Tag Archives: Down Syndrome

One favor speaks a thousand words…

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(New to our journey? Click here to read my Lila’s birth story)

My husband has a friend whose daughter needed extra medical attention during her first few years. He tells a story of a time when their family was overwhelmed with the day to day details of caring for this sweet daughter and household chores got less attention. Suddenly, a few extra dishes in the sink went unseen and the laundry probably piled up a mile high. One warm, summer day, this man heard a familiar noise outside his house. In his overgrown yard, he saw a friend from church. Not a best friend mind you, but a comfortable acquaintance who knew of this family’s situation. He was mowing their grass. He was never asked to help or even told of that week’s particular struggle, but he was familiar with their story and the weight this family carried on their shoulders. So, he brought over his lawn mower and did what he could. Not necessarily a grand gesture, but one that brought tears to this father’s eyes. It was one less worry on his list, taken away by a friend who had no idea what it was like to walk in his shoes. But this simple favor showed he wanted to try.

Our days are often full, the calendar sometimes resembling a crowded reservation list in a newly popular restaurant. Every therapist appointment is worth it, and most doctor’s appointments are greeted with news of good progress. But life with any child is busy, and when you add parents with two full-time jobs AND a special need it can sometimes feel like there is no room for those daily tasks that keep a household running.

This morning we discovered that our new neighbor, who we’ve only met a few times, cut our grass last night. He may or may not know that Lila has Down Syndrome, he’s only met her a few times and for a few minutes. But last night, we pushed Lila in her favorite swing for a few extra minutes before bedtime while he mowed his own lawn next door. We waved to him but didn’t stop to chat. And sometime after that, he decided to take an extra half hour and do us a favor.

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Now maybe to him, it was just too frustrating to see our somewhat overgrown lawn any longer. Maybe he didn’t like how it made his property look. But regardless, this simple gesture made us both smile and be very thankful for one less task on the list of things that need our attention.

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It made me want to pass it on, to do something for a family that might need an extra moment to relax, or even to swing. What one small thing can you do today, to give someone a story they will tell for years to come about a simple act of generosity that left a big impression?

A Message to the Manhattan Moms Who See My Special Needs Child as a Disney Fast Pass

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(If you are new to our journey, click here to read my Lila’s birth story and be sure to check in on the beautiful and amazing life that has followed so far. Regardless of the sarcastic rant that follows, we are truly blessed!)

Dear poor, sad Manhattan mother who couldn’t bring herself to wait in line with the masses,

Navigating the exclusive and over-the-top world of New York City preschools and play dates must be too much to handle. Managing your household of nannies and maids and dog walkers along with your social calendar probably really gets you down by the end of the day. So why wouldn’t you want to hire a disabled tour guide to help you zip past the long lines at the happiest place on Earth?

Click here to read the New York Post’s Report on the Rich Manhattan moms who hire handicapped tour guides so kids can cut lines at Disney World.

The truth is, why should you wait? Why should families like ours be afforded any perks at an amusement park that draws thousands of people a day?

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(Disney gives these passes to families who include someone with special needs whether they are in a wheelchair or not. This way, you don’t have to tackle a 2-hour wait and multiple turn styles with a wheelchair or a child that has to work a little harder to wait without having a meltdown. Apparently these moms went through an underground service to “rent” the company of a special needs guide, so they could sashay to the special entrance too. Now let’s hope Disney doesn’t make it more difficult for those who really need it to get this accommodation because of the deplorable actions of those who want to abuse the system.)

To those entitled mothers, if you’d really like to enjoy the benefits that Disney affords special needs families, you should be sure to get the whole experience. Why not truly walk in our shoes for a couple of hours or even a day? While you are getting your nails done, we’ve had two therapy appointments and tried to squeeze in any semblance of a nap on the ride from one place to another so the second appointment isn’t a total waste. While you’re eating lunch at 5-star restaurants that take reservations, we are using 5 different therapeutic spoons to try and get our children to eat at least a few bites of age-appropriate, healthy food. Then we get to clean up the evidence of the first four failed attempts. During your afternoon Pilates class, we’ve waited in the doctor’s waiting room for an hour, gone over our insurance information twice while signing a new HIPAA form, waited again in the specialist’s office and listened to our children wail while they have blood drawn for the third time that month. While you are chatting with your girlfriends on the phone, we make three phone calls to three different therapists and case workers who help hold the key to walking sooner, speaking more clearly or filling out the latest round of state paperwork. During your long, relaxing bubble bath, we fall into bed exhausted and worried about what struggle we’ll encounter tomorrow.

So really, any small benefit that might make a vacation a little easier on us, should be afforded to you too, right? Our lives are pretty similar when you break it down. But I do have to say that I would like to thank you. You remind me that I’d rather work hard for a child seen as special, than live a life that is anything but. I’d rather fight for her than walk down Easy Street with you.

I hope you enjoy “It’s a Small World.”

Sincerely,

A Mother to the most deserving little girl on Earth

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(In the real world I know everyone has their own struggles, but this just burned my buttons!)

Lila’s a “Star Night”

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One year ago, I sat at Star Night, a benefit for Siskin Children’s Institute in Chattanooga.  My goal was simple: to meet Kenny Rogers. You see, years before, when I was only five or six, I started to notice the presence of a strange salt-and-pepper haired man in my house. Not my Daddy (he still isn’t grey), but a different, distinguished looking gentleman whose face was plastered everywhere.  Even on the inside of our kitchen cabinet doors, in a pose that can only be described as 1980’s classy.

My introduction to the one-and-only Kenny Rogers came at an early age in the form of make-shift karaoke sessions to “Islands in the Stream” and “Coward of the County.” I was, weirdly, just as in love with him as my Mom seemed to be. So when I found out my station had tickets to Siskin’s Star Night and Kenny was the headliner, I was in.

That night, I met Kenny (stretched face and all).  He even commented on my 6-month pregnant belly. I told him if we didn’t already have a name picked out, I would have considered McKenna.

But Mr. Rogers wasn’t the only person I was introduced to that night.  For the first time, I heard of 13-year-old Anna Frierson and her place on her middle school cheerleading team.  Anna has Down Syndrome and is a graduate of Siskin’s Early Learning Center. A few weeks later, I met Anna and her parents to do a story for Newschannel 9. I knew everyone who saw the piece would fall in love with Anna just like I did.   Because of her determination, her spirit, her easy way of fitting in with every other girl on the sidelines. Anna was making herself at home in a spot where no other special needs student had before in Hamilton County.

That night, Anna’s father told me, “We never let any doctor’s diagnosis define our daughter.” I could see the love in his eyes for Anna, his pride.  Little did I know how I would look back on that day, that meeting, and realize it happened for such a special reason. At this moment, Down Syndrome was only the subject of a story to me. A reason to admire the strength of another family. I had no idea, three months later, it would be my reality.

I told that story to introduce this year’s Star Night Video.  I stood in front of a few thousand people and introduced them to the light of my life. But, as it has so frequently in the past 8 months, it didn’t come without tears.  And when I choked up, and told the black-tie audience that I was sorry for getting so emotional, I felt a hand on my shoulder. It was my sweet husband. He told me later he felt like he was being pushed out of his seat, that he couldn’t sit still while I cried on stage.  He held my hand while I finished, and everyone got to see the reason we were there.

After the crowd saw that video, they donated another $40,000 to Siskin Children’s Institute.  I like to think that my Lila helped write a few of those checks.

As the night went on, I met so many wonderful families who shared their stories with me. Many came up just to say that they had been in our shoes, and wouldn’t change it for the world.  It reminded me that whether we are on the stage in front of a crowd decked out in sequins and tuxes, at the grocery store or on the playground, we are not alone on this journey. Someone else knows our pain, our struggles, our pride, our happiness.  As I said to the crowd that night, sometimes life throws you a curve ball, and you just have to adjust your swing.  And you can STILL knock one out of the park.

We sure did.

Banished to the Bathroom…

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Let’s just get it out there.  Being a Mom can be a dirty job.  You have to deal with pee and poop. A LOT. That’s even AFTER you figure out that those swimmy diapers rip off on the side so you don’t have to rake poop down your baby’s legs at the pool (trust me, it’s messy). So, after all that, who wants to spend more time in the bathroom than you have to? Not me, but I’ve noticed that’s where mothers end up, though not by their own choice.

One of the stipulations of the Affordable Care Act, that just went into effect recently, forced employers to provide a place for nursing mothers who returned to work to pump.  A private place that is NOT a bathroom. What’s the big deal with pumping in the bathroom you may ask? Well I have become somewhat of an expert. These are all the places I had the “pleasure” of pumping when Charlie, my Dad and I went to Alaska recently.

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I was shocked to see some of the weary and startled faces I encountered when I had to ask people the best place for nursing mothers to find a little privacy.  The worst? The customer service desk at the Dallas Airport. She looked at me like I literally had two heads (instead of just two boobs that have been working overtime the past 8 months to nourish my child).  So a few times in those 12 hour travel days, I ended up in the family restroom at a couple of different airports.  For twenty minutes I sat there, perched over the bench that is only supposed to hold your purse so I didn’t have to sit on the toilet, while other people knocked on the door and the smell of dirty diapers radiated from the nearby trash can.  Not a pleasant experience.  The Alaska Railroad was a lot more accommodating, thank goodness. On that 5 hour train ride, the conductor personally walked me up and down the whole train, until we found an employee bathroom with a working electrical outlet that would power the pump.  Even the 22 year old summer employee at Kantishna Roadhouse, the only lodge inside Denali National Park, hid his smirk pretty well when he suggested I use an employee cabin.

I realize that traveling, away from your baby, while you are still breastfeeding, is a challenge that I chose to take on in order to experience a once-in-a-lifetime trip with my father.  But was it really necessary to spend all of that time in a “foreign” bathroom, just to feed my sweet Lila? Can’t we all just get over the giggle that seems to go hand-in-hand with the image of what breastfeeding/pumping entails, and be a little more accommodating to women who sacrifice a lot of time to do the best they can by their baby?

I’m not even going to go into all of the strange/somewhat offensive responses I got when I had to call a dozen places in Anchorage, Alaska to find one that was willing to help me ship my breast milk overnight so my supply wouldn’t be wasted.

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If you’re ever in Alaska, be sure to visit the New Sagaya Market, they’ll take extra care in shipping both your freshly-caught Salmon and your breast milk :).

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I am lucky that my employer went above and beyond when it came time for me to come back to work, suggesting a private, unused office that was out of the way for my two 20-minute sessions a day.  I know most people aren’t that lucky, even though it’s now federally mandated that they be. Some will still be banished to the bathroom.

The same is true for moms who find themselves breastfeeding in public.  No one WANTS to whip out a boob in Target, trust me. But sometimes your baby needs to eat and you need diapers AT THE SAME TIME! So don’t give them the stink eye if they’re sitting in the chair by the fitting room, trying to make sure they don’t flash unsuspecting shoppers.

All any of us are trying to do do, whether we are pumpers or breastfeeders, is just make it through the next feeding with a happy baby. 

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We shouldn’t have to spend 3 extra hours a day in the loo just to make sure we get there.

I Get By With a Little Help From My Friends…

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There is something about the first minutes, hours, even days after receiving a diagnosis for your child that makes you feel immensely alone.  Even with your shell-shocked husband and half a dozen family members standing beside you.  For me, it was this fear that I would never again feel “normal.” That all the play dates and dinners and outings I had envisioned for Lila’s first years somehow wouldn’t happen because she has Down Syndrome.  It sounds silly now, but you never know how you will feel when your world gets turned upside down.  I thought that our little family would be on this journey alone.

(A little background music :))

Boy, was I wrong.

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This was our third night in the hospital.  Karen, Tiff, and Erin came to visit and we walked Lila through the hallways on the rolling bassinet they make you push when you want to take your newborn out of your hospital room.  We talked about all of our kids meeting for the first time, how often they would play together. It was the first glimpse I got into how many people would love our little girl almost as much as we did.  Without any obligation… just because they wanted to.

Right away I learned that little Lila’s “fan base” was growing by the minute.  Best friends came from far away to meet Miss Lila.

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And those who haven’t met her yet, celebrate her victories with just as much excitement as we do.

She had her first “play date.”

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She visited Mommy’s friends at work.

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Some of our best friends started to kick US out of the house, so they could hang out with her (and we could go see a movie :))

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It’s amazing the feeling a Mother gets when she sees someone hold her child, and love her almost like their own.

“Normal” is a complicated word. And though it may mean conforming to a standard, there’s no one definition.  Each family creates their own normal.  I think that, at first, I was so scared our normal would be so different from everyone else’s.  What I’ve learned is that, because of all the people who love my Lila just the way she is, her life will be so much more than the typical we so craved the first time we learned she has Down Syndrome.  How can it not with best friends like all of this?

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What Your Momma Never Told You About Becoming a Momma…

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Somewhere between here…

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And here…

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A lot of shit happens 🙂 I have a few friends about to make this leap, so I thought I’d fill in the blanks, from my limited experience.

(If you happen to be a single guy who has no children, just stop here. I can’t imagine you’d find this amusing.)

*** Everyone is Scared They are Going to Poop on the Table.

When we were in our birthing class, a shy guy raised his last in the last few minutes of class, red-faced, and finally asked the question on everyone’s mind. The delivery nurse who was teaching the class smiled and said, “I”m glad you asked.” She said it happens a lot, but 85% of the time no one besides the nurse and doctor even realize what’s going on.  Apparently, they just clean it up without saying anything and no one “up north” is the wiser. I never had to go through this experience since Miss Lila seemed to want test the waters of this world with her toes (she refused to move out of the feet down position) and we had a C-section.  But that doesn’t mean I didn’t have my own “memorable” experience with that bodily function. Let me just say that going to the bathroom for the first time after having a baby was almost as bad as HAVING the baby itself. Just sayin’. The good news? It doesn’t last near as long as childbirth.  The bad news?  Your family is still probably gathered in your hospital room just a few feet away. 🙂

*** Everything Doesn’t Always Come Up Roses.

We fully expected to have the birthing experience right out of a magazine. If you’ve followed our story at all, you know we had quite the shock when we found out Lila had Down Syndrome just a few hours after her birth, while a photographer from my TV station waited right outside the door to capture the new family of 3 for the evening news. (Catch up here.) What we went through, obviously, is not the norm. Lots of babies spend some time in the NICU, or don’t take to breastfeeding right away, or end up that cute shade of yellow that means they need to spend some time in the baby “tanning bed.”  My point is, just because there’s a hitch in the road you didn’t expect doesn’t mean the way your little one comes into this world is any less special.  You’ll still look back and be so grateful, whatever the circumstances. Trust me, I know.

***Get Ready to be Judged. A Lot.

Every Mom (and Dad and non-parent) has an opinion about how to birth/raise a child that is NOT their own. My doctor told me our best plan of action was to have a scheduled C-section. I STILL had people raise their eyebrows at me and say “Uuuummmm, are you SURE that’s what you want to do?” And that’s just the beginning. To schedule or not to schedule, to swaddle or not to swaddle, to rock to sleep or not, all seem to bring that same raised eyebrow look from someone. I think Lila’s good friend Ally says it best…

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And then one day, it happens. You catch yourself looking at some other Mom while YOUR eyebrows start to inch toward the sky. You can’t BELIEVE they don’t schedule/swaddle/rock, or fill in your own blank. For some reason, it’s just become part of our culture to make Mother’s feel badly about their choices, and to be honest, there’s enough Mommy guilt inside of each of us to last a lifetime. We don’t need any help in that department.

***Baby Boys Don’t Own the Rights to Peeing on Mommy (and Daddy)

It was, perhaps, what I felt was the best-kept secret of raising a little girl.  Here I was, a new Mom of barely a week, getting ready for one of those middle-of-the-night feedings, when my daughter peed ON THE WALL!  In a rookie-Mom move I took the dirty diaper all the way off, folded it and threw it away before putting the new one on.  And my little “angel” brought her knees to her chest, swayed side to side, and peed straight up in the air and all over the pink taffy colored walls of her “perfect” nursery, even spraying the mirror above her changing table. This experience was quickly overshadowed a few weeks later when the same thing happened again, but pee was not the ingredient of choice this time. (What can I say? There’s a lot of dealing with poop in motherhood.) Her method was the same, but the result was that yellow-colored newborn poop all over her little WHITE Christmas tree beside her changing table (picture taken before the offending incident.)

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I woke Daddy up for that one, because I just couldn’t go through that moment alone!

***Surround Yourself With People That Build You Up, Not Stress You Out

Whether it’s your pediatrician, your Mom, his Mom, or one or two of your Mommy friends, some people just will NOT get what you are doing. It’s not the end of the world if you have to feed your baby formula, or with a bottle, or at 2 hours instead of 3.  Some people will scowl at those dirty dishes in your sink or the pile of laundry that needs to be folded.  Do whatever it takes to limit your time with the people that make you feel bad about yourself, it’s just not worth it.  (And if it’s your pediatrician, for goodness sakes find a new one.  Their job is NOT to make you feel like you deserve the worst mother of the year award.)

*** Get Used to Eating Your Own Words

I looked forward to being a Mom decades before I actually became one. And I just assumed I had it all together. I had a lot of thoughts that began with “I will never…” The truth is, someday you probably will. Whatever it is. Change your child’s diaper in the middle of Target. Did it. Breastfeed in a public place. Did it. Have your newborn out in public past 9 pm. Did it. Go to the bathroom AND wash your hands, all while holding a sleeping baby (I know, I know.) Unfortunately, did it. Clean off the baby’s passy in your own mouth.  Haven’t done it yet but probably would if the situation was desperate enough.  And the list goes on and on.  The truth about motherhood is we’re all just trying to make it through the day without seeing this face…

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while maintaining the same amount of hairs we started with. Sometimes desperate times call for desperate measures.  No matter how much we thought we would keep our cool before we made it here.

***Comparing Can Only Lead to Problems.

Lila is 5 and a half months old and, if positioned in the right way, can sit by herself for a few seconds.  See?

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Some babies do this earlier, some much later.  Lila sees an Early Intervention Teacher once a week, a physical therapist once every three weeks, and a feeding therapist/occupational therapist once a month.  They are amazed at her progress. But in the days of Facebook, it’s easy to get a little discouraged even when you’re beaming with pride. I try to remind myself that, Down Syndrome or not, someone will always be a little bit ahead of you. But the same holds true when you look behind you. Ten years from now, it won’t matter when our babies first crawled or sat up or said their first word. Shoot, we probably won’t even remember. So, I’ve decided to try to celebrate instead of comparing. But sometimes I still forget.

We’re all just trying to keep our heads above water. It’s a hard job, no matter what country we live in, or what parenting philosophy we subscribe to. At the end of the day, we all figure out what’s best for our little families. And, who are we kidding? A few years from now we will look back at ourselves and laugh.  A lot.

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When you say nothing at all…

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New to our journey?  Start here…

It’s easy to know what to say when you are presented with life’s best moments.  When things are good and easy and predictable.  When someone gets a new job, or gets engaged or married or has a baby, finding the words to say isn’t hard.  Sometimes all you need is a hug or a smile, and your friend can feel what’s in your heart.

But when life doesn’t turn out exactly like you thought, it can be more difficult.  For everyone.

When we found out Lila had Down Syndrome four and a half months ago, just three hours after she was born, it was hard to know what to think, let alone say.  I will always remember the first words I said to my husband… “She is ours. We will love her.” I didn’t think those words before they came out of my mouth.  I just felt them. But almost immediately, it became very obvious that lots of other people had NO IDEA how to react to the news.  And who could blame them?  In life’s most difficult moments, most of us can’t find the right words.

But in the months since, I have heard some of the best words of encouragement that, I hope, will help me when I am faced with a friend who is going through an unexpected journey in life.

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Some of the best….

On one of her many visits to the hospital, one of my very best friends cried with me, held me tight and said, “Lila was sent here, to you, to teach us all.”  It was one of the first times I didn’t feel like we were alone in this unexpected news. We might be dealing with the shock in the most intimate way, but so many others who already loved Lila, were dealing with it in their own way, too.  And beside them, I felt better.

That same, sweet friend told me “Whatever you think and feel, it’s ok.  It won’t always be pretty, but you can’t blame yourself for those thoughts.”  When you’re trying to wrap your head around something like having a child with special needs and the twist and turns it means for the path you had in your mind, you can think some pretty unexpected things.  And feeling guilty down the road for those thoughts, only makes it worse.  You can’t help how your mind reacts to something like that, and you should NEVER beat yourself up about it.

I am blessed to have a family member who struggled right along side me when Charlie and I were dealing with infertility for almost two years.  She called from out of state when Lila was born and said, “I don’t want to say I’m sorry, because I ‘m not.  I know your not disappointed IN her, but FOR her.”  I felt, for perhaps the first time, that someone captured what was in my aching heart.  I didn’t yet know how strong and awesome and awe-inspiring that 6 pound 4 ounce baby would come to be, and in fact already was.  For that moment, still hooked up to IV’s and barley getting the feeling back in my legs, I knew this wasn’t what I had pictured the day before when I quadruple-checked my hospital bag.  And she was very right.  We are NOT sorry.

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An awesome co-worker who has a brother with special needs said to me, “His life is no less important than anyone else’s.”  I thought, “Yes! This is how I feel about my Lila!”  And it has only rung more true as I get to know this strong little girl that I get to hang out with every day.

In the months since, so many friends have reached out to us to tell us how inspired they are by our story and by our Lila.  Never hesitate to offer that encouragementton the families you know with special needs kids.  It often comes on those days when I am overwhelmed and close to feeling like a failure of a Mom.  You never know how a few simple words can lift someone else up, by a thousand miles.

It may be easiest to ask, “How are you doing?” but when you are juggling countless therapy appointments, hours of research on the internet of new feeding or PT techniques, or just the mounds of laundry and bottles that come with being a new mom, it’s easy to brush that question off with a quick, “Fine.”  I find the most comfort in those specific questions.  Like, “What is Lila working on in therapy this week?” or “How has she surprised you most lately?”  Not only does that make me feel like that person really wants to know how we are doing, but it feels good to be able to share without fearing that I am overburdening someone else with therapy talk.

Now for some of the worst…

Don’t tell me my daughter breaks your heart.  Even if you have the best of intentions, which I understand most people do. That’s certainly how I might have felt when I first heard the words Down Syndrome in the hospital room that was supposed to be where I spent the best day of my life.  But now that I am 178% in love with my daughter, extra chromosome and all, hearing that doesn’t feel good.  I know you mean well, but it takes me back to that moment.  And it makes me think that it’s all you see when you look at her.  And I now know with every ounce of my being that she is SO MUCH MORE than that.

Don’t say “She doesn’t look Downsy at all!”  I know what you mean.  You are trying to say she is beautiful. And, trust me, I agree. Who wouldn’t love THIS face?

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But that IS NOT the way to get your point across.  She is gorgeous because of who she is, not because of how much or little she resembles other kids with a similar diagnosis.

And finally, don’t say nothing at all.  There are a few people in our lives, and only a very few, that have withdrawn from us since Lila’s birth.  Maybe they are uncomfortable or don’t know WHAT to say.  But distancing yourself from this miracle that we love so much is not that way to go about it.  Sometimes it can get hard, but hey, life is messy.  My sweet Daddy has told me countless times over the years that life isn’t fair.  And he’s right.  But it’s also sometimes the sweetest in the moments just after we come to that realization.  Don’t desert those friends or family members who find themselves in this life.  One day, they will need you more than you will ever know.

I think my point is, it’s hard to bring up life’s difficult topics.  It’s hard to say your true feelings.  Often, it’s easier to talk about the weather and pretend like nothing is wrong or different or difficult.  But I truly believe if you stay silent, you are letting an opportunity go by to ease someone else’s fears or take a little weight off their shoulders.  Because the most important thing you can say to someone who has just learned that their child has any diagnosis, is that you will be there right beside them, whatever the need.  It takes a village to raise any child.  Our children just need a village full of people with even bigger hearts.  People like the ones that help lift us up when we need it the most. And for their words, I am so thankful.
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