我们的过山车之旅

I’d like to take you on a little ride today.

A ride on our roller coaster, a small peek into the world of being a mother of two adorable children with special needs.

But first, I’ll tell you what I wanted someone to tell me at the beginning: Yes, it’s hard, it’s really hard and sad.

Your heart can be in so much emotional pain, it feels physical. The pain sometimes takes your breath away. And it’s okay to feel that way.

It’s normal to cry and cry and feel like you might never stop crying. I’ve been in that place. But I’m not there anymore.

With Hashem’s help, you won’t be in there forever. Life moves on and it usually does get easier.

Let me tell you my story.

My name is Chanie, and I have three adorable boys, ka”h. When they were ages six, four, and two — and a handful, as you can imagine — we were blessed with an adorable baby girl. Our princess.

At first, everything seemed normal, but as the months passed, and our daughter wasn’t babbling, wasn’t making eye contact, and was physically weak in many areas, we realized something was wrong. She was diagnosed with autism.

She was given a ton of Early Intervention services as well as private therapy, and we worked with her a lot at home, too.

Baruch Hashem, at age two and a half she started walking, and when she was almost four years old she started to talk.

Now, at age six, our daughter is in a special ed school. She is adorable and lovable, and also terribly anxious. She’s a handful — endless energy, and her fears can cause major tantrums when she gets triggered. She has no danger awareness. When she’s home, I can’t look away for a minute; I always say I wish I had a tenth of her energy!

We’ve had to make a lot of lifestyle changes because of our princess’s anxiety and behaviors. We can’t go away as a family or even eat out for Shabbos or Yom Tov. We hire a babysitter for Chanukah parties and make the Purim seudah at home because the noise and craziness would scare her.

Then, when she was four years old, we were eagerly anticipating the birth of another baby.

Our son was born prematurely at thirty-one weeks, weighing four pounds two ounces. Many people told me they knew of babies born earlier, and smaller, who were now absolutely fine, but that didn’t make me feel better. I just wanted my baby home, safe and healthy.

Right after birth, our baby was put on a CPAP for breathing and an NG tube for feeding. At ten days old, he began breathing on his own. I was sitting near his crib in the NICU, and the radiologist came by to take the baby for a head ultrasound (standard for babies in NICU).

The results came back and showed a grade 1 brain bleed. The doctors explained that a grade 1 or grade 2 bleed is common in premature babies, but that it hopefully wouldn’t have any long- lasting effects.

But our baby, it seemed, needed more action than that.

Just thinking back to those days brings me to tears. Because over the next few days, the bleed got worse and worse, and by fifteen days old, our baby was having seizures.

After an MRI, the doctor said he had a grade 4 bilateral brain bleed — the highest level, and affecting both sides of the brain. Our precious baby had had a stroke on both sides of his brain, and the seizures were the result of that.

I sat there as the doctor was telling me this information, in shock. I knew he was a preemie, I knew we’d have a journey ahead of us, but I had not anticipated this. The tears started flowing, and they didn’t stop.

That day was probably the hardest day of my life.

Later, when I was trying to swallow some food, I asked my husband, “Do you think I’ll ever stop crying?”

We were dealing with a special needs daughter already. I didn’t think we could handle more.

I knew, though, that if I didn’t start working on my emunah and bitachon, I wouldn’t get through this. I needed whatever chizuk I could get.

I started doing something I never thought I’d do. I’m not a writer at all, but I started journaling.

I bought two notebooks — one was for the baby’s care, and I used it to take notes on the doctors, therapies, medications, everything I needed to know to care for the baby. Until today, I can’t manage without the notebook.

In the second notebook, I just started writing. I didn’t write a lot. Today I rarely write because it’s hard to find the time, but whatever I wrote then is priceless to me. Writing was so therapeutic.

I’m not a rebbetzin but I was desperate to surround myself with bitachon and emunah and I wanted to start the journal right. On the first page was printed “This book belongs to…” and had three empty lines. I wrote:

“Haboteach B’Hashem chessed yisovvivenu, he who trusts in Hashem is surrounded with kindness.”

“Kaveh el Hashem, chazzek v’yametz libecha, v’kaveh el Hashem, Hope for Hashem, be strong and He will give your heart courage, and hope for Hashem.”

“He’emanti ki adaber, I believed because I spoke.”

We always learned, the more you speak with emunah, the more you internalize it. That’s what I was trying to do.

I loved singing to the baby, especially Reb Moshe Goldman’s “Elokai Neshamah.” I once heard that Rabbi Orlofsky from Ger told his daughter, who had a child with Down syndrome, to say Elokai, neshamah shenasata LI, the soul that you gave “to me” (instead of bi, in me), tehorah hi, it is so pure.

It felt like that message was appropriate for my baby. I kept telling him, it’s just the body that’s “broken,” the soul inside him is so pure.

I tried to stay positive in the NICU. I would schmooze with the nurses, smile, bring them something nice to eat. It was hard, though.

I’d sing to the baby and start to cry. Once, one of the nurses said, “I’m happy to see you crying, it shows you’re human.”

I guess she didn’t see me much because I can assure you I cried plenty.

Honestly, I’m not sure why I cried so much. Maybe it was because he came after a special needs daughter, and we felt “entitled” to a healthy baby.

Maybe because he was so sick at the beginning and we weren’t sure if he’d make it and come home (the neurologist told me that with such a severe stroke, he’ll never come home. Hearing that was one of the worst parts of the ordeal).

I know many mothers handle the birth of a child with special needs with more grace and acceptance than I did, but everyone’s needs are different. Everyone’s personality is different.

When my daughter was diagnosed at nearly two years old,  I didn’t cry much. It felt different since we already knew and loved her. With this baby and the brain injury there was much more grief, a longer road to acceptance.

Fast forward to today. Our prince Moishy (or “Baby Moishy” as his sister calls him), is fifteen months old. He’s at home, though we have had other hospitalizations since his days in the NICU. He has cerebral palsy, chronic lung issues, and visual impairment, and is fed by feeding tube.

Two months ago, when he was over a year old, he started smiling and cooing. That smile melts me. It lights up the room. He can’t do much physically — just about roll over — but he’s beautiful and the Shechinah shines from his face. My love for him is crazy.

There’s a long road ahead, but we believe there are no limits to what he’ll achieve, and look forward to seeing him make more progress.

LIfe is busy, but sometimes I still feel like the tears are at the edge of my eyelids. And I know that grieving is healthy; I’m grieving the dreams that I had for this child.

On his first birthday, I sent a text to a close friend, the mother of Baby Pessie, who was in the NICU together with Moishy.

I wrote: It’s such a bittersweet day for me. Celebrating his birthday while letting go of the dreams I had for him and creating new ones unique for Moishy. So this is what we’re celebrating: we’re grateful he’s home, breathing on his home, slowly gaining weight, and getting stronger. He’s ka’h gorgeous, and we got through this year with emunah intact, which is the most important.

When we were in NICU I’d tell the baby, “You’re so calm, because you’re in your mommy’s arms.” And I’d think: If I could just let go and remember that I’m in Hashem’s Hands, I would also be calm.

I remind myself also that as much as I love my children, Hashem loves me more, and as hard and painful as it is, there must be a plan. And most importantly, Hashem does not make any mistakes. It was Hashem’s plan for us to have a daughter with autism and then Moishy.

And finally, to get through day-to-day life, I’ve learned to practice taking one day at a time, letting go, and looking at life with a sense of humor. I remember telling Baby Pessie’s mother that in my experience with having a special needs child (my daughter), I knew that without a sense of humor you can’t make it through the challenges.

You need to find a way to laugh along the journey. My baby has twenty-four-hour aides, and anyone with aides will tell you they can write a book about the experience of having strangers full-time in your home... I wrote many down in my journal and now, I can even look back at them and laugh.

I’ve learned to enjoy a baby’s smile. It’s priceless. I’ve even laughed when my daughter puts on the washing machine on Shabbos, with mixed loads of laundry, and a camp CD blaring in the background. The baby’s monitor is beeping, it’s Shabbos, there’s nothing to do but let go and laugh.

And so that’s what I try to do, as I ride the ups and downs of my journey. I hope it helps you on yours.
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Excerpts from Chany’s journal: A ride on the roller coaster of the first few months

‍Rosh Chodesh Cheshvan

I davened Hallel, and it felt different from usual. It was a few days after our tzaddik was born, and I was recovering from a C-section. My mother sent me away to Eishes Chayil [kimpeturin heim], and I went leaving a piece of my heart in the NICU.

It was the strangest thing, and I was very sad to leave him, but I got to rest and eat properly. I gathered strength for the upcoming weeks, not knowing what was in store for me.

Rosh Chodesh was a beautiful day, and I went to daven Hallel in the magnificent garden. I was grateful to be alive. Hallel was emotional — thanking Hashem for the past and davening for the future.

Rosh Chodesh Kislev

We were still in the NICU, now past the stroke. Things were so different from a month before, when we thought we were “just” dealing with a preemie.

I cried and cried as I davened over his crib. Thanking Hashem with tears in my eyes and then literally holding my breath as I begged, “Ana Hashem.”

Writing this, months later, I still have tears in my eyes just thinking of that Hallel, surrounded by beeping monitors and non-Jewish nurses talking, our dear friend Baby Pessie in crib 17 and my little baby near me…

Rosh Chodesh Teves

Baby is home from the NICU, baruch Hashem! He came home on Chanukah, and I got to sing Hallel with him in the house. I couldn’t believe we were really home.

I cried, but this time it was also with tons of gratitude. Yes, there was a journey ahead but with Hashem’s help we will get there, be”H.