Any first-born child causes an upheaval in the house. There are many changes to get used to. A special child caused an especially big upheaval.
I have always been a shy, private individual, preferring to work alone, quietly. Meir'ke's birth automatically qualified me to enroll in the following courses:
'Midos' Training, with a choice of majors in Patience or 'Someach BeChelko', with extra-curricular work in Smiling and Optimism and Exuding Confidence.
Paid Professional Help
This was a particularly valuable course in that we learned how to clean the house on a moment's notice, and procure any equipment which any professional recommended lest we be held accountable for neglecting our child, while simultaneously making visits to doctors, hospitals….One was not allowed to take this course without enrolling in number 1, above.
Advocacy. The prerequisite courses for this class were numbers 1 and 2 above. We were taught how to speak up on behalf of our child….A particularly valuable part of this course was entitled "Kiddush Hashem". We, as the new parents of a special child, has just been thrown into a world populated by people other than the 'Kollel-Leit' we had been used to….
Every child is a gift, and a special child is a special gift. In spite of all the difficulties, the sadness, the confusion, the frustrations….the joy and satisfaction of raising Meir'ke more than compensate. There is nothing to match the pure sweet love that he showers on everyone he knows, and we are overwhelmingly grateful to HaKodush Boruch Hu for His unending kindness.
UPDATE: MEIR SIMCHA ZISSEL AT 15
My very special child has become even more special as both he and I mature. Or is it only that I now see him in a different light?
I no longer feel that I have to make a statement to the world. I am more relaxed. I do not want to use Meir to prove anything. I am more tolerant of strangers and more accepting of myself. And I am more tolerant of Meir. He is handicapped. He is limited. I never wanted to believe this before. And I cry form the depths of my soul as I say this. But….if he were different he wouldn't be our Meir.
On the other hand, the spotlight is now on Meir. Having a child with Down's is no longer something I alone have to deal with- it is Meir's problem too. He understands more. He spends more hours in the public domain than he does at home. I want so desperately just to protect him, to provide him with a cushioned existence at home, to be totally accepting of him and not demanding at all. (This is not entirely practical, as we still want him to act like a mentsh, and we do transmit this message to him, thereby making certain demands on him.) But my prayer to Hashem are now-more than making him as normal as possible-to watch over Meir and not let anyone harm him, not by word, nor by actions.
I want Meir to be happy, and I have therefore lowered my sights. I no longer appeal to his teachers to do more with him. When the school wanted him to work in a hotel kitchen last year peeling potatoes, I was aghast and absolutely refused. My precious Meir! He's a budding Talmid Chochom (which I still believe). Guess what he's doing this year as part of the school's work preparation? Your guessed it. He still learns Mishnayos privately with a wonderful bochur (the school feels he is not capable of learning Mishnayos), and together they made a Siyum on Mishnayos Brochos. Now they are learning Sukkah. We are so proud of Meir and so grateful to this bochur.
Meir insists he is getting a beard like Aba's. (We can't see it yet.) He speaks to his friends on the telephone and just spent a wonderful ten days in the Ezer Mitzion day camp. Now he is back in his special yeshiva with a Rebbe who loves him and encourages him.
My dream now is to try to create a village- perhaps on a Moshav or Kibbutz- 'Al Teharos Ha'Kodesh' - populated by retarded citizens who will be completely self-supporting through various factories and work projects. I am no longer interested in Meir's becoming a useful citizen in a normal population. I would like to provide him with a framework where he will be productive and HAPPY…..and protected.
Another facet that I have noticed in myself is that I am intensely grateful to HaKodosh Boruch Hu for having sent Meir to me, but in a different way than I was grateful before. Until now, I was grateful to Hashem for sending me this precious sweet child who emanates such goodness and kindness that it is almost tangible. My gratitude now is for what I have become, and what my other children have become- and in which direction I pray we may continue to develop. My children B'H are compassionate, understanding, tolerant, mature human beings who love their brother with an all-encompassing love, more that I could ever have dreamed possible. Meir is the loving bond between members of the family, the neighbors, and the wonderful, wonderful fellow travelers we have had the privilege to meet.
Did I ask for this? No. Would I have missed this opportunity? Emphatically 'No'. Thank you, Hashem. Please help me be worthy.
This article first appeared in issue #4 of Down Syndrome Amongst Us