A Marriage Made In Heaven
Reprinted with permission from Down Syndrome Amongst Us Magazine
Dear Sarah,
I read ‘Passed Over’ in Issue #16, where you write about your younger daughter ‘skipping Moishey’ and getting married. I do not understand why you need Moshiach in order to marry off your son who has Down syndrome. Did the Chief Rabbi of Tzfat miss something when he married off my children?
I have attached a clip of our children’s wedding.
Chaya ben Baruch
Hi Chaya shetichya:
You are so sweet. I am so glad for you. Mazel Tov upon your children’s marriage.
My computer filter will not allow me to watch any Youtube clips. However, before the days of the stringent filter, I did receive several clips of couples with Down syndrome getting married in Eretz Yisroel. I wonder which one featured your children. It seems like it is way more popular in Israel than it is here, and I think I know why that is so. From what I’ve been told, you get government help and guidance for the couple after they are married. The US government wants to have nothing to do with that kind of support. The question for us parents now is: Are we ready to continue raising not one, but two adults with Down syndrome? Years ago, when I was younger and gung-ho on driving myself to go above and beyond the call of duty on behalf of Moishey, I would have said, “Yes! I will do it and support him and his wife forever, as long as that assures his happiness.” Well, the clock and calendar have moved forward and I am no longer that young, idealistic person who feels she can conquer the world. Moishey is bright and sweet and he has tremendous strengths in many areas, but he also has weaknesses in many areas and I wonder if they are compatible with marriage. At this stage in life, (perhaps because he is single!) he is very into his newspapers, magazines and music and he is somewhat OCD’ish (obsessive compulsive disorder) about them. It’s like the rest of the world doesn’t exist when he is into his stuff. He can also be very moody and I wouldn’t say that he is very responsible. How does that come into the marriage equation? He would definitely need to have mentor/s overseeing his marriage and helping out wherever needed. Like I wrote, I don’t see myself being ready to undertake it. I still have young children at home and am a very busy Mom, plus I have been through the meat grinder raising my kids ka’h. Between Moishey’s Down syndrome and my younger daughter’s medical history, emotionally I am not ready for such a major undertaking that would require my full involvement and resources.
All the best,
Sarah
Dear Sarah Yikara:
I don’t think your son is any worse than ours in some of his behaviors, and our daughter knew what she was getting into. However, they have surprised us and I know they, like all young couples, developed strengths we did not know they had.
When you do something difficult, either Hashem catches you or He teaches you how to fly!
Also, what makes you think it will all be on you? Maybe the kallah’s family or some organization will help fill the need to be there for them? I do know we all need to love our ‘Chatanim and Kalote’ like we love the rest of our children, regardless if they have special needs.
Boruch Hashem, my kids are doing very well. They need a lot less help than I anticipated and although like any couple they have their ups and downs, they mostly have ups and we can learn a lot from them.
I do not know what more I can say to give you the chizuk to be open to the possibility of letting your special needs child marry. The hardest thing about raising special needs children is how others limit them. Why, when it comes to the mitzvah of marriage, is it us parents who are in the forefront of limiting them? It just takes a paradigm shift, a small shift in the kaleidoscope to say, ‘Why not?’.
Hashem sets up zivuggim 40 days before a child incarnates into the world; to my knowledge there is no exemption for neshamos with 47 chromosomes. All through our child’s life Hashem has sent us the ‘Schlichim Hanachonim Bezman Hanachone’, the right helpers at the right time. Marriage is no exception.
We, as parents, have put so much into our special needs child; we have difficulty letting go and admitting they need someone else, and that person can give our child something we cannot.
Think about it.
Shalom,
Chaya
A Marriage Made in Heaven
Twenty-two years ago, after our son Avichi, who has Down syndrome, successfully underwent open-heart surgery, we went to a conference for professionals and parents of special needs individuals. There we learnt of a set of twins with congenital abnormalities who grew up together. They had a running family journal and when both twins died at age 18, their mother read their journal and knew in her heart that having each other helped her sons with their illness. I went home from that conference and with chutzpah told my husband that we needed to adopt a child with Down syndrome so our son would not grow up alone with his condition. My husband wanted us to first complete the heart surgeries, but agreed. Exactly on our son’s first birthday a beautiful girl with Down syndrome came into our lives. We named her Kirin, which means ‘ray of light’.
We chose to move from the States to Israel with the hope of being absorbed into a kibbutz. None of the kibbutzim wanted us. They told us that ‘they did very well with their problem children and did not need anyone else’s problems’. So we settled in the beautiful, spiritual city of Tzfat.
For our son’s and daughter’s Bar and Bat Mitzvas, which coincidentally fell in the same week, we decided to take them to Yerushalayim to a hotel, and of course to visit the Kotel. My husband took Avichi to the men’s side and I took Kirin to the women’s side and when the family reunited Avichi announced that he was mispallel that ‘Kirin should be my bride’. I looked at Kirin, thinking it was a joke, and said, “Avichi wants to be your chatan. Ha! Ha!” and she gave me a look as if to say, ‘Mom, you just don’t get it!’.
A friend had given birth to a baby girl with Down syndrome and the mother cried that the family pearl necklace that had been passed down from generations of daughters would not be passed through her daughter with Down syndrome. Her husband questioned her feelings and said, “and who says in twenty years our baby will not get married?” From then on I never questioned that my kids, with Hashem’s blessing, will get married. However, I never expected Avichi would marry his adopted sister.
I gave them five years to forget about it.
They didn’t.
Avichi would compliment Kirin on her dresses and she enjoyed wearing what she knew he liked. Whenever there was a wedding or a Bar Mitzvah they attended they would come home and discuss what they liked and what they want to incorporate in their own wedding. Six years ago they came to me around Lag B’omer and announced, “In another five years we are getting married around Lag B’omer.” When a year went by, they informed me that a year had passed and they were going to get married in four years. They knew who would be the caterer, what music they would play. On Yom Kippur when they were hungry, they planned their wedding menu.
We spoke to our Rav about the plans and he told us that Kirin can go to school with a head covering once she is married, and that we should not delay the wedding any longer.
At first their school did not want any "couple", as it is a hareidi environment. They suggested Kirin should move into the girls group home and Avichi into the boys group home and for a few hours a day they could be together. I disagreed and was ready to pull my children out of the best school for special education in the country. They told me I was opening a Pandora's box, at which point I told them, "No, I think it is more like a box of POTENTIAL!" They said now all the girls will want to get married. I asked them if the girls ever wore kallah dresses on Purim and they said, "of course", at which point I added, “then the Pandora's box was open long before I came along”. The psychologist of the school started to meet the children individually and as a couple. I will never forget the phone call from the psychologist when she described one of the meetings and how Kirin, who is quite shy, began talking to Avichi as she often does at home, and the school professionals finally saw the relationship as we had seen it all along.
The kids were 20 and 19 when they got married, and special needs children can attend school until age 21, so Kirin would continue school as a married woman. In the end it was not the big problem everyone thought it would be and Boruch Hashem they both remained in school after they got married.
The school had a meeting with the parents of our children’s friends, to prepare them. My feelings are very strong about helping special needs adults marry. When people tell me they don’t want the burden of another special needs person in the house I question if you think your child is a special neshama – why wouldn’t you want another special neshama in your family?
What a pleasure it was to prepare a simcha where I knew the school was with us. We chose to have a modest wedding, inviting over 30 special needs individuals, and over 140 teachers, staff, Rabbanim, school personnel and personal friends. We tried to keep the wedding small on one side of the mechitza because Kirin has a hard time with large crowds and noise and we did not know how she would react. Someone lovingly said, “Well, Chaya, the worst that can happen is you send the kallah home early and we go on partying!” On the other hand, our son who is quite the ‘chevra-man’ kept inviting friends with their entire extended families – parents, kids, aunts, uncles, etc. We finally decided to have an open chuppah and a more modest sit-down seudah.
I ordered my daughter’s dress on eBay, and aside from needing a hem, it was perfect! The photographers came the day before to get to know the couple and Kirin put on her dress and Avichi his wedding suit. I had to look all over Tzfat for a purple tie! My daughter’s persona changed when she put on that dress.
They watched many videos of weddings to familiarize themselves with the customs and rituals and Avichi saw many chattanim whisper something in the kallah’s ear when they put on the veil. I cried when I heard my son whisper to his kallah in Hebrew, “You are the most beautiful in the world” during the badeken.
For the duration of Shana Aleph (also known as Shana Rishona) and beyond, they lived in an apartment below us. Their kitchen was ‘Chalavie’ (dairy) so they wouldn’t mess things up. They cook simple meals and enjoy each other’s company. They are invited out a lot and I have to promise ‘Al Ha’ash (Bar BQ) to get them to come to my house for a holiday seudah. Avichi calls me his ‘Chami’, mother-in-law. One evening, they traveled alone to a performance in Tzfat and until they came home I was a wreck, but people told me how they clung to each other. Besides, I am told Avichi can come home on his own from Australia!
There are days we don’t see them at all and days when Kirin needs to be around us more. Once Avichi was out of line and got angry at his Kallah because she would not share more of something she made at school. He came up to ask forgiveness and she told him in Hebrew, “It is very hard for me to forgive you”. He then bought her flowers and a chocolate bar and had someone write a letter to Kirin for him, asking for her forgiveness. She forgave him and carried around the letter for at least a week. There is a lot we can learn from them.
Now that they are past Shanah Beis (2nd year) of marriage, I am so thankful to Hashem that Avichi and Kirin moved to their own apartment under the auspices of Tzohar HaLev. This is groundbreaking. This is a group home for married religious couples with special needs. It exists and is succeeding, B’H. They have a couple that checks in on them and their wellbeing. Avichi goes to programs with the men’s group home, and Kirin with the women’s group.
They want to come home only on the one Shabbat a month when everyone goes "home". Avichi and Kirin were guests at one of their former teacher's home this past Shabbat. With tears in her (and my) eyes she told me how Avichi poured juice for Kirin, she served him first, handed him a napkin, and he cleaned up her tissues when she had a runny nose. They thanked their host and were so happy as they walked home. The teacher was so impressed; she can't wait to invite them again.
I miss them, but as a friend said, "you prayed for independence - that's what you got!" All the years of nurturing and going the next step, with the wonderful help of the shlichim Hashem sent along the way has come to fruition. With Hashem's help, may they continue to blossom.
Two summers ago, when we celebrated the wedding of Avichi and Kirin we laughed and cried. I think the malochim did too. Truly a marriage made in Heaven.
Chaya has graciously agreed to discuss the matter of marrying off a child with special needs with our readers. You can reach her by email at