Category Archives: Baby

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!)

An Overdue Letter to Lila…

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What a whirlwind few months we’ve had at the Milburn Manor! One of the most exciting and memorable days was, of course, Lila’s first birthday!  When we found out her birthday was 12-12-11 we knew that her first big celebration would fall on a day almost as special as she is, 12-12-12! With a few months of planning, and great help from Lila’s biggest fans, we pulled off a fun 12 Days of Christmas themed party, and even had a special guest stop by!

Every verse of the 12 Days of Christmas was represented…

Here’s 12 Drummers Drumming (favors for all the boy guests), 10 Lords a Leaping (crowns worn by the grandfathers of course!) and 4 Calling Birds (Angry Bird crackers who are trying to pick up some ladies)

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5 golden rings (Krispy Kreme donuts), 7 swans a swimming (taking a dip in the bathtub), and a super cute cake!

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We had our own turtle doves…

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And you can’t forget the Piper Piping or Maid a’ Milking…

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And the guest of honor, the Partridge in a Pear Tree!

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Of course there was singing,

But who would have guessed sweet Santa would stop by!

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It was an amazing day with so many people surrounding Lila who love her!  We couldn’t ask for anything more!

And then, just two weeks later, it was time for Lila’s second Christmas.  But when you count my still drugged-out haze after having a C-section the year before, I kind of count this as my first as a Momma.

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Definitely the most memorable gift of all, after months of teething, Lila’s first tooth popped through on Christmas day, with four more to follow on its heels.  Finally, an explanation for all the gnawing!

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Just a few days later, we had a scare with my Daddy’s heart, when he suffered a heart attack.  We were again reminded of how each day is a precious gift.  When you have a child, your parents’ love becomes even more important.  For their advice, support and most importantly friendship. Suddenly you realize how hard it was to raise another human being, so you’re that much more grateful for the people who didn’t give up on you along the way. Lila’s “Paw” may still be on the mend, but we are with him every step of the way, even in our fashion choices 🙂

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Lila is growing stronger every day!  Learning to stand, which she loves…

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still working on crawling, which she tries the most when she thinks no one is watching…

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But the biggest change of all, if it’s possible, our little girl’s personality is getting even sweeter!  I’m amazed by her each day and am so thankful to be her mother.

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I’m constantly reminded that even though you don’t get to pick the road your life follows, the best joys often come from the places you once feared.  The ones you now can’t imagine your life without…

 

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.

I don’t need easy, I just need possible…

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There is a sort of survival mode that kicks in the day you find out your child has some sort of diagnosis that you never expected.  For us, that moment came the same day we got the final test results from Lila’s pediatrician. The day we knew that Down Syndrome would become part of our life-long vocabulary. Your first feeling is disbelief. The second, fear.  And for me, the third, was a desire to jump into action. To figure out how to make the best of the situation you never thought you would find yourself in.

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Lila-One Day Old

When Lila was a little more than 24 hours old, Charlie left the hospital to go home and take a shower.  On his way, he stopped at Siskin, a Chattanooga-based learning center that specializes in special needs children to find out if they had a spot for Lila. We were both committed to doing whatever we could for our new little girl.

Right away, I discovered the reading about the genetic qualities of Down Syndrome did nothing for me.  Those descriptions, as well as our visit to the geneticist one week later, only held percentages and statistics of what Lila, in their opinion, would never do.  I am not interested in that nonsense.  This doctor met my child for 3 minutes. How could she know what her life would become?  So I started scouring the internet for new therapies and early intervention methods.  I would not wait for a referral for TEIS (Tennessee Early Intervention Services). I called their office and set up an appointment.  I did the same when I hadn’t heard from the therapists who had been assigned to Lila.  I know there is lots of paperwork that comes with state-funded programs, but I refused to sit back and let that keep Lila, and her Mommy, from getting to work in the first weeks of her life.

The first thing we incorporated into Lila’s daily routine was the practices of oral-motor placement therapy. Basically, the idea that in children with low tone, which usually comes with DS, you have to train and strengthen their jaw and tongue muscles through exercises and eating methods, to help with their speech clarity later in life.  We feed Lila sitting up with Drop-In liner bottles (Hello, 1982, right?) which makes her jaw muscles work harder and get stronger.  It also helps keep fluid out of her inner ear, warding off ear infections. A few months later, we started incorporating pre-feeding exercises.  A short routine we go through before Lila eats solids.

As you can see in the video, she thinks they are so much fun!

Lila sees an Early Interventionist from Siskin once a week.

Beth getting down on Lila’s level.

The first time we met Beth, she said, “Lila, we are going to be best friends.”  I knew I was going to like her just fine.

Kilbrey, Lila’s physical therapist, comes to our house once a month to teach Charlie and me how to help Lila reach her next milestone.

Kilbrey helping Lila strengthen her core muscles on the ball.

She’s already helped Lila learn how to roll from tummy to back and back to tummy.  See?

Now, we are working on sitting up and getting into the quadruped position for crawling.

Lila getting ready to crawl

We also see a feeding therapist once a month to make sure that Lila’s first introduction to solid foods lays a good foundation for her eating skills in the years to come.

Lila learning to drink from a cup

We’ve learned that “sippy cups” are a four-letter word for kids with DS, so Lila is learning to drink from a big girl cup and soon, will start with the honey bear. The muscles you use when you drink from a straw are so important for speech and the honey bear encourages that movement instead of the suckle kids use when they drink from a sippy cup.

In those first days after Lila was born, I was so fearful of the months and years ahead.  I thought they would be full of scary days and sad times. Boy, was I wrong. I love being able to take part in Lila’s therapy and learning more about how to teach her take the next step in her development. I’m even taking a 12-hour DVD class that therapists use to become certified in Oral Motor Placement Therapy.

My advice to anyone just starting out on a journey similar to ours… you can do it. Not because you have to, but because you want to. Because to our little Lila, we WILL make all the difference. I’ve said this to myself so many times since Lila was born… “I don’t need easy, I just need possible.”

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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