Welcome to our final week of “21 Days to Brave.”
We are so excited for all the wonderful feedback and stories this journey has generated! Thank you to all who have participated, whether it be in the give-aways, or posts! Your stories and messages are life-giving. If you want to jump on board and see what all the excitement is about please follow along on our Hannah Kate Instagram story.
Today I have the pleasure to share a story of some brave mothers who have been so gracious to share their amazing story over the past few weeks with me. I have listened to their hearts through their words and it has given me encouragement in my own life right now, as I face my own trials, though they be so different from their own…
Because we all face our own areas of feeling alone, or quite possibly, like the only one walking through the valley. We all have areas where bravery seems to be our only option.
This story is extra special to me as well because today I’d like to introduce myself a little bit different then I normally do here on the blog.
Instead of photographer and writer for Hannah Kate, I would like to introduce myself as a sister to Amanda, my special needs sister with Down Syndrome. I would also like to introduce myself as a daughter to a mother who I have watched serve and love my sister with grace that only God could give.
This story reaches deep inside of me because I know firsthand that though each child is special with unique needs of their own, there is an extra measure of challenges and pains, blessings and joys — that come with being a special needs mother.
These women are heroes with bleeding hearts that rise each day to the unexpected. As one of these mothers wrote to me so tenderly last week, “God always allows the over powering love and joy when I even attempt to think of the pain and hurt…”
I am excited and thrilled to write how Andrea’s vision, and Hannah Kate Trunk Shows, brought some women together to make a huge impact in the lives of two mothers in Arkansas. We are about more than just fun fashion. Here at Hannah Kate we want to be about creating connections that can encourage one another in the journey of life, and shed light upon the beautiful wonder that each of us are joyfully and wonderfully made.
I’d like to introduce you to Jessica and Meredith. Jessica is a Trunk Show Hostess for Hannah Kate and it was there that Meredith, also a Hostess, introduced herself to Ashley, a mother of a special needs daughter.
As Meredith and Ashley connected over designing and ordering Hannah Kate clothing, Ashley began to share about her daughter Harper — the challenge of navigating her non-verbal communication, her delayed milestones compared to other peers, and Harper’s rare diagnosis that had been difficult to discover.
As the details of Harper’s characteristics milled around in her heart and mind, Meredith began to think of her dear friend Sarah and Sarah’s daughter, Londyn. There seemed to be such similarities and common conditions!
Meredith’s son Sloan had frequented the church nursery with Londyn, played on their first t-ball team together, as well as other family events, so she was keenly aware of her challenges. When seeing a photo of Harper, Meredith couldn’t help but notice even the physical similarities, and her empathetic heart yearned to put these two women in touch so that there might be possible support.
And so it began.
One connection to another. Women helping women.
Meredith to Ashley, and then Ashley connecting to Sarah — first on Facebook, then through texts, and eventually relating on a regular basis in regards to their special needs daughters, the joys and struggles, therapies, speech assistance devices, schooling, and their daily lives of loving a daughter that needs assistance in “all things.”
Now, this may not sound like anything new — Trunk Shows and friendship connections…but here is where often times we may not see the big picture Providence has in view.
Both Ashley and Sarah had been down a road of raising daughters who had not been diagnosed. Though Ashley had been able to discover a diagnosis for Harper, it had not been an easy, swift journey.
Both devoted mothers had pursued testing, but this had come up with mostly dead end results year after year. Often times some parents opt to keep testing in hopes of some closure, as Ashley had pursued, while others opt to refrain from more testing knowing that regardless of diagnosis or not, their mission is the same: to love the best way they know how.
Both of these wonderful mothers were doing just that in their own ways. One with a diagnosis and the other without.
Ashley had continued to pursue testing for Harper, proceeding with WES, a whole exome sequencing. At the time Ashley sought this out it was the newest of it’s kind– just more recently hitting the states as a more regulated option.
I’d like to introduce you to a syndrome I’d not heard of until I had the privilege of hearing from Ashley and Sarah this month. Enter here, DDX3X Syndrome.
Like with all syndromes, there are many details, all of which are individual to their own syndrome, but I would like to summarize DDX3X Syndrome in a way that can best express its uniqueness. Both Harper and Londyn deserve such valuable recognition and understanding, as we all do.
DDX3X Syndrome is a very rare denovo mutation of a single gene on the X-Chromosome. It is a formula error at the time of conception in just 1 of 60,000 genes.
Simply put, it is a “fluke” that is not inherited, but rather formed on a single gene when the child is first conceived. Like most syndromes, there is a vast spectrum of severity or disability. Some can be completely dependent and wheelchair bound, where others, it might be unique challenges with speech or muscle movement.
Each child is uniquely effected, but testing is newly available to ensure a correct diagnosis. Having the knowledge of the DDx3X Syndrome diagnosis for Harper, had brought a good deal of closure and comfort to Ashley.
Just this past September Ashley received a text from Sarah. They too had decided to follow through with the WES testing, and Londyn was diagnosed with DDX3X Syndrome as well!
What makes this super-special to discover for both of these mothers, is that Harper and Londyn are the ONLY two in the state of Arkansas with DDX3X Syndrome. When Ashley had Harper tested there was but one peer-reviewed journal article written on the topic and only 30 cases in the world at that given moment.
Today we sit at 200+ cases and growing daily as WES testing is becoming more known, cost efficient, and doctors are now endorsing it. It is braving the unknown. It is waking each day knowing your daughter faces challenges that you will walk her through, that are still newly diagnosed and being explored.
With this same diagnosis, Sarah and Ashley have entered into a new phase in their relationship. One of “family” — a knowing they aren’t alone. No longer isolated. There is a “sisterhood” for Londyn and Harper! They travel this journey with DXX3X Syndrome together.
It is truly amazing that these two brave mothers and their girls, the only two in the state of Arkansas with DDX3X Syndrome diagnosis, were able to connect through a Trunk Show and their love for Hannah Kate clothing.
It is a beautiful story to acknowledge listening, empathetic hearts, connection and encouragement could bring about “family” for mothers in need of support. We are blessed and humbled that we could but be a little avenue in which to connect others in this way.
I would like to give a shout out to all mothers who wake every single day and take on the special needs of their children. Each child has their own unique and special needs.
I would like to further acknowledge in this post though, mothers with children diagnosed with “Special Needs.”
You had to face at some point your entire life being altered in a unique way. You likely had plans and dreams dashed in an instance. Your life is set on a path often times you had no way to be prepared for, and still wake wondering what the day might hold for your child’s health and well-being.
You have taken on doctor after doctor’s appointments. Unanswered question after question. Additional needs you have no idea quite how to fix or face for your child you love so dearly. I know. I watched my mother.
She lives each day bravely doing things other mothers will never have to do or dream of taking on. She sheds tears others won’t about things most mothers won’t understand or face. She has given her all to my sister through trials only other moms with special needs daughters could understand.
She is brave. Ashley is brave. Sarah is brave.
I have had to be brave in my own life in an entirely different way, but watching my mother’s bravery has given me an example of what bravery means in the every day difficulties of life. She’s not given up, when the going got tough.
I also want to give a big shout out to our precious, delightful model, Claire, who I have had the wonderful pleasure of working with in our Hannah Kate shoots. She and I connect heart to heart. If I could scoop her up and put her in my pocket and bring her home after each shoot, I would.
Claire has Down Syndrome, and thanks to Andrea’s beautiful vision for Hannah Kate, I have had the pleasure of meeting and working with this wonderful soul of a girl and her amazing mother!
I enjoy every single child I get to work with but I have to say, no one gives me kisses and hugs like Claire!
So, today for “21 One Days to Brave” I am grateful to share this wonderful story of how it takes a village sometimes, or… a Trunk Show {wink} to piece more than some beautiful outfits together – but even more so, relationships that bring about diagnosis and loving support for life.
Keep on loving. Keep on being brave.
Alyssa
For Hannah Kate
