Issue #17 – A Marriage Made in Heaven 2

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A Marriage Made in Heaven 2

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.

 


 

Babi Sander a’h
By Sarah Sander

With the passing of Moishey’s paternal grandmother a’h, he now has no living grandparents anymore.

Babi Malka Sander was a queen, as her name alludes. She was regal in her grace and charming in her personality. She loved Moishey with a fierce, grandmotherly pride and never forgot the early days of shock, mourning and grief. But, Babi Sander was a lady and she put her grief aside to become her children’s cheering squad. She encouraged and inquired and delighted in Moishey’s progress and always lent a listening ear and a bellowing laugh to his antics.

There were days when Moishey would go to Babi’s home on Sunday afternoon straight from yeshiva and meet up with his father there, and continue to an afternoon shiur. Sometimes Moishey arrived before Tati got there and Babi would offer him her entire refrigerator. One Sunday’s text conversation went like this: Moishey: Tati, I am by Babi now and she is offering me kokosh cake. What should I do? Tati’s response: So, what’s the problem? Enjoy it! Moishey: But my stomach will get fat.

Babi Sander accepted Moishey unconditionally – no ifs, ands, or buts. He was her grandchild and he was here to stay and she was not only going to accept him, she would actually enjoy him! And enjoy she did! She reveled in his wisecracks and quoted him like he’d be a holy source of Torah. Babi was touched by Moishey’s spirituality and on more than one occasion she was dabbing at her eyes when in his company.

Moishey was away at summer camp when Babi Sander was niftar. He joined the family at the levaya and then returned to camp. The next day he wrote the following entry in his summer diary, a special project of Camp Chavivim:

‘Yesterday my beloved Babi Sander died. I went to the levaya. My Tati and his brother had torn shirts and everybody was crying. There were speeches and I also cried. Today my friends all went swimming but I am just staying in bed because I am too sad to do anything.’

May Hashem bring about T’chiyas Hameisim quickly – if not in our zchus, then for the sake of our special children.

 


 

Shmira Amidst the Carnage
By Chaya Tavin

You hear the words. They sound like platitudes – “He is a special neshama”, “You were chosen”, “Your family will grow from it”, “Hashem only gives tests to those who can handle it”. They are true. Yet…..

When Binyomin Dovid was born, a neighbor sat with my husband for a long time. He was no stranger to Down syndrome and no stranger to nisyonos. His own precious Menuchi had died at the age of seven, after years of struggling with congestive heart failure. Now they were raising Refaeli, a sweet loving boy they rescued from the hospital when his own parents were unable to take him home. In what the world would call coincidence but we know is hashgacha, my son Avraham Yeshaya was in Gan Harmony with Refaeli the year Binyomin Dovid was born. Now Rav Tanzer came to speak to my husband. Somehow when he said it – that our family would grow from it, that we would see the good, – it rang true. We knew that this was a nisayon that was tailor made for us, that it would somehow be good for us.

But only now do we understand just how good.

It was a clear Tuesday morning in Jerusalem. My husband came home from neitz to get Binyomin Dovid ready for the school bus. You see, Tuesday morning is Abba Day. Binyomin Dovid looks forward to Tuesday morning all week – maybe because Abba puts ketchup on the cheese sandwich, or puts more pretzels in the bag than Ima does, or more salt on the salad. Or maybe because he so loves his Abba and their special morning together. And because Tuesday is their special day, my husband davens at the neitz minyon next to our house, instead of his regular minyon in Kehillas Bnei Torah, where he is the gabbai.
Sirens, ambulances, police, army – the quiet neighborhood turned into a living nightmare, but we were wide awake and this was no dream. Then the rumors. Name after name- good friends, all.
Between the hope and the tears we spoke. My husband turned pale as he said, “Chaya, do you remember….”.
Binyomin Dovid was a sickly baby with Down syndrome and a host of medical issues and I needed chizuk. I made my way to Bnei Brak to see Rebbetzin Kanievsky. I waited outside until it was my turn. I came in to her – a sleeping baby in my arms. Rebbetzin Kanievsky took one look at him and said, “You don’t know what shmira (protection) you have in your home”.
I thought I understood.
Perhaps, I thought, other things would be easier because this would be difficult. But now, almost 13 years later, I understand. Binyomin Dovid was the only reason my husband was not in his minyon that morning. And because he knew my husband wasn’t coming, his post davening chavrusa – a stalwart regular in that minyon too, decided to daven elsewhere that morning. We could not have imagined so many years ago that our son would save his father’s life and the life of his chavrusa.
The neighborhood was in lock down, with the police and army searching for more terrorists. Eventually they opened the roads, and slowly people ventured out. Names were released. We davened, we cried; we cried and we davened. Somehow we had the presence of mind to realize that Binyomin Dovid needed to get out of the house. The school bus had long gone on without the Har Nof kids, so my husband drove him to cheder.
“Are you sure you can drive?”
“Yeh, I‘ll be okay.”
The previous week, we had arranged for Binyomin Dovid’s classmate, Dovy, to come home with Binyomin Dovid on the school bus Tuesday afternoon. The boys spoke about it incessantly. They were so excited. I called Dovy’s mother – I didn’t want to cancel – the boys were so excited; but since I would be at the levayas, I had arranged for someone else to be in the house when Binyomin Dovid would come home. She kindly offered to switch venues, so Binyomin Dovid went off to his friend straight from school while I attended the levaya. After the levaya our kids, many of whom are no longer living at home, came over to talk. We shared our pain, our shock, our faith. I realized it was getting late. I called Binyomin Dovid’s hostess to find out that she was already giving him supper. We made up that we would come shortly to pick him up.
What do you say to a child – any child – and especially one with Down syndrome -about such a horrific event? In the car on the way over we wondered, what should we say? What should we not say?
Somehow, I put a smile on my face as I knocked on the door. Dovy’s mother reported on the successful visit as Binyomin Dovid finished up his supper and bentched. We decided to wait and see what he would say.
On the way home in the car he asked, “Will there be a piguah (terror attack) tomorrow?”
How do you answer that?
No?
BE”H no?
I don’t know?
A short while later he asked, “What is in our shul?” I certainly was not going to tell him details of the horrific carnage, yet he knew that something absolutely horrible had occurred there. He saw us crying. He heard that Abba’s friend had been murdered by terrorists. I simply told him that it had been cleaned up and that Abba was going to daven there. He asked again and again about the shul and then asked, “What about Shabbos”. I didn’t understand why he kept asking. Hadn’t I answered? Oh, that is one of those Down syndrome things….. But no. There was something more. I realized that he thought the shul was somehow destroyed. The shul is one of “his” places. He was agitated over the loss of “his” place. I explained again that the shul was fine and that he would go with Abba on Shabbos. Binyomin Dovid was so excited. “His” shul was still going to be there.
I did not think this would be the last I would hear of this, and I was right. First thing Wednesday morning BD asked, “Is the piguah over?”
Yes, Binyomin Dovid, it is over. We spoke a few minutes and I told him to get dressed. I went into the living room to daven and he came out after a few minutes.
Binyomin Dovid looked at me as I davened.
And looked
And looked.
Then he pointed to my siddur, and said, “That is our cannon.”
I kissed him. He started talking and talking and talking about commanders and soldiers and who knows what. I was davening – but even if I could speak, I think I would have let him go on. He needed it.
Then he stopped
“But”, he said, “they are all shlichim of Hashem”.
Do we need to hear more than that?
If I thought I was finished with his questions and comments, I was wrong. We went out to wait for his bus; it was Wednesday after all, not Tuesday. Binyomin Dovid turned to me and asked, “Are we at war?”
We sure are.
But not the way he meant it.
B”H, as I began to mumble something to answer him, the school bus drove up.
That afternoon he went to his Middos club. The Rav, an outstanding educator, had the boys speak. Story after story after story of hasgacha pratis. He skillfully instilled in them the message of how much Hashem loves them. And then Binyomin Dovid stood up and said, “I saved my Abba’s life…”
Thursday morning Binyomin Dovid was up bright and early. He went to get his plastic war toys, a recent gift from a neighbor. A sword, a helmet, a shield and a breast plate. He looked like a Roman warrior. The sword reminded me of ……
I wanted to shout ‘HaKol kol yaakov veahayadayim yidei Esav’! I could not bear to see him with a sword. I knew he needed to do this. I knew I needed to let him do this. But not today.
Once again, B”H for the school bus – “Wow, Binyomin Dovid, look at the clock; time to go outside….”
Shabbos he went to shul with Abba.
Usually. on Leil Shabbos he goes out during the drasha and plays with the younger boys downstairs. Not this week. He sat through Kabalas Shabbos, all of HaGaon HaRav Rubin’s powerful drasha, all of maariv. He was happy to be in his shul. He answered Amen Yehei Shmei Rabba to the heartbreaking kaddish of the yesomim of the kedoshim. And, unlike the kedoshim, he came home.
There are many powerful lessons to be learned from this tragic event. The exactitude of Hashem’s Plan is blindingly clear. The heartfelt request of the widows that we strengthen ourselves in Shalom should bring each and every one of us to make real and lasting changes in ahavas Yisroel. We should never take the people in our lives that we love for granted.
The challenges we have with our special children are great- but the rewards are often far beyond what we could ever possibly have imagined. And perhaps too, we need to remind ourselves of the message of Binyomin Dovid’s innocent words – our siddur – this is our cannon.
May we be zoche to bias goel tzedek bimheyra byameinu.
Postscript: One Week After the Attack:
Tonight, Binyomin Dovid came out in his pj’s waving his plastic sword, yelling,
“They say alla-akbak (his version), we say Mi L’Hashem Eilai!!!!”