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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On milestones

So not that long ago, I was having one of those “poor me” moments. Well, that’s not quite right. It was more like a “poor Eli” moment. I wasn’t able to go to Eli’s evaluation at the Thomas Center (Jane and Richard Thomas Center for Down Syndrome at Cincinnati Children’s Hospital Medical Center, that is) in October or September (it all runs together now), so I had only my husband’s interpretation to go by. He doesn’t speak therapy (as in physical, occupational, and speech) language, so I was quite frustrated at my lack of understanding about the appointment and that I was left to reinterpret his interpretations of their interpretations. Geesh. My interpretations of his interpretations of their interpretations had me worried for my son. And confused. Because how could it be possible that when I look at him, I see only perfection and PURE JOY, but when these people look at him they see percentile ranks and deficits and challenges? And then I got the written report in the mail. Finally, I could see their interpretations in a language I speak. Finally, I would not have to decipher husband-language to figure out how my son was developing. It would have been less painful for someone to hold me back while someone else, with very large biceps and a powerful fist, punched me in the gut over and over again. It was about what my interpretations of his interpretations of their interpretations said it would be. Sometimes I hate being right. I shed a few tears, texted and emailed a few of my fellow Ds moms, and posted on a couple of message boards. I don’t disagree with the report, I explained. (Shit, I was hoping to disagree with the report.) It’s just so different being on the receiving end of one of these. (You know, since usually I’m sharing my reports with parents.) I picked myself up with the support of those Ds moms I’ve come to rely on, and decided to carry on for Eli’s sake. Because when I look at him, he is still that perfection and pure joy that he’s always been to me, no matter the percentile rank of his expressive language skills. And I thought to myself that he started nursing finally at 4 months old. Four. Months. Old. If he could learn to breastfeed at 4 months old, he can do anything. He might be 4 months behind, but eventually we get to a point in life when 4 months is no big deal. And so we carried on.

And then, as my son is apt to do, he blew me out of the water. Out of the water. He decided to remind me, in his way, just how capable he is. Do you know what he did? Can you guess? He started signing spontaneously. He’d been able to mimic a few signs, but he had never signed without being prompted. But then, one day, he started signing on his own and in context. He signed more and milk and mama. He signed eat and all done (or all finished, if you prefer). He signed like he’s always been signing. Like he’s signed since birth. I jumped and screamed and scared the crap out of him with my cheering. And then I slowed down. What if he doesn’t know what these signs mean? I remained cautiously optimistic. And then he started signing at school. His teachers started asking me what different signs meant. One day, when I picked him up, his teacher had to wake him up from his nap. He started signing for milk right away. She didn’t think he could possibly want milk–he’d just had some before his nap. But he kept signing it, so she gave him a sippy cup. And he sucked it down. Sucked. It. Down. He signs milk when he’s eating and wants a drink, when he’s having a sippy cup, and when I’m nursing him. This kid knows what he’s signing. Another day, I walked out of the living room, leaving him to play for a few minutes by himself. My husband walked into the room before I returned, and he found Eli signing mama. He continued to sign for me until I came back into the room. His teachers have also reported that he signs for me sometimes during the school day. Bless my sweet boy’s heart, he loves his mommy. He signs eat all. day. long. according to one teacher. 🙂 He takes after me too. If there is one thing I know now, it’s that my little man has the cognitive capacity to “get it.” And he will get it in his own time. And when he does, he’ll make me feel silly for ever worrying.

Last week, Eli had his first regularly-scheduled physical therapy appointment. Once again, he surpassed expectations. Mine and the therapist’s. He did some things she didn’t think he would be able to do yet, especially after that evaluation just a few weeks earlier. I suppose he showed us that a lot can happen in a few weeks. He is such a fighter. And (did I mention?) pure joy.

I want the world to know that managing all of this–the evaluations, the therapies, the challenges and delays–is, well, manageable. I want families just getting a diagnosis to know that they can do it. That it’s really not a big deal, even if it sounds like it is. I want families getting a prenatal diagnosis to know that they can do this, that their child’s life will be so worth it. That having a child with Down syndrome is so worth it. There are challenges–that is an undeniable fact of parenting a child with a disability. But that is also an indisputable fact of parenting a child without a disability. I think about how my daughter developed so normally. Ahead of the curve, even. I think about taking her crawling and talking and nursing for granted. How they just happened, without much thought or regard for the complicated mental processes needed to perform such tasks. And then I think about my son. How purposeful we’ve had to be about each milestone. How focused. How determined. He has to work so much harder to reach the same milestones, to do the things that babies without Down syndrome do so easily. But when he does it, the feeling of victory is so sweet. I appreciate it in a much deeper and more profound way. It means more to me now because I actually have to think about it. And it makes me think back on my daughter’s milestones and appreciate those more too.

Sometimes I get overwhelmed with this life. Sometimes I worry. But I got overwhelmed and I worried before Eli was born. I wouldn’t change it. We’re almost one year in now and I would not change it. I love my son. Just the way he is. Because of who he is. Not in spite of it. For video clips from Eli’s physical therapy at home, find us on Facebook. (I was going to upload them here, but WordPress wants $60.)

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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Diary of a Working Mom

After being off for 8 months, I forgot how hectic life can be as a working mom. I’m not complaining (yet)–I’m laughing instead. 🙂 Here’s a snapshot of my day:

5:00am-alarm goes off. Accidentally snooze too long. Roll out of bed at 5:30 and hobble to shower after nursing stubborn baby who wasn’t ready to eat yet, but who was wide awake in his crib. Announce that I will start taking my showers at night. Drag husband and daughter out of bed at 6:00. Daughter pulls covers over head and insists she is not going to school today. Finish getting ready, gathering all of our stuff, and making bottles. Make it out the door at 6:45, thanks to my husband, who is helping straight from the shower wearing only a bath towel. Evie tells him he can’t come outside to put her in the car because he looks like a dork. I think he looks kind of hot.
7:00am-drop off kids at day care. More efficient operation than yesterday, as I know where each child goes in the morning–Eli goes to Evie’s teacher and Evie goes to the preschool breakfast room. Evie’s best friend (also 4 years old) insists she will open Evie’s yogurt for her as I set up Evie’s breakfast.
7:20am-roll into school with coffee and approximately 15 bags of teacher necessities in hand. Begin meetings. Meetings were productive and beneficial. Shout out to the school district for putting together a decent inservice.
Noon-enjoy lunch with colleagues at local Mexican restaurant. Yum. After today, there will be no more lunches off-campus. Head back to school to work in classroom, complete online training modules re: bloodborne pathogens, sexual harassment, and other fun things. Meet with special education supervisor and colleagues. Work in classroom some more.
3:45pm-leave school to pick up kids. Evie cries because she doesn’t want to go home. Eli was happy to see me, at least.
4:30-arrive home. Attempt to nurse baby after going all day without pumping–too many people in and out and no key yet to lock door so I can pump. I’m in pain. He doesn’t care–he’s not interested. Decide to pump instead. Realize I left pump at school. Evie chases dogs around house trying to get them to play with her in her room. They won’t cooperate, but one destroys a diaper he found in Eli’s trash can. Awesome. Evie comes downstairs in dress-up clothes and refuses to change to make a trip to the store. I have pictures to pick up and a few more teacher things to get. She goes in her princess costume.
5:30pm-enter dreaded big blue department store. Bad idea. The place is swarming with people stocking up on last minute school supplies. Make about 32 laps around the store searching for a fan and the photo center. Why isn’t the photo center in the same place in all dreaded big blue stores?? Evie falls asleep on toilet paper in back of cart and has meltdown when I wake her up to pay for it (after standing in line for 20 minutes).
7:00pm-come home to feed kids and begin bedtime routine. 4-year old refuses to eat her dinner (that I actually cooked). Dogs decide they can help her. She scolds them. I don’t get it–she doesn’t want it but doesn’t want to share. Remember to take out frozen breast milk and Evie’s lunch for tomorrow (success on both accounts). Feed baby. He cries between each bite because I’m not feeding him fast enough. Attempt to give him his evening meds. He takes the one he usually spits out without incident. The one he usually takes just fine comes spraying out of his mouth in all of its tar-colored, root-beer-flavored glory. Fail.
8:00pm-bath time, much later than I had planned. 4-year old demands a “shower bath.” After bathing the baby, I relent. Get baby in bed and go back to help Evie finish. Lean forward and bust the zipper on my shorts. Damn. I love these stupid shorts. 4-year old doesn’t want to cooperate at bedtime. I get her digital clock, which reads 8:31, and tell her she has until it reads 8:40 to finish getting ready for bed. She jumps on her bed instead–and flips backwards onto the hardwood floor. Wailing ensues and she tells me she needs to go to the “hopspital.” Manage to tuck her in and read story by 8:37. Lights out. Come downstairs to let dogs out. Sit with them outside so one doesn’t make a jailbreak. Get eaten alive by mosquitoes. Come inside to find Evie on the landing crying that she wants to be with me. Coaxing, bribing, and insisting doesn’t work. She will not go back to bed. Knock on the door. Dogs go nuts. I am wearing my shorts with the busted zipper. Thank God it’s a friend dropping off something I left at her house and checking in about school. She’s my workout buddy, but I haven’t made it to the Y for the last 2 days. Finally get Evie set up on the couch. Her a banging noise on dining room door. Investigate. Open door to an awful smell. It’s the dog’s breath. And she has a giant rock she managed to sneak inside, apparently to bang against the door. I detect another funky smell. The other dog has gas. His farts are rancid. Take dogs back outside because I enjoy being bitten by mosquitoes more than I enjoy cleaning up dog poop in the house. Dogs decide not to come inside. They want to chase each other instead.
9:26pm-realize I never did get around to any of that laundry I told my husband I would be working on. Dishes are still in the sink. Living room needs to be straightened up. Decide it won’t hurt anything if I skip my chores tonight, realizing I will regret that decision tomorrow. Think about what to wear for the first day of school. Make no decisions but determine that I have clean underwear. Think about my earlier declaration re: showering at night. Realize I was full of it. Prepare for bed. Alarm will be going off at 4:30am–must beat the morning rush of students.
🙂

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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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