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Before you say “Special kids are only given to special parents,” READ THIS:

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I. HATE. THIS. PHRASE.

Now I know it is said by some of the sweetest, well-meaning people with hearts of gold. Never could they imagine the way it makes me cringe, the tiny letdown I feel every time I hear it.

You see, I’m not special. When I hear this, what is says to me is I’m different than you. That my family is separate, somehow better prepared or in possession of a secret code to take this journey. And that is totally not true.

I felt the same feelings that you would when I heard the words Down syndrome (not once but twice). I was scared, shocked, momentarily lost. I questioned myself, what I had done to get here, whether anything would ever feel “normal” again. I was not handed a manual. I grasped at tiny pieces of information at a time, scared to death of overwhelming my fragile heart. I was not special, I was afraid.

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I think, while people mean this as a compliment, a tiny subconscious part of them is saying, “I know I couldn’t do it.” Maybe you don’t think you have the patience, the grit, the strength.

But I’m here to tell you a secret that I’ve learned… yes you could, and you would. You would fight for your child in situations that, a few years before you didn’t even know existed. In IEP meetings, in phone calls to the insurance company, in emails to dance companies that don’t think your child “would be a good fit.”

And there are parents out there who have amazing, deserving kids with a rainbow of different needs that don’t try. That end up in the email at work at my news station, that don’t find the good in the sometimes challenging. That give up or have their children taken away because they don’t, or can’t, care for them like they deserve. Still think they’re special?

We are no different than you. When I envisioned my family years before they were a reality, I didn’t picture 140 chromosomes between the group of three. When we got pregnant with our third, due in March, I certainly didn’t think I would hear the words “we are dealing with Trisomy 21” again after taking that blood test.

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But you know what I did? I cried. I felt that ache in my stomach that felt off. I worried. And then I realized that having a baby is not about making your life perfect, it’s about giving them life, the best one you can manage. And that doesn’t make me special. That makes me a PARENT. That makes me a person who is dropped off in the middle of this island we call life and told to SURVIVE. I am the person who chooses to see miracles when others see hurdles.

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Of course I try my hardest… most days. I’m not an asshole. I’m exhausted sometimes, and totally fulfilled others. Scared of tomorrow on occasion, and completely happy with today most of the time.

What should you say? “You’ve got this,” “I’ll be there every step of the way,” “This baby will be so loved,” “I am so excited to meet him/her!” There are so many options. My favorite being, “Can I come to your house and wash your dirty dishes so you can put your feet up for while?” (Yes, by the way!!) And it’s OK to feel a little awkward. It’s normal. But an offer of support is always better than a cliche.

So I’m not special. I’m just like you, on the same lake, in a different boat. And if you ever find yourself in my situation, you’ll see too… all you have to do is try more often than you give up. And cut yourself a little slack. And never, ever say “special kids are only given to special parents” again.

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Mommy goes to Washington: the day I took Lila’s story to Capitol Hill

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**New to our story? Catch up here!

What is an advocate? A person who tirelessly fights against adversity? Someone who yells and screams and kicks and, through sheer will, never backs down? Maybe.

But I believe a true advocate is someone who is not afraid to tell their story. Even the hidden parts that social media often doesn’t see. The details that you leave out of the conversation with your co-workers. The last whispers of reality before you drift off to sleep.

I didn’t sign up for this role. When the nurse at the hospital told me that my first-born had “some soft signs of Down syndrome,” I didn’t rejoice and think of all the people I would get to meet because of Lila. I hunkered down in my little new reality and slowly changed my thinking from “Why us?” to “Why not us?” And when I came out the other side, I was ready to take on the world. The r-word sayers, the school segregators, the starers. Literally EVERYONE who was not on-board with the building the best world for Lila. And then I quickly found out how exhausting it is to fight that battle yourself. In person, in your mind, on social media.

So I came to this conclusion: you fight when you have to, you calm yourself down when you can, and you ALWAYS, ALWAYS tell your story to everyone that will listen.

And you know who listened yesterday? A freaking Congressional sub-committee. For two years, the Global Down Syndrome Foundation has been working to get Congress members to listen to the challenges and shortfalls of the lack of medical research for conditions that affect the roughly 300,000 people living with Down syndrome. A number that doctors say is growing as the birth rate in America increases. And two weeks ago, they got the word that it was on! So the scramble began to find mothers and fathers and brothers and sisters to show up in D.C on a few days notice and represent the families across the US living with a family member with DS.  We would meet with our Congressman or woman before the hearing and tell our personal stories. Show pictures of our amazing kids. Talk about how much they are accomplishing, and how more research would only increase those celebrations and opportunities, and their quality of life.

We met with the Global Down Syndrome Foundation crew at the Capitol Club to debrief on the importance of the hearing. Families from 11 different states made the trip to D.C.

Michelle Whitten is the co-founder and president of Global and does amazing work from Colorado for all of our families. Her daughter Sophia has DS and her family mobilized after her birth, bringing together some of the leading experts in the field and supporting medical research that has sadly been forgotten over the past few decades.

After meeting the other families, we headed to the Rayburn Building to meet with our local Congressmen. I was so lucky to have my good friend Kathryn Lewis with me. She’s the former president of the Chattanooga Down Syndrome Society and the mother of Sarah Jane, one of Lila’s good buddies.

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We met our Tennessee Congressman Chuck Fleischmann from District 3. We told him about Lila and Sarah Jane and all of the amazing things they are doing. And our fears for their futures because of the lack of research through the National Institute of Health for conditions that they may face as they age, specifically Alzheimer’s.

Fleischmann is on the Health and Human Services Appropriations subcommittee. On October 25, this group heard testimony from 2 panels. Rep. Pete Sessions (TX), Rep. Cheri Bustos (IL), and Rep. Cathy McMorris-Rodgers (WA) all have extensive knowledge about Down syndrome. Representatives Sessions and McMorris-Rodgers have children with DS and have been tireless advocates for awareness and other issues relating to this population. Rep. Bustos is the co-chair of the Congressional Task Force on Down Syndrome. In the hearing, she said, “while National Institute of Health funding has seen tremendous growth over the last 20 years, the funding for Down Syndrome research has remained relatively flat… With a stronger commitment from Congress to support Down Syndrome Research throughout the National Institute of Health, we could be even closer to solving the great health problems of our time.”

On the next panel, Michelle Whitten and some of the leading doctors in the study of Down syndrome. Dr. William Mobley who is the Executive Director for Research and Treatment at the University of California-San Diego and Dr. Joaquin Espinosa. He is the Executive Director of the Linda Crnic Institute for Down Syndrome. The work they are doing is amazing and could mean so much to not just people with Down syndrome, but the general population. Dr. Espinosa says 1 in 4 people in the world will die from some form of cancer. That’s not true for people with Down syndrome. It is virtually impossible for them to get tumorous cancers. So there is something on that 21st chromosome that affects the growth of those specific diseases. If doctors can figure out the genetic key to unlock that code, can you imagine what that mean for everyone? The opposite is true for Alzheimer’s. Almost all individuals with DS will show some signs of dementia by the time they are in their 40’s. Dr. Espinosa believes this could have something to do with an overactive immune system but they can’t tell for sure until they research this further. That’s what this day is all about.

And then came Frank.

Frank Stephens is a self-advocate. This is how he described that to the members of Congress. “Just so there is no confusion let say that I am not a research scientist. However, no one knows more about life with Down syndrome than I do.” Frank sometimes spoke with a slight stutter. Some of his words were a little difficult to understand. But they heard his point loud and clear. Frank delivered what four different Congressmen and women described as the most moving testimony they have EVER heard in a committee hearing room. Frank told them, “Whatever you learn today, please remember this: I am a man with Down syndrome and MY LIFE IS WORTH LIVING!”

Listen to his amazing opening statement below:

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And then a few things happened. People cried. Everyone clapped. And minds changed. I can guarantee you some of the people in that room, no matter where they sat, did not expect that from Frank. But Frank brought that room to their feet and everyone that heard him, whether there in D.C. or later online, would never be the same.

I know I certainly won’t You see, even if you live everyday with this kind of amazing…

there are still scary moments. What will their future be like? What happens after I am gone? Will the world be kind? How many of these unknowns can I control and how much is out of my hands. But then I heard Frank. And I am reminded of the possibilities I preach to everyone else about. The limitless future, the hard work I know we can conquer, the other people that are working hard toward the same goal.

And then I hope. Hope that the people sitting across the committee room from me that day, felt the same thing. That they will take on this fight with us. That they will not forget the hundreds of thousands of people living with DS and the people who love them after the applause is over.

That is where you come in. You don’t have to be in Washington D.C. to advocate. You don’t have to tell your story to a Congressman. You can tell your neighbor, your Facebook friends, your mailman. You show the world that people with Down syndrome are living extraordinary lives that matter. That are just as valuable as those fighting diseases like MS and cancer. That research is important. Not just for them, but for all of us.

They called my Lila and the people whose karyotypes look just like hers a medical gift that day, for all the mysteries their genetic structure might help to unlock.

I think they are wrong. I think they are a gift to the entire world.

 

***Want to share your story? Learn how here in the advocacy section of the Global Down Syndrome Foundation website. 

 

 

 

Faith lasts a lot longer than fear: meet the newest Milburn

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Hey guys,
My name is… well actually I don’t have a name yet, my Mommy and Daddy say they are working on that. I’ll be here to meet everyone in early March, and I’m so excited! I already feel so loved and I haven’t even met my first friend! Mommy and Daddy want you to know that I’m bringing with me something special, the same chromosomal architecture that makes my sister Lila a little more amazing. They’ve been asking themselves a lot of questions lately, and to be honest, even shedding a few tears. Mommy says there’s nothing quite like going through the biggest surprise of your life… twice. But here’s the thing, just like five years ago, they aren’t sorry. A little angry, a lot less scared, still worried… but not sorry. You know why? Mommy says she knows now that Faith lasts a lot longer than fear. That she has an everyday reminder of how sometimes the path you didn’t choose can turn out even more beautiful than the one in your mind. True, this doesn’t happen every day, and there’s no real reason anyone can point to that explains why our family is here. But Mommy and Daddy are sure I, and we, are destined for great things. And we want you to know that we want you to come along with us on this journey. The wonder, the challenges, but most importantly the joy. Because I can promise you there will be a lot of it. Our little family asks for your prayers and support, for Lila, the trailblazer, for Lawson to have strong shoulders and an even bigger heart, and for me, to bring the kind of peace so big its beyond understanding.

Thank you new friends… I can’t wait to amaze you,
The newest Milburn
P.S. I’m a boy 😉👶🏼

I believe in reincarnation…

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I do. Not of people, though… of moments. Today, I had a discussion with the me of four years ago. This me, plus about three hours.

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The “your baby might have Down syndrome” me. The “Welcome to Holland” whether you like it or not resident. The girl who thought her fairy tale was over. I know, it sounds harsh. And it felt that way, too. And I saw that me again today as I sat with a new mom who had just heard these words for the first time. And I remembered the fear, the anger, the  sadness.

So what do you say to yourself, four years later? You tell the truth. You say, I know you are freaking out right now. And that’s OK. I know that you feel like everyone is staring at you, waiting for you to react, and they might be. I know you want to crawl under the bed and hide and yell at everyone that comes in the door at the same time. I know you feel like it will never be the same.

And you are right.

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But not in the way you think. Somehow, your heart is forced to expand to hold all of this love and fear and anger. And slowly, the scary parts fade away. And all that’s left is the extra room for the joy you have yet to know.

I’m not saying some parts won’t be hard. They will. You don’t find all the answers. No one does. But you will find that this bend in the road brings you right back to the place you were always meant to be. Sitting across the hospital room. Starting at yourself. Seeing the same tears slowly gather in her eyes. The smile that isn’t quick enough to come. And you will tell her to celebrate. Because you never get this moment back.

And then you will go home and rock your own little world changer, and listen to her practice her ABC’s and grab your hand to hold.

It will all be ok, you’ll say. In fact, it will be much, much better.

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Today, we will celebrate…

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I had a lot of plans for the day Lila was born. I had a sign to hang on the wall with her name on it. A cute going home from the hospital outfit. The perfect picture idea to post to Facebook. I thought I was ready.

I couldn’t sleep the night before and wrote my first “Letter to Lila.”

December 12, 2011

Dear Lila,

Today we will meet you after more of than two years of praying that you would find us. From the moment I found out you were growing in my belly, I knew you were special and would change our lives forever. You are already so blessed with so many people who love you, especially a Daddy who will support, protect and encourage you every day of your life. If I could give you one piece of advice on this day before your birth, it would be to trust that everything happens for a reason. It’s something your perfectionist Momma struggles with, but I am still learning every day. And always look for the best in people. Besides, I already know you are the best of me and we haven’t even met yet. Thank you for already changing our lives sweet little girl.

Love,
Your Momma

And then, as life often does, we were thrown a curve ball. If you haven’t read our story, you can go back to The Day we Met Our Little Girl. It felt like, for several days, weeks, even a few months, the clock stopped. I remember sitting in that hospital bed feeling like many people didn’t know what to say or how to say it. Some stayed away all together. No one meant to separate themselves, but that’s what it felt like on our end in some cases. They were afraid of the awkward, of the unknown, of the possibility of hurting feelings with the wrong words. I remember walking down the hallway the night before we left the hospital, seeing other visitors go in and out with flowers and gifts and signs and champagne, and I felt cheated. Sad. Jealous.

But over the last three years, what I’ve realized is we were partly responsible for cheating ourselves. Don’t get me wrong, we were happy to meet our baby girl. We showered her with kisses and snuggled her every chance we got, but there was also a fear that hung over us for those first days, weeks, even first few months. What we didn’t do, is CELEBRATE. We had waited for YEARS to meet this baby, and she had finally arrived. Who cares if hardly anyone sent flowers or if some people didn’t come. SHE was there and that’s all that should have mattered. Because look at this FACE…

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So today, this time, we will celebrate. Even if something doesn’t go as planned, which we know is possible, we will celebrate. If we are scared, we will celebrate. If we feel alone, we will celebrate. There will be champagne, and signs and flowers. But even if there isn’t, we will celebrate. And if you want to come to the party, everyone is invited.

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Dear Lawson,

Boy, do you have an amazing big sister waiting to meet you. All I want to tell you, is get ready to celebrate.

Love,

Your Momma

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?

Navigating the road less traveled…

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I knew our journey would be different, and at times, more difficult.  I’ve quickly learned that it’s also, pretty frequently, even more joyful and fun and promising than I ever anticipated. But not, it seems, when you are dealing with bureaucracy.

Almost as soon as we heard the words, “Your daughter has Down Syndrome,” everyone started telling us about Tennessee’s early intervention program, TEIS. It’s provided some great and immeasurable benefits for little Miss Lila. Three therapists are at our house so often, our toy poodle Tigger barely even lifts his head off the couch to acknowledge their presence anymore (and that says A LOT). They love Lila almost like family. After parents and best friends, they are the first people I tell when Lila reaches a new milestone.

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And so it was after great soul-searching that Charlie and I decided we wanted to enroll Lila in Siskin for her early intervention services (which include all of her therapies). It would mean giving up the therapists’ home visits but it would also mean she could learn to interact with other children her age, of all abilities, which is so important to us. I want my daughter to feel like she is liked and loved and fits right in to any group.  As an only child, it’s one of the only things I can’t give her at home…yet. And Siskin is AMAZING! We are so lucky to have it in our Chattanooga backyard, right?!? Their teachers are trained to help special needs and typical children learn together. Lila can receive her feeding therapy at an itty bitty table surrounded by other 1-year-olds who are eating the foods she is working towards.  Her physical therapy can come on a colorful carpet with new best friends zooming by her, so she can see how fun walking can be. Occupational therapy means sitting in a circle with a dozen small hands keeping the beat by playing musical instruments while she learns to grasp a tambourine. 

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I’ve been researching the approval process for months, anticipating every question I need to ask, trying to figure out every detail ahead of time. Because you see, special needs children almost always need a state nod to attend Siskin.  Typical children can go on a private-pay daycare basis.  Without state approval, Lila could go to Siskin but would be treated as a typical child, without access to their on-site, specialty therapists. As a high-functioning child with Down Syndrome, we are learning that this approval is hard to come by.

The state of Tennessee apparently thinks that any child with Down Syndrome who is showing progress with home therapy wouldn’t benefit enough from a specialized center like Siskin to warrant the expense. But what I know is that my Lila is worth any cost.

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We are in the middle of this approval process right now. I am constantly asking questions, making phone calls, seeking out answers. One person sends me to another who is confused about why I am calling. No one’s explanation of what happens next is the same. Some answers make me angry, and even more feel like they are in response to questions that have never been asked before. It can feel like the weight of the world is on my shoulders, without any guarantee that this role as Lila’s advocate will ever get any easier. And, admittedly, sometimes it makes me really bitter.  Seeing other moms who seem like their biggest worry is scheduling their child’s next playdate or finding the perfect smocked outfit can make me jealous and even more overwhelmed.  But, more often than not, I realize this is unfair to them, and most of the time my tired mind makes incorrect assumptions. At this moment, it is an all-consuming road to navigate that sometimes feels like it isn’t even paved.

But I know I’m wrong about that.  I know there are many, MANY mothers who have been here before.  If their questions and goals aren’t exactly the same, their intent is. And at the end of the day, my girl is so worth all of this frustration and struggle and feeling of injustice. So I will never quit.  Some days I will complain and feel defeated and want to watch trashy Real Housewives shows to escape.  But I won’t give up. Because regardless of any state policy or any written rule, Lila is my compass. One that I won’t hesitate to fight for.

If you are a special needs mom, know that you are not alone. Sometimes being your child’s advocate feels like it’s the hardest job you’ll ever had. And it might be.  But maybe we were put in these shoes because no one could walk these miles quite like we can. Maybe it’s a roller coaster that makes the highs more rewarding, even though the lows can sometimes bring us down. But the nice thing about a roller coaster is it only takes a second to be back on top.

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