A Marriage Made in Heaven Lives On…And Then…
Chaya Ben Baruch
When our son Avichi was born thirty-one years ago with an extra chromosome in each of his precious cells, I could not anticipate that he would survive open heart surgery, be fluent in two languages, live an hour and a half from me in his apartment with his wife Kirin, of ten years, volunteer two days a month assisting the mayor Shuki Ohana, in Tzfat, and a million and one things no one wrote about or anticipated.
On Avichi’s first birthday, Kirin came into our lives as a companion for our son so that he would not have to go on this differently-abled journey alone. Kirin also has Down syndrome. Little did we know this would turn into a life commitment between the two of them.
Avichi’s Bar Mitzva was Kirin’s Bat Mitzvah. We took them to Yerushalayim to celebrate. When Avichi was at the holy Kotel with his father, he came back and announced, ” התפללתי שקרן תהיה הכלה שלי”. (I prayed that Kirin would become my bride).
I always anticipated marrying our son with Down syndrome to some wonderful woman with Down syndrome as well. When he was five months old the seed was planted.
After Avichi’s successful open-heart surgery at 3 months of age, we wanted to know everything we could about Down syndrome and went to a conference in Anchorage, an eight-hour drive from our home then in Fairbanks, Alaska. There we met parents and professionals who would educate us about differently abled individuals. There we heard two stories that changed our lives.
One mother, by the name of Jenny, was tearfully pouring her heart out to a group of mothers whose children were born with DS. We were sharing with each other our fears about raising a child with special needs. Jenny explained that their family had a special pearl necklace that was passed on from generation to generation to the oldest granddaughter, to be received on her wedding day.
Jenny shared that her daughter was supposed to receive that necklace, but Pearlie was born with Down syndrome. Jenny did not imagine her daughter would get married. Her husband just laughed at her. He asked her how she knew that their daughter would not get married. “How can you predict what might happen twenty years from now?” he challenged.
As I held our five-month-old Avichi, I was determined then to support him if he ever wanted to get married. My kaleidoscope of doubt turned just enough to turn into hope.
The second story was more difficult. I was talking to a mother who had given birth to a set of twin boys and both had cystic fibrosis. Unfortunately, they both died at age 18. I asked her if it was not difficult raising two children with the same illness at the same time together?
“Actually,” she explained, “in our home we had a journal; anyone could write what they felt. When my sons died I reread their entries and saw how helpful it was that one twin had the other. They did not go through this alone.”
I myself am a twin, I have a twin brother. I knew intuitively what she was relating to.
It was then we decided to adopt another child who has Down syndrome so that Avichi would not be alone.
I pushed my kids to become independent. Once they could do something by themselves I stopped doing it for them.
I had a neighbor, Zehava, who lived on the street above us. I would send Avichi, and later Kirin, to Aunty Zehava with sugar. She would watch them after they crossed the street until they delivered the sugar and I would watch them return and help them cross the street. Then I would have them cross themselves with me half way in the street, then they would cross when I was on the other side of the street. Then I would have neighbors watch to make sure they crossed correctly. It really took a whole community to raise a child.
This is not to say things were smooth sailing. One Yom Kippur, the children were about 8 and 9 years old, while I was napping, Avichi decided to take Kirin to Abba at shul. I woke up and two of my children were missing. My older son, trying to comfort me, said, “Mom, even the non-religious hardly drive on Yom Kippur.”
I was about to call the police when Kirin came home, but she could not explain to me where Avichi was. My husband was in a Beit Knesset in the Old City and Avichi had taken Kirin to a Beit Knesset below us. He put her in the women’s section and went off to the men’s section. The men were used to seeing Avichi and thought my husband was around as well. Hours later Avichi came home, unaware that I had been frantically looking for him.
When they got married, I planned their kitchen with safety and independence in mind. My children had a mini bar for hot and cold water before I did. We debated about a stove; electric won over gas. Their kitchen was dairy only for many years so that he would not mess up her dishes, until many years later their Moroccan house mother could not accept them not eating meat and taught them how to cook meat dishes as well.
Supporting a couple with special needs is like playing Junga; you build a tower of support and little by little you pull out stick by stick of support that they master, one step at a time. You keep in enough support so that the marriage structure does not collapse.
Hashem, of course, blesses every marriage, and when the couple is differently abled he hopefully sends the שליחים הנכון בזמן הנכון – the right messengers at the right time.
When I took Avichi and Kirin on falafel dates, the proprietor handed the food and change to Avichi.
When they needed to buy an appliance, I prearranged it with the shop owner and left money or my credit card. I live in Tzfat where I know these people and trust them. Avichi is not good at making change, and could potentially get taken advantage of, but he manages.
We worked with Rav Shmuel Eliyahu, the chief Rabbi of Tzfat who not only agreed to marry them when other Rabbanim would not, but is available for halachic questions.
Avichi and Kirin now live in an apartment an hour and a half away from our home, under the auspices of a group home, Tzohar Halev. They shop in a particular store and have a set shopping list. Gradually Kirin learned to ride the bus and go shopping alone. Every Thursday Avichi joins the other men in the group home and they go out to Saba Marco, a pizza place. He brings home food for Kirin and a diet coke, since she watches her weight.
I once told Avichi he had to stop buying Cola because it was not healthy. He told me he did not have to listen to me. I was taken aback and told him he most certainly needed to listen to me. I was his mother. He then told me I was wrong.
“Avichi, I am your mother; I gave birth to you, I nursed you. You need to listen to me.”
“Nope,” he informed me. I was wondering where this was going because he was not being chutzpahdig. And then, like explaining very patiently to a child he said, “Mom, you are my wife’s mother, you are just my shvigger (mother in law); I don’t have to listen to you.” At that point I cracked up laughing, because it was such Avichi logic.
I have had the pleasure of being hosted by them for Shabbat in their own apartment. I have sat on their comfy couch reading and drinking a cup of coffee while attempting to concentrate, but it is way more pleasurable to listen to their natural conversation and watch them prepare lunch for the next day. They dance around each other, he starts the egg and she flips it over. It is a team effort.
Our Kirin has always had a special way with babies and I am sure in the next lifetime Hashem will grant her many. I have explained to Avichi and Kirin that not all couples are zocha to have children, and they inform me that they keep davening for children anyway.
Like by all couples, there are ups and downs. When Avichi and Kirin needed to buy a new couch he wanted a metal one; she wanted a comfy blue one. The metal one was on sale so she called up her husband and asked him which they should buy. “Whatever my wife wants”, was his answer. We can learn a lot from individuals with special needs.
If you are thinking about marriage for your child, there are a few things to consider:
-Dating will look different than by your other children. These children will need more time to get to know each other.
-You will need to work more closely with your child’s potential in-laws.
– Expect to adopt another son or daughter into your lives, and into your heart.
-Teach your children to swim, preferably at a young age.
-Don’t wait for everything to be perfect before they get married; both typical and special needs couples have their own special requirements that sometimes only come out by experiencing life.
-Include Hashem in the equation.
I think when parents give everything they can to their child, they can sometimes underestimate what one special someone could mean for them. We underestimate what a chattan does for a kallah, and a kallah does for a chattan. Even though Avichi and Kirin grew up together, the marriage added so much to their lives, much more than we ever expected.
When you look into the sky and you see all the stars, the brightest ones perhaps represent those who are closest to you. When my husband Yisroel and I are no longer here I do not want all my children’s lights to go out. Kirin, which means a ray of light, will be there for her chattan Avichi, and vice versa.
Tzohar Halev, and especially their house mothers, Elanite Nachum and Abigail Mazuz, play a big part in the success of Avichi and Kirin’s marriage. The fact that we live in Israel where we have national health insurance and government support for individuals who are differently abled is also a plus.
By the time you read this, our son Avichi will have been making many friends in Shomayim. He passed away on ט’ אייר from a very sudden quick bacterial infection that ended in heart failure. His heart, ironically, never failed.
When going through his stuff we found new baby clothes, ready to be gifted to his friends’ new babies. I would wrap those baby clothes in Tzfat where he would gift them to his local friends. During shiva I found out that a staff worker wrapped presents for him to give out in Ricassim, too, where he and Kirin spent over 9 years living together in their own apartment under the loving organization Tzohar Halev. In addition, tucked away was a wrapped monogrammed pen, a surprise present for the manager of the group home.
Everyone who knew Avichi felt that he was an important part of their family.
Kirin not only lost her husband, but her life companion. Kirin never knew a time without him. She is now living with other young women in Ricassim with all the heartache of any young widow.
Avichi accomplished so much in his 31.5 years. He and Kirin surpassed so many expectations. When they got married we felt it was also Tzohar’s wedding, and at his levayah, it was Tzohar’s as well. They say it takes a whole village to raise a child and that certainly was the case for us.
Avichi touched so many people; he loved and was loved by so many, and he will be missed. B’ezrat Hashem we are writing a Sefer Torah in his memory.
In an amazing twist, I met with the sofer for Avichi’s Sefer Torah. The sofer was a madrich at the sheltered workshop that Avichi had worked at. While he was learning his holy trade, he would practice at work. Avichi saw him and asked him what he was writing. The sofer, Neriah, explained that a sofer writes Mezuzot, Tefillin and Sefer Torahs. This was years ago.
Neriah remembered that Avichi asked him if ‘one day will you write me a Sefer Torah?’
Little did he know…..