If I were to know two years ago what lay in the future - I surely would not have believed it myself.
Rabbi Dov Patkin z'l had asked me for names and places to prove my story true, but I am legally not able to oblige because, although my heart aches to the point of breaking, I cannot divulge the anonymity of those people involved. I have signed legal papers to keep this anonymity.
So, the best I can do is tell you a little story. About two years back, a friend of mine, who has a child with Down syndrome, was over for coffee. We got to talking about our lives (as women often do!). I told her about when I was first married, we didn't have children for a few years. I would help new mothers with their own broods, do 'segulot' (drinking crushed red rubies - the whole bit!) etc. Every month I'd once again be broken-hearted, but somehow, continued to daven and wait. No, I didn't go to a doctor, no matter how many people told me to. I wanted children 'min hashamayim - not any other way. I'm not against seeing doctors for women's problems at all (all my children are caesarean babies, so I've had my fill of women's problems and doctors) - this was a personal plea. Well, it did happen; my husband and I went to a certain Rav for a bracha and he gave us yet another 'segula' to do. That month I was pregnant with twins! So we made up for lost time! (The Rav's name I will have to withhold; for the record - he has nothing to do with this present story.) My friend and I continued talking and I told her that we had always wanted to adopt a child to show Hashem our gratitude for giving us our own (is any child really our own?). So she started to tell me her story of how she 'got' her adopted child with Down syndrome. I didn't know he was adopted. She works with social services in Israel and finds homes for abandoned Jewish children, all kinds of children, but mostly those with Down syndrome. Of course I wanted to know more. I pumped her for all she was willing to tell me. Was it intrigue, that I was so spellbound by her story, was it the nosybody in me, was it the beginnings of outrage, that kept me entranced? Looking back today, at all those emotions that overcame me, when she told me how she got her child - he is six years old today, I cry all over again. The truth is too horrible to tell. I screamed at her, and called her a liar and accused her of 'What do you know of frum people?' (it didn't matter that her husband is a Rav himself and that her head was covered in an elegant sheitel). How could she blatantly talk 'lashon hora' about our 'gedolei yisroel', our 'poskim' and certain 'chassidishe Rebbes'! She calmed me down and promised (without a promise) that yes, her child was abandoned by frum people, and not only that - the Rav encouraged them to give him up (for the sake of their other children, of course). The question comes to my mind - if a father has to run to a Rav to ask whether he should bring home his own child or not, what do you think the Rav will answer?
Time passed, we remained friends, but I still "knew" there must be some outstanding reason that her adopted child was given up! It couldn't be that just because he had DS this was a sufficient reason not to love and cherish this neshama, like any other child needs to be loved and protected. It was too sick and unbelievable to simply believe it. A frum person who keeps Torah and mitzvahs is above pettiness. We all believe that we are in this world to be 'mitaken' (fix) our middot that need fixing, (DON'T WE?). We all believe that everything that happens to us is Min Hashamayim (DON'T WE?). We all believe that our children, each and every one of them are jewels, that have been placed in our care, each child, to each set of parents and siblings. Each family has been chosen to raise them, with responsibility to our Creator (DON'T WE BELIEVE THAT?). We do not judge a person by his exterior or by how rich or poor he is, or whether all his children are "normal" (DO WE?).
A while later this friend called me up and said straight out, "Remember a while back you said you always wanted to adopt a child?"
I said, "Yes."
"Well, here's your chance." She proceeded to tell me about a frum family, 'misudar', respectable, honorable people that cannot take their Down syndrome baby home.
"WHY?", I asked, "Is the mother ill? Is there something very wrong with the family?"
"Oh no, nothing at all wrong. Lovely people. Other children at home. Their spiritual leader doesn't let them bring the baby home (for the good of whom exactly?)." That's all she said.
Oh yeah, that's not all she said. She also told me about abandoned children with Down syndrome that do not get adopted or put in permanent or at least temporary foster care (Jewish care - and I'm not saying frum care, because a lot of them go to non-religious homes for lack of frum ones - and for the record, the social services does try their best to place children coming from frum homes into frum families.). There are just too many children, but worse, many frum parents simply don't care where their children grown up (Again, there are exceptions to this; I know of a family that pays another frum family privately to raise their child and keeps touch with him. I also know others that couldn't care less…).
The general attitude is "the child is retarded anyway, right? He's not 'chiyuv' the mitzvos anyway, right? As long as he is physically taken care of, and our family won't suffer from the strain of this child, there's no need to worry about the child's "nefesh." Wrong. Rav Shlomo Zalman Auerbach ZT"L of Jerusalem, 'paskened' that children with Down syndrome are indeed 'chiyuv b'mitzvot!'
So, where do all those children go who they don't find homes for? They are lovingly taken in and given excellent care by the monasteries. My friend semi-hysterically told me if I don't take this baby, he's on his way there too! After all, the hospital isn't a hotel, or a babysitting agency; the baby has many other physical problems in addition to having Down syndrome, there's no other place, and that's where they will send him.
The head doctor of the ward later told me that this is all true. Although I cannot reveal the name of this particular monastery, the care is excellent and the religious crosses are very large, some are wooden and some are gold. The sisters in charge are dedicated to saving Jewish neshamas and raising them as good Christians r'l.
Of course, it wasn't a question for me at all. When I told my husband the story about this abandoned baby, he replied, "What's the question?"
When we went to our Rav, he replied, "What's the question?"
Although it wasn't as simple as that - the red tape was endless, frustrating, and at times degrading - you'd think we were doing "someone" a favor; I wonder if the monasteries have to go through so much red tape? (Needless to say, if it were a non-religious, Jewish baby, our reaction to take him home would have been the same). That it was a frum family, our shock was all the more.
There are MANY questions! Unfortunately, the answers are very vague and flimsy…I will leave the grisly details out. When we first came to take him out of the hospital, I blocked out the nagging questions of my own "yetzer hora". What if he's a monster and the children will be afraid of him? What if the workload is too heavy, with my own large family? After all, he has so many medical problems. I'll be forever running around for physiotherapy and doctor's appointments. Who am I kidding? Some days I don't manage at all; the cooking for 8 children (my kids walk to school and back, so meal times are a full house everyday!). The laundry alone is like I'm running my own laundramat. The shopping - seems like I'm always shopping. There's always an appointment for the dentist or someone has an ear infection. Someone's hitting someone in cheder and I'm calling to work out a solution. I don't know! There are a million things that never get done! Like the albums! The pictures are in boxes, hundreds of pictures. I keep saying this week I'll sort them, and get them neatly into albums. Well, maybe next week, I'll start. What about my graphics course? I'll have to work out a new schedule. What about shidduchim? What kind of family will we have to take with us having a 'Down's' child….O.K. Enough!! Coming back to my senses, I realized: my house is clean enough; I'm a good cook; the kids are basically happy types; I have a washer/dryer, and the sun here dries faster than any American dryer works. Albums shmalbums! My grandmother had pictures in boxes as long as I can remember; she seemed happy about us dumping the pictures on the floor. How stupid of me. Good bye 'yetzer hora', good bye!! We wouldn't want the kind of family that wouldn't want us with a 'Down's' child anyway, now would we! Any family that thinks they have a guarantee on the outcome of their 'normal' child's life, is completely not living in reality. Any family that thinks having a 'Down's' child is a curse, we wouldn't want them either. We have so much to be grateful for! So, my husband and I decided that come what may, we would help this little "shefalah" grow up, no matter what.
We determinedly went to the hospital to pick up our new baby. When I first looked into his crib, those precious eyes looking blankly up, my heart overflowed with a mother's love for him. I would, forever as long as Hashem would let me have him, give him all I could. He would never cry from hunger or pain, if I could help it. We would help him to integrate into frum society, even if that means waking up a lot of dull-minded people. We would love and cherish this Yiddish neshamah. Hashem has given us a gift; all I had to do was open my mind and heart to him.
We are now raising our beautiful child with Down syndrome. Many of those medical problems he had have disappeared, with love, care, and prayers. He is not only not a monster, but he is beautiful. His slanting eyes and tiny nose add to his beauty and we all love kissing his pointy little tongue. When we first got him, his legs were like pencils and his head was all bald in the back from lying on his back all day with no one to pick him up. At first, the children thought he was deaf and mute because he was almost unresponsive to our pleas for response; but I was told he wasn't. I realized as he slowly but surely 'woke up' that it was only the lack of love that had made him give up hope to live. At first, the children were afraid to change his diaper; they were afraid his legs would crack! My pediatrician said, "Wow! Is he scrawny; we have to fatten him up!"
I could write a daily diary filled with our growing love for him, our concern for his health and our complete joy with every new thing he learns. He is not deaf or dumb, and gets more beautiful with each day. He now gurgles to the delight of all the children. He has the most precious smile and just today my big daughter asked me, "Mummy, what did we do before we got him?!" He gets picked up at the slightest peep, even in his sleep I have to keep them from lifting him up in the air and dancing around with him. I can honestly say the joy that has come into my home because of him is hard to describe. I shudder to think of him kissing a cross instead of making a bracha.
As I'm writing this in a blur of tears, I keep thinking as I tuck my little one in - what a pity for those families that will not give their babies a chance at having their brothers and sisters love and kiss them (kids are not prejudice), having their parents care and protect them, like all of their other children. I know the mother who gives her child away never has a peaceful moment again.
Unfortunately, many Rabbonim put the Down syndrome child in the same category as all mentally retarded children. This just is not true. I am definitely not talking about any other special child, or medical problems, or the pain and suffering that families go through when they have these other 'neshamos'. I am specifically talking only about the child with Down syndrome. We know that the 'Down's' child has much to give our frum communities, and much to teach our society. It is a lack of knowledge and understanding on the part of the individual Rav or Rebbe that Rabbi Patkin z'l was trying to bring home. His efforts on the part of all of our 'Down's' children are to be commended and applauded. The fact that he has opened up his life and pain publicly, shows that he, his wife, and all their children are exceptional people, wishing to bring out the skeletons many of us are hiding. Not out of vindictiveness, but out of a genuine concern for our abandoned children. We believe that a DS child has a very high neshama and has come here to fix a small thing. Rabbi Patkin's concern for the rights of these children to be accepted by their biological parents, comes out of the deepest places in him. His own child, Gitty a'h, who had Down syndrome, was taken from them early in her young life, but not too early. She was able, in her short life, to teach many the meaning of true love and unconditional acceptance. Any outrage triggered by Dov's works are a good start…for change, because that feeling of outrage was what I felt too. It's the feelings of indifference, apathy, to the plight of our abandoned Jewish DS babies that scares me, not the outrage. BE outraged; be disturbed; those are good signs.
This article first appeared in issue #12 of Down Syndrome Amongst Us