I have two beautiful children. Chavie is 11-and-a-half and Isaac is 8-and-a-half. They are the lights of my life, my reason for living. Their smiles light up a room, and there isn’t a day that goes by that they don’t make me smile at something they do. In my dreams, we would just be together without the world intruding, but it does.

You see, Chavie and Isaac are special children. Disabled, handicapped, differently abled--there are many ways of putting it. They do not walk, do not talk with words, nor sit up, or do most things like you and me. This is our story, as well as I can tell it.

Chavie was born on January 21, 1995. She was born on Shabbos day and we just spent time cuddling her and singing zemiros. We were home the next day.

Within a few days, she was having trouble nursing, and it was a battle to get her to eat. I spent all day between nursing and bottle-feeding her. She never slept well, waking up every two hours or less. She cried in the car every single time we went out, and she was genuinely miserable. She was constipated all the time; she wasn’t interested in playing with toys.

I complained constantly to the doctor. I even noticed that the muscles in her thumbs were not developed, because she never opened her hands. She showed absolutely no interest in anything. I will never forget, when Chavie was 4 months old, and the doctor held her up like an airplane. She arched her back and picked up her head, and he pronounced her just fine.

When she was 5 months old, I insisted on seeing another doctor in the practice. All of a sudden, he got very worried and did a series of tests. He told me she was developing slowly, and that I must do exercises with her. He warned me that I must come back in a month. At this point, I gave up nursing and switch Chavie to bottles.

At the appointment the next month, my husband came with me. The doctor asked us a battery of questions, and informed us that he wasn’t sure if Chavie could see! Later, I read in the chart that he thought she was autistic, because she wouldn’t make eye contact--but he didn’t tell us that. He sent us to a developmental pediatrician, who ordered an MRI of the head the next day. At the radiologist, they noted something on the MRI and sent her for a CAT scan. They then told us that she had calcification on the basal ganglia in her brain, which could have several different causes, so we would have to test her blood for them.

They had to sedate her for the scans, and it was the first (and only) time she slept in the car in her entire life! They tested for CMV, rubella, herpes, and a few others--called the TORCH titers. She was negative for all of them. We then saw a neurologist who told us it was a virus in utero that caused this unknown disease. Since they had no diagnosis, they also had no prognosis. We were sent Early Intervention for an evaluation. Chavie qualified for services automatically, and we were enrolled in a center-based program. They also told us that Chavie would most likely, be mainstreamed by first grade. They should have kept quiet.

After a few months, I realized the therapists at this center were not very capable, so I enrolled Chavie in a different center, which provided sessions on-premises and at home. It was great to be able to participate in the sessions at home. I also took her to outpatient therapy at a local hospital a few times a week.

Settling into a lack of routine

Welcome to Holland, or more like the never-ending roller coaster of the rest of our lives. As far as the next few years, they are pretty much a blur. I remember being taught to feed her, trying to add as many calories as possible because she wasn’t gaining weight. She had hearing tests and eye exams and orthotic evaluations.

When she was 10 months old, I brought up the constipation again with the doctor. He finally bothered to inform me that many neurologically impaired children needed manual assistance for elimination. Wow! If only I had known that sooner, we wouldn’t have had to go through the torture of all those months.

But Chavie was still miserable. It wasn’t until she was 13 months old that a friend of mine suggested she may have acid reflux. My friend said we should speak to a GI specialist. Thank you, doctor, once again. She did indeed have reflux and immediately started a new medication and a different feeding regimen. They also suggested a g-tube, but we weren’t ready for that step. We worked closely with a nutritionist to find the right formula for Chavie; after all, she was able to drink from a bottle.

Meanwhile, Chavie herself was a sweetie. She smiled at us, loved music, and loved dancing around with us. She adored bath time and being massaged, being read to, hugged, and especially kissed. When she was 2, she discovered TV, especially Blue’s Clues (a great show for kids) and till this day, she goes crazy over that show. It was so nice to have something she could do by herself without hands-on entertainment. She could not sit up by herself, hold her head up well, say anything, hold on to anything, or walk. Yet somehow, she made her needs known.

When Chavie was around 1, I started wanting another baby. If only we could have some normalcy in our lives, I might not be so upset about having a disabled child.

We went to more neurologists and geneticists. I will never forget one doctor who needed some lessons in bedside manner. Chavie was about 18 months old, and we went to him for help in figuring out a diagnosis. He took one look at her and said, “Oh, she’ll never walk.” You can imagine how that felt to first-time parents just trying to find out what was wrong with their child.

The geneticists said, “Oh, she has no dysmorphic features and she was negative for all the typical diseases, so it can’t be genetic.” Right after that, I found out I was pregnant. I was delighted. I was still schlepping Chavie out to therapies and anywhere I needed to go, but it felt so normal to be a happy, expectant mother.

My sister had a baby, and I spent time practicing taking care of Chavie and a baby at the same time--I was a little nervous. Aside from an amniocentesis to rule out Down Syndrome, my pregnancy was normal. We didn't worry about a genetic disease, because the doctors couldn't diagnose any.

Another special child

When Chavie was almost 3 years old, on December 8, 1997, our little Isaac came into the world. The birth went normally. Baruch Hashem, my mother was able to watch Chavie while my husband was with me at the hospital. Chavie was very upset at the new arrival, however. After I got home with the baby, she screamed for two weeks.

The developmental pediatrician did me a favor and came to my hospital room to check the baby. He said everything looked fine. But it wasn’t; we just didn’t know it yet.

We went home. Isaac slept well for the first 3 weeks of his life and he hasn't slept since. At 2 months, he stopped eating--especially nursing. The GI we had for Chavie said he had colic. We finally went to another GI who said--of course--reflux, and a possible milk allergy. We were given more meds, and special formula for the baby. By the time Isaac was 5 months, we were back at the developmentalist, then neurologist, and then for tests. Isaac had the same calcification on his brain. Now we saw another geneticist. They went through bone scans, stomach scans, MRIs, CAT scans, EEGs, blood and urine tests. Over days, in several hospitals.

I took Isaac to the new neurologist by myself. My husband stayed home with Chavie, as she had a very tough schedule and couldn’t be shlepped around that much. I can’t forget that day when I came home and my husband was sitting on the couch with Chavie. We just looked at each other and cried. It was truly heartbreaking. I don’t think we’ve grieved like that since that day. It’s been more like living in shock, just getting through each day.

Our children might have a disease that's so rare only eight other cases have been recorded. However, there is no way of testing for this or confirming the disease, and supposedly, it wouldn't change our care for them. But, we did find out that future pregnancies would have a 25 percent chance of resulting in a baby with this awful disease.

Like Chavie, Isaac also cannot walk, talk, sit up, move, or hold anything. His tone is underlying low, but his extremities go into such high tone that we have medicated him for it since before he was 2. He would get so stiff that he slid off your lap. His reflux has been awful, and he would stop eating every four weeks, so we would have to syringe-feed him. At age 2, he weighed just about 19 pounds. He needed his mommy for everything. His sleep habits were so bad that we tried a few different meds to help him sleep, until we found one that was able to settle him for the most part. EKGs, EEGs, MRIs, and CAT scans became a regular part of life.

A whirlwind of procedures

When Chavie was 4-and-a-half years old, she weighed 24 pounds. Her GI was not actually pushing for a g-tube for quite some time, as she was following her own curve and was pretty consistent in weight for height. But then, she just stopped gaining weight. We finally went ahead and had a g-tube placed.

Chavie’s reflux increased after the g-tube was put in, so she can only handle feedings by pump. Until today, her stomach does not function well and she suffers terrible bouts of constipation. A combination of medications and other interventions keep her from having severe problems. Her reflux is for the most part manageable, and she has not needed a fundoplication (reflux correction surgery). When she was younger, she vomited between six or seven times a day and needed frequent suctioning. In recent years, she’s improved, vomiting only occasionally.

Chavie’s condition required orthopedic surgery for her hips and hamstrings, and three hip surgeries. Her hands became severely contracted as she got older, to the point where the skin under her fingers was very compromised. She had one surgery on her hand, but it did not work. Last year, she had another radical hand surgery and both hands are doing much better now, although they need to be braced all the time. She will have another hand surgery soon, in addition to surgery on her toes, all of which had contracted.

When Chavie was about 6, she became very sick. She had constant fevers and UTIs. She was sent for blood work and the results were very unusual. We were sent to a rheumatologist, who informed us that she had four out of the six criteria for lupus, a very serious autoimmune disease. Her hemoglobin was very low, so her level of infection rose. Since then, Chavie has been on steroids --the only medication that manages this disease. She goes for blood work regularly, as we are trying to get the steroids down.

Isaac has his own set of issues, completely different from Chavie’s. As I mentioned before, he has problems with muscle tone. He was at the maximum dosages of valium and other relaxants when he had a special pump implanted at the age of 4. The pump is in his stomach, with a catheter that runs around into his spine and delivers a continuous dose of Baclofen, a spasticity-reducing medication. Unfortunately, it is very hard to fine-tune the pump and the way his body reacts. The medication eliminated the stiffness in his arms and legs, but it also took Isaac’s ability to hold up his head well or stand and walk. We are still working on perfecting the balance. He was never diagnosed specifically with a seizure disorder, even after a 12-day EEG.

When Isaac was almost 3, he began having terrible sinus infections. We had been to numerous ENTs, and had two sinus surgeries performed, when I found a doctor who suggested it could be a mutation of Cystic Fibrosis. After a lot of testing, we discovered that he does have this mutation. His lungs are okay—their health is maintained with a number of treatments and medications, but he continues to be plagued by frequent sinus infections.

We decided that he should have a CAT scan room named after him at Hackensack University Medical Center, because he recently had his tenth scan. Either that, or the next one is free!

When Isaac was almost 2, we realized that his feeding difficulties were not going away, so we had a g-tube placed. This past year, for some unknown reason, his stomach stopped absorbing his feedings and we had to place a G-J tube, which feeds directly into his intestines. It is threaded thru the original g-tube, which also stays in place for administering medications.

If only it were that simple. Since we already held a record at Hackensack, we decided to go for one at Morristown Memorial. Our GI is there, so his interventional radiology team placed the special tube. Until it clogged a week later. And again, and again, and again--until it had been changed ten times in 7 months. According to the doctors, this doesn’t happen often. But other parents have told me that it happens all the time.

Meanwhile, his reflux became worse, because all he had in his stomach was acid and medications. He had a GI bleed and was vomiting regularly. He was scheduled for hip surgery, but they would not clear him until he had a fundoplication, to avoid aspiration during the hip surgery. So, within 7 weeks, he had both surgeries.

Where are the compassionate professionals?

In addition to all of my kids’ medical issues, there is the major problem of in the manner in which we are treated by the professionals who are supposed to be helping us. I have so many stories I could write a book. There are the surgical companies from which we are required to purchase equipment exclusively because insurance company policy. We have used about 12 surgical supply companies in 11 years. Not one of them provides satisfactory service. In my experience, not one has provided assistance in researching the type of equipment I need. I am on my own, and when I do place the order, the service is unreliable. I have to make sure they order the right equipment in a timely fashion, with constant reminders. Many times I have to call the manufacturer directly in order to receive the equipment on time.

In addition we are charged a co-pay which goes as the surgical company’s commission. The charges end up being astronomical since we have had many specialized strollers, a double specialized stroller, a special car seat, two special seating systems at home, a supine stander, a prone stander, a gait trainer, a walker, a seat for the living room, a bath seat, two sets of wheelchairs each, specialized beds, and more.

Then there are the orthotists and homecare companies. We have had so many, I’ve lost count. The kids have had hip braces, AFOs, leg braces, two different hand braces for days, hand braces for nights, trunk braces, neck braces. There is no part of their bodies that has not had a brace. We have used quite a few orthotists, as each brace must have a precise fit.

We’ve had our difficulties with the homecare companies as well. The day my daughter came home from the hospital with her g-tube, our homecare company refused to deliver the pump she needed because I couldn't pay for her new formula until my insurance company approved it. They also make me use two different companies for my equipment because they were not cooperative in obtainingthe tubes she needs. This same company charged me for 2 years of daily tube feeding before she had a tube!

Over the years, we have been sent tubes for tracheotomies (neither kid has one), and other wrong supplies, and basically, we have a hospital supply room set up in our basement.

The doctors can't help, and they never call back. I have lost track of the number of doctors we’ve seen in each specialty. I think we are on our seventh neurologist, our fifth gastroenterologist, fourth orthopedist, and fourth pediatric practice. They have had two ophthalmologists, three geneticists, five ENTs, two allergists, a gynecologist, a cardiologist, two rheumatologists, two pulmonologists, four neurosurgeons, two hand specialists, two physiatrists, multiple radiology centers, and four dentists. Since my children have been small, we spend about 2 days out of every week at a doctor, most of them not close to our home. Chavie has had at least six major surgeries, Isaac has had eight. I don’t count procedures anymore.

Since they were each 6 months old, they have had approximately eight therapy sessions a week. We currently have four home-based therapists in addition to the services they get in school. We are always rescheduling therapies. We have done aquatherapy, hippotherapy (on a horse), and Medek.

Helping hands

So--you ask--do we have any help at home? Well, sort of. First of all, our community has been wonderful these past few years. People have provided respite; girls have done countless chesed hours at our house. They play with the kids, read to them, push them in the swing, and more. Baruch Hashem we have wonderful people in our lives who do true mitzvos from the heart.

Then there are nurses and aides. When we finally secured a Medicaid waiver (after 7 years), we went through numerous aides and nurses. Very few spoke English, knew how to care for the kids, or treated us nicely as a family. There were nurses who hurt the kids, ignored them, and one even tried to sell things in our home. There were aides who ended up making our kitchen treif, stole from us, and couldn’t figure out to put the pink clothes in Chavie’s drawers--just to name some of our experiences.

This has been a source of severe stress. Every time we start with a new nurse, it’s difficult to explain our schedule and how to care for the children. I gave up on aides long ago, and on trying to find a nurse for Chavie. She only likes and relates to certain people, and I had to run interference between her and the nurses constantly. Now, there are just none to be found.

Isaac cannot go to school or be away from us without a nurse. He requires many medications and suctioning throughout the day. He did not go to school full-time until almost 2 years ago. There just were no nurses. Through some miracle, we now have two nurses for him. They are truly a bracha. One of them stays after school until 6 p.m., two days a week. That is my official “help.” There is a severe nursing shortage in this area of the country, and I have to make sure the candidates meet my qualifications before they care for my children.

We had a hard time finding a school for Chavie. Most of the schools we evaluated do not communicate well with the parents, and the one that was willing, wasn’t equipped to handle Chavie’s needs, so we had to settle for one that has poor communication with parents. Isaac was in another school for four years and is now embarking on a new adventure (for a future writing).

Not enough hours in the day

Dealing with the insurance company is another full-time job. The medical bills are endless and hard to keep track of, but if I don't follow up with the insurance company, we end up losing money.

I often say that my kids are 48/7 jobs. We don't sleep, we put in days that are never-ending, and we have no possibility of relief. Their care is too intense and it’s hard to find other people willing to help us and learn how to care for them without us. We can't leave them.

Currently, we are living on the first-floor of a house with a ramp. It’s a lot better than when we lived on the second floor. Unfortunately, the house is too small for all of our stuff and the bathroom isn’t accessible, so bathing the children is hard work.

My life is never boring. Every day brings something new and interesting. I have become a nurse, orthotist, every type of therapist, and doctor in many specialties. I call it the school of life. I am the CEO of Stein General, making sure everything runs smoothly--from housekeeping to laundry services, therapist schedules, doctor appointments, and school. I am also a social worker, case manager of a million case managers, supply coordinator, DME provider, pharmacist, and MOMMY.

People are constantly asking “how I do it.” I think there are a lot of people in this world who do things beyond comprehension. This is what we were given. It might be easier if we knew why, but sadly, we don’t. We just have to have emunah that we are here to care for our kids to the best of our ability. We get up every day and go to bed (at some point) every night. We daven for strength and health so we can get by.

I seek out support as much as possible. My friends that stand by me are the ones I count on to get through the days, months, and years. I have quite a few support groups online, both frum and non-frum. I have met many wonderful people on the Internet that have situations similar to mine and who can relate to my crazy life. I value all of their friendships greatly; I don’t know what I’d do without them.

However, family relationships are difficult. It is very hard for the people closest to us to deal with the constant chaos of our life. Typically, when someone has a baby, or an illness, or a loss; people pitch in and help out. You see, it’s short-lived then. Help is given, and then everyone goes back to their own lives. That’s not so in our lives. It’s chronic, like someone having a baby every single day for almost 12 years, and then another one every day for 9 years. It’s a lot to expect from anyone, so it puts a strain on relationships.

I have always said that our life really gives people a chance to do chesed. Even when we go out, there are opportunities for mitzvos. Most stores do not have automatic doors. Imagine what it’s like to get two children in wheelchairs through two sets of heavy doors. Some people jump at the chance to hold the door open for us, others ignore us--a true test of someone’s neshama.

A positive perspective

After reading this account, it must seem like we are to be pitied. Please don’t pity us. Life is hard, but our children are wonderful. They make me laugh. They are both very smart, and they have numerous ways to convey their wants and needs. If I start telling stories about them, I’ll never stop.

Chavie loves movement. She can’t live without her swing. She loves to shop, go to school, and run around in her gait trainer. Her favorite activity in the world is to go in the pool. With someone holding her, and the use of a head support, she is able to swim and be free! She can stay in the water for hours at a time and she is the happiest child ever. She even taught herself how to hold her breath under water! She can tell time, knows directions to everywhere, and has many friends.

Isaac is a true tzaddik. He is always smiling. He loves to be with people, read books, listen to music, play on the computer, see animals, and so much more. He complains so rarely that we don’t even know what it looks like. He is also very smart. He blinks for yes, and he can spell and count. He just got a specialized communication system. He is such a sweet child that he attracts people wherever he goes. He loves to eat and always reminds us when it’s lunch and supper time by showing us his open mouth.

Both kids love having Shabbos. Their faces truly glow at the Shabbos table. Chavie lights the candles and makes the bracha with me; Isaac helps his daddy make hamotzi. When we sing Shalom Aleichem, they look up and smile. We know they can see the angels of Shabbos.

My husband and I are truly blessed to have these children. They make our lives rich (and busy, too) and full of love. May we all be zoche to enjoy health and happiness.

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