In light of recent events , it feels like the right time to reveal the most terrifying part of Judah’s first few weeks in this world. Spoiler alert: it has absolutely nothing to do with Down Syndrome. You see, my sweet Judah is sick. He has a cold and because I now know how important it is to not minimize symptoms, or let the doctors act as the great and powerful Oz, I made damn sure they saw him twice this week. Three times if you count his well visit. I made sure they inspected every inch of his creamy, rolly, perfect ,baby, body. He is okay. He is on a nebulizer, on a steroid and we are watching him like a four year old scans the windows for Santa …but he will be just fine. Words that just months ago I never thought I would hear.
When Judah was three weeks old and on his actual due date, he had his first evaluation. For those of you that do not know, 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 all, I still needed to be a mommy. However, lets 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 everyday. I knew mascara was a waste and so I even 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 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 that 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… until 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 that I was even questioning his health meant I should have made the trip. If I could go back….
Now let’s fast forward to 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 stay 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? I digress. The “discussion” between Bobby and I continued via text the whole morning he was at work and It’s 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 concurred 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.” So, 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! I remember thinking, wow it’s like she doesn’t even care that he has Down Syndrome. Again, I would love to bitch slap me back then.
One ambulance ride later and we arrived at the ER. I saw my parents and Bobby peering out the window with worried faces that mirrored my own. Tests were being done vitals were being monitored and all I could concentrate on was Calvin. How would we get him from daycare? We couldn’t stay at the hospital and leave him, we would have to leave Judah at the hospital. Yes, that’s what we would do. Now, who was going to get my car? What the hell was wrong with me? I don’t know why in the face of danger I feel the need to handle the teeniest of details? I remember a lady hit my car once. I checked on her, ran to a gas station, called 911, spoke to my dad, and was inspected by a fireman all before I completely fell apart as I realized what had just happened. I would love a psychologist to explain to me this phenomenon, but for whatever reason, there I was, still stuck in small detail purgatory.
December 19th, 2014 we were sent to the 11th floor of Galisano Children’s Hospital with RSV. It remained our home for the next 13 days. Now, I could write a whole book just on the staff alone, so I’m going to have to pick and choose some crucial pieces here….like how we went through some shit 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.
Galisano‘s is the number one childrens’ hospital for a reason. Galisano‘s a place that I had heard of but whom I had no desire to meet. Well, we met alright, we shared a bestfriend 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, he 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 that he would be called at home if t 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. Thank you to all who prayed for Judah. I strongly believe that the united light that was shone in his honor was a big part of his recovery.
Bobby and I never made a formal plan for our unexpected encounter, yet our execution was seamless. We stayed at the hospital together only twice. The second day Judah was there and on Christmas night. Every other day went something like this: pack bag and Calvin, load up minivan, drive to hospital, do the exchange. In one more way, luck was on our side. Bobby had just started Christmas break, so work was not part of our obstacle course. I’d meet Bobby at the drop off. We’d hug, bound, knowing our time was that of a conjugal visit. Tears might trickle, laughter would sprinkle and time interfered. I’d brush a kiss on Calvin, clutch my fresh packed bag, as Bobby discarded his tired one and we would settle in to our new normal. The next 24 hours were never settled ones. We always wanted to be at the other place, we always longed to be together. So, texts earned frequent flier miles as we shared endearments, pictures, stories and critical information…until our roles were reversed. A bond was formed here. A bond stronger than “I love you’s”, more durable than marriage vows, more fused than our very own bones. We also had sealed a deal. We could handle anything and we did it with love, solidarity and pure enchantment with all that was ours. I never thought it then, but I am so charmed with how we handled it all. Go team B&B! When you’ve been to hell, you’re allowed to cheer for yourselves.
Oh Christmas. I love you but I don’t. You have this clever way of monopolizing December….with your gifts, and your parties and your fancy green and red velvet attire. When my due date was December 18th I immediately became distraught. How would I get my shopping done? Could I bring a one week old baby to the festivities? What if I was still in the hospital? How could I preserve my 40 year old traditions? You can imagine my surprise when I was hit directly in the head with a monkey wrench. I held on hope that we would be sent home. When that hope was no longer a reality I complied. More accurately, I surrendered…and that’s when I had the best Christmas ever. Galisano‘s sent me shopping. The one day that Bobby and I were there together, a stewardess of sorts came in and handed me some tickets. She told me I was to go to a special room and shop for Christmas, for free. I tried to protest because we HAD gifts. Also, my sister-in-law graciously came over pre-RSV to keep my spirits up and get my wrapping done. They insisted. These wonderful angels persisted. So shopping I went, in Santa’s workshop, complete with: bikes, American Girl dolls, legos, games, books, art supplies, elf hats, smiles, warmth. My job was to fill up as many garbage bags as I’d like. Because I’m the type ridden with Catholic guilt daily, I filled one bag with gifts for my babies….and one new, shiny, blue hairdryer for myself. I headed back to the room with my loot and again was met with persistence. “We need to wrap these gifts for you. There’s a wrapping room down the hall.” Once more, I surrendered. So there in the corner of our room, was a heap of happy Christmas gifts imploring us to stay in the spirit.
Bobby spent Christmas Eve with Calvin and our families… and I spent it in prayer. There was a prayer room on the 12th floor that I visited often. In the room was a roped off space wearing a worn oriental rug from all that had prayed before me. This is where I spoke to God. I apologized to Him, thanked Him, begged him. One wall was completely made of glass and at first glance this was not the holiest of views. A parking garage, bare trees, souls struggling on the street…but when I looked up, my heart magnetized itself to the love. Every time I went there I was met by beams of light in a game with grey clouds. It made the most beautiful metaphor. It made sense. There is grey, there is suffering…. but there is light too. Look at the light Beth, look at the light.. So, I did and whatever I saw changed me. I picked to find the joy, I picked to be grateful. I picked to see the light.
There were many wondrous events that surrounded this Christmas cluster. I attended a quaint chapel in the hospital and thanked God for what I now recognized as blessings. My brother surprised me for a visit. He brought me a plain tuna fish sandwich because he knew it would make me smile, mostly because it made him cringe. He knew to keep it light and when he left for his own merriment my cheeks hurt from all the cheering up. Friends that are more like family took up a fund for us the night before and so we had a surplus of everything good and kind. Bobby sent me pictures of Calvin enjoying Christmas, of my Uncle dressed as Santa, of grins in the wake of anguish. I was not lonely. As, I sat and sang “Silent Night” to my wee, prized creation it all felt right.
On Christmas morning my in-laws good-naturedly came to sit with Judah so he wouldn’t have to be alone and so we could make memories with Calvin. Bobby and Calvin came to get me and we rushed home to open gifts. Gifts from us, from the hospital, from friends and friends of friends. So many gifts. We kept Judah’s gifts as a shrine to honor our newest family member. After the whirlwind Bobby punched back in at the hospital and it was my turn to carry Calvin through traditions. When I arrived at my parents house, my plate was prepared and my wine poured. Liveliness filled any voids and after the gifts were ransacked and our bellies were full, Cal stayed. I went to back to the hospital so that Judah could spend part of his first Christmas with both his mommy and daddy. A few others made the trip and Bobby, Shannon and I cracked ’em open as soon as I got back. Luckily we got busted and lightly scolded only after the brewskis were gone. Bobby and I fell asleep on a tiny vinyl bed next to our boy. We were fulfilled and rich with faith from all that embodies Christmas.
It’s hard to wrap this story up. There were so many more parts, so many highs and lows. I remember Bobby and I talking about the roller coaster effect alot. 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 (something I swore I’d never do when Judah first was born.) 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 it’s 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. ❤
I said every month I would send a Down Syndrome fact out into the world and so it shall be. As my teeny 6 pound baby now fills out 3-6 month footed pajamas , I feel reflective. However, I also sit writing this after my first week back with inner-city 5th graders….so forgive me if my metaphors and onomatopoeias aren’t on point.
In honor of Judah’s 4 month birthday I thought I’d talk about the 4 chambers of the heart. Now wouldn’t that be cool if every month lined up perfectly with a symbolic number? A girl can dream… but for now I’m just taking it one month at a time (although, secretly I am brain jotting ideas for month 5.) So, in babies with Down Syndrome, there is a 40-60% chance that a hole can exist in either the top two chambers or the bottom two chambers of the heart. When Down Syndrome haunted my house, I didn’t even KNOW this ghost was lurking. However, after Judah was born and we were all on the same Down Syndrome page, the heart was the organ that stood in the limelight. Every time a doctor came in with a stethoscope (so every.single.time) stress cut my life line just a little bit shorter. Bobby and I leaned in, as if to read the doctor’s thoughts but too afraid to ask. The doctor would then utter “nope, I still don’t hear a murmur,” and Bobby and I could again exhale until the next time. The fact that a murmur wasn’t heard was fabulous news, but we weren’t in the clear. Only a cardiologist could tell for sure. So the appointment was made for February 23rd, approximately 3 months from the day he was born. Might as well been 3 trillion millenniums but what can you do? I really shouldn’t complain because the thing about Down Syndrome is this: once the diagnosis is made or there’s even a chance, then services are offered to you like drinks at a party. You don’t even have to think about it. How does everyone know that you couldn’t bear to think about it? So, the cardiologist appointment is made and you wait………..unless your child gets RSV.
At a mere 20 days old and one day after Judah’s original due date, we were admitted to the hospital. It was a scary time with a blue, cold, premature, baby and my very first ambulance ride. When Bobby arrived at the hospital we were faced with another grown up challenge, filled with adult decisions, about little people’s lives….Whoa, weren’t we just picking out our plate pattern? We made the decision to split up. Calvin had just had his world rocked when his brother was born and he was deserted at his grandparents with no warning. Recovery was slow and tantrums were prevalent. We decided one grown up would stay at home with Calvin as an attempt to return life to some version of normalcy. The other hovered and hand held over the baby we had just met. We alternated the twelve nights and as the fate fairies would have it, I dealt with all the debacles. I can hear those funny fairies discussing now…”Which parent should watch the baby get hooked up to oxygen and rushed in an ambulance?” “We should let mom do it, she’s never been in an ambulance.” “Oh, excellent idea.” “How about, who should be with the baby as he’s rushed to the PICU and stops breathing on the way?” “Let’s give that one to mom too. She gets real anxious in these kind of situations, maybe this will make her stronger.” How about when we have the cardiologist come to the hospital, do an ultrasound and tell her if her son has holes in his heart?” “Mom would love that one, you know how she loves a good anticipation situation.” So…….it was me. When the ultrasound technician came in and took what seems like thousands of pictures of Judah’s heart, it was me. I watched. My brain scanned everything I had ever learned in Health class as I tried to decipher the black and white blobs. Then, after all her silent scrutinizing was done she told me to wait for the doctor. I was never so torn to see a doctor in my life. I wanted to know. After all, originally we weren’t supposed to meet this destination for another 2 months. But I didn’t want to know. I was again alone and wasn’t sure I could take much more trauma. As luck would have it, I had reached my trauma limit. The young, friendly, doctor drew me a diagram (which I saved by the way) explaining where holes could be but weren’t. I could’ve kissed him. I’m pretty sure I hugged him. We kept our appointment for February and he breezed out with a suitcase full of my worries. When Judah was well we went back to the pediatrician who sent us in the ambulance. He felt he needed to share. He told me that if Judah did have those holes in his heart he would not have lived that day. I wanted to hug Judah so tight and punch the doctor so hard all in one instant.
February rolled around and my heart was healed and singing. Now it was time to check on Judah’s. I bundled and packed up my boys for the great cardiologist odyssey. Calvin was holding it together by a thread as per his usual behavior in an official setting. I thought this visit was a formality and assumed it would be a quick one. Sticky circles were placed all over my baby boy’s body. Even Calvin could see through the trickery of the cute little bears on them. He wanted them OFF of his baby brother. Some medical recording happened and the lady left the room. She told me the doctor would be right in. Then, in walked the ultrasound technician from the hospital. I recognized her and my heart sank to my socks. Why was she here? I think I asked her just that and in a nasty, accusatory tone. She told me the doctor just wanted to make sure. So off we went, down the hall, me dragging Calvin, Judah at peace in his car seat. The whole time idle chat was being made, Calvin was engrossed in a cartoon, Judah was mesmerized by colorful lights and I was panicking. I have grown to not like doctors very much these days. Before Judah, I most literally, trusted them with my life. Now, I wouldn’t trust them to deliver a piece of my mail. So, I laughed at the tech’s jokes and deliberated how I should handle myself now that my son did in fact have a heart defect. One long story and intrusive battle later, the doctor arrived. He asked me a bunch of questions about Judah’s eating. With each question my own heart grew more and more damaged. Then……..”well, his heart looks fine. The PFO that every baby is born with closed right up and I don’t ever have to see Judah again if that’s what you would like.” Immediately, tears stung and splashed from my eyes. Poor Calvin had seen this too often in recent days and gave me a frightened face. I hugged him tight and told him Judah’s heart was okay. I left with promise, a text to everyone I knew from the parking lot and a WTF as to why I was put through so much torture to get here?
Now days, this memory still prickles ;but I hold on to that prickle as a reminder of how grateful I am. I will take a prickle over the impairment you must feel when your baby really does need open heart surgery. It happens too often with babies that have Down Syndrome. You see them in their miniature gowns and you think “that ‘s not right.” A baby getting ready to have a surgery that would be major for any grown adult is not easy to see. But you know what? These surgeries are successful! These babies grow to live long healthy lives…. and these mamas and these daddys? They survive it too. They hold their babies a little tighter from that day forward. They put just a little bit more faith in God. They have a little bit of a better understanding of what it means for people to be fighting their own battle and so they are a little more compassionate. They are a little bit more gracious and they are a bit more superior to the rest of us. But that’s the least they deserve don’t ya think? I think they are absolutely justified in their fast pass through the pearly gates for sure.