“This was the most terrifying part of Judah’s first few weeks in this world. Spoiler alert: it has absolutely nothing to do with Down Syndrome.
When Judah was 3 weeks old and on his actual due date, he had his first evaluation. This is when a service coordinator and some experts in early intervention are sent to your house like Fairy Godmothers. These ladies hugged, loved on and inspected my baby boy for the services he would need. In Judah’s birth story, I may have given the impression that once we were home, we were healed. This was not exactly the case. I was no longer in a zombie like state of despair after learning of his Down syndrome. After all, I still needed to be a mommy. However, let’s not roll these emotions in sugar; I cried every damn day. I had company much of the time making sure there was no crack in the foundation, but oh I cried. I researched and clung to words from others in ‘the club.’ I prayed and I kissed my baby, but sadness was still the outfit I wore every day. I knew mascara was a waste, so I passed over the pink and green tube daily, though surely it would have worked wonders.
So, when these Fairy Godmothers came to oogle my Judah, I had trouble seeing what they saw. Oh, how I longed to get there. I wanted to be them, I admired them and I trusted them. I very specifically remember the moment when my older son Calvin sneezed all over Judah’s face, and I knew the symptoms in Judah were entering the starting gate. In my trusting and ignorant state and because I thought, ‘Hey, these ladies are kind of doctors, they’ll know what to do,’ I asked their advice. I questioned, ‘does he seem sick?,’ ‘should I bring him in, he was just there?’ My hesitance was born from the facts that the doctor had JUST examined him, that I still dreaded facing the outside world, and that it was one of the many negative degree winter days that lingered. The women wholeheartedly agreed that it was probably just a cold and that he would be just fine. Oh naive me. I would slap the stupid out of me if I could go back.
See, before the worst 13 days of my life, I took word as bond. I thought everyone knew better than me when it came to Judah. What did I know? I never had a baby with Down Syndrome before… and Calvin, well, pffft, that child pretty much raised himself. I kid, but he was an easy like Sunday morning, summer baby. He never had a cold, or a sniffle and never needed a sweater… he was nice and strong. Let’s face it, he arrived at 42 weeks, he was born strong. Judah, on the other hand, was three weeks early and born during the coldest winter in 113 years. Also, with Down Syndrome, some research shows these little ones have a weaker immune system. So, my territory was uncharted, my new mommy brain bleary, my glass of instincts cloudy. I would like to make it perfectly clear that the Fairy Godmothers were not at fault. Quite the contrary. They were gracious guests in my home and loved every inch of my baby during their 15 minute visit. However, a lesson I learned later was that NOBODY knows your child like you and the fact I was even questioning his health meant I should have made the trip. If I could go back…
The next morning as I reached into Judah’s white, wicker bassinet that cozied up closely to my own bed, he felt chilly. He looked, grey? It had to be the lighting, my imagination, my lack of sleep. Bobby and I had a heated discussion the night before, and with any conflict, I stayed up most of the night analyzing angles. Bobby swept Calvin off to daycare and headed to work. Few words were spoken. I do distinctively remember Bobby saying he thought Cal should go to the doctor and me minimizing it because ‘it’s just a cold.’ I did call the doctor’s office. I spoke to a nurse. No fevers. The boys both didn’t sound well. I really didn’t want to go to the doctor for all of the above mentioned reasons. So, here’s the truth, Ruth. If you downplay what is happening because you’re pretty, kind of sure, that they are okay, because people keep telling you it’s just a cold…then the nurses are going to agree with you. They aren’t going to scold you and say, ‘hey, listen lady, you need to get that kid in here.’ Who knew? I didn’t. That will NEVER be the way it happens. These nurses and doctors and professionals base all of their prognosis on what YOU feel and what YOU know about your babies. How’s that for pressure, huh? The ‘discussion’ between Bobby and I continued via text the whole morning he was at work and it was exhausting as we tried to defend our perspective. I won’t get into the meat of the fight… um, I mean discussion… because it doesn’t matter now anyway. What does matter is that Bobby knew I was hurt, and he knew I was fragile, and so by all that is holy, he came home for lunch that day – and our scuffle saved Judah’s life.
Judah was shallow breathing on my chest when Bobby traipsed in as we had both dozed off. As I moved to sit up, I noticed it again. To Bobby I squeaked out, ‘does Judah look blue?’ Bobby agreed, and I asked him to call the doctor. Still no fever, but his temperature was 96. That wasn’t good. He needed to come in. Bobby secured an appointment for a half hour later. With no resolute to our issue, he headed back to work, making me promise to text him. I bundled my blue baby for the trip. I promise to tell the truth, the whole truth and nothing but the truth, no matter how ugly and disgusting it may sound. I looked at Judah enveloped in his furry car-seat-snuggy and thought, ‘maybe this is for the best’ and ‘thank goodness I didn’t get to really know him yet.’ As soon as the thoughts escaped, I was devastated at where my brain could go. I tell these loathsome thoughts because they were a part of it. Was I pronouncing him dead on the scene? Was it a defense mechanism? Was I even more not okay with Down Syndrome than I thought? Was I a monster? I never had time to figure out why these terrible thoughts reared their ugly heads. I do know this. I easily doubled the speed limit on my way and at every red right, I put the car in park, climbed in the back seat and made certain my baby was still breathing. I talked to him the whole way. ‘We’re gonna make it buddy.’ ‘You’re gonna be okay.’ ‘Mommy loves you.’
We rolled in to the office and I had to wait in line for… wait for it… a girl filling out new patient forms… for TWINS!!! Are you kidding me? I huffed, I shifted feet, I inwardly debated and then finally: ‘Um, this is kind of an emergency, my baby isn’t breathing.’ The lady seemed annoyed like I was being dramatic. Damn all those times I was dramatic! But she promised me a nurse soon, and with a wave of a magic wand, one was there. We were escorted in a room and Judah’s temperature was 94? Ninety mother f’ing four!! I’d never seen this before, but she shouted for a doctor who literally sprinted in and immediately put my infant on an oxygen mask. He then calmly said we would have to go to the emergency room and to the nurses, ‘someone call 911 and get an ambulance.’ I lost it. All of it. I lost composure as I uncontrollably sobbed. I lost my mind as I asked what I should do with his car seat, and if it was okay if I left my car in the parking lot.
I lost words as I called Bobby and my parents and fumbled how and where we were going. Judah was put on a stretcher in his car seat… and this medic. I wish I could see this angel again and thank her. She straddled the stretcher, facing Judah, and uttered endearments like, ‘hi buddy,’ ‘hang in there beautiful,’ ‘come on bud,’ the whole freaking way!
December 19th, 2014, we were sent to the 11th floor of Golisano Children’s Hospital with RSV. It remained our home for the next 13 days. I’m going to have to pick and choose some crucial pieces here… like how we went through some sh*t and handled it like a boss, like how I fell even more in love with my husband, and how I weirdly miss some of the nurses and doctors that we met. Like that prayer room on the 12th floor that I swear was a direct link up to heaven, and how Christmas in the hospital wasn’t so bad. Finally, most predominantly, the way this travesty sealed the deal. How I knew that if this little baby was going to make it, I was going to spend the rest of my life loving him with everything I had.
Golisano’s is the number one children’s hospital for a reason. Golisano’s – a place that I had heard of, but had no desire to meet. Well, we met alright, we shared a best friend necklace and I couldn’t be prouder. During the first few crucial days ,when things were touch and go, their professionalism and kindness stole my heart. With RSV comes a side of a dropping heart rate and oxygen level. When this happened, alarms would sound, scrubs would be thrown on and a sea of blue nurses would enter Judah’s room. Things would be handled, and we could soften again. Sadly, this happened often. I became a captive to the monitor even though nurses urged me not to. Some nurses gave Judah oxygen, jolted him until he started breathing again and then left the room. Some nurses did that…but MOST nurses stopped to give us explanations, reassurance, kind eyes, and compliments on our ‘beautiful baby’ or ‘our fighter.’
One nurse though, he almost seemed to love Judah the way we did. (Peter, if you’re reading, you probably already know this, but WE LOVE YOU.) Bobby and I would text each other, ‘is Peter working tonight?’ ‘When does he leave?’ ‘Will I get to see him?’ He became a borderline obsession of ours. Our favorite was the way he would talk to Judah when the alarms would go off. He’d come in all flustered, ‘C’mon buddy, what are you doin’ to me? Just when I thought I could relax.’ Well, we had to leave Peter when we went up to the PICU and it was a tearful hug goodbye from this girl. He was just one floor below us, but we were going to miss his tenderness so much.
Luckily, the PICU was spilling over with nurses and doctors who won the blue ribbon in bedside manner. Now, bedside manner doesn’t just mean ‘be nice to me’ – it means, keep me informed, keep me hopeful, keep me sane, and keep me in the loop! Dr. Kevin was the epitome of all these things. He would show us the x-rays of Judah’s lungs, give us information updates on the daily, assure us he would be called at home if Judah’s health declined, and he sold it to us straight. When Judah was about to be put on life support, three days after his arrival, the doctor brought us into a private room. He said what I had been thinking for three damn days! ‘Judah isn’t going to die.’ These powerful words may have been words that everyone knew, but no one thought to tell me, and I was way too scared to ask. He continued: ‘We haven’t had a case of RSV where a baby died in two years.’ Two years didn’t really seem like a long time to me, so I clung to ‘Judah isn’t going to die.’ I clutched those words until I could actually start to believe them, and when I did, the power of prayer finished the job.
There were so many highs and lows. I remember Bobby and I talking about the roller coaster effect a lot. There were highs like Judah having no heart murmur, or when my brother was there to see him taken off life support. We were able to see Bobby’s very ill uncle who was at the same hospital, and we may not have seen him otherwise (high and low.) So many of our family and friends came. They sat with us, cried with us, tried to make us forget about crying, brought us dinner, helped out with Calvin. My sister-in-law took Calvin to urgent care (low) and then took care of him when he had pneumonia (high.) She gave him medicine and reassured him when we couldn’t… and she snuggled him selflessly even though he was contagious.
I can never repay anyone for the tons of tenderness they showed us, so instead I will repay everyone. I walk through life a different woman. I will give more than I take. I will reserve judgement and forgive easily. I will gossip less, listen more and I will undertake these goodies every single day. Some days I am better at it than others, but I will never stop trying and I am forever changed to a more compassionate soul.
We were able to come back home on New Years Eve, as symbolism played yet another part in our play. I left the hospital a different person. I think Bobby and Calvin were different too. Appreciation rode home with us in the car that day.
Down Syndrome was no longer a jerk, but something to advocate for. Judah was no longer a worry, but a blessing. I can’t believe how much I love this kid. How much I want to learn about all that is Down Syndrome. How much my passion is to support him. I’m crazy about him and I’m crazy about the cause. Don’t be surprised if you even see me with a yellow/blue ribbon magnet on my car. Yup I’m that girl now. I’m that girl who thinks her little family is everything, and who will love them all tirelessly. I will because I have the opportunity to have something I almost lost.
There is no sweeter sorrow than to live through that sorrow and continue to feel all of its components. I still feel the pain and it draws me to everything that I call mine. I have the benefit of never being able to take anything for granted again, of living in the moment, and of being eternally proud. I now know this saying is truth: ‘The bad days make the good ones better!’ So, here’s to the good days, and may every day be good.”
Read about Judah’s compelling birth story:
Provide hope for someone struggling. SHARE this story on Facebook with your friends and family.