picking apricots, I started crying. I’m pretty much a wear-my-heart-on-my-sleeve kinda girl. There are songs that cue instant waterworks when they come on the radio and Hallmark cards that will get me every time. I feel emotions intensely. All of them, from anger to despair, from joy to excitement–they all make me feel like I’m going to burst, but in different ways. Some call this being dramatic. I call it being emotionally intuitive. 🙂

Anyway, as I was shopping for produce, procuring strawberries, bananas, apples, and of course, apricots, I noticed a man pushing a shopping cart not far from me. My eyes lit up and I smiled. At first, he appeared to be a young man, but upon closer inspection, his graying hair and the lines around his eyes gave away his age. I smiled even bigger at the realization that this gentleman was out and about in his community despite his age, and I hoped he would look my way so I could strike up a random conversation with him, as shoppers in grocery stores are sometimes apt to do. But he didn’t look at me. He just gazed straight ahead at the woman he was with. And he pushed his cart behind her silently as she pushed her cart through the store.

That was when I first felt my throat tighten, when my eyes welled with tears and I nearly choked on my own breath to keep from crying. This woman–she was supposed to be guiding him through the store, helping him. And she was ignoring him instead. She didn’t bother to engage him in the shopping. She didn’t bother to even crack a smile. She just led this man around stoically, and in the moment, a painful thought rose from my gut and I screamed on the inside, “That will never be my son!” I put my hand to my chest as I caught my breath, and the tears began to fall as I placed my apricots into the bag. And I didn’t care who saw me. My mind raced ahead 50 years and I vowed that no one will ignore my son that way. No one will strip him of his dignity, especially in a public place, where such behavior by a caregiver shows the rest of the community that it’s ok to ignore a person with a disability, a person with Down syndrome. But it’s not ok. It’s just not.

In case, as you’re reading this, you’re thinking maybe I’m being a little too hard on this woman or that I’m just being dramatic, let me explain. I teach young adults with developmental disabilities, including Down syndrome. In fact, I teach a transition-based program that helps students to get ready for life after high school. We work on functional skills–employability, self-care, money management. And we go grocery shopping on a regular basis. I know how this should look between a caregiver and client. And this looked nothing like that. Some might also say this man likely had no idea he was being ignored, that he isn’t able to experience hurt feelings. Bullshit. Down syndrome doesn’t render people devoid of emotions. We’re talking about people, after all. I can assure you–I’ve seen the hurt feelings–and laughter too–from my students. Their emotions are no less human than mine, nor are they any less poignant. Anyway…

There are some people that don’t believe what I teach is valuable. They don’t believe that it’s even education. Those same people, and even some of those that DO see the value in it, are often misled about why these transition-based functional programs exist. It’s not because these students can’t do anything else. On the contrary, many of them have participated in the inclusion setting for years before coming to a program like mine. Likewise, each of them has unique talents that extend beyond what we do in the classroom. Rather, these programs exist–and are necessary–because current data shows the overwhelming majority of adults with developmental disabilities do not participate in their communities, do not work, and do not foster meaningful relationships even though they are capable. Ultimately, the purpose of my program is to improve the quality of life for my students. And when we frame it that way, isn’t that the point of all education, whether functional or academic? To improve quality of life by producing self-sufficient, contributing and participating members of society? It’s just that my students don’t need algebra for that. They need to learn how to be a good employee, how to shop for groceries and stick to a budget, how to advocate for their specific care needs. I will even go so far as to say those skills are infinitely more valuable for my students than algebra could ever be. The value of education is not depleted because my program values function over academics. In fact, this is called equity–giving each person what he or she needs. There are plenty of people that believe my program should “look” more academic. But they don’t necessarily have a special education background. And putting these young adults in a program that looks academic just makes some people feel better about how uncomfortable they are with disabilities in the first place.

Don’t get me wrong–there is absolutely a place for inclusion. When our kids are included with their “typical” peers, it benefits everyone. Our kids are motivated and they develop peer relationships. When kids without disabilities grow up with kids that have disabilities, they learn that the kids with disabilities are, well, kids. They grow up without feeling uncomfortable around people with disabilities, as many adults often do. Because it becomes part of the norm, it becomes normal. There is little room for ignorance or fear of the unknown–both of which lead many to look right through people with disabilities–when our children grow up side-by-side with children with disabilities.

But there is also a place for meeting our kids’ educational needs in the setting that makes the most sense for them. Whether it’s learning calculus or how to count money and make change doesn’t matter. What matters is equity. And equity doesn’t mean treating everyone the same way. And that is where inclusion has largely failed students like mine, students like my son, at least inclusion as I have experienced it as a teacher. But enough about that for now…

I am not in denial about my son’s diagnosis. I am well aware of the potential challenges he faces, of what we’ll face together. And when the day comes, I want him to be educated in the setting that is most appropriate for his needs, whatever those may be. But I will be damned if I will ever let him be looked through or ignored. He will not be put in a corner to be forgotten. He will not be lead haphazardly through a grocery store by an unengaged caregiver, expected to follow like a puppy. We have no idea what Eli’s abilities will be, but I remain optimistic. And as long as I’m alive, I will never give up on him. And my children will be brought up to know that all people are worthy no matter their abilities, diagnoses, or disabilities. My son will be brought up to know that he deserves the same respect and consideration that anyone else does. And although I can’t control how my daughter feels about her brother, I hope that the way in which we bring her up teaches her the same thing, and should she ever have to be her brother’s caregiver, I hope that she does it without resentment and with a joyful heart.

I couldn’t wait to get out of that grocery store to get home to my kids. I just wanted to hold my son and smother him with kisses so that he always knows how loved he is. And I wanted to do the same to my daughter and tell her how proud I am of how much she loves her little brother. I am haunted now by that man’s face, by the look in his eyes. As humans, we are meant to lift each other up, not turn our backs on anyone, especially those among the most vulnerable in our society. I hope that someone loves that man as much as I love my son, that the next time he’s out, his caregiver acknowledges his existence and engages him in that day’s activity. And let me throw in a reminder for everyone: please look people in the eye–people in wheelchairs and people with Down syndrome, people with a lot of money and people without money. Show that simple act of respect to all those you pass, and you might consider smiling and saying hello too. Dismiss no one, because we were ALL created in God’s image.

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Hope and a future

Yesterday, after MANY hours of obsessive researching, we finally booked our family vacation. There are plenty of other things we could have spent that money on, but we had been saving for a trip anyway (albeit a different one that just wasn’t to be quite yet), and we’ve really been feeling like our little family could use some time away from Cincinnati for a while to enjoy each other. No Children’s Hospital, no chores and housework, no stress (ok, maybe some stress flying with 2 little ones…). The responsible part of me cringed at booking that trip, hence the obsessive researching (more on that in another post), but my sentimental side felt like we need to get away. We’ll be celebrating Eli’s recovery after his third (and probably final–fingers crossed) surgery, as well as getting through these last several months. And, for me, the part that gets my heart most excited is that we’ll be fulfilling this dream I had not long after Eli was born–my kids playing together on the beach and that blissful, peaceful feeling that life is good.

But for all of that, booking that trip has been bittersweet. Yes, it signifies the end of the dreaded colostomy bag, the end of surgeries, and our moving on with both of our healthy kids. But it also signifies the end of my time at home, and I am having a hard time with that. I can’t emphasize enough how fortunate I feel to have a job that has allowed me to take so many months off work (paid, even) because the business I’m in is so family-centric. And I have prayed over and over again thanking God for this time with my children. This time hasn’t necessarily been easy–I haven’t been at home having picnics and tea parties while I’ve been off. I’ve been managing leaking colostomy bags and a poop-covered baby and shuttling my child to countless appointments at Children’s Hospital. Eli has seen more specialists than most adults will see in their lifetime, the likes of which include an endocrinologist, neonatologist, pulmonologist, otolaryngologist, ophthalmologist, radiologist, speech and language pathologist, physical therapist, nutritionist, cardiologist, audiologist, surgeon, and primary care physician. Almost every single one of these doctors and therapists will continue to provide care for my son on an on-going basis, with the exception of the cardiologist, whom we haven’t seen since the NICU and the neonatologist, who will be dismissing Eli soon after surgery. Evie has come along to many appointments, or we’ve shelled out money at the rate of $10/hour to have our babysitter (we love her) hang out with her. With all the appointments–often several in a week–one can see how quickly that cost can climb. And speaking of Evie, while she has adjusted so well not only to having a new little brother but also to having a total change in routine, she has also been prone to toddler tantrums. So in the midst of all the poop-splosions (as we call them around here) and appointments, I’ve managed meltdowns and timeouts. It has been a grueling 6 months. Emotional. Exhausting at times (as parenting any child often is). But is has also been the happiest time of my life. That’s right. The happiest. The happiest.

For all of the miles put on my car traveling to appointments and hours (days…weeks…hell, months) spent at the hospital; for all of the baths and colostomy bag changes; for all of the throw-herself-on-the-floor-fits and trying to hear the doctor over the demands of a toddler; for all of the pumping and finally nursing (after 4 months of working on it, yeah!!) and administering of countless medications–I have loved every single minute of being home with my children. I haven’t once felt like I can’t wait to go back to work.

And that speaks volumes. Because I love my job. I don’t love the paperwork and the politics, but I love teaching. I love working with young adults with disabilities. I love it. I am passionate about it. It makes my heart beat fast and I will go toe-to-toe with ANYONE to advocate for my students. But my children make my heart beat faster. My passion for my children is greater than the passion I have for my work. And I never NEVER thought I would admit to this, but I would love to be a stay-at-home mom. After six years of school and six years in public schools, after working into the wee hours of the night for my job at the expense of my family, I would walk away from it, at least for a little while. After my parents paid thousands of dollars for me to attend a private college and I paid thousands of dollars to get my master’s degree, I would put my career on hold to be with my children.

And I never thought that was who I am. I never thought that after investing all this time and money in my education and career that I would want to stay home. Because I’m a big believer that a hard-working woman–that a woman who invests in herself–sets a good example for her children, especially for her daughters. But I also believe that I would rather bring up my children in these early years rather than pawning them off on a child care center. Don’t get me wrong–Evie went to a center we loved and I worked for a center that I would send my kids to in a heartbeat I still lived in Columbus. But I want to be home with them. I don’t want to miss another moment.

But that isn’t my reality. My reality is that our family is dependent on my income. My husband and I have had some very long discussions about this. Sometimes, when we look at it from the perspective of how much we would do without on a monthly basis, and how much he would have to make up for it in overtime (especially considering the cost of day care at about $1400/month for both kids) it almost seems possible. And it almost makes sense. But when we frame it in terms of what that looks like annually–that we would be giving up 40% of our annual household income, we are jarred back to reality. And make no mistake–it’s not that we just love money. We have bills to pay. A lot of them. And a savings to grow. In a big way. Because we have other dreams and goals for our family too. Like building our forever house in the next few years, which is going to take some aggressive saving and strategic budgeting for our family. Something that likely will be pretty much impossible without 40% of our household income. Of course, my husband could pick up extra shifts between the 2 firehouses he works for part-time (in addition to his full-time job) to try to make up for it, but he already works a lot (A LOT) for our family. I don’t think it would be in our family’s best interest for him to put in 80-100 hours/week. It certainly wouldn’t be in his best interest. And this isn’t just about what I want. This is about finding a balance that works for all of us.

For all these discussions we’ve had, I’ve considered some other options. I’ve thought about working part-time somewhere. But where? I’ve looked, that’s for sure. Or what if I provide child care in my home for a kid or 2? But whose kids? I don’t exactly know anyone looking for a full-time sitter. Or maybe I could try my hand at selling something–I know several people that have seen success with Scentsy, Jamberry, and Mary Kay. But those are risky prospects if I’m not taking them on in conjunction with a full-time guaranteed income. Because if I’m not a stellar salesperson, then what? Crawl back to HR and beg for my job back?

So I’m left in another place–being thankful for the time off I’ve had and making peace with the fact that I will still be providing for my family (in a big way) and setting a good example for my children by going back to work. I’m trying to focus on being grateful for a job that affords me a pretty decent schedule and has allowed me to spend these last months caring for my son (having my daughter at home too has been an added bonus). I pray about this frequently, and there are things in the works that I can’t really discuss yet. If there is one thing I’ve learned through all of this with Eli, it is trusting that I am exactly where I’m meant to be–it’s having faith that even if I’m anxious or worried, even if I’m trying so hard to make things happen, there is a bigger plan for our family. And though it might take what feels like an eternity to unfold, it will be revealed just as it should be.

“For I know the plans I have for you,” says the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” –Jeremiah 29:11

What a wonderful, blessed adventure I’ve had over these last 6 months. I am trusting that the next 6 will be at least at blessed. And I am so thankful.

Some of my favorite moments from the last 6 months. Thank you, Shelly, for the one where I’m lifting Eli.

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