When an ultrasound during my fifth month of pregnancy indicated that I was carrying a healthy baby girl, I was ecstatic. The euphoria never dulls, especially when we all tend to indulge in wishful thinking that lightening doesn't strike twice within the same family.
The shock and disbelief when my daughter was born with two major anomalies was staggering. First, our newfound mistrust of modern medical technology. My baby's organs were closely monitored in utero during that sonogram. Everything appeared as should be. Then, we were again thrown into that 'club' of parents being put to test...special test...and for us this was the second strike of lightening.
Boruch Hashem, I breathe a deep sigh of relief as I am typing these words, for I now know that she is 'fixed' and perfect KA'H, and we are putting this difficult experience behind us. But, just a few months ago I didn't feel relieved. I felt distraught and frightened. My family and I experienced three months of mental and physical torture, just waiting to see ourselves out of the crisis.
During this period I did a lot of self-introspection. I also met lots of people and lots of sick children. One day an interesting thought found its way into the recesses of my brain. We were going through much greater difficulty with this baby than we did after Moishey was born. Moishey came home 48 hours after his birth, had his bris at 2.5 weeks of age (because of jaundice and low birth weight) and did all the normal and not-so-normal (colic) infant things that he was supposed to. And yet, there were people who were whispering behind us and around us about our refusal to give up our baby. He had Down syndrome! Why keep him?
Now, here I was, with a mentally intact baby B'H, who was very ill. For three months I was travelling every single morning (real early!) and returning late evenings, to and from the hospital. Some days, I did not see my younger children at home during their waking hours, only getting to kiss them while they slept. Purim and Pesach were spent shuttling between home and hospital, the joy of those days hard to come by. I still remember so vividly, as I was standing in my kitchen on Erev Pesach, preparing the special foods for the 'seder', the tears were pouring down my cheeks. We had re-admitted my baby the previous night to the hospital, this time to a medical facility much farther away from our home, and here we were preparing for a three and a half day Yom Tov (Yom Tov went straight into Shabbos). As I stood there, my shoulders shaking uncontrollably, my body wracked by sobs, I told my family, "I can now make salt water for the whole town."
Did we ever entertain the option of not bringing our baby home? After all, 'our family was suffering.' I 'wasn't coping.' The answer is obvious. Moishey has mental retardation. This baby doesn't. Therefore, Moishey does not deserve to live at home with his biological family, because 'he will be too difficult on us'. This baby, whose myriad medical issues made life hell for three months for us, has the potential to get 100%'s on her school tests, therefore she belongs home with her family.(Incidentally, Moishey has received a 100% on every single one of his tests that he has had in yeshiva, so far!) All of our children belong with their families. To advise giving up children because of 'their difficult care' is a smokescreen. It is really society's way of saying, "Don't accept a child with mental retardation." I have witnessed situations where 'normal' children have medical issues that make Down syndrome look like ice cream. Nobody gives up those kids. Has anybody ever heard of a child with cancer being given up for foster care or adoption because its care was too taxing on the family? Let's get real!
Childrearing was never meant to be easy. But, oh! How great the rewards!
This article first appeared in issue #12 of Down Syndrome Amongst Us