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.

 

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.

 

 

 

 

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A Down Syndrome Diagnosis Should Change Everything, Without Changing Anything- A Dad’s Perspective

Having a new baby is an all-around emotional process. Throw in a two-week stay in the NICU no one expected with a life-changing diagnosis, and you include a whole array of emotions that aren’t usually included in the package.

 

Anger & Frustration

Charlotte came in kicking and screaming at 4lbs 13oz on a Saturday afternoon. I couldn’t have been happier. After delivery, I felt the same as I did after our older daughter was born; relief that everyone is safe, pride in my new child, joy for my growing family, and the love for this child that just came into my life.

This is when things started to be different. Soon came the constant stream of doctors telling us what was wrong with our baby, most notably her size. We knew, due to a recent ultrasound, she would be around 5lbs. That didn’t bother us or our OB at her office, but it sure seemed to bother a lot of people that worked at the hospital. Nurses told us the NICU would be notified, their on-duty neonatologist would come, and they “didn’t like small babies”. 

“Of course, she’s small.”, I thought, “My wife and I both have a thin build, our other child was born just over 6lbs, and she’s ok. These people don’t know what they’re talking about.” But for the next several hours, it didn’t stop. They kept undressing Charlotte to take her vitals and constantly mention her dropping body temperature. The logic side of my brain kept saying, “Well, no kidding that’s because you keep stripping my child down to nothing in this cold hospital. OF COURSE, SHE’S COLD.”  

They kept telling us she was lethargic and weak. “Well, yeah, she’s a baby. Stop judging my kid!” Hearing all of the same things over and over but not really providing any real solutions or helping us understand the longevity and seriousness of what seemed simple problems, was actually provoking. Doctors and nurses flooded into the room to tell us that Charlotte needed to go into the NICU to “rest, stay warm and play catch up a little bit on her weight.” It all seemed so extreme for those simple symptoms. 

Then the big ones came. A neonatologist came in and said, ” I think she has Down Syndrome. You need to get her tested.” It was as casual as I just wrote it. It may as well have been my mechanic suggesting that I get my brake pads changed on my next visit. It was infuriating. To me, Charlotte was perfect. Looking back, I was being protective of my daughter. Which is healthy… to a point. But this was only the end of day two.

Fear & Uncertainty

I managed to calm down some the day after Charlotte got to the NICU. I saw the care that the nurses gave to her, and it was obviously their calling in life. However, there was still underlying uncertainty. I knew she was safe, and it was where she needed to be, but I was so uneasy. I was scared that there was something really wrong with her. “Will her body temperature ever regulate on its own?” “Maybe she has Leukemia.” “What’s going to happen between now and the time she leaves?”  “Will she ever get to come home?” 

A week after she’d been brought to the NICU our new neonatologist, who we LOVED,  showed us the symptoms and physical traits she saw and suggested the bloodwork to check for Down Syndrome again. We agreed, reluctantly.  While we waited the days for results one of us was at the hospital around the clock, even overnight. Whoever wasn’t there was with our older daughter, Aubrie. We were exhausted. One day, Arielle and I decided to get some lunch after we met with the doctor, and in all of this exhaustion, Arielle got overwhelmed. I stopped the car right there in the parking lot and we prayed together, asking for the results that we needed to have, and the strength to accept them.

Depression & Disappointment

The “pre-diagnosis” felt like being in a hazy grey cloud. I was depressed. We were tired (an understatement) and ready for our kid to be home. I didn’t want this for Charlotte. I didn’t want this for my kid’s life. I wanted the healthy baby, have a quick hospital stay and go home with pink balloons and flowers and a stuffed animal or two. I wanted her to do regular kid stuff. I was being selfish. Selfish for the life I wanted for her.

Then one day there was clarity. It was almost diagnosis day and we decided to go to the mall with Aubrie to spend some time with her. We grabbed some lunch at the food court. I took a quick look around and caught some people walking by. It was a dad with his two girls. The girls looked to be teenagers, one had Down Syndrome. Her hair was done, she had a Star Wars T-Shirt on, a cool pair of Vans and some crazy socks (I wouldn’t understand the significance of the socks until later.) All three of them had a smile on their face. They were happy. And it seemed that we could all be happy like that one day too. That family of strangers have no idea how much they helped me that day.

Relief, Hope, Pride & Joy

Josh with his girls in NICU

Charlotte was released from the hospital on a crisp Saturday in January. By then, my head had cleared up and I was hopeful for Charlotte’s future. I had come to accept that she probably had Down Syndrome. I understood this was going to be our normal now, and that was ok. The doctor gave us the news Charlotte did indeed have Down Syndrome just a couple of hours before we left the hospital, exactly two weeks from her birth. The diagnosis was almost a relief. We now knew the root cause of what had kept her there for so long. Now we knew how to help her.

Charlotte came home and had a string of follow-up appointments with her pediatrician, cardiologist, ophthalmologist, Ear, Nose and Throat, Physical and Speech therapy. Each one amazed at her overall health. She is true to the meaning of her name, “Mighty Warrior”. I couldn’t be more proud of this little fighter. She brings joy to everyone she meets and is getting quite the little personality. Her smile makes my heart skip a beat, I can’t wait to see her awesomeness.

If I can offer some hope; It’s alright for negative emotions to creep in. It’s life-changing. Just don’t stay in them. Make sure you, your spouse and family are a team. Be there to support one another, and make sure you are communicating.

Something like a Down Syndrome diagnosis should change everything, without changing anything.

 

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.”

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