Today I was reading a lovely booklet that I picked up yesterday at the Child Development Center where Yirmiyahu has physical therapy (he’s now going once a week). It’s intended for new parents of infants with Trisomy 21, with encouragement and inspiration based on Torah sources.
As nice as it was, one aspect of it bothered me somewhat – how having a child with Down syndrome was repeatedly referred to as a nisayon (test/trial), and the encouragement offered was accepting this perception as the reality. I understand that a lot of parents have a hard time with the news that their baby has T21, and they can find comfort in seeing their painful experience as having deeper meanings in the spiritual world, and that’s not a bad thing by any means.
This reminded me of a conversation with dd18 a few days ago, when she shared with me about a book she was reading. The gist of it was ‘why do bad things happen to good people?”, and an example of a bad thing was having a child with a disability. Dd said that it bothers her to think of our baby being seen as a bad thing when to us he’s just pure sweetness – we think he’s the most wonderful baby in the world! Our entire family is so in love with him and though he’s only five months old, he has been such a joy to us from the very beginning.
After Yirmiyahu was born and we announced the news that he has Trisomy 21, some people told us what a great attitude we have, commenting on our advanced spiritual level and amazing faith. They heard what we said but they didn’t understand what we were saying. We weren’t on a high spiritual level and we don’t have deep levels of faith. Our perception wasn’t, “Oh, this is so hard but let’s put a good face on it and tell ourselves that it must be for our good.’ We really felt like he was a special gift to our family. The difference between feeling you’ve been given a gift or being given a challenge are very significant, and how you respond will correspondingly be different.
If your friends all were gifted with Chevys and you received a Lamborghini, would you feel like you were missing out because you got something different from them? Would you feel that you were saintly for accepting your car without complaining because you wanted to have what everyone else had? No, you’d be thinking how lucky you were to get a Lamborghini and be so grateful to the one who wanted you to have something extra special! What if you needed to pay more for premium gasoline and take your Lamborghini in for more frequent check-ups to keep it humming smoothly? You’d understand that a more finely tuned machine requires more delicate handling and would willingly pay the price to maintain it well because that’s part of having an Italian luxury sports car! Well, that’s how I felt about Yirmiyahu – we were the family to get a Lamborghini baby. I truly believe we were given a baby filled with so much love -was not to test us, not to punish us, not to grow us through a challenge – but because G-d wanted us to have the joy of having a very special gift.
We live in a world in which there is so much competition, and we may want to be better than others but not different in any other way. So having a baby who looks different and is expected to have a delayed developmental curve seems like a bad thing. But when we’re so busy looking at what we don’t have, we can neglect to notice what we do have – and children with Down syndrome have some unique gifts, gifts that bring tremendous light into the lives of those around them.
I don’t want to seem like I’m living with my eyes shut, I’m in denial, or have plastered rose colored glasses on my face. I know that there will be challenges. There have been challenges. There have been and will continue to be challenges with all of our children. That’s parenthood. But my primary feeling is that G-d gave us Yirmiyahu to make our lives richer and happier. Saintly I’m not but grateful…absolutely.
Avivah
Wow, you write so beautifully about having a child with special needs. I also have a child with complex special needs, and honestly I find it quite challenging. She doesn’t have Trisomy 21, but has her own unique needs. For us, I see our daughter more of a nisayon than as a gift, even though deep down, it all is a ‘gift’. Thank you for your chizuk!
Rachel, I don’t think I would be able to write all that I did about different special needs. Down syndrome is a walk in the park compared to lots of the challenges out there; it is probably one of the easiest disabilities a person can have. You’re right that it’s all a gift, but many things can only be experienced as a gift if we find the philosophical perspective to give us the bigger picture – eg, soul purpose, the world to come, etc.
I wish you lots of strength and nachas from your daughter!
I heard once that the shoresh of the word nisayon is nes ( miracle), Your post is a poignant testament of this.
Once again, truly amazing and inspiring. Happy Chanuka!
Dear Aviva,
Clarity, that is what you have been blessed with. May we all merit to such clarity!
This is so beautifully written. My 22 year old stepson has Down’s Syndrome and though I was not the one to give birth to him, he is truly a blessing. My husband said that he has taught him how to truly love and to be more open with his affections. They do have very special gifts to share with us! They are such blessing!
I hate to be a downer, but its all very easy and good to say that someone with down syndrome is a special gift when they’re a baby, but when they’re 40 or 50 and never grow up, are constantly a child that will need to be looked after, even when you’re old and will need someone to take care of you… how, then, can you say “I got a lamburgini”? I really think you’re not in touch with the realities of what it means to have a kid with downs syndrome. Yes, as a baby they smile a lot, but theres limits to how different they are from all other babies. Its when, as they grow up, they don’t really grow up much and always need more care than other kids, even well into adulthood… Well, I’m interested if you’ll still be singing the same tune then.
Can you tell me- what are the special benefits of a 20 or 30 year old with down’s syndrome? Or a 10 or 15 year old?
I’m responding to your questions in the next post. Thank you for your question, and I hope you’ll feel able to use your first name – or even a made up first name – if you decide to comment in the future.
We have a special needs son, nineteen years old,who to our knowledge,has no specific type of retardation.We were encouraged by our pediatrician to receive genetic counseling,which we will have to look to doing.Aryeh, can be a challenge, as he can also be incredible helpful.He understands so much, although he’s aphasic.He loves music and to go out for rides. He loves camp and I wish we could send him to a year round camp. The one we send him to is very expensive and we hunt down funding opportunities so he can go. My husband and I are looking to make aliyah about 2014 and I’Y’H we will find an appropriate placement for Aryeh to live.Maybe someone out there can be helpful in navigating the Israeli social services that some say are frustrating. Hoping to here from people who might have ideas that could be beneficial for us. Kol Tov. L’hitraot, Alice
Alice,
Do you know where you plan to live once in Israel? You could try Yachad Israel. In RBS there is the Mercaz Rakefet child development center. The social worker, Vardit, has lots of information and is a bit help. You could also join the specialfrummoms yahoo group to meet others who I”m sure could help as well. Hatzlacha!
Avivah,
Shavua tov! I found your blog looking for something specific to Pesach! So glad I found you! B”H!
I just wanted to comment here as a teacher of special needs children…you do seem to have an amazing outlook! I respect and appreciate what you have written here, and like you, I feel blessed to have my students in my life. While they are not my children, I don’t yet have my own, but do feel blessed!
Thanks!