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

Proud Daddy
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.

 

6 Lies I Told Myself About My Newborn’s Diagnosis

As mothers, we often carry so much guilt and lies about ourselves. There is absolutely nothing new there. It is as real as the air we breathe and yet just as easily dismissable.

We tried for so long to conceive our precious baby girl. I knew the truth about disabilities because of all my background in special education. I knew real statistics and what “typical and atypical” looked like. I knew accommodations and modifications and early intervention. But more than that I knew the love I could expect. I knew what a miracle looked like. I had personally comforted many mothers whom previously had experienced the very same thoughts and feelings. All of this came before Charlotte’s birth and yet I still found myself vulnerable to the trappings of these lies:

1. She’s was a mistake.

The Mayo Clinic defines Down Syndrome being “caused by a mistake in cell division.” (https://www.mayoclinic.org/diseases-conditions/down-syndrome/symptoms-causes/syc-20355977). Please know that the information on the Mayo Clinic’s site is 100% clinically true and in no way intended, I’m sure, to cause pain to anyone. However, in my hurting heart, as I sent information about the diagnosis to loved ones, all I read was the word “mistake”.

The truth: Your baby is not a mistake. Your baby is a beautiful creation. If I had to compare my odds (1 out of 700) I consider myself fortunate to have drawn my baby’s lucky numbers!

2. I did something wrong.

“Was I out in the heat too long?” “I knew I shouldn’t have eaten that lunch meat.” “I was too negative.” “I was so stressed out.” “Maybe if I had exercised more…” “Maybe if I hadn’t exercised as much…” I seriously beat myself up internally in the beginning over every single detail of my pregnancy. And I NEVER led anyone on to that, which probably caused some pretty serious high blood pressure issues (but that’s another blog for another day). If I had a dime for all the time, energy, and amount of stress I spent over blaming myself for my daughter’s diagnosis…well, as Josh says, “I’d be making money in a weird way.”

The truth: There is only one thing to do. Love that beautiful baby you have been blessed with! They are perfectly created. Seriously. Think about how deep that is. Per*fect*ly. created. Not moderately. Not, “Eh, he’s ok.” Perfect.

3. People pity her, or (almost) worse, me.

When we recieved the official confirmation that Charlotte Grace did, indeed, have Down Syndrome, the first thought that popped into my mind was, “How will they treat her?” “They” meaning everyone we knew and loved. Would they love her the same? Would they be there for her the way they are for the others? How will they react when she does ____? How will they react when she doesn’t ____? Will they see me differently now too? It was the most gut-wrenching of it all. I knew I would love her. I knew Josh and Aubrie would love her. But some foreign and strange part of me wasn’t convinced they would love her.

The truth: Yes. They do, definitely, love her. They don’t always have the right words. They don’t always know just how to react, or questions to ask, or even if today is a good day for them to ask them. But they definitely, definitely do love her (and us). And that is all that matters.

4. People are avoiding us.

After the emotional roller-coaster of the birth of baby “Charlie” there was a lull, a period after the announcement of her diagnosis that felt like a lack of communication by many family members and friends. We had chosen to send out an email (which we will share in a future post). In the email we said we understood if people didn’t quite know what to say and that it was ok. Though, I had an expectation (albeit, a silent one) that people would come out of the woodwork to show us support (and many, MANY did). However, I expected every man, woman, and child to be at our doorstep and crawling through our windows to take over midnight feedings and diaper changes, and bring in a massage therapist and a maid. But that did not happen. Crazy, right!?

The truth: It took me some time to understand, but I had not thought that others may have to go through the same grieving process that I did. We are so good at manufacturing an idea of the journey our lives should take that we often don’t realize we do it for other’s lives too. When the lives of those closest to us don’t turn out how we envision, we grieve for them and sometimes that looks like silence.

5. I need to stop working.

This one was particularly difficult for me. Upon the delivery of Charlie’s diagnosis, I knew in my heart 100% I needed to quit my job. As an elementary school teacher smack-dab in the middle of a school year, I also knew in my heart 100% I needed to to return to work ASAP. Luckily, I was very fortunate to work for a school with wonderful (read: amazing), caring (read: loving), and flexible (read: generous) administration. They worked with me so I could teach two days a week and could be home with my girly to do therapy the other days. This was an ENORMOUS help and a true blessing for our family. However, I never could quite shake the burden on my heart that I needed to be with my girl ALL.THE. TIME. I wanted to be with her more than I ever felt the need to be with my older daughter (How’s that for some mom guilt?). I always thought Aubrie came out of the gates running, if you know what I’m say’n. Charlotte just “needed me more”, right?

The truth: Give yourself grace to make a decission that will have pros and cons no matter what. If you chose to go to work, find a caregiver you can trust to implement the therapy techniques with your little one. If you chose to stay home, love that baby and the workplace will be totally fine without you. Let go of the guilt either way.

6. I can’t be joyful and grieve at the same time.

Ohhhhhhh…..This lie. This lie was the biggest of all. It was by far the hardest to overcome. I still struggle with it and probably will for a very long time. It’s such a complex range of emotion. In the first group outings with friends and their kids, we would talk about Charlotte and I would immediately start crying. The only way I could articulate my emotions was to say, “Please don’t misinterprete my tears. I am joyful and I love my baby girl.” But I would always be afraid people would think we felt burdened by her. I was scared that others would never understand that we had joy, we were just grieving the life we dreamed for Charlotte. The joy we have for her is insurmountable. She was a gift to us after years of praying and we treasure her deeply. There is absolutely nothing we would change about her and that includes her having Down syndrome. BUT. We had plans for her life. We planned for her to go to this school, and take these classes. We wanted her to complete Driver’s Ed this way and in this timing. We expected her to have typical dating experiences with the great big teenage years full of girl drama and utter disdain for her parental units. We thought she would grow up and move on to college…and a career…and the All-American Dream….That was our plan.

The truth: Charlotte is our girl. And that means that she gets to have her own life story. She gets to make choices and discover her identity. She gets to find her strength and talents and gifts. She gets to determine when to put her full trust into the One who says who she is (and she will). She gets to say when, and what, and if this school or that one. She will decide her path, her purpose, and her plan.

And that’s when I remember that this plan…His plan…is so much better than the one we could have ever dreamed for her.

Angel baby

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.”

NO WATERMARK-2977-2

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