With Love, from a Rockin Mom

Dear Mom who just got a Down Syndrome Diagnosis,

First, welcome to the biggest “family” I’ve ever been part of. We’re here, all of us, to help. Some are battle worn and weary, some are new and have fresh eyes, but all of us can offer you help on your journey. The Down syndrome community is expansive in their views and their approaches.

You likely heard your babe has an extra chromosome from a pediatrician, genetic counselor or your Obstetrician. I hope they were gentle. I hope they were positive. I hope they gave you up to date information. And I hope they listened to you. Maybe they gave you local contacts in the DS community, or maybe they only gave you medical information. I want you to know that both are valuable. It’s ok if you aren’t ready to meet other families yet. It’s ok if you immerse yourself in events like the Buddy Walk. This is your journey and its unique to you.

As you sit there looking at a profile in an ultrasound, or holding your bundle of joy please know that you hold the keys to everything they will need. Your love will shine through with each medical decision, each push for therapies, and each gentle cuddle you give.

It’s ok to be lost sometimes. It’s ok to not have all the answers. Sometimes you will be so overwhelmed that you can’t think about therapy, or surgery, or being brave. And that’s ok. Your baby doesn’t need for you to have all the answers. Or even to keep a brave face all the time. All your baby needs from you is love.

Whether you advocate loudly from the rooftops or quietly behind your keyboard, you will make a difference.

As you hold your baby, or rub your growing baby bump, please know that you are enough.

Love,
A mom a little further along on this path

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It Takes a Village

Raising my girls is one of the best experiences of my life. I don’t always get it right, but I always give it my all.  One of the biggest impacts on my life is due to Everly.  She opened up my heart and our family to so many different people.  Nurses, doctors, specialists, genetic counselors, therapists, and case managers.  Special needs moms, Rockin’ Moms, preemie parents, and countless friends. I’ve written before about the importance of our village in our breastfeeding journey, but that is only one small glimpse into the impact that other people have shared in our lives.  Everly is succeeding because of the support she receives, and I am succeeding because of the strength I gather from our village.

One part of having down syndrome that affects every milestone is low muscle tone.  Everly sees her therapists four days a week, and enjoys playing and learning with each of them. I’ve watched her master skills and hit her frustration level working with all of her therapists since birth, but one of the most rewarding things to see is the bond she forms with them. It can be frustrating as her mom when we hit road blocks or plateau in an area while soaring in another. But what has remained a constant since this summer is her obvious love for her speech therapist, Meredith.  Everly lights up when we walk into the waiting room.  As soon as I set her down she makes her way over to her door and tries to sneak into the room. Kaylee Dee runs over and asks to play and Meredith always grabs something from her room for Kaylee Dee to do. Finley greets her with a big smile, and Everly claps and squeals in delight when Ms. Meredith comes out to get her. Her giggles bounce off the walls of the hall as she makes her way down to the sink, Meredith following closely behind. It is clear that all three of my girls know there is something special about Ms. Meredith.

Everly works hard in speech. They do muscle strengthening exercises, practice making sounds, and choosing her own activities.  Meredith helps her find her voice every Tuesday and Thursday.  At home we have implemented many of the activities from therapy.  Every has choice cards to choose what she would like to do. She uses signs for many of her favorites.  I created a folder of pictures on my phone of people for Everly to look through.  We talk about who everyone is and something special about them. One of those pictures is of Meredith. She picks this picture often and immediately signs “play” and “listen”.  She often manipulates her baby’s, or lately Finley’s, hands into various signs. She is being Meredith. But my favorite thing she does when she sees the picture is clap and hug the phone. She signs “I love you” to the picture. That shows me that not only is she learning, she is loving, and being loved in her sessions. They both hold special places in each other’s hearts, and it is clear in the way they interact, and the extra time Meredith spends ensuring Everly learns and grows to the best of her ability. I see the love of Everly in her actions and in her work and in Everly’s play while we’re at home.

Sometimes it is hard to share my baby with our village. I don’t enjoy taking Everly for blood draws or tests. I don’t enjoy doctors visits where we learn of more medicine or higher doses that she needs, but I know that they are important members of Everly’s community. Sharing Everly with Meredith is easy. It’s easy because Everly loves Meredith, and Meredith clearly loves her.

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Why It’s Ok to Grieve a Down Syndrome Diagnosis

I’ve written about my grieving my daughter’s prenatal Down syndrome diagnosis before, but I haven’t written why that grief was important. I haven’t shared what drove it, or how empowering it is now.

That grief was born of a world crashing down around me. It was a thousand small changes in the course of my child’s life presented all at once. You see, with my typical kids those will come slowly over the years. Choices they will make and natural abilities will cause them to forge their own path, instead of the one I imagined. My path was infinitely safer, albeit boring, than the ones they are on. Because, of course my path doesn’t involve tears over hurt feelings, or not making a team, or struggling to understand a class assignment. Mine doesn’t involve the angst of not getting their way or the challenge of deciding on a career. As I listened to rapid heartbeats on those first ultrasounds, their path was similar to mine, but devoid of any of the challenges that made me strong. It involved all the activities I love, and was easy. Small changes as my dream becomes their life will be seamlessly embraced. As a parent I embrace their paths and love seeing personalities emerge.

But when you hear a diagnosis, and all the worst case scenarios all you can hear is that someone took your child’s path. They didn’t replace it even. In that sterile, medical environment they snatched her path and left her in a small circle defined by an outdated book. A circle defined by her almond eyes and low tone. A spot defined by limitations instead of potential.

I grieved for the struggles she would face, and for the intolerance she would undoubtably encounter in this world. As a mom I want to take away my child’s pain and soften their landing. Until I became a parent I didn’t fully understand that I would rather endure excruciating pain, than watch my child endure it. I want to take any intolerance and wrap it up and hide it from her so she never sees it. I grieved because I know I can’t shield her from hurt forever. I grieved because I knew that she would have to work five times harder for everything than I’ve ever had to.

It wasn’t until I found blogs and met families further down their paths that I saw the circle she was placed in expand ever larger, slowly becoming the winding path she is proudly bear crawling down.

But when we don’t talk about our sadness and our struggle it makes it isolating and a source of shame. It took me almost two years to embrace my initial grief and stop being embarrassed by it. It took a lot less time to move past the grief and embrace the joy because the joy was a quick Google search and a tight knit DS community away. When we stigmatize grief we hinder progress.

When I share my stories of Everly, they are filled with hope, and humor, and love. But to get the whole picture, you need to see that it started with darkness. I look over at her now standing independently and concentrating as she hesitantly takes 1….2….3, wobbly steps before she falls down, only to stand back up with determination and try again. I navigated her diagnosis much the same way. Slow, wobbly moves out of my grief, determined to find our path again. And just like I know she will soon be confidently striding, and then effortlessly running, I found my stride out of the darkness onto my path of joy. I choose to no longer be ashamed of my initial grief. That grief made me stronger. It forced me to search the depths of my soul and it makes me fight that much harder for acceptance. But it also exposed a raw, emotional side of me that has made me love harder, appreciate more, and ultimately made me a better mother.

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A Shared Story; My Review of “The Parent’s Guide to Down Syndrome”

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By nature I am a book worm.  But with three girls 4 and under I rarely find the time to sit down and read a book. I am a member of  an online group of Rockin’ Moms comprised of other moms of children age 3 and younger with Down Syndrome.  It was through this group that I met cofounder of Down Syndrome Diagnosis Network, and author of the book The Parent’s Guide to Down Syndrome, Jen Jacob.  I have been anticipating the release of the book since she started doing parent interviews, and I preordered the book as soon as I could.  I waited eagerly for my Amazon Prime box to show up.

You can buy the book here or on Amazon in paperback or the Kindle edition.  I highly recommend buying the paperback book.  I was sent the PDF file in order to be able to review the book in case my copy didn’t arrive in time for me to read before posting, but after opening the file I decided to wait for my book to show up. It was worth the wait.

Full disclosure; I did not read this book from start to finish, and that is one of my favorite features of the book. Don’t have time to read all 247 pages at once? Me either. I’ve got three girls keeping me on my toes. I jumped right into Part Two and continued hopping around the book reading the parts that pertained to me and my journey with Everly first. Only after I’d read Part Two did I go back and read the other parts of the book including information about DS, birth and prenatal diagnosis, all the way through each stage of development to adulthood.  I loved the raw, honest look at each stage of development. Included were many parent perspectives and anecdotes.  I found them easy to read and relatable.

Unlike many of the other books on DS that have come and gone through this house, or simply been buried on our bookshelf, this one has found its forever home in the top drawer of my nightstand. I will pull it out with each new stage we begin, and look back as needed. This is a great first read if you’ve just received your child’s diagnosis, and a great edition to your library if you’re further along in your journey with Down Syndrome.

My Wish

“My wish for you, is that this life becomes all that you want it to.” *

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My wish for your future is that you are always cocooned in the love and support you currently have. As you journey through life, I hope acceptance blossoms into friendship, and that inclusion helps you open the hearts of others.

I hope as you continue to grow, you never lose the joy and pride you have within yourself.

May you experience the joy of of meeting your teachers on the first day of school, while I cry down the hall after placing your little hand in theirs; and may your joy continue through the day, so my worries were for naught. I hope you sit with friends at lunch, and giggle while you swing at recess.

My wish as you continue to grow is that you go to your first school dance and have fun with your friends. I hope someone other than your family tells you how beautiful you look in your dress.

I hope you graduate from high school alongside your peers, excited, proud, and unsure of the future, all at once.

I hope you are able to find work that you love and excel at, and that you follow your heart. I hope one day you fall in love, because everyone deserves to experience the butterflies of new love. And may that man one day ask your daddy for your hand.

I hope doors are never closed for you simply because you have Down syndrome.

“May all your dreams stay big, my wish for you.”*

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*Lyrics by Rascal Flatts, “My Wish”

 

 

Remember the Siblings

When I go out with my three beautiful girls, we attract a certain amount of attention. As any parent of multiple children who are close in age, I’ve gotten used to it. People can’t help but comment about any family that’s larger than 2 young children. I get it. We’re a spectacle.

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I often have two of them strapped to me; which makes them appear even closer in size and age than they are. If not, I push one in a bright red stroller as she plays with the beads I attached and joyfully yells and smiles at everyone. My oldest talks a mile a minute with the vocabulary and clarity of a child twice her age. If the store has kid size carts, she’s surely pushing one with her babies in it along with a bag of grapes. They always have brightly colored bows on their heads, and occasionally match. My middle girl has Down syndrome. We’re a unique family. The comments are expected.

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“Three girls? Your poor husband is outnumbered!”

“Are they all yours?!”

“Look at all those beautiful bows.”

“You’ve got your hands full.”

I also get the occasional unique comment; one that makes me genuinely smile. From people who really look at my family before speaking.

“Three girls. What a lucky family.”

“How close in age are they? You look like you’ve got it all under control.”

I don’t mind either type of comment. The vaguely observant, stereotypical, or the ones who spread joy.

Cashiers and wait staff remember us even if it’s only our second time going somewhere. I understand the urge to single out my middle girl. I really do. Shes cute. She’s LOUD. She’s got the almond eyes, low set ears and flat nose that indicate her Down syndrome; it’s hard to miss. She has an infectious smile and is learning to communicate, so she might even “say” something to you using her hands.image

But please, don’t ignore my other two. Finley is observing with her big, beautiful eyes, her own squeals of joy, and a ready smile. Kaylee Dee is a little mother hen and is dying to be noticed in public for her manners and helpfulness. Please don’t ignore them and only compliment Everly’s cuteness.

Especially don’t do this when she’s throwing a fit. I’m sure you wouldn’t praise a typical two year old while in the throes of a terrible two meltdown; please don’t tell me she’s cute when she’s trying to hit her big sister and yelling.

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Inclusion is when you treat all my girls with equal attention. Not when you single out Everly and ignore the other two. This hurts all three of them in the long run. It teaches Everly that she is allowed to behave however, and be lavished with praise and even given things. And it teaches my other two that they aren’t special. They are young now, but soon Kaylee Dee will start to notice the discrepancies, and Finley will too. Resentment will build. I know you mean well, but I’m trying to raise three girls, not just one.

Our local grocer “gets” it. She acknowledges all three girls’ contribution to my family equally. She always has something to say to each one, a sticker for all three and frequently offers to help me to the car even though it’s not a store where that’s the norm. I go out of my way to be in her line, even if it’s longer.

Because as much as I love the acceptance my middle girl is always shown, please don’t forget my other two. They may not have an extra chromosome, but they do have feelings.

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Buddy Walk 2015

This year we attended the Buddy Walk in Onslow County for the first time. Rain and winds were expected, as Hurricane Joaquin was expected to make landfall on Monday, but we woke on Saturday morning to sunshine! We had a great time walking with our Happily Everly After team and other members of our community. Everly even bear crawled for part of it!!

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Team Happily Everly After

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Everly is part of an organization called I Run 4 which pairs runner with buddies with disabilities. Everly’s runner, Nicole, lives in Canada, and dedicates her workouts and runs to Everly, and hosted her own walk for Everly, which raised money for Everly’s Buddy Walk team! They had a cold and rainy walk in Canada.

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Team happily Everly after in Canada!

Thanks to the generous donations of our team of friends and family our team raised over $1,000 for our local Down Syndrome network and raised awareness for Down Syndrome!