Issue #28 – Pesach Under Lockdown With My Twins With Down Syndrome

Posted on Posted in All Articles, Down Syndrome and Congenital Heart Defects

By Diana Kuessous


Some of you may have heard about my twin daughters, Nechama and Batya Kuessous, both born with Down syndrome. They were actually featured in Issue #9 of Down Syndrome Amongst Us, many years ago. They are currently 24 years old.

When the coronavirus hit, I was a little worried about how it would affect them. They are generally very social and thrive on friendship and connection to other people. Every day they travel to Lakewood to The Special Children’s Center where they attend a job training program. They normally arrive home at 6:15 pm. They eat supper and then their phone is usually ringing off the hook with acquaintances offering to pick them up for slurpies, a shiur or even a short drive around town. On Shabbos, before our seudah is even over, Batya is out the door and on her way to one of the many neighbors. Both girls are social butterflies, to put it mildly! I wasn’t sure how they would react to the no-going-out rule, but to my surprise, they were really amazing. They fully understand the danger of being around other people and they are extremely careful.

Like most people, I let my cleaning lady go about 2 weeks before Pesach, in order to assure her, as well as our well-being and safety. I was worried, knowing it would be just the 3 of us to clean the rest of the house and turn over the kitchen. Well, let me tell you, they are quite the cleaners when they have to be! The twins helped me move the couches, vacuum and clean out kitchen cabinets. I gave them a few cake recipes and watched to make sure they followed it correctly. They baked to perfection. They also helped me cook. We peeled and diced and filled the freezer together. I could not have done it without them!

I was a little nervous about making the Seder alone. Since my husband passed away 9 years ago, we’ve never had Shabbos without at least one, but more times than not, a few of my married kids, let alone a whole Yom Tov. On Pesach, in the past, we were literally a crowd!

Now, with the dark cloud of COVID-19 hanging overhead, I couldn’t take the risk of inviting any of my marrieds with their young ones. For the first time in my adult life, this was going to be an all-female Seder, with just the three of us – myself and my twin daughters, Nechama and Batya.

Seder night came and while I usually leave my husband’s zt’l seat empty at the head of the table and sit on the side, this time I sat at the head with the girls on each side of me. I also decided that it would be too hard for all of us to read Maggid together, so I read the first paragraph, Nechama read the next, followed by Batya, and we continued that way through the whole Haggadah. While they were reading, I said it quietly to myself and some parts we sang all together (Vehi She’amda, Dayeinu…). During previous years’ Sedarim, the twins sat at the end of the table and had trouble keeping up with the pace of the reading. The attention was mostly on the grandchildren and all they had to share, and unfortunately the twins usually got lost in the shuffle. At the end of the Seder this year they told me, “Ma, this was the best Seder we ever had.”

As it was a 3-day Yom Tov, I wasn’t sure how I would keep them occupied all day. Before Pesach I ordered some new games from a store in Lakewood. During the day we sat together and I explained to them how to play each one. Sometimes, I played together with them and at other times they played on their own. In the past, Pesach was so busy, between all the cooking, cleaning, serving and all the married children and grandchildren around, I never had time to sit and play with Nechama and Batya. This year, with just the 3 of us, we had all the time in the world.

On Chol Hamoed, we had a few socially-distanced visits from some of my married children. We sat outside while they stayed in the car, or at least 6 feet away. One day we drove into Lakewood and went to visit the children who live there. We threw some candy to the grandkids through the car window and passed the day going from house to house. When Pesach was over the twins helped me pack away all the Pesach stuff and get the house in order.

Now that Pesach was behind us, I again wasn’t sure what would keep them busy. Believe it or not, they are very happy staying home but do appreciate having something to do. I called my doctor and asked if he thought it would be okay to have one married couple over at a time, without their kids, for dinner, as many of them have older children that can babysit. My doctor agreed, as long as we stayed outdoors on the deck, stayed a safe distance apart and kept to other basic rules. My married kids were very excited about the night out.

We work hard to make these suppers pleasurable experiences and it helps keep the girls busy. Almost every night of the week we have a different couple over. Nechama and Batya take care of much of the preparation in the afternoon. Excitedly, they cut the salad and set the table and help with whatever else they can. This keeps them busy in the afternoons and we all really enjoy each other’s company. They are creative about the social distancing rules too, setting up a chair in the middle to pass the food to the other families. My older kids get a kick out of how seriously the twins are taking this whole business! I am enjoying being home with them and they are learning a lot about running a home and the kitchen.

I am trying to see the good in all this. One thing I am definitely grateful for is that Baruch Hashem, they have each other. Before the twins were born, we did not know about their diagnosis, so as you can imagine, it was quite a shock that both of them have Down syndrome. Now I can see that it was a huge bracha. Nechama and Batya do everything together. They take walks, make up dances, play games and occupy each other. They each have a built-in best friend.

Everything Hashem does is good, sometimes we just have to wait a little longer to see it! My hope is that the coronavirus will be the catalyst to bring Mashiach speedily in our days!