By Chaya Porges
The year 2019 will always remain etched in my memory as an exhilarating yet exhausting year.
With Malkie, born with Down syndrome, just a year old and newborn baby Chezky almost sharing a birthdate with her, just one year and 10 days later, my days and nights were hectic beyond description. My three older boys, with the firstborn just 7 years old, demanded my full attention and entertainment from the moment they stepped off the bus at the end of their cheder days. Malkie was our angelic dolly, who was born with gastro-intestinal challenges and relied on a feeding pump to deliver her nutrition. But the constant tag-along pump got me thinking three times before carrying her to another room. Newborn baby Chezky wasn’t going to surrender his right to his mommy’s attention, despite the many other obligations she had. And so, Mother Hen was kept on her toes, hopping around from baby to baby. From feeding Chezky, to changing Malkie’s feeding bag and formula, cleaning up her leaky G-tube and silencing the never-stopping-to-ring feeding pump.
Malkie’s therapists were making their scheduled appearances and she was not a happy camper. More times than I can count, both my arms were occupied by my two precious chicks. Supper was something that just happened – I can’t remember how. However, I am here to testify that we didn’t starve.
My dining room, a/k/a entrance and main room, hosted a Bugaboo carriage, Doona stroller, 2 swings, a high chair and feeding pump with pole. For those artists out there trying to paint the picture, add in a 12-hour certified nurse generously taking up the entire width of my loveseat…. And in case you envision a large room, I’m here to tell you that it’s not big at all.
Between the nurse, therapists and cleaning lady, I can confidently say that I had forgotten the definition of privacy. My phone conversations were up for entertainment and my housekeeping skills meticulously watched. I had no empty room to escape to and oftentimes made some mysterious getaways to the park for some space, leaving my babies under the supervision of my not-always-so-trusted nurse.
My days were merry-go-rounds, racing through at dizzying speed. Phone calls, appointments and the never-ending to-do lists were the order of the day. But at the same time, I enjoyed the ride, the thrill and the many blessings it brought with it. I let the wind of love brush my face and felt the merriness of life at its peak. I did not see yesterday or tomorrow, but rather lived each day, each hour and minute by minute. Yes, 2019 was a year of living!
As everything else in life, time moves on and my baby chicks were growing up. No more long naps for Chezky. Malkie was no longer satisfied by being a passive onlooker. She was seeking motivation, stimulation and company. Although she had Chezky as a built-in companion, leaving them together wasn’t a safe option. Chezky was starting to move forward and would always grab her feeding pipe, sometimes pulling her G-tube out of her abdomen. So miniature Malkie would sit in the highchair. Or on the table. Or the counter. Meanwhile Chezky would figure out his way around the kitchen. Seemingly perfect arrangement? No. I wanted Malkie to use her muscles, to learn to get around just like her younger brother.
Switching the arrangement with Chezky in the highchair/ on the table/ counter wasn’t working for him. What to do?
Friends and family were starting to question me about my plans for schooling; when and where was I eventually planning to send Malkie?
I didn’t have a second of time to even contemplate this question. However, with each passing day I realized that it wasn’t any more a question of the future, but rather, of the tomorrow.
Since there are no outside-of-the-home EI (early intervention) programs for children under the age of 2, I started calling mainstream day care centers and playgroups. The responses were either a straightaway, “Sorry, we don’t have any available slots”, or they did have room but it changed the moment I mentioned Malkie’s diagnosis. A few weeks passed and someone recommended “Jolly Baby Center”. I had never heard this name before and was doubtful whether I should even give them a try. After some convincing on the part of family and friends, I placed the call, which was answered upon the second ring.
Without much hope (or any hope at all?) I questioned whether they were accepting new enrollees. After answering in the affirmative, I dropped the bombshell; “My daughter has Down syndrome; would you even consider taking her?” I couldn’t have been more shocked when she answered super-casually, “Of course; this is what we are here for – to service our community, diagnosis notwithstanding”. I found myself tearing up from emotion. I can’t explain the excitement I felt that there were still people out there that just “got it”!
Without much effort, Malkie and her younger brother Chezky were off to Jolly Baby Center! I could have said ‘the rest is history’; however, history is still in the midst of happening. The teachers, the staff, the place… I couldn’t be any happier! Malkie is being handled with such care, love and warmth. Her teachers celebrate her every milestone like she would be their own. They involve her in every activity and boost her cognitive skills. Since she entered JBC she has become so much more socially aware and playful. I haven’t had a therapist in my house ever since; they all go to the center. (Yes, I am being asked repeatedly what I do with all my time during the day. You can contact me privately if you really want to know 😊 ) The staff at Jolly Baby Center has been understanding, helpful and forthcoming about her G-tube and different medical needs. When I pass JBC on an off day with Malkie in the stroller, she literally jumps out when passing! She wants to go to school!! I write this with tremendous gratitude and appreciation to JBC; Their Amazing Leadership and Wonderful Staff!!
While my little journey certainly has a happy ending (and beginning, for that matter) many others in similar situations are still suffering despite the progress the world has made in “normalizing” kids with Down syndrome. For example, Chavy, a mother of 3, including one child with DS, living on the outskirts of NYC in a small, yet close-knit community, applied to one of the few playgroups in town. The teacher made it clear that “If he will sit with his cheerios and sippy cup in the corner, then this playgroup is not for him”. Such was her assumption about the capabilities of a child with Down syndrome.
Ahuva and Sury have shared their frustrations multiple times about the comments made by friends or strangers when they see their DS children interacting. People are so shocked that kids with DS are actually People!
“Wow! I can’t believe he understands you!”
“He does THAT? I didn’t think he actually does anything!”
Are people still so unaware?
Yehudis finally found a playgroup that would accept her Naftali with DS! She was ecstatic! As instructed, she phoned the director at night to set up a meeting time for the next day. Ever so casually, the director told her to, “Bring him early in the morning so the other parents don’t get to see him”!
The saddest and most painful experience yet is when our “normal” children are being “educated” by innocent, well-meaning neighboring children. Esty reported to me after Shabbos that, “My daughter was playing on Shabbos with an older kid who told her, ‘Your brother won’t be normal when he is older. He will always be like a baby.’” The tears that ensued… it took her daughter days to calm down.
So yes, while some of us celebrate the progress our world has made with regard to these wonderful children, there are lots of those who are being painfully misunderstood and judged. As much as these special mothers do everything for their precious child, they sometimes end up hitting a brick wall due to uneducated, unaware individuals.
So, thank you Mrs. Sander for your inspiring DSAU publication, which brings much-needed awareness, education and most of all, rays of light and hope to these hard-working parents!