Why I share my journey as a double Down syndrome mom on Facebook

Having three kids is hard.

When two of them have special needs, it can be harder.
There, I said it. My life is full of rainbows and windmills and milestones, and I will celebrate them from the rooftops. But sometimes, the bitterness gets the best of me.
When I’m exhausted and snippy and at the end of my rope. When my 40-hour a week job takes too much and I feel guilty I can’t spend more time with my family. When I get frustrated with my super loveable kids and think, “I don’t know if I could survive as a stay-at-home mom.” When every road feels like it leads to a failure.
When I feel like the logistics of having three children is harder than actually raising said children. When figuring out who is going to drive what car is a morning puzzle, because we only have one that fits all three littles.
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When we are relying on 5 different people to fill up a full week of at-home childcare because keeping a baby with Down syndrome out of daycare for the first year can really help their sometimes-weakend immune systems. And when one piece of that puzzle gets lost, the whole thing seems to fall apart.
When we face behavior issues with our 6 year old with DS (what happened?? She used to be such a compliant 4-year-old 😢😢), and our typical son is acting like a raging three-nager. When I have to call the insurance company for the 15 thousandth time for our NICU bill for our 5-month-old with Down syndrome.
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(But gosh darn, isn’t he cute?!?!)
When I can’t even have a cocktail because I’m on the Whole 30, trying to lose third baby weight (who thought THAT was a good idea??).

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That is me today. I am defeated, I am tired, and I am not in the mood to celebrate.
And then, I see notifications start popping up on my Facebook app. You see, earlier this morning I posted a video of my oldest, Lila, practicing a silly song we made up to help her introduce herself to new friends when she starts school next week.
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Like many kids with DS, she has a speech delay and that can sometimes mean it’s takes other kids a little longer to get to know her.
All of a sudden, videos started popping up from friends. Their kids wanted to say hi to Lila too!
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Some of these people I have never even met in person, mind you. They are a friend of a friend whose photography I liked so I sent her a friend request a few years ago.
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A high school friend I haven’t seen in years. A friend from Lila’s class last year who missed playing with her over the summer.
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And I realize, THIS is why I share our story. From the first steps to the time someone pooped in the bathtub (yup Moms, we’ve all been there), people from all across the country feel like they know my girl (and now her little brother) because our lives are an open book. And if that means that those sweet friends who wanted to make Lila a video, go up to the kid in their new class who may also have a different ability this school year, then it all makes sense. My girl will have made a difference.
From our front porch swing with her little piggy-tails, she is changing the conversation. And that, my friends, is worth celebrating. Even on the hardest days.
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The highs and lows of maternity leave

I am so darn blessed to have been able to spend weeks at home with my babies after they were born. While some sort of pay made things a lot easier, time is really the biggest gift. Time and grace.

Part of me wants to feel guilty for spending hours on my bed holding Avett over the last twelve weeks instead of cleaning a little more, folding more laundry or finally getting those kitchen drawers organized. But the third-time Momma part of me knows there will be time for all of that later. And the gift of giving yourself a break and soaking up all those baby snuggles is the best one I could get.

That being said, these weeks are far from a vacation. They have been a crash course in getting to know THIS baby, no matter how many other kids you have.

LOW: the equipment

Our little Avett came home with a few more “accessories” after his three week NICU stay.

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No, not that that kind 😉.

THIS kind…

An oxygen compressor, a pulse ox monitor that beeps pretty much every time he moves his little foot, portable tanks, a cannula and tape, and on and on. I’m so grateful we were able to leave the hospital but this setup was a little overwhelming at first. My apologies to everyone I was supposed to meet, and showed up 40 minutes late. Especially as I tried to get my cannula taping game down. 39C00F7E-DBCA-4E44-90B4-0D85D83944CC

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HIGH: the snuggles

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No explanation necessary, right??? THE BEST.

LOW: the new Mommy look

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OK, I fully realize I could’ve spent the time to fix my hair and put on makeup, but did you forget about the new baby snuggles, so much more fun!!! So instead you let your hair do whatever you want, and when you take the baby to eat lunch with his amazing 6-year-old sister, her classmate asks you why your hair is wet.  Because her Mommy’s hair only looks like that right when she gets out of the shower. Thanks little lady. 😬

HIGH: seeing your friends snuggle on your baby

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LOW: breastfeeding in your car between errands

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HIGH: being able to breastfeed your baby

This can be a struggle for new babies with DS. Sometimes their mouths aren’t strong enough or there are GI issues, and Avett did have problems at first. But we kept trying and now he’s a pro! (As the people in several parking lots across town can attest to).

LOW: the clean up

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Whether it’s poop or spit up, you’re going to be cleaning it up. Off of everything.

HIGH: seeing your older kids love on “their baby”

LOW: the continuous countdown in the back of your mind as going back to work gets closer

HIGH: having an amazing husband that works all day and comes home and jumps right in to the craziness

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LOW: discovering that life doesn’t stop just because you had a new baby…

In fact, Avett’s already been on a kindergarten field trip and to an IEP meeting.

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And those amazing trips to the grocery store where nothing will fit in the cart besides the car seat OR you can’t get things off the low shelves because you are wearing the baby and don’t want to bonk his head on the canned goods.

HIGH: learning tricks from other moms on maternity leave

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LOW: When a certain princess makes you feel like a slob, looking immaculate right after giving birth

HIGH: Knowing she’s probably wearing that same mesh underwear under that dress and catching a glimpse of her not-perfect-either after-birth belly from the side

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LOW: feeling like every other day is spent in a doctor’s appointment

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HIGH: being thankful for the doctors and nurses who teach you how to handle the extras life tends to throw your way

As I get ready to go back to work, I am overwhelmingly grateful for this time and sad it is coming to an end. But there are adventures ahead of us as a family of five and I can’t wait to see what the future holds!

Oh yeah, and did I mention it will include lots of snuggles??

The Avett Files, Week 1: to all the NICU moms

Our third and last baby is one week old, and what a week it’s been. A 2-day early, new plan for our planned c-section, an amazing first cry, a trip to the NICU, a blur of a week driving back and forth, splitting time between the OG babies at home and the little man that’s stolen our hearts. A view of life in a place so different from our day-to-day that you sometimes forget what it’s like to NOT hear the constant beeping of heart rate and oxygen monitors. You hear them in your dreams and even in the old familiar sound of the credit card machine at Target, when you run in for nursing pads and baby sleepers with buttons so that the tiny wires hooking your baby up to the machines can poke through.

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I’ve learned a lot about oxygen saturation and people who stay up all night to feed and cuddle and change the diapers of other mothers’ children. The ones who are quick to get you a chair or a pillow for your back when they notice you holding your c-section scar. The moms of the baby in the next bed who pretend to not hear when you sing off-key to your new baby or snap at your husband because you’re both exhausted.

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And I’ve learned how lucky we are. That the issues we face are small in comparison to the pounds and ounces that so many babies are fighting to add to their one and two pound birth weights. That we have family and friends to help with a brother and sister at home. That people are offering to bring us meals and send us encouraging words. Because I have seen the people who don’t have that, and are fighting anyway. For their small babies who are so strong tucked away behind the blanket over their NICU incubator.

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When we discovered my OB wouldn’t be at our delivery because he was out of town and it was 5:45 on a Sunday morning when Avett decided to try and make his appearance on his own schedule, I was scared that this delivery experience would be marked with a well-meaning but none-the-less discouraging word about Avett’s Down syndrome diagnosis. So when I met the doctor for the first time I said, “Listen, this baby has Down syndrome and so does his older sister. And it’s OK, in fact they are both amazing. This is a good day, and we need you to be on board.” It was the most positive delivery experience of the three. We asked them to turn the radio up, and nurses and doctors were laughing and singing and cracking jokes. It even felt a little fun. (Aside from the fact I got to hear the OB describe the whole surgery to a student while it was happening and listened as my uterus was described in such a detailed fashion that no woman ever needs to hear.)

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And when they took Avett to the NICU because he got a little fluid on his lungs on the way out, it was still ok. We knew it was a possibility and we counted our blessings anyway after a quick kiss and an Apgar score of 8.

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So the little man who will move mountains is well on his way to coming home, to meeting his big brother and sister and making our family complete. And very soon, we’ll be wishing we had those NICU nurses here in the middle of the night.

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Thank you for all the prayers and kind words. The lil’ Avett brother and his cheering section will always be grateful, from the tops of our heads to the tips of our toes.

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It’s a Wonderful Life…

I watch this movie every Christmas Eve with my husband. For the last six years, it’s been on in the background while we put together toys to get ready to play Santa for our daughter, Lila, and son, Lawson. When I was young, I hated that movie. A black and white favorite of my Dad’s that I never took the time to really understand.

But now, in my 30’s and getting ready to welcome my third child in a few short months, our second with Down syndrome, I think I know a little bit about George Bailey.

The man whose pure heart and work ethic won’t let him leave the hometown where he thinks he doesn’t belong. It always depressed me as a child. I thought my dad, who would readily admit his tendency to pout much more than a grown man should, was seeing himself in the frustrated, overworked father who could never seem to come out ahead.

And then I became a parent. And I lost my father to a years-long battle with cancer. And I started watching that movie a little more closely.

George Bailey comes to the end of his rope because of circumstances he can do nothing to control. He’s worked so hard, been kind to others, loved his family, and a fluke sends him into a world he doesn’t recognize.

I felt like that a lot when we found out our Lila had Down syndrome. In a place I didn’t think I belonged. A world that felt unfamiliar and so far away from what I had planned. I started writing about our journey, my feelings as we navigated through this new world, sometimes sharing things I knew might upset the ones closest to us. And then one morning, after posting a late-night blog, I woke up to an email from my father.

My dearest daughter,

Every time I read your blog a few tears run down my cheeks. Tears of happiness ! Yes, life isn’t fair. But the day our Ms. Lila was born I didn’t even think about that. As I told you and Charlie that day, ‘God doesn’t make mistakes’.

As I watch sweet pea grow into a beautiful young lady, I am so proud of her and you and Charlie for the wonderful parents you are. You have grown with our precious Lila and are doing a tremendous job of being a mom and dad…

Ms Lila is my George Capra. She and her parents have reminded me that ‘Its a Wonderful Life’ for me too!

All my love

Paw

 

Now I know, the point of that movie is not that everything works out perfectly. George Bailey’s $8,000 is still missing when he realizes he wants to live. His loved ones just fill in the gaps. The path doesn’t have to be perfect to be well-worth the trip. In fact, sometimes you realize that life is more wonderful, when you’ve been down the roads that seemed scary and foreign, and have discovered their sometimes-hidden beauty. It IS a wonderful life, not because it’s easy, but because you see it from a place you didn’t choose, but you are so glad you ended up.

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And I will welcome this new little boy with the extra chromosome into this wonderful life. Just like my Daddy would have. And we will all sit back and watch him make it an even better place to live.

And he shall be called…

No lie, we have struggled for a name for this sweet boy. Why? Maybe because he’s our third and we’ve already laboriously picked our favorite boy and girl name for #1 and 2. Maybe because with two littles your brain is permanently a little fried. Maybe because we were thrown for a loop when we found out he would be our second baby with Down syndrome. Whatever the reason, nothing felt right.

When I was having my first c-section with Lila, because sister just couldn’t face the right way on her own, they asked me if I wanted a particular station on the Sirius radio in the delivery room. I picked my favorite and tried to calm my frazzled nerves by naming the songs. Now remember, we didn’t know that particular blessing was coming with an extra chromosome. But someone sure did. Moments before we saw her for this first time, Bob Marley’s “Three Little Birds” was playing on that radio. The first line “Don’t worry about a thing, cause every little thing’s gonna be alright” would become our mantra for the next few months as we adjusted to our new journey.

Then, with Lawson, I found out hours before delivery that I would need to be put under general anesthesia for his birth. A shot I took every day for a blood clotting disorder had made my platelet level fall, making a spinal block too dangerous. So I had a sweet nurse write down the songs that were playing when he was born. “Blackbird” by the Beatles would be his song.
“Blackbird singing in the dead of night
Take these broken wings and learn to fly
All your life
You were only waiting for this moment to arise.” My second little blessing.

The day we learned that this little boy was coming with something extra, I came home and tried to calm my running mind by listening to songs that had comforted me in the past. I played this song over and over again.

 

When the storms of life are raging,
Stand by me;
When the storms of life are raging,
Stand by me;
When the world is tossing me
Like a ship upon the sea
Thou Who rulest wind and water,
Stand by me.

The song is sung by the Avett brothers. And I know that even though he made our seas feel a little rocky at first, soon he will also be the one to calm them. And so his name shall be…

Avett Thomas Milburn

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

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.

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

**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.