Guts & Glory

I can’t quite remember how much I’ve shared on this blog, and I’m too lazy to go back and check, so just in case I forgot to mention it (or you didn’t catch it on Facebook), Eli has a colostomy bag. He had a congenital defect known as imperforate anus–in other words, he was born with no way to evacuate waste. Or, as we prefer to say, he didn’t have a bootyhole (because we’re really big on using technical and medical terminology). He was born with this perfect little bottom that looked like any other perfect little baby bottom until the doctors and nurses went poking around down there and realized something was missing. That’s why he was whisked away from us moments after he was born and taken to the NICU, and that’s why he got to ride in the amazing ambulance from our hospital to Children’s Hospital within hours of his birth. I wasn’t allowed to nurse him and he wasn’t allowed to take a bottle. Eating could have been disastrous, as there would have been no way for his body to rid itself of waste. I have jokingly said that I’m glad I’m not into home births (fine for other people, just not for me) because we wouldn’t have noticed his lack of bootyhole and I’m sure I would have put him straight to the breast. God knew what he was doing by making me a fan of delivering babies in hospitals.

Anyway, Eli had his first surgery when he was just over 24 hours old. That surgery created a stoma and a mucus fistula (did you know the intestines produce mucus?–fascinating!) so that he could have a colostomy bag. On my tiny newborn, it looked like he had been cut almost in half. The incision from the stoma to the fistula seemed to go almost from one side to the other. Everything was going very well until his wound dehisced thanks to an infection (which is, apparently, quite common…). In other words, the incision came apart in a rather unpleasant fashion, exposing his insides right down to the intestinal walls. For all intents and purposes, my son’s guts were hanging out.

I was surprised by his Down syndrome, and I was surprised by his being born without an anus. But nothing could have prepared me to see my baby like that, lying wide open in his NICU crib, so innocent, so undeserving of this hand he’d been dealt. I prayed a lot during that time and focused on staying faithful. It would have been really easy to be angry, but for some reason I wasn’t. I would just joke that we were going to have to talk to God about why he forgot to give my son a butthole. (Seriously, did I just put God and butthole in the same sentence?)

Healing the wound was an ordeal. I can’t even tell you how many specialists, nurses, and doctors worked with my son trying to speed up his recovery. The incision couldn’t be stitched back together because that would just trap the infection inside and make things worse. They couldn’t use a wound vac to irrigate it because his wound–gaping as it was–was too small. Their only option was to irrigate it by hand every couple of hours and pack it with special gauze. They also put a catheter into the stoma to divert stool away from the wound, but he managed to get his toes wrapped around it and yank it out a few times despite the inflated balloon inside that was supposed to keep it from coming out. As the days passed, we could see granulation tissue forming as the incision healed from the inside out. The wound healed much quicker than the doctors expected, and it was time to figure out the colostomy bag.

Because of the scar tissue and the shape of the stoma, it was nearly impossible to get a good seal on a colostomy bag. The stoma was angled towards the scar tissue, which acted as a canal that channeled his runny breastmilk stool downward, causing the bag to leak (what, too much?). They weren’t crazy about sending us home with a leaky bag, but we assured them we could handle it, even if we had to change the bag as often as a diaper. When I was able to break the record and keep a bag from leaking for a whopping 17 hours, they finally agreed to let us take Eli home. It was his one-month birthday.

It seems so funny to me now that we would measure the time we got out of a bag in hours. I can remember getting so excited about 24 hours, then 33 hours. Eventually, we were able to start measuring in days. We came up with all sorts of tricks for keeping the bag on and avoiding poop-splosions (as we call them), but our ultimate goal was always to keep his skin in good condition. Stool isn’t meant to sit on the skin, and it is highly irritating, as well as infected. Removing a colostomy bag frequently is like taking a bandage off of
the same spot over and over again–eventually the skin becomes raw. By the grace of God (and our newfound nursing skills), Eli’s skin remained in perfect condition. He had his second surgery–during which his awesome rock-star-of-a-surgeon created what we lovingly refer to as the “Million-Dollar Asshole”–at the beginning of April. We were home after a short hospital stay and all was well. Until last week.

Right now, Eli’s skin is broken down around the stoma and mucus fistula to the point that he has bleeding ulcers on his tummy. It seems that introducing semi-solids and purΓ©es triggered the irritation, although swimming could have something to do with it also. This is a problem for several reasons–it’s painful for him, difficult to heal, and requires constant attention. Most importantly, we need to get his skin healed before the colostomy closure surgery (when they will reconnect his bowels and he’ll get to try out that million-dollar asshole of his) or they won’t be able to operate. This is an impossibility as far as I’m concerned–we WILL get him healed, he WILL have his surgery. He has been through so much already that I’m just ready for him to be able to move past all of this.

So, for almost a week, I’ve been managing his stoma and stool output without a colostomy bag. Changing the bag just caused his skin to breakdown further, and leaving the bag off allows me to treat his skin with various medicines and clean up any poop as soon as he has a bowel movement–it allows me to keep the area as clean as possible to help the healing process.

After trying myriad remedies, his skin is finally starting to heal, but it’s a slow process. I’ve used Desitin, Neosporin, Nystatin, Aquaphor, Boudreaux’s Butt Paste, and Magic Butt Cream in an effort to soothe and heal Eli’s skin. We’ve gone from connecting two diapers and wrapping them around his midsection to contain poop-splosions to covering the stoma loosely with a 4×4 piece of gauze. I check him frequently and clean him up immediately when he poops. I even check him throughout the night. These are the times it would be helpful to have a home nurse, although I feel like I’ve become so tuned in to his needs that I can take care of him better than almost anyone at this point. I’m still waiting to hear back from the nurses at the colorectal center to find out if there is anything else we should be doing for him, but he seems to be making progress.

Many people have said to me that they just can’t imagine doing what we’re doing. They don’t know how we do it, they say. Honestly, it sounds like a lot on paper–and it is a lot–but he’s my son and I would do whatever I need to do to keep him healthy. I have conquered my squeamish stomach and actually touched my child’s intestines with my bare hands (how else do you think he gets a bath?).

But the reality is that I don’t mind doing any of it, even when I’m so tired that I’d love to have a nurse. Of course I would do this for him. I would do it for my daughter too. And it doesn’t really feel like we’re doing anything too special–we’re just taking care of our son to the best of our ability. I am just being a mom, doing what I hope any other mom would do. And at this point, it’s just become part of our routine–it’s become our “normal.” Yes, I’m looking forward to the colostomy closure and moving on from this. But I would do it all again if I had to. I would move mountains for my children, and for as long as I live, I will be there for them both. Because I have been given two precious gifts in my daughter and my son. My children are both healthy, despite my son’s current medical needs. And although we’ve experienced some loss and faced some surprises, we are lucky enough to be the parents of two pretty awesome kids. And at the end of the day, I think about the families struggling to have children and the families whose children haven’t fared so well as mine, and I thank God for our blessings.

We are a happy, grateful family. My husband and I love our children more than life itself. And regardless of any diagnosis, we feel like we are pretty damn fortunate. We can go to bed at night with peace in our hearts because even with all we’ve been up against, life. is. good. πŸ™‚

Check it out–“Magic Butt Cream” is the technical term.

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Eli looked like a little marshmallow man when the diapers were wrapped around his waist.

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Damned Men

Since our anniversary has officially passed, I think I can safely share some words of marriage wisdom. And since I’m pretty sure my husband doesn’t even know (or at least doesn’t acknowledge) that this blog exists, I’m probably protected from any retaliation on his part.

Men, take note. The following snippets of conversations with my husband should provide examples of things one should never say to a woman.

For the love of all that is good and holy, do not ever, especially with even a hint of disgust in your voice, ask your wife (or any woman), “Um, are you getting varicose veins on your legs?” Because yes, after bearing children, she probably is getting varicose veins. And she already knows it. She sees her legs every single day, and trust me, she takes stock of EVERYTHING. She’s the first to notice new veins, new cellulite, new freckles. She doesn’t need your keen powers of observation to alert her to the formation of newly busted veins that make her legs look like stubby road maps. All those flaws on her legs used to be the reason she refused to wear shorts in public, and that was back when her legs were pretty rockin’ (she just didn’t know it back then). Now, it’s so damn hot out and she’s so sick of suffering through swamp ass that she wears shorts no matter how bad her legs looks. And if you don’t like it, don’t look. You might as well just go for the jugular and ask why she’s getting so fat or how it’s possible that she can grow a mustache that’s thicker than yours.

Do not reach into the side compartment of her car door and ask why she’s been eating GU. Then, don’t follow that up with a lecture, no matter how good your intentions are, about how there are much better snacks out there better suited to her since she isn’t a marathon runner. Don’t explain to her that GU is simply a concentrated mix of calories and sugar, specially designed for endurance athletes, which she isn’t. And then don’t end with a nonchalant, “Just sayin’.” Of course she knows she’s not a marathon runner (or any runner), let alone ANY type of endurance athlete. She’s just been waiting for you to ask her why she’s getting so fat, so in an effort to curb that conversation, she went to the gym. Along those lines, she’s been trying to diet, probably through some program like Weight Watchers or Jenny Craig. Or if she’s really feeling desperate, she’s trying the Master Cleanse. In other words, she’s effing starving. All the time. Not that she has time to eat anyway, since she’s pretty busy working and/or taking care of the kids. Her body doesn’t seem to care, though, and seems to be hoarding body fat. Even so, she saw the leftover GU packet and decided it might help to keep her from passing out while walking on the treadmill since she was heading to the gym just before the child care center closed (i.e. she still didn’t have time to eat). Walking on the treadmill is hard for her right now, you know. It’s boring and tedious, and she hates being surrounded by young girls with no varicose veins and no cellulite. Or worse, moms that look as though they didn’t gain a pound in pregnancy– moms with perky boobs but without cellulite and varicose veins. Moms that don’t have to pick their wedgies while they work out or tug at their shirts to make sure their bellies are still covered. Moms that make them want to shrink back into a corner for letting themselves go so badly, but instead, they smile at them and compliment them for being in such great shape and pretend they aren’t sweating b@lls from the high-speed pace of 3.5 mph. Yep, walking on the treadmill is hard. It’s no training for a marathon, but the GU got her through the workout without the need for medical and/or emergency intervention.

Speaking of medical intervention, when your wife says that someday she’d like to have her boobs put back where they go–where they were before she became a champion breastfeeder–it’s really not a good idea, no matter how supportive you think you’re being, to chime in with, “You know, if you want to get your stomach fixed too, we can do that.” She knows you were trying to be nice. She knows that was your best attempt at telling her that you’ll make sacrifices to help her to feel better about herself. And she also knows you’re an idiot. Because just like with her legs, she knows that her once taut tummy is now more like a deflated balloon hanging around her waist. She knows that the stretch marks lining her belly make it feel more like Braille than the smooth skin you used to run your hands over when you two were still hot and heavy. She knows it, and she’s self-conscious about it, and she might even be ashamed of it no matter how many times she reminds herself that those scars are evidence of the beautiful lives she brought into this world.

You see, guys, to you, the commentary is harmless. On the surface, it’s just a benign question or simple observation. But to her, it’s a gateway to all of her insecurities, all the things she frets about when she stands naked in front of the mirror before her shower (if she’ll even look in the mirror), everything she loathes about herself when she’s in the fitting room trying desperately to find something flattering to wear for your big date night. She lives in this body that overall has served her quite well during her accomplished life, but that she still struggles to make peace with after all these years. There is a lot more going on in that pretty little head of hers than she shares, and a lot of it probably isn’t pretty. She might play tough on the outside, but the inside might still be a little bit raw.

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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. πŸ™‚

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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A Lot of Living

Today, for the first time, a stranger approached us and asked if Eli has Down syndrome. I smiled and answered her with an enthusiastic “yep,” to which she replied, “He’s perfect.” {{melt}}

Then, while I was changing his diaper, a woman took a keen interest. I assumed she wanted to ask me about his colostomy bag, but she didn’t. She might have wanted to, but she asked instead about his age, his name–the things that make him human, the things that emphasize his personhood over his diagnosis. She had a kind soul, this woman. I could feel it in her eyes. We all put out vibes, you know. I’m a big believer in that, no matter how crazy it makes me sound. Just think about it–we all know that feeling when a person comes around and our skin crawls. Bad vibes. But then there are the ones we’re drawn to and we just can’t quite figure it out. They make us feel peaceful. Good vibes. She had the good vibes.

Anyway, her granddaughter (well, I inferred it was her granddaughter, but I don’t really know) started watching, and it was obvious that his colostomy bag caught her eye. As pre-teens will do, she inquired, very matter-of-factly, about that “thing” on him. This never bothers me. I enjoy a sense of pride when explaining the hows and whys of Eli’s colostomy bag. And people have been kind; they’ve been interested, not disgusted. This young girl hung on my every word, fascinated by Eli, his condition, and his prognosis. She and her (presumed) grandmother then engaged in their own conversation, and I became a bystander for a moment. “It’s amazing what modern medicine can do,” they concluded.

Upon learning that he was born on Christmas, they insisted that he is a miracle. I agree–he is. I made no mention of his DS in this conversation, but maybe they picked up on it too. Part of me really wanted to blurt it out–and sometimes I do–because I love to see how people process that this baby they’ve just fawned over has an extra chromosome. I can see in their faces how their perceptions are jarred, and it’s a beautiful thing when they equate Down syndrome with all of the wonderful attributes they just bestowed upon my son. It’s like this tiny baby has the powerful ability to shatter stereotypes and challenge notions of Down syndrome. I like to believe that the next time they see someone with Down syndrome, they see that person differently–as a whole person and not a diagnosis. (What lofty dreams this mama has!)

And so, ironically, that was precisely the reason I made no mention of his Down syndrome–because one of the best pieces of advice I ever got was not to make it all about Down syndrome. Let it be a diagnosis, but only a diagnosis. Do not let it define my son. Do not let it take away from the fact that above all, he is a person first. Because Down syndrome doesn’t change the fact that he has feelings. That he loves and sometimes hurts. That someday he will have hopes and dreams. Down syndrome doesn’t change any of that any more than a diagnosis of anything else–strips a person of his humanity. Are there challenges and risks? Of course. But there are for any of us. And, as I read somewhere else once (although I don’t remember exactly where), between the beginning and the end, there’s a lot of living to do. (Take that in, will ya? For all of us, there’s a lot of living to do.)

And we did some of that today at Kings Island with our little family and some friends. It was a beautiful day–the weather was perfect, my daughter laughed and played herself into exhaustion, and my son absolutely LOVED the lazy river and the wave pool in the water park. We definitely got some disbelieving looks because of our tiny little guy with his seemingly giant infant life vest. But his giggles were worth every stare! And I know for certain they weren’t staring because of Down syndrome. They were staring because he looked like a red marshmallow with a hat. And it was damn cute. πŸ™‚

And as the woman and her granddaughter left, they showered us with more kind words. They talked with Evie as they packed up about how special she and her little brother are, they reminded her to take good care of him, and they wished us well with our little miracle.

I am brimming with gratitude. I have a fantastic little family, and I continue to meet people who reaffirm my faith in both God and the goodness of His people. I have a happy heart and life. is. good.

A few snapshots of my little ones, my heart and soul. I don’t have any pictures from today until my husband shares his with me–my stinkin’ camera was full. But these should convey why my heart is so full that sometimes I think it could burst. πŸ™‚

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This picture is not my handiwork. Many thanks to our new friend, Shelly, for taking this adorable photo!

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Green Light, Go!

To say my daughter is strong-willed is an understatement. She is fiercely stubborn, and she has been since she was an infant. (Sidebar: I have NO idea where she gets it…) She is doggedly independent, and in true preschooler fashion, she can go from zero to head-spinning-and-spitting-pea-soup-exorcism-style in 2 seconds flat. Fortunately, her tantrums are infrequent–she spends most of her time as a mildly ornery Scout Finch-type. She is typically charming and precocious, and her thoughtfulness rivals Ellen’s (more on that in another post).

But, today was an exorcism day. Ok, so the whole day wasn’t shot, but she did have a few minutes this morning when I thought I was going to need to summon a priest because my obstinate little darling was spewing 3-year year old threats and morphing into someone other than my child. I’ve learned to largely ignore her tantrums (and my husband is learning too), which works very well at home but seems to make people think I’m a lunatic for not “controlling” my kid if she goes into meltdown mode in public. Oh well.

Anyway, something hit me today–something so obvious that I am almost embarrassed to admit it. I have a master’s degree in education. Special education. Of course. How could I forget that? But aha! Surely I’ve got some tricks up my sleeve that I learned in teacher school. And why didn’t I ever think of these before??

And presto, just like that, I took a break from doing dishes and put my 6 years of higher education to good use. Voila. I give you Evie’s behavior card.

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This sophisticated device– fashioned out of a piece of paper, a clothespin, a Sharpie marker, crayons, and some curling ribbon–was 6 years of schooling, 5 years of teaching, nearly 4 years of parenting, and thousands of dollars in the making.

I am happy to report that it worked. At least for today since it’s new to her. Of course, it’s analogous to a stoplight–green indicates good behavior, yellow means she’s going downhill fast, and red is to be avoided. We decided that at the end of the day, if her clothespin is on green, she can have a small reward, such as an extra bedtime story or special treat (my goal is to limit the treats). If she gets to yellow, she has to help with a chore and follow directions to be moved back to green. Red is an automatic timeout in her room, and just like with yellow, she has to earn her way back to green. Oh, and because I believe that she should take ownership for her behavior, she moves the clothespin (when we tell her to).

And here’s some proof that it worked. (Disclaimer: there is no guarantee this will work tomorrow. I am not a complete idiot–I know preschoolers are an unpredictable species, prone to sudden changes in mood and behavior.)

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Here she is being threatened with a move to yellow if she doesn’t stop dumping Crayola bubbles (which are prone to staining–thanks, Grandma) on her pants. Notice that she has stopped engaging in the devious behavior. πŸ™‚

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This was taken after getting another warning, this time for dropping trou in the front yard. She pulled up her pants very quickly when she heard that kind of behavior would get her moved straight to red. (Another sidebar: I really can’t understand where she gets these exhibitionist tendencies…)

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Further proof–all Daddy had to do was say “yellow” when she wouldn’t hand over the contraband.

We only had to actually move the clothespin to yellow twice, I think. Sorry, she moved it; we told her it was time. She did end the day on green. And her time spent outside wasn’t all about being told “no.” πŸ™‚

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Evie had fun playing with her little brother, Eli. (Don’t mind my husband’s attire. He’s been working around the house all day, which is the only thing that can explain his lapse in judgment regarding his shirt.)

And just because he’s so stinkin’ cute, feast your eyes on this handsome baby:

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This goes down as another lovely day at the Dann house. Fingers crossed this behavior card is at least as effective as an exorcism. Now off to manage to dogs. One just brought me a ball and the other is playing with the Jumperoo (don’t ask)… πŸ™‚

Helicopter Mom

Today was Evie’a first day of swimming lessons. She did such a fantastic job and I am so proud of her!! I was really impressed with her instructors–they pushed her right up to the line without crossing it, so she was willing to try even though she seemed a little nervous a couple of times.

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That’s Evie sitting next to one of the instructors.

I was not, however, impressed with the other parents. I try really hard not to be bothered by what other people do. I try to mind my own business in situations like this, realizing that my way isn’t the only way and it’s not necessarily the “right” way. I try to avoid criticizing other moms because we women are so hard on each other anyway–we need to stand together, not tear each other down. And let’s be honest: I’m not a perfect parent. Far from it, in fact. Keeping that in mind, one of my mantras is “If they knew better, they would do better” (thanks, Oprah).

But I REALLY struggled today. I had to work so hard to keep a smile on my face and not let my mouth get ahead of me…Because there was this mom. A helicopter mom. It was obvious from the moment we arrived. This woman was there with a brood of kids. She was put together and very particular about, well, everything. A few minutes into the lesson, her son (who was obviously younger than the other kids in the class) started screaming. He was cold. As you can tell from the photo above, we were outside. He fought the instructors, cried, squealed. He was the only kid having a hard time.

His mother, hovering right over him, picked him up and plopped him back in the water. She did this a few times before admitting defeat. After the first time, I just kept thinking that this poor kid just wasn’t ready for swim lessons–that maybe he was just to young or not ready developmentally or whatever. I think it’s our responsibility as parents to recognize when that’s the case and accept it. We learned early during last fall’s soccer season that Evie wanted nothing to do with it, save for plucking weeds off the field and chasing her friends. We encouraged her anyway and got a kick out of watching her wander the field without the least bit of interest. I suppose we could have pulled her from the team, but she enjoyed being with her friends even if she wasn’t crazy about the soccer. My point is that we didn’t make a big deal out of it and we didn’t blame her coaches for her lack of enthusiasm.

So back to today…Rather than acknowledging that her son might not have been ready, this particular mom started telling anyone that would listen how upset she was the class was outside. It should have been held inside, she insisted repeatedly. Now, my daughter HATES being cold. She will go into meltdown mode in 10 seconds if she’s too cold, and it isn’t pretty. But she, as well as the other kids, never complained about the water. After all, the outdoor pool happens to be heated. And maybe I’m just some kind of genius, but since it is summertime, I fully expected the lessons to be in the outdoor pool. Not this mom. She went on and on about how “perturbed” she was (her word), about how the kids were too little for the kind of cold they were experiencing.

Enter another crying child. Turns out this one was hers too. She ditched her lesson and ran across the pool deck to her ranting mother because she realized she was cold too. I know it’s hard to imagine, but this little girl was also the only one from her class crying. This mom complained for the duration of the lesson. When we left, we found her at the front desk, complaining to the staff there and waiting to speak to someone higher up the chain of command. I was so irritated by all of this that at one point, I turned to one of the lifeguards and told her not to worry about it–the rest of the kids were having a great time. I know I should have, but I just couldn’t keep my big mouth shut.

And that’s not all. With 10 minutes left in the lesson, the big kids started to arrive with their parents. Let me emphasize that they were 10 minutes early. We arrived a few minutes early for Evie’s lesson, so I made her stand back with me and wait, watching while the other kids finished. This was Evie’s first lesson, remember? It’s not like I’m there everyday. So I just tried to draw on my knowledge of appropriate social behavior and we waited away from the pool. Not these kids. And not these parents. No.
They swarmed the pool with their parents right behind them. Some of the kids jumped right in and the moms parked themselves in front of those of us already watching our kids’ lesson. One woman literally stood right in front of me. I rearranged, which got her attention, and I (very politely) informed her that our lesson wasn’t over. She was apologetic, but still, I left with a handful of concerns. Oh, and one woman was disappointed that it wasn’t a parent-child class (which she had to interrupt Evie’s class to ask about) and then asked if she could still get in with her kids anyway. We’re talking about kids that looked to be about 8 years old. None of them seemed to have disabilities or delays. In fact, they all seemed eager to get in the pool without their parents. Make that a handful–in each hand.

So I want to know, what happened to common sense? And along those lines, what happened to common courtesy? I can’t blame the kids for their behavior–they don’t know any better–but I can blame the parents, who showed little regard for anyone but themselves. To me, this is about so much more than a couple of cold kids and a group of kids and parents without the ability to read social situations. This is about raising kids with an entitlement complex. This is about not teaching our kids to deal with things that might be uncomfortable or unpleasant. This is about being a teacher and seeing this translate to high school classrooms in the form of students that refuse to try anything that’s too hard and whose parents demand extra credit after their kids never lifted a pencil. This is about parents that do their kids’ work and try to bully teachers into changing grades.

We have a responsibility as parents to teach our kids that the world doesn’t revolve around them. We have to teach them coping skills and social skills. We have to teach them manners. And we have to teach them resilience. Ok, so the water is a little chilly. Now what? Are we going to let it ruin everything or are we going to figure out how to work through it? And if we can’t work through it, do we know how to excuse ourselves so we don’t take away from everyone else’s experience? Do we know how to accept things for what they are rather than blame others for things we don’t like or agree with? And if we don’t know when to back off and let our kids try some things on their own, how will they ever grow up to be independent and confident members of society?

I felt like calling the center this afternoon to express my satisfaction with the swimming lessons. I didn’t–my motivation was all wrong. I would have been doing it just to spite the woman that complained, and that’s not a spiritually or morally healthy thing to do.
Thankfully, Evie seemed to be oblivious–she just enjoyed being in the water and paid no attention to the stuff going on around her. I’m hopeful that tomorrow will be better, and I’m crossing my fingers that we’ll still be outside.