This is a Testimony to Alex, from his Mom. The post takes about 32 minutes to read and is worth every second!. I’m Joe, the husband to Amy and the Dad to Alex.
Our hope, as parents, is to help ease some of the fear other parents may be feeling who are dealing with or about to deal with a “complicated” child. For those about to dive-in, we hope it can help you to see God’s glory and love, even in those moments of pure chaos. Enjoy!
Decade of Alex
Alex is 11, and when he turned 10 I thought, he has a great story! But I began struggling with why I would share it. He had a complicated medical history and anyone who knows me already got the med school version. I didn’t want to reiterate all that. I kept asking God, “Why share this?” I know we’re not supposed to take tidbits of scripture out of context but within a couple days these verses jumped out at me:
Mark 5:19 – Tell them everything the Lord has done for you.
Acts 13:15 – If you have a message of encouragement for the people please speak.
Psalm 105:1 – Give thanks to the Lord and proclaim his greatness.
Let the whole world know what he has done.
The truth is, when we remember what God did in the past, it strengthens our faith and gives us hope and courage for the future.
But that wasn’t enough for me, because I thought, this isn’t the story of how Jesus came into my life. So I looked up the word testimony. The dictionary defines it in the legal context, like declaring under oath or proof and evidence supporting a fact. But the Hebrew definition is kind of cool—it comes from a word I can’t pronounce, but it basically means to “do it again with the same power and authority.”
So as I began writing, ironically I found myself knee deep in another big trial with Alex. Which made me think the fact that it took a year to write this wasn’t a coincidence. Maybe I needed this fresh in my mind to remember that as we face this next hurdle, God will do all of these great things again. And if He’ll do them for me, He’ll do them for you. Again. Because His love never ends, and His resources never run dry.
Ok, so this is his story:
Once upon a time we had three boys.
We had plans to move out of state and buyer for our home, but I really wasn’t happy about the prospect of starting over. These verses helped me immensely:
Isaiah 43:18-19 – Do not remember the former things, Nor consider the things of old. Behold, I will do a new thing, Now it shall spring forth; Shall you not know it? I will even make a road in the wilderness And rivers in the desert.
I really thought God gave me those verses to comfort me during this transition. But all those plans changed, we stayed in place, and I later learned that was to prepare me for what lied ahead.
A few months later, pregnant with our fourth child, I was kind of hoping for a girl. And, knowing we can ask God for anything, I did! At our routine 20-week ultrasound they couldn’t get a good look at the baby’s heart so I had to go back a few weeks later. I went to that appointment alone because of scheduling conflicts. Before I left, my doctor told me they found a white spot on the baby’s heart, which, I was told, is a soft marker for Down Syndrome. She tried to comfort me by letting me know it was an isolated incident but she also offered some additional—and invasive—prenatal testing. I declined. It wasn’t going to change how we proceeded with the pregnancy, and we didn’t want to take any risks. I called Joe before I left with the update and we just decided we’d deal with whatever came our way. I got off the phone and think I cried the whole ride home. I already looked up Down Syndrome and was well aware—and fearful—of the laundry list of potential medical complications that came with it. It really felt better not to know. At least through the pregnancy there was still hope.
I remember getting home, going to my room to cry and pray. Once again, I asked God for a girl. Immediately what flooded my mind was: You’re not going to get a girl—you’re going to get a little boy with Down Syndrome and you’ll see God’s glory through him. I sat there of course wondering whose thoughts were going through my head. God doesn’t give us full details of our future, does He? The enemy certainly wouldn’t be encouraging me that I would see God’s glory. Maybe I just knew that sometimes God gives us what we would never choose on our own so that He can show Himself mighty on our behalf. Either way, that’s what happened.
The Calm Before the Storm
Dec 12, 2014, I woke up about 2:30 am thinking my labor was starting. By 4:00 I was out of bed and texted my friend Pattie—the only one I knew would be awake because she’s a bus driver! And she sent me this:
He giveth more grace when the burdens grow greater;
He sendeth more strength when the labors increase.
To added afflictions He addeth His mercy;
To multiplied trials He multiplied peace.
Around 5:30 I texted my mom. She sent me this:
Isaiah 55:8-9
“For my thoughts are not your thoughts,
neither are your ways my ways,”
declares the Lord. “As the heavens are higher than the earth,
so are my ways higher than your ways
and my thoughts than your thoughts.”
I just remember thinking, “Huh. So I should prepare myself for another boy and a difficult delivery???”
We homeschooled, and in a few hours, everyone was up starting the day. Contractions were increasing but while we waited for our friend to come hang with the boys so we could head to the hospital, we pulled out Joe’s Algebra book. Today was the train lesson. You know, “If train A leaves the station going 50 miles an hour, and train B leaves the station one hour later going 70 miles an hour, how many miles will it take for train B to catch up with train A?” All I remember thinking is I don’t really care—as long as one of these trains takes me to Highland!
We did finally arrive at Highland and Alex was born 45 minutes later—so the man in the elevator with us was probably nervous when the doors shut and I said, “I hope we don’t get stuck!” Immediately after he was born, I overheard someone saying, “He doesn’t have a bum hole.” What!? “He doesn’t have a bum hole.” What does that mean? A doctor came over to talk to me and said he didn’t have an anal opening to poop from. It happens sometimes, and he’ll probably get transferred to Strong and need surgery.
Totally drained from that unmedicated delivery, my mind started processing all this. Seriously, that’s a thing? Surgery? We don’t have time for surgery. How does this all work? It was Friday morning. In my infinite wisdom I figured, ok, he’ll go to Strong, they’ll poke a hole, and we’ll be home by Monday! Little did I know.
They let me hold him for a quick snuggle before whisking him away to the NICU. Without an anus he couldn’t pass meconium so I couldn’t nurse him. The rest of the day Joe and I basically spent trying to update everyone on all the information we didn’t know and come up with a name for our baby—because Rumpelstiltskin would only work short term. And the only name I was set on was Anna, but that was a girl’s name.
By 10 pm-ish I had transferred to Strong, Joe went home to be with our other boys, and we had finally decided Alexander James sounded like a nice strong name for nice strong baby. He had to be strong to get through this. As the cobwebs settled, I started to wonder, where is my baby?! I went down to the NICU and honestly don’t even remember if I held him. He already had wires attached monitoring his heart rate and whatnot, and he had an repolgle tube which went down his nose to suction his tummy so nothing could go through his digestive system. We were told he was slated for Monday morning surgery. That seemed so far away…he can’t pass meconium; won’t his intestines rupture? Panic set in. I watched Alex sleep, and I just remember thinking, is he going to die? What if he does? What if he can’t survive this? Everything I went through—the pregnancy, labor, delivery—what would it all have been for? Would it be in vain? I did a lot of internalizing but the biggest thing I needed to come to grips with right then and there was deeper. God? Will I still love you if you take my baby? I had to say yes. It would be an extremely impossible thing to go through, but at that moment I felt myself able to give Alex back to God and trust His plan.
The rest of the weekend was a whirlwind. Saturday they had Alex on his tummy all day in preparation for imaging Sunday. Something about not wanting air bubbles in his colon. We talked to doctors who informed us that he would either need 1 or 3 surgeries to correct this, depending on how far the end of his large intestine was from his backside.
Sunday was the hardest. I was being discharged but Alex was not. The day was intense. Apparently being born without an anus qualifies you for a number of other clubs and syndromes. So they started the battery of imaging and testing. One by one doctors and specialists came to me with scary information. His kidneys are enlarged, but we’ll keep an eye on it. His spinal cord is not tethered but it’s on the low side of normal. Nothing relevant for now, but it’s something you might need to know for the future. The biggest one was when the cardiologist came in to say his echo revealed a number of heart defects. With her heart diagram scribble pad she showed me where and what they all were—basically holes in various places that would allow blood to flow where it shouldn’t. She gave me acronyms like VSD, ASD, PDA, PFO, and explained how the unwanted blood flow could affect his heart and lungs long term. She admitted she really couldn’t say how this would pan out for Alex other than he might need medication, surgery, both, or neither, and only time will tell if and when. As it turned out, sometime between Christmas and New Years Alex’s heart conditions finally caught up with him with labored breathing and fluid overload, prompting the need for heart meds. And I was very thankful this happened while he was still in the hospital.
Completely overwhelmed, preparing to be discharged without my baby who was slated for surgery the next morning, I needed some praise music. Joe bought me a WOW hits CD for Christmas that year, and, as the keeper of the Amazon account, I had full access to the digital version on my phone. The song Oceans by Hillsong came on which I honestly hadn’t heard before. It totally brought more tears, as if I hadn’t already cried enough that day.
The lyrics start off:
You called me out upon the waters. The great unknown, where feet may fail. And there I find you in the mystery. In oceans deep. My faith will stand. And I will call upon your name. Keep my eyes above the waves…..when oceans rise.
At that moment, with a river of tears that didn’t end that entire day, I was totally comforted and re-centered. This wasn’t a mistake. (Even though Josh would later joke that God just put the hole in the wrong spot!) For the first time I felt like this was something God was calling me to. I listened to that song over and over and it became my private theme song for that season in my life. Unironically, a couple weeks into his NICU stay I finally had a morning where I made it to church. The Sunday before Christmas. The busiest day of the year. I managed to find a seat right in the middle with no easy escape. And the praise and worship team played Oceans. I totally lost it. But it was another affirmation where even in my deepest fear and uncertainty I knew God was walking with me, revealing Himself, His love, and would carry me through whatever lies ahead.
Back at the hospital…I was discharged, the boys all came to get me and we stopped at Applebee’s on the way home. The chatty laughter was background music to the main script in my mind which was the total emptiness I felt leaving my baby in the hospital, hoping his intestines didn’t rupture before 6 am surgery. Later that night I was tucking in Sam and my eye immediately went to a gift I received at a baby shower friends gave me a few weeks prior. A wooden sign that simply spelled F-A-I-T-H. Peace flooded me for a moment. God knew I was going to need that right then and there.
After a few hours sleep I got up and drove an hour back to Strong. Joe and the boys came up a little while later. Alex hadn’t met his brothers yet so this was our quick chance. They weren’t big on kids in the NICU so we made arrangements for them to see him in passing on his way to the OR. Pre-op was a whirlwind with nurses, anesthesiologist, surgeon all stopping in to ask a gazillion questions. I remember the one that took me off guard the most was “So what are we doing today?” and I was like, “If YOU don’t know, we’re in trouble.” Come to find out after Alex’s many surgeries, that’s just standard procedure. Surgery was a few hours but he did great. We were shown he had a little bag on the side of his tummy where his poop would go, and at some point an ostomy nurse would be by to show us how to take care of that at home. “Woaoh, wait. What? We have to do this at home?” Deep breath as fear set in. Apparently this would be for about 8 months until he had his other 2 surgeries. So now we just had to wait for his incision to heal so he could go home.
God supplied all our needs
Alex spent 33 days in the NICU which felt like an eternity. My heart was so divided. When I was in the hospital with Alex I felt guilty for not being home with my boys. When I was home I felt guilty for not being in the hospital with Alex. During that time God provided every step of the way. People started bringing us meals. We had only been coming to Little Lakes a few months—I didn’t know Dennis and Kelley hardly at all but they asked, “Can we bring your boys pizza!?” Knowing I couldn’t get to any Christmas baking, some homeschool friends made us our annual gingerbread house. We were gifted money for parking, gas, McDonalds, bills. More meals. After Joe’s time off from work ran out God provided friends to stay with our boys so I could get to the NICU to see Alex.
God provided scripture for me to hold on to
I know God speaks to us through His word, and I love when he does it in a repeated fashion so there’s no mistake. My friend Barb dropped off a bunch of goodies peppered with scripture cards. One in particular caught my eye: Psalm 46:10 – Be still and know that I am God. I really needed that. I snatched that and stuck it in my wallet. Truth be told, it’s still in there but the text is totally worn off—it’s just a blank white card right now, but I know what it says. Another day my friend Amy came to visit us in the NICU. She gave me a wooden plaque with the verse Psalm 46:10 – Be still and know that I am God. Then my mom gave me a mug for Christmas. Emblazoned with verse Psalm 46:10 – Be still and know that I am God. This was no coincidence—God was speaking to me, comforting me, and revealing Himself to me.
God provided an amazing care team for Alex
We were incredibly blessed to have an amazing surgeon for the 3 surgeries Alex would need to help him poop the regular way. It wasn’t just something he did because he was a general surgeon, that was his specialty. We had amazing nurses, and they all loved and remembered Alex. We spent a lot of time at Golisano the first few years of his life, and it seemed no matter what department we were in there was a nurse, doctor, surgeon, child life specialist, radiologist, phlebotomist, or hospital lobby attendant who remembered and enjoyed Alex.
We were blessed with knowledgeable and compassionate doctors. Before I was discharged when Alex was just a couple days old, I bluntly asked the attending neonatologist, Dr Meyers, my biggest question. Can Alex survive this?” I’ll never forget his response. He gave me a surprised head turn, looked at me, and confidently replied, “Absolutely—there’s nothing here we can’t fix.”
We also got the results of his genetic testing. We were given this news in a way that didn’t sound like bad news at all. There was no apology delivered with Alex’s diagnosis—no “I’m sorry to tell you…” lead in. The doctor simply stated the testing confirmed that Alex does have Trisomy 21, the most common form of Down Syndrome. She continued with, “What does this means for Alex and his future? We don’t know. Alex is Alex and he is going to chart his own course.” Indeed he would. It was a refreshing way to receive the news, in comparison to the doctors who warned us prenatally of the perils of Down Syndrome. And now we knew. Although I already knew. But this was confirmation and now we could just move forward.
God provided new friends
Right after Alex’s surgery a nurse told me there was another mom in the NICU with a baby like Alex and she wanted to introduce us. Henry was born two weeks before Alex. He too had Down Syndrome, a colostomy for a different reason, and heart defects but different ones than Alex. His mom Laura and I were introduced and it was so comforting. We were going through a lot of the same things and we could just be blunt, ask each other questions, give each other advice and learn from each other. It was Laura and Henry who paved the way a few years later for us to look into taking Alex to Nationwide and Boston Children’s Hospital for other procedures and surgery. And we’re still friends.
Kathy was Alex’s ostomy nurse. She was actually a pediatric nurse turned Dean of the College of the School of Nursing, but to our benefit, she still saw ostomy patients. I was so nervous to meet her but she had such a joy and compassion about her, that fear quickly melted. She taught me how to tend to Alex’s ostomy, and, knowing my anxiety she signaled to me with criss-crossed fingers and said, “We’re like this till you get through this.” Little did she know! She even gave me her personal number to call or text any time. Hopefully she didn’t regret that because I lost my ostomy template and texted her an hour after we got Alex home for the first time! I would text her pictures of his wound and how it was still so slow to heal, then pictures of his cuteness and his brothers. God used Kathy in a mighty way! She was my constant at Golisano Children’s Hospital. Every surgery, procedure, sedated exam, or doctor visit that brought us to the hospital, if she was around she would pop into the waiting room and see us, loving Alex, asking about his brothers, leaving with a hug and an “I love you!” It was so comforting. From ostomy care and beyond she made what was so off the rails just feel normal.
So, little side story: Having a baby with an ostomy had some perks, like you never smelled poop! Until you did, which meant the bag popped off and it was a mess. Through Alex’s 8-month ostomy adventure Kathy helped me laugh when I wanted to cry, and she gave me hope when I wanted to give up. Apparently I made Kathy laugh, too, because after more baths than one small child should have in one day, and a good cry, I texted her and inquired about a hazmat catalog for ostomy moms—so I could get some gloves and goggles for our bathroom mishap. Her response was, “You’re hilarious, you should write a book!” Her encouragement totally motivated me, and I did! It’s actually the fruition of a personal dream to write and illustrate children’s books. I guess God said ok to that request, although He wrote the story. “Alex’s Ostomy Adventure” literally came together in 2 days—8 years or so later I’m finally making progress on illustrating it. Sadly, Kathy passed away a year ago and I never got to hand her a hard copy. But, she read the text, was able to see some of the illustrations, and days before she passed I told her my plan for book dedication was always in her honor. And I know she’s with Jesus.
God moved mountains
Over the next few years Alex continued to progress, albeit slowly, in every area except eating solid food. There were so many possibilities and variables. Down Syndrome comes with low muscle tone, swallowing deficiencies, sensory issues, and rigid behaviors—all of which Alex participated in, and we explored them all.
Reading everything on dysphagia that I could find, I was perusing the internet late one night and learned that having an Aberrant Right Subclavian Artery could cause swallowing problems in one to three percent of the people who have it. I was just like, Amy! Get off the internet—he doesn’t have that! Long story shorter, I found Alex’s very first echo results and discovered he DID have that. ARSA for short, basically means the artery that supplies blood to the right arm is in the wrong place so it wraps around the esophagus and creates a choking sensation. So beside myself, I immediately got in touch with his cardiologist who told me yes, he has that, but it’s really a normal variant that doesn’t often cause symptoms. Alex had many symptoms, they just didn’t manifest at the same time or cause distress prompting intervention. But he spit up all the time, choked on water, coughed when he ran, and his face constantly got mottled. He would hold his arms over his head like he was taking deep breaths, and eventually his lips would turn blue and his oxygen would dip into the high 80s after he ate. Over the years everything seemed to get dismissed as reflux or some obscure, unexplainable anomaly caused by a combination of Down Syndrome, his quirkiness, or both.
Every swallow study and medical test revealed a motility issue that warranted another test and another decision to make. We finally traveled out of state to Nationwide Children’s Hospital in Ohio for manometry testing that they didn’t offer in Rochester. God provided entirely for that trip. We got insurance approval because they didn’t offer that test in Rochester, friends paid for our hotel, we were gifted money for gas. It was overwhelmingly comforting. Testing was as successful as it could be considering Alex was not a willing participant. The positive result was that his swallowing was fine. The one unusual finding was a confirmation of what we already knew. It was described as a consistent, elevated, pulsating, pressure on his esophagus right where the artery would be. So the doctors there referred us back to cardiology in Rochester to decide how to move forward. Nobody wanted to recommend surgery because it was definitely major, but his condition wasn’t life threatening.
Back in Rochester he had a CT angiogram which definitely confirmed his esophagus was dilated, but because there was no obvious trachea compression on the imaging, it was presented to us as we’ll operate if you want us to. I needed more than that—don’t leave that decision entirely up to us as the parents! God what should we do?
Reading about vascular rings I came across a blog on Boston Children’s Hospital’s website written by a couple of their surgeons. It sounded like exactly what we were dealing with. I emailed them a very medically technical explanation of what had been been going on with Alex, and within 2 hours I got a response from the cardiac surgeon funneling me into their second opinion process. This was August. Within a week we had 90% of his medical records transferred and a surgery date of late October pending insurance approval.
So, Alex’s insurance would cover surgery in an out of state hospital, but it had to be something he couldn’t get locally. Rochester surgeons could do the procedure but they were going to remove the artery, not relocate it. “But, doesn’t that provide the blood flow to his right arm?” I asked. “Yes, but 99 percent of the time the other blood vessels take over,” was the response I got. Right. But Alex is a one percenter. He didn’t have an anus and he had a symptomatic ARSA. The golden ticket to insurance approval was the letter we got from his cardiologist agreeing that he would be better suited to have this surgery in Boston.
The surgery date got bumped out a couple weeks to mid November so we could wait for insurance, and it got approved! Within 3 months of emailing surgeons, Alex and I road tripped to Boston—during the pandemic. Just the two of us. We left on a gray, foggy Sunday morning. I felt really bad passing the pirate ship playground when he started pointing like he wanted to go. I don’t think he was impressed that he was going to Boston, instead. A few hours into our journey we stopped at a rest stop. I ordered a roast beef sandwich at a Roy Rogers or something. Until the guy told me it was $11. Not that I didn’t have $11, but that just seemed exuberant when I had an apple in the van, so I politely declined.
I started to walk away, with Alex in tow, and this couple stopped me. The guys like, “Excuse me, why didn’t you get the sandwich?” I told him, “Because it’s $11,” and he was like, “We want to buy it for you.” Now I felt bad and was saying no, but he’s like “Please. We really we want to buy you a sandwich.” Finally I said, “Ok, thank you.” Alex and I got into the van and got situated, and I sat there with that sandwich and just felt such a peace that God was with us and providing every step of the way.
Once again God provided everything we needed for this trip. Aside from the blazing speed that doors opened and everything moved through, friends again paid for the hotel room we needed before his hospital admission, we were gifted money for gas and parking, and strangers bought me lunch. We made it to Boston without getting lost, and two days later he had surgery. There were a few bumps in recovery, but he still got out in record time, and we were home in a week just in time for Thanksgiving! And all of the coughing, throat clearing, face mottling, blue lips, arms over head, low oxygen—it all stopped. He still doesn’t eat solid food, but his surgeon did affirm that even though we had other hurdles to his feeding challenges, he would likely not move forward without correcting this. We knew we made the right choice.
By this time Alex was almost 6 and God continued to open—and close—doors. After all this it’s really hard not to see when God is moving. So, fast forward to this year, this was Alex’s 5th year at a special ed school in Rochester and he loved it. Until he didn’t. Long story short, I knew in December that we would be homeschooling him. Part of me was excited about the prospect and possibilities and the other part terrified. Seriously, God? Homeschool Alex? Do you know how much work that’s going to be? What about work? Not wanting to make a hasty decision we went through every process possible to keep him in school, but Alex had other plans. I knew a few weeks ago when I opened my Bible to:
Isaiah 43:18-19 – Do not remember the former things, Nor consider the things of old. Behold, I will do a new thing, Now it shall spring forth; Shall you not know it? I will even make a road in the wilderness And rivers in the desert.
The next day I notified his school. And just a few weeks into withdrawing him God is opening doors, providing resources, and making things possible. Again. And yes. Even after everything God has done, I’m still scared. But I know it’s going to be okay.
God provided strength and joy
I think of everything I went through as Alex’s mother and all the ways He carried me through. But God provided for Alex in all these ways, too. He gave Alex amazing strength and determination. Alex has been in the OR over 20 times, between his corrective surgeries, 3 cardiac surgeries, and a slew of other outpatient surgeries and procedures. For each one we were given a window of how much time he’d be in the hospital—and he made it out in record time. If we were told a week to 10 days he was out in a week. If we were told 3 to 5 days he was out in 3. I am also reminded this is his life and even after everything that he has endured, he is incredibly filled with joy. It gives me courage and strength to push through. For him.
James 1:2-4 – Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.
That is really hard to do. When faced with a trial considering it joy is not a natural response. At the start of this new challenge, I actually found myself better equipped to go to that place in God’s word. I wasn’t immediately counting it joy, but I wanted to so I asked Him to help me do that. Because I have seen what God can and will do through a trial and I know that it’s beautiful and safe. God will provide again. Friends to pray and carry us through. And Paula who lets me know it’s okay to cry while I’m laughing.
This isn’t a path I would have chosen, but looking back I wouldn’t change a thing. Don’t get me wrong—I don’t always love Down Syndrome, but I always love Alex. It’s challenging parenting a nonverbal child. He’s super smart, but it’s always a puzzle trying to figure things out. There’s so much inside of him that most people don’t see, because it takes time to extract. But we have magical moments—his hugs are therapeutic, his smile can light up a whole room, and the love he emits will penetrate your whole being like refreshing rain. He’s definitely a unique gift from God that I didn’t know I needed and wouldn’t want to live without.
I’m going to leave with these last 2 verses:
James 1:12 – Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him.
Nehemiah 8:10 – …Do not grieve, for the joy of the Lord is your strength.
Decade of Alex © 2026 by Amy Palermo is licensed under Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International. To view a copy of this license, visit https://creativecommons.org/licenses/by-nc-sa/4.0/