First, 'Yasher Koach' on the beautiful, encouraging, positive publication "Down Syndrome Amongst Us". I happened to come across it only recently and read it from cover to cover. I am sure it is a tremendous source of 'chizuk' to all those 'special parents' out there. I feel I want to express my feelings (at the risk of 'exposing' myself)and it is up to you to publish it in whatever context you feel appropriate.
Eight years ago I gave birth to a little Down's baby girl - Menuchi. I was twenty three years old at the time; she was my first baby born in Eretz Yisroel, the third in our family. At the time, it was a big shock and emotionally a roller coaster ride, but she soon became 'just one of the family' and indeed a very special child. From almost the beginning, we knew that she had major heart problems. She had open heart surgery at a year old, but unfortunately her pulmonary hypertension in her lungs was very severe and irreversible! She was 'niftar' at six years of age; she had lived longer than any doctor could have predicted, and relatively speaking, accomplished far more than ever imagined. Like any parent of a special child, I could write a book (and maybe one day I will; I kept a journal throughout Menuchi's life), but for the moment, there is one aspect that I want to express.
Menuchi's short life was not an easy one. She was often sick and in congestive heart failure for most of it. She was on oxygen at home mainly at night, for years, and thus, we knew she would not be around 'forever'. Yet, year in and year out, she seemed to pull through. She went to gan (nursery school) and loved it for the most part. She managed to eventually walk, communicate in her own way, but for the most part she really suffered, and just keeping her alive was a daily ordeal. Medication, doctors, hospitalizations, therapies, etc. were common occurrences, and yet the joy and simcha she emanated was beyond words. Menuchi's death was definitely not unexpected. We are very comforted knowing that her ‘neshama' completed its 'tafkid' and she surely has a very special place in Gan Eden. We all miss her tremendously, but knowing where she is and that she is no longer suffering is a tremendous 'nechama'.
This is the very hard part - When Menuchi was born I almost felt that Hashem was saying "I am giving you a 'nisoyon' but I (personally) come along with this 'nisoyon'". The 'siyata dishmaya' that came with Menuchi was so unbelievably intense and tangible. My davening and tehillim, knowing that she was a perfect opportunity to 'mekadesh Hashem leshaym shomayim', were so real.
The wonderful chessed of family and friends was a lesson of true chessed over and over again. I used to say that because of Menuchi, we had special "Protecsia" in 'shamayim'. It all took on a complete different aspect that affected every detail of life. Then, losing her and becoming a 'normal' family, with the 'normal' day to day aspects of living, with all its regular ups and downs - what can I say?, it's just not easy, and actually very hard, to come to terms with. I feel that we are not part of that special club and not 'zocheh' to that special 'siyata dishmaya'. I am definitely not trying to say that life with Menuchi was simply a 'wonderful, spiritual existence'; far from it. It was often very hard and unbearable, but throughout, our intensity with the 'Ribono Shel Olam' was quite unique and that is what I miss, and that is what I "envy" when I see special parents, and that's what I try to tell 'new parents - We all daven for healthy, well children. We don't want the 'nisoyon' of unhealthy or special children, it's not easy at all. But, if it does come your way then know that Hashem comes with it, in a very unique way. Life takes on a complete different perspective, one becomes part of that 'special club'; the rest of the family is affected by it too, and once you have had a small taste of it, you simply cannot, and don't want to, be just a normal, regular family! So to you lucky parents - Enjoy your special children and all that comes with them!
Now two years later we are fostering a little two month old baby boy with Down syndrome. It's surely the 'weirdest' thing we have ever done, and a big adjustment is just unfolding, but my 'selfish' motive is quite simple - I hope it will put me back in that special "Bargain Basement" in Shamayim (without the pain and suffering).
May your magazine continue to be a source of wonderful 'chizuk'! With much 'bracha and hatzlocha' -
Har Nof, Jerusalem, Israel
This article first appeared in issue #6 of Down Syndrome Amongst Us