A Fearless Future: Thoughts from a Dad after a year

Oh, the future. What will it hold for the masses? Flying Cars? Will the Saints ever win another Superbowl? Low carb cookies that don’t skip out on taste like so many others? These are the questions that keep me up at night. Or, I suppose they used to. My worries have changed a lot since the Saints won that first Superbowl.

Ten years ago, I saw marriage in my future. I already had the ring, but had yet to pop the question. I saw us having a dog. I also saw two kids and a house. Everything came along in due time, in its own unique ways.

My worries then were that I could handle all of this that I was about to thrust myself into once I asked my then girlfriend to marry me. Would I be a good husband and Dad? Where will we live? Will there be new and exciting Oreo flavors? Well, we have a great house, but those new Oreo flavors… yeesh.

My worries changed after Charlotte’s diagnosis. I had a lot of fear, anxiety and sadness and I was mourning her entire life and what I wanted it to be. It was crushing, before I realized that none of that was ever up to me in the first place.

If you’ve read my other blog post about what it was like going through all of that, you got a taste of it. The late nights at the hospital can play with your brain, but I’ve had quite a bit of time to process things since then. Suffice to say, 2018 has been trying for our little family but we’re going to break out of it stronger than before.

At first, my thoughts of her future looked bleak. I believe one late night, or early morning at some point I just broke down crying and Arielle asked me what was wrong. I could only say “She’s going to have such a hard life.” I didn’t know any better.

It’s funny though, after plugging into a few Facebook feeds and websites, how quickly you can get a broad view of something. Just a quick flip through a website can show you what certain communities or groups can face on a daily basis. I saw groups of people supporting loved ones and could see the compassion in their hearts for everyone that was new to the fold. It seems like nobody meets a stranger in this community of Down syndrome. One day I came across a statistic that said 99% of all adults with Down syndrome are happy with their lives. Nobody SUFFERS from Down syndrome.

My focus has shifted away from just making sure that she’s “taken care of”. I don’t think that’s something we’ll have to worry about with her. We are responsible parents, we’re working on getting her set up financially for the future. She has a very loving big sister that will be a great caretaker should the need arise and will make good decisions if need be.

Josh ten years ago would want his kids to go on with their lives making sure they did something meaningful and productive, so why should the events of the past year change any of that? Aubrie has bounced around from wanting to be a teacher, to a veterinarian to a gastroenterologist and back again. It’s too early to ask Charlotte that question, all she wants right now is a good nap, a full tummy and some snuggles and playtime with the people she loves. Pretty sure we’ve got that covered for her.

I see great stories of people with Down Syndrome that give me hope for Charlotte in the future. A young lady in Louisiana who graduated from a college program and got a great job at her local police department. Multiple stories of small business owners who exclusively hire individuals who have some sort of disability and of course there’s the great story of John’s Crazy Socks. There are many others.

I’m not just concerned with her making a name for herself professionally in some way, what about her personal life? Josh ten years ago wanted his kids to have a relationship and get married, maybe have 2.5 kids, a labrador and their own suburban dwelling. Aubrie says she’s never getting married, and that she’s going to live with us forever. Of course, she’s only about to turn seven, we’ll see how she feels about that in ten years when she’s in the throes of teenagerdom.

No matter your thoughts on reality television, it was a great window for me to be able to see a few episodes of “Born This Way”. Watching these young adults deal with with the same kind of personal relationships that everyone else I know deals with. Friends that you may not necessarily want to be around, people messing with your relationships, or trying to date and get to know someone new. If it’s through school or church, or through groups like our local Down Syndrome association and their many programs, I’m sure she’ll have many of the same experiences and interactions that I did as a young kid or teenager that will give her memories to last a lifetime.

I have gone from being confused about Charlotte’s future to being hopeful, and I’ve shifted back to her doing something that is both meaningful and productive, but I’ve added another task for her. I want her to be an inspiration and bring hope to others, especially worried parents. This is not a diagnosis to fear, and I hope that Charlotte grows up to be like the people I have had the good fortune to meet that do have Down syndrome. I’ll always be proud of her. Your kid will be amazing, do amazing things and inspire everyone they meet.

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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.