I was twenty-four when I found out I was pregnant. The joy of finding out that you’ll be a first time mother is beyond exciting. Even more so, when it happens after five years of marriage and you’ve been through the grueling tests, procedures and waiting associated with infertility.

This time the wait in the waiting room held only hope and excitement. I sat there in anticipation, dreaming of pink ribbons and bows, of little boys running around in shul, and wondered if I would finally have a name after my mother A”H.

My daydreams were interrupted as the nurse called me in for a routine sonogram. I almost skipped into the room excited to hear the heartbeat. As I lay there on the table, chatting with the technician, I noticed that she was rather quiet, which was unlike her. I looked up at her face and noticed a startled look and immediately questioned her if everything was all right.

Laura looked at me and said she that everything was in order but she had to call in another technician, because she was having problems with her computer. As she left the room, I inched my way over to the computer to glance at her notes. On the lower left side under technician’s comments, it said, “Multiple abnormalities noted.” I quickly got dressed and ran after her in the hallway.

“Is my baby okay?” I asked, or rather screamed.

Two doctors ran to my side and escorted me into the room. Laura followed silently behind them and they asked me if my husband is around. I shook my head. It was the first time I had come alone to an appointment. They gently explained that they saw multiple abnormalities on the ultrasound and needed to do further testing to determine a more definite diagnosis.

I suddenly felt dizzy and needed to vomit. I asked for a basin and sat there retching for several moments while Laura rubbed my shoulders. Tears were streaming down my face, and I was angry at my husband for not being there with me. I asked Dr. K. if he could please let my husband know that I need him, as I knew there was no way I was capable of driving home safely.

They immediately scheduled a Fetal Echocardiogram and a 3-D sonogram of the baby. They also asked me to contact my Rav for permission to perform an amniocentesis.

Shlomo arrived 45 minutes later to find an inconsolable wife, with bloodshot eyes bawling in the waiting area. I couldn’t believe that after all we had been through to get pregnant with this baby, that something could possibly be amiss.

I did everything right, I thought. I took all the recommended prenatal vitamins and folic acid. I quit strenuous exercising and made sure to eat three healthy meals a day. I went religiously to my doctor from the beginning of the pregnancy, and followed his advice and recommendations to the T. I also tried to daven every single morning, and stopped listening to non-Jewish music when I was told that the baby officially hears everything even prior to being born. I attended a natural birthing class, and had it all planned out – naturally of course, as this was what I was told was healthiest for the baby. Where did we go wrong? I wondered.

My husband finally got me to come to the car and head home. When I got there I sobbed for hours and hours until I finally fell asleep in my clothes.

Within the next few weeks, I quit my job and stopped talking to my friends. They all assumed that I was just hormonal. I scheduled the recommended appointments and met with a cardiologist, geneticist and a neurologist. They all agreed that something was clearly abnormal, and offered me three options: terminate the pregnancy, go ahead and deliver with no intervention, or deliver the child, do whatever is medically available. I added one more option, just accept that he/she is not perfect, and love him/her no matter what!

On April 3rd, 2004, I gave birth to a baby girl. I was in the beginning of my ninth month when the team involved in my prenatal care, decided that it would be safer to deliver the baby via cesarean section now, rather than wait until my due date. So much for natural childbirth classes! I was whisked into the operating room and a team of doctors stood ready with a room full of equipment in case the baby needed immediate intervention.

She was born with a serious congenital heart defect, four missing fingers, an abnormally shaped head and liver problems. But she was nonetheless beautiful, at least to me. As soon as I could get up in bed, I had the nurses wheel me over to the NICU to look at my daughter. She was hooked up to more equipment than I knew existed! Every part of her body was attached to something else, or so it seemed. She had an endotracheal tube attached to a respirator in her mouth, and tape going across her face. Through it all, I was able to see the shape of her nose. It was the cutest little button nose, just like my side of the family! I knew she was mine, and although we had questioned this earlier, I knew I wanted to name her after my mother. I knew my mother would beseech the heavens that this little princess named after her, should be healthy and eventually bring us nachas.

That shabbos we made a large kiddush, and named our daughter Chana Bracha. Our Rav suggested that we add the name bracha due to her illness, and Chana, of course after my darling mother A”H. For years I dreamt of a name for my mother, who was a rock in her emunah and betachon.

In four short months our precious Chana’la underwent open-heart surgery, gastrointestinal surgery, and a liver biopsy. She spent two full months on a respirator, and two more months on C-pap. I sat in the hospital a minimum of four hours every single weekday, and spent two hours a day traveling back and forth to her.

One day, the doctors surprised us by suggesting that she be moved from a hospital setting to a long-term care facility. It was then that I walked into the waiting area and completely fell apart. Sending my child to a long-term care facility was like sending her to a hospice center. At least in my mind that’s the way I viewed it.

A wonderful frum woman from Lakewood saw me crying and came over to console me. She told me that her son was in the same NICU awaiting full time nursing in order to come home on a vent. When I heard that bringing home a child on a respirator is possible, I ran to the social worker and asked if was possible to bring my baby home. She looked at me skeptically, and then suggested we discuss it with the doctor to see if it was a realistic possibility for our child.

The doctor explained that my daughter was still on 13 medications, as well as a nasal cannula for oxygen, albeit on a low rate, attached to a pulse oximeter for oxygen level monitoring. She also required tube feedings and lots of chest PT. In addition, Chana Bracha was on a waiting list for a liver transplant.

“She’s a full time job,” the doctor exclaimed. “I don’t know too many such medically fragile children at home. Most families opt to place such a child in a long term care facility or rehabilitation center.”

”She’ll never be normal anyway”

“She will probably not live very long, why get attached?”

“Your home will look like a hospital in no time”

“It will be a terrible strain on your marriage, why destroy your life for a child that won’t know the difference.”

The nurses and doctors were not very helpful and cooperative in making this decision. Most of them were quite negative and kept on giving us different reasons why this decision made no sense.

My mind was made up. My sweetheart Chana Bracha was going nowhere but home with me! I then had to deal with convincing my husband that I’ll be able to manage. My husband was not so easily convinced. He hoped I would get my life together and go back to work so that he could go back to the Kollel life he was used to until this bombshell.

Women, I’ve learnt, are strongwilled. In an effort to convince my husband I sat down with his Rosh Hashiva, dayan and best friend. I needed all of them to support him when he discussed the matter with them.

Sure enough, these were precisely the people he consulted with, when I put enough pressure on him. Several days later, Shlomo joined my agenda in getting my Chana Bracha home.

It took another two weeks to get all the homecare set up. Boxes and boxes of tube feeding paraphernalia, syringes, oxygen supplies, suction machine, and many medications, were delivered to our door. Our small apartment now had to accommodate what we viewed as a full medical supply company.

The day finally arrived! I closed the front door behind us and realized we are on our own. It was a frightening feeling. After so many months of being surrounded 24 hours a day by dozens of professionals, in the top medical facility, it seemed like a tremendous responsibility to care for this fragile child alone.

But alone and on our own, was not what we were. Half an hour later, the bell rang (once again). Thinking it was more equipment or the pharmacy for the umpteenth time, I groggily asked my husband to just open the door so it can be put in the foyer. As I stared at my daughter, and wondered where I would start setting everything up, I looked up and saw my two closest friends standing at the doorway.

Rochel and Sara Miriam insisted I sit down on the couch, and asked for instructions on how to tube feed the baby. I argued that it was too hard for them to learn, but they gently reminded me that I only learned how to do it a few months ago. I explained the process to them, which they quickly caught on. This was probably the biggest act of chesed I’ve encountered in our ordeal. Most people volunteered to help, but not when it came to the physical needs of our child. For a mother, it’s an overwhelming task to know that she and only she can care for her child. When two friends offered to actually learn her care, I knew I was not alone.

From that day on, my friends took turns once a week to relieve me for a couple of hours so I could go out with my husband to unwind. They learnt how to suction, administer additional oxygen when needed, feed, and bathe Chana Bracha. It was a lifesaver, and an opportunity for my husband and me to reacquaint after a hard week performing the tasks of full time nursing care.

It took months until we learnt how to navigate the system and red tape in acquiring nursing care and early intervention services. It then took several more weeks to get accustomed to strangers walking in and out of our house and learning to trust them and entrust our child to them.

Anyone who’s had home care nurses can write a book on the nurses they’ve encountered. We had those that were so incompetent, I wondered if they ever saw medical equipment before. Those that were so stupid, you wonder how they passed their exams in nursing school, and nurses that were so compassionate and caring, they end up being your best friend.

Slowly Chana Bracha got weaned of some medications. Her oxygen levels increased, and we were able to wean her off daytime oxygen. We increased her feeds by mouth and decreased the tube feeding.

Chana Bracha smiled for the first time! We danced in excitement and were so hopeful that our baby was finally getting through her rough start.

Our doctors didn’t have an answer as to why she was born with so many abnormalities and couldn’t predict her future neurologically. Her MRI scan proved normal and CT scan of her head was clear. Her medical progress gave us much hope for her developmental progress and put some of our fears aside.

My biggest issue was dealing with other young couples in our community. We live in a young, thriving, close-knit community. It was difficult dealing with all these medical issues and life threatening emergencies, while all our young neighbors were comparing designer blankets and shopping for clothes for their babies. I also found it harder and harder to relate to their kvetching about supper burning, or a night up with a teething baby. They had a hard time dealing with me, as they were scared both to ask questions, for fear of being too nosy, and not asking questions, fearing they’d seem uncaring and uninterested.

To avoid questions, I would check the front yard before leaving to an appointment to make sure the neighbors weren’t there. I also put my baby in the back room, so that when people knocked to borrow milk, they wouldn’t stare and comment.

After a while, with only my two close friends to talk to, I realized that it was up to me to set the tone as to how I wanted to be dealt with. I finally came out in the open when most of the neighborhood sat out in our shared large courtyard, and brought my baby out, with the nurse in tow. I introduced Mary, and showed them that Chana Bracha needed medical care, and offered to answer any questions anyone had. They stared at me in surprise, and then one woman stood up, and with tears in her eyes, thanked me for having the courage to come out finally and talk to them. They did ask questions, which I answered in layman’s terms.

All of a sudden the uncomfortable meetings outside were friendly and open. My neighbors offered their help, and although I didn’t ask for the help, it was comforting to know that people really did care. I learnt over the years that most people DO care, and it’s up to us to set the tone and allow outsiders to show they care.

Chana Bracha is now three years old. She is a challenge both medically and developmentally, but she is giving us untold nachas in her very own unique way: The joy in our home when she pulled herself up (yes, at 35 months old), or the excitement when she says Mama, (albeit being one of four words). The tears in my eyes as she points to her nose when asked, or points to her feet when shown her shoes, is constant.

I thank Hashem for each and every milestone, and ask that we be zoche to see her reach many more. I thank Hashem for sending that woman in the hospital waiting room that convinced me to attempt to bring my daughter home, which allows me to reap the joy that this special neshama brings to our family.

I still daven for a refuah shelaima and have the same hopes and dreams for my daughter as any parent that gives birth. At the same time I daven for a refuah, I daven that I should be able to accept that Chana Bracha will bederech hatevah, not develop as my neighbors children, and that I should be strong enough not to compare her development to healthy children.

As I think back to my initial dreams of raising a child, instead of getting glassy eyed over my shattered dreams, at this point, tears fall freely as I appreciate our new dreams, and our new hopes.

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