A Brave, Beautiful Sibling to a Girl with Down Syndrome, School Days

It’s a bitter-sweet day. Today is our Gal’s first day of first grade. Today she boldly started at a brand-new school, with brand-new teachers and brand-new friends. Today she is growing up just a little bit more.

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I was fortunate to spend the past couple of years teaching at the private school where Aubrie attended.  We love that school.  It was filled with a love that is unmatched in our books. The teachers were intentional with their time, likely because they only taught two days a week and cherished each moment with their students…I know, because I was one of them. This schedule allowed me to spend the other three days teaching my own daughter at home and have precious time with her while she got an amazing education that fit her and our family. There are many choices for education out there: five-day-a-week programs, homeschool, university model…they all have their pros but, for us and our energized 6-year-old, having the structure of a class some days and the flexibility of home days the others was like finding a diamond amongst the stones. The leaders took a genuine interest in, not just the students, but the families that attended as well. When Charlotte was born, and Josh and I spent the two weeks in NICU, not a meal went by that we had to concern ourselves about.  Every meal was brought to either the hospital or our home by our sweet church or school family.

As we journeyed through the beginning stages of being a “special-needs” family, I slowly but surely started to realized what I knew from the beginning. What I knew was true, but didn’t want to believe, from the moment I was holding my fresh little Charlie in the rocker in NICU with the NG tube up her nose and settling into the idea that she indeed did have Down syndrome;  I would need to leave teaching to give Charlotte the very best of me for her.  Now, let me say, for all you new DS momma’s out there, this was a personal decision for our family. It took me months to make this decision…and unfortunately, kind of last minute because I simply didn’t want it to be true for us.  I loved teaching and I loved the way I still got to be with my Gal so much. To give that up meant giving her into the hands of (perfectly capable) strangers who were not our school family we had grown to love so much. For us, knowing I could be home to do therapy with our Lovie, bring her to any and every appointment that was helpful and ensure I am doing everything within my realm of ability to encourage maturity and health for her, meant letting my Gal grow up a little bit faster than I was prepared for.

 

The day I shared with Aubrie she wouldn’t be going back to her old school, she cried. A lot. She cried about the stuff you’d think she’d cry about. Missing friends, her teachers, even her adoring Principal. But what hurt the most was hearing her sob over the fact that Mommy wouldn’t be with her as much. Gut punch. Frog in throat. That was the moment I could see into the future a little. Looking into that crystal ball I knew so many decisions now had the potential to carry this weight for our sweet big girl. The weight that certain choices inevitably will be made for Charlotte.  And, if I’m honest, it kinda sucks having to make the good, hard choices in life that are going to be better overall but hurt someone else, even for a while.

It made me realize how intentional I have to be with my family now, more than ever.

It made me realize how intentional I have to be with my family now, more than ever.  It made me understand how quickly a spouse or a sibling of a child with ability differences can feel pushed aside through all the day to day tasks that happen simply because the needs of that person with special needs have just that…special needs. I made it my goal for the rest of the summer to ensure that Aubrie got her special time too.  To be mindful of her feelings, to generously share my time with her, to give her my undivided attention as best as I could, but forgive myself when I couldn’t.

Then, about a week ago, Aubrie found her joy again. She was excited to meet new friends. She was nervous to meet her new teacher but quickly learned how amazing she is. She was excited about not having to wear school uniforms anymore! She made a best friend almost instantly. Then, one evening before school started, in her young and precious, child-like wisdom she said to me, “Mommy, I’m glad you’ll get to be with Charlotte for her appointments. And I can’t wait to come home to spend time with you guys every day.”

Today was her first day of first grade. Today was a day full of promise and hope. Through these times and trials I get to be able to witness her stepping into the person I know she is maturing into; a wise leader.

And so I know it will be ok. I know that when I have to make those good hard choices Aubrie will grow up understanding and believing she is loved just as much as Charlotte. I know both my girls are loved by others, no matter where they are.  I know at the end of the day, I love them (both) more than I did the day before.

 

 

 

 

Who we are.

A name gives identity. A name gives sound to the stagnant air and purpose with intentionality. This is true since the beginning of time. We spend countless hours determining the syllables to pair together that are just right for our children, our churches, our businesses…even our pets. Names are so obviously important, and yet once the name is given, we rarely consider its impact on the world.

In our family, we hold on to the promises of our namesake. We trust the truths of our identity knowing they were given to us with much deliberateness by those who knew us before we were born when we were just a sparkle in an eye. We are Josh-Generous Leader, Arielle- Lioness of God, Aubrie-Leads with Wisdom, and Charlotte- Mighty Warrior. Lewis- Lion-Like. We are a pride, not only in our name but because we move boldly, even when it’s scary. We might take our time, but ultimately we fight the battles, earn the scars, and get back up. When a whisper in our ear says, “You cannot withstand the storm.”, we repeatedly roar back, “We are the storm.”

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Our precious baby girl, Charlotte Grace, is already living out her name, “Mighty Warrior”. Our sweet “Lovie Dove” was diagnosed with Down Syndrome at two weeks old. Our journey so far has not always been easy. Many days of doctors and therapy. Days of grief and misunderstanding, but always days of joy. We hope the pages that follow fill you with hope. We look forward to sharing our story and experiences.

God doesn’t give the hardest battles to His toughest soldiers, He creates the toughest soldiers through life’s hardest battles. – Unknown