Rose Colored Glasses

^“You’re so special.”

It’s one of the comments I dislike the most, whether it comes from strangers or even those who know me well.

It’s supposed to make me feel good, but I don’t see it that way. What I want to respond is: “You’re special, too, I just don’t know why. My pekel happens to be see-through — everyone can see the package I’ve been dealt — but other pekelach are wrapped and tied with a fancy bow. Still others look small but could be very heavy and people just don’t understand the struggle… But we’re all special!”

Additionally, there are always two ways to look at a situation. I like to look at the bright side.

But let’s start at the beginning of my story.

I was considered older when I got married at twenty-three, and once I did, I felt like life would be perfect from that point on. I wasn’t prepared for anything to go “wrong” — although, of course, it’s exactly how it’s meant to be. Even when the doctors call something a fluke, a mistake, we know it’s not — if it’s from Hashem, it’s 100% perfect, we just struggle to see that from our flawed perspective.

My son Shloimy was born around a year after we got married, and he was the most perfect baby — until he wasn’t. At two-weeks-old, he began crying nonstop. The doctor dismissed it as colic, but it was worse than the typical colic.

It was all so new to me. I was still a young shana rishonah wife, I wanted to let my husband sleep. I remember him waking up one morning, after Shloimy had screamed through the entire night, and asking me in bewilderment, “Why are you wearing the same clothing from yesterday?”

He had no idea that I hadn’t even had a second to myself the whole night long.

When a friend called me a few weeks after the baby was born, asking what gift she could get me, I said, “All I want is one hour to myself — that’s it!”

I was up all night, for weeks on end. People gave me all sorts of advice and, out of desperation, I tried absolutely everything — changing my diet, adding vitamins, holding the baby in different positions… Whatever my aunt, uncle, sister, mother, neighbor, friend suggested, I tried. 

It’s going to pass, I kept telling myself. But for weeks, it didn’t.

And there were other concerns. By six, seven, eight weeks, most babies start to smile, show awareness of their surroundings. But Shloimy — even in his rare calmer moments — wasn’t receptive to me. He wasn’t developing like a typical baby.

Everyone told me I was just nervous. “You’re a first-time mother, you’ll see, everything’s fine….” but when this just kept going, I put my foot down. I went back to the doctor and said, “Something is wrong with this baby.”

The doctor concurred with me at last. Something was wrong — but what?

It was a bittersweet moment. Bitter, because yes, there was something wrong with my child. But sweet, because finally I was being validated.

We scheduled an appointment with a neurologist, and it became the first of many. We ran from doctor to doctor, test to test, therapy to therapy. But we didn’t get an actual diagnosis for a very long time.

Here’s something I want to explain: People say ignorance is bliss, but I say, knowledge is power. You might think, why do you need a diagnosis, just treat whatever the presenting issues are — but a diagnosis is vital and empowering. 

With a diagnosis, you can learn about and understand everything that comes along with that particular condition. You know what issues to look out for. You know the recommended treatments and therapies.

When we finally learned that Shloimy, and by then, his brother Mendel, too, had Aicardi-Goutières syndrome (AGS), it was a revelation. AGS is a genetic disorder that affects the brain, spinal cord, and immune system. It’s rare, although it’s becoming more common as more children who were previously undiagnosed are now being diagnosed with this condition. 

Some things that are typical for a child with AGS are liver issues and a low platelet count; once we knew this, we could simply treat the platelet issue and not have to keep undergoing rigorous and uncomfortable testing to uncover the source.

And having a diagnosis also means that whenever we went to a new doctor or therapist, we could explain the situation in one word, rather than detailing all the symptoms and issues each time. They were also better able to help our child.

Now that we have the diagnosis, I’m baruch Hashem able to have healthy children, and we have two — a son and a daughter. We know that if someone is a carrier of a genetic condition, they can make sure that Dor Yeshorim runs this test before they get married, and that can help ensure that their children should b’ezras Hashem be healthy.

Back when we walked out of the first neurologist appointment — with his recommendations for MRIs and other testing — we knew nothing. How will this end? I remember thinking. Will this baby end up in an institution? 

I was out on the streets and still getting mazel tov wishes. I put on a huge fake smile, but inside, I was crumbling. What would my child’s future look like?

We started the long haul of evaluations and therapies. We poured thousands of dollars into appointments and therapies that were worthless. At the time, though, we didn’t know where to turn or what to try.

I heard a story about a man who flew from England to America to attend a family wedding, and had a heart attack in the airport. He landed up in the ICU for ten days, and got a bill for $30,000. 

He was very distressed and went to his Rav, saying, “I understand that the heart attack was bashert, but couldn’t it have happened a few hours earlier, when I was in England? That way I would have been covered by insurance and wouldn’t have had to pay a penny!”

The Rav told him, “It was bashert that you had to spend $30,000 on medical bills. Can you imagine what kind of medical crisis it would have taken to cause you to spend all that money in England? Hashem did you a chesed by taking it all in ten days.”

That story gave me chizuk. I try to remember that nothing was wasted money; it was all bashert to be spent.

Eventually, when we had a second child with the same condition, we saw the positive side of everything we had been through; we knew exactly what would be helpful and what wasn’t worth trying.

Life became very busy with therapy and appointments, and we were still struggling to find a diagnosis. By the time Shloimy was a few months old, I had given up my job — he was totally dependent, ate via a feeding tube, couldn’t communicate, couldn’t move around by himself. 

When he smiled for the first time, at eight months, I cried. Finally, a sign that there was something going on inside of him!

Shloimy never did learn to walk or speak. But eventually, he began to smile and giggle, and we learned that that was enough. We could tell when he was happy, satisfied, or in pain. And slowly, life fell into a routine — until the birth of my second child.

When Mendel was born, we still didn’t have a diagnosis for Shloimy. But my heart told me: This baby has the same problems as his brother.

He, too, was born with a clubfoot, which has nothing to do with AGS. I knew I’d have to start treating it at two weeks old, so my husband came to stay in Lakewood, where I was in a kimpeturin heim, so he could accompany me to the necessary appointments.

The night before Mendel’s first appointment to treat the clubfoot, I wasn’t feeling well. I thought maybe I’d eaten something off, but in the middle of the night, I called my husband, who was staying nearby. I couldn’t stop vomiting. 

We called Hatzalah, and I was rushed to the hospital, where they told me I had gallstones. I needed surgery, but we had to put that off until I was back in New York, due to my insurance policy not covering it out of state.

So I was in hospital, and when I was speaking to my husband, I realized he sounded worried. “What’s going on?” I asked him.

He tried to downplay it, but I persisted. “I know I’ve just had a baby, I know I’m in the hospital, but I really need to know what’s wrong.”

He explained that the baby had come down with a fever and the staff at the kimpeturin heim were worried.

I told him, “Just send the baby to the hospital. I’m here anyway.”

By the time he was admitted, the fever was gone. But they did a lumbar puncture to test him, and admitted him to the pediatric unit, which turned out to be on the same floor as the unit where I was. 

The next morning, I was feeling a bit better, so I went to see the baby. I was wearing a hospital gown with a robe, I had an IV pole, and I was so exhausted, so depleted. I felt like I was just being slammed with more and more challenges, over and over again. Hashem, why me? Why this? I was thinking.

As I walked along the hospital corridor, a woman stopped me and said, “Ma’am, are you lost?”

I looked at her and blurted out, “You have no idea how lost I am!”

She took in the scene, a disheveled woman in a hospital gown, dragging along an IV pole toward the pediatric unit, and she said kindly, “You know, the psychiatric unit is one floor up from here…”

Now I can look back at that incident and laugh. But at that point, I felt that life just couldn’t get worse.

I once heard a story about a man called Michael Levi. Despite being blind, he’s leads a wonderful life, and he credits his mother, who taught him to be independent from a young age.

When she passed away, Michael told the story of how his mother allowed him to walk to school on his own, at age twelve, after practicing for weeks. She’d trained him, teaching him the route, and all the obstacles along the way. Finally, the long-awaited day arrived, and he left on his own to navigate the route to yeshivah.

As he turned into the gate, the security guard called out, “Wow, Michael, you made it — congratulations!” and his excitement knew no bounds; He’d done it, navigated the city streets completely independently.

And then, as he walked through the front door of the building, he heard the security guard say, “Oh, Mrs. Levi, you’re here, too!”

And that’s when he realized his mother had been a few paces behind him, watching over him all along.

That story reminds me that however alone we feel, Hashem is watching. We’re never alone. More than that, like the famous mashal of the footprints in the sand, Hashem is actually carrying us through the challenging times.

There’s always a light at the end of the tunnel. There’s always a better ending in store.

And so we picked ourselves up and kept going. I had the surgery, and we fell into a new routine. When Mendel began showing the same symptoms as Shloimy had, I knew what to do, which doctors to turn to, and how to navigate the therapies, and so on, which made it slightly easier.

I also learned to accept help, and realized that if I wanted to be a productive mother, I couldn’t neglect myself. I needed to allow myself to have a nap, go shopping, and see friends, to ensure that I could be there for my children. 

We got a lot of help, and I began teaching again. Shloimy was nonambulatory and had a feeding tube, so we set up a mini hospital in our dining room, with all the equipment he needed. We were constantly in and out of the hospital with various viruses. The nurses would see us and say, “Oh, the Feferkorns are here again!”

Since we always brought chocolate to thank the staff, eventually the nurses would simply say, “Oh, the chocolates are here!” when we arrived with Shloimy yet again.

It wasn’t easy. We had two very handicapped children. We hired nurses for the nights, because the boys didn’t sleep well, and in our tiny apartment, that was a challenge.

Then came Succos, several years ago. We were staying with my parents. I had all the equipment with me, the oxygen concentrator, the bypass… I wanted to be with my family for Yom Tov, and I wasn’t interested in going into the hospital.

So when Shloimy started showing his regular symptoms of a respiratory virus, I called the pediatrician, started him on antibiotics, and insisted that we could take care of it ourselves, at home. Besides, the West Nile virus was going around at the time — it didn’t make sense to take him to hospital, I reasoned.

My mother knew better. “Rifky,” she said. “Do me a favor. Take him in.”

So on Shabbos, the first day of Chol Hamoed, we called Hatzalah, and I took Shloimy to the hospital. He was struggling to breathe, and I figured they’d intubate him, but somehow, nothing was helping. My husband had left a phone on, and on Shabbos morning, I realized he had to be called. Shloimy’s organs were shutting down.

I turned around — and there he was, in the hospital, a three-hour walk from my parents’ house.

“What are you doing here?” I asked in amazement.

“I felt like I had to come,” he said, simply.

I updated him about the situation, and then said, “I recently heard that parents have a special power when it comes to davening for their children. We are two of the three partners in this child, and while Hashem — as the lead partner — has the biggest say, we also have a say. Let’s beg for this child’s life because we’re partners in the deal!”

We sat there and davened…until it became clear that the Third Partner had a different plan. It was time to say goodbye.