Letter from an anguished mother

To Sarah Sander:

As a mother with a 21-year-old daughter with Down syndrome, from the day she was born a day has not passed without the feelings of pain and loss. My daughter is beautiful, sweet, smart, and I love her with a unique passion – however she will never be the daughter I dreamed of having a "normal" relationship with.

Living in a frum community compounds the issue, since all around me, typical young girls are getting engaged and married – and my jealousy doesn’t even allow me to be b’simcha for those families since the chances of my daughter going to the chuppa are doubtful.

I believe that if I didn’t feel so alone, I could manage it better. Here in _____ (city of residence) there is no support. Do you know of other mothers who have similar issues who would like to share their ups and downs in a dialogue of some kind?

I really need the help. Thanks.

Editor’s Note: This was a private letter sent to me in the mail. However, I felt that this was a good springboard for reflection for many parents out there. Therefore, I decided to publish it, omitting all identifying factors. I look forward to readers’ comments to both the letter above and my response below.

Dearest ------- shetichya:

Your letter is indeed heartbreaking.

There is a vital piece of information missing in your description. Is your daughter an only daughter, or perhaps even an only child? I think therein lies part of the answer.

As parents, we love all of our children and have hopes and dreams for each one of them individually. However, if Hashem has structured our lives in such a way that those hopes and dreams cannot come to fruition, we swallow hard and move on, because our very existence in this world is only to fulfill His ultimate will.

Again, if your daughter is an only daughter or child, then you are understandably crushed and your emotions are prevailing over the above logic. However, if she is not an only daughter or child, then let me share with you how we are dealing with our Moishey.

Moishey is now 20 years old. He is the second of our six children KA"H. On the very same day he was born, he got 2 first cousins, males as well. A threesome, and he is the odd man out. The first of the three became engaged last week. The other one is deep into the shidduch scene. Are we pained? Are we hurt? Not at all. We have made peace with this reality. Moishey will most likely never get married, unless he turns out to be one of those miracle Down syndrome individuals. For a while it looked like he was indeed one of those miracles, but then anger issues and behavior problems took over and any prospects of marriage that we might have entertained on his behalf went out the window.

A child with special needs is a challenge from the day it is born – not only when its friends and neighbors are getting married. We dealt with the realities from early on and now we are not harboring any grief or angst about unrealistic expectations.

Perhaps, more than chizuk from other affected families, you might want to go for counseling where you can get to the bottom of this, tap into your real feelings, get over the grief, and enjoy your daughter for the nachas she is giving you in her own unique way, marriage and grandchildren notwithstanding.

My heart is with you.
Sarah Sander


Left by Chaim - Sunday, June 20, 2010

Mrs Sander, I would like to add on to the heartfelt words you gave. Irrespective of how many other children (if any) that this mother has, I am saddened to think that she can feel so alone in what she describes as a frum community. We also have a daughter with DS, but far from feeling alone and isolated, we were enveloped with warmth, love and support from the day we found out about her condition. We live in a fairly large frum community, and there are probably around ten other DS children of various ages here (bli ayain horo), as well as a selection of children with other special needs. There are organisations in place to give all kinds of support, from meals while you're in hospital to emotional support when you're having a hard day - as well as a lot in between. I don't know where her community is, but maybe the author of this letter should see if anyone else around her is in a similar situation. Are there any other special kids around, DS or not? To be blunt, if she lives in a community that can't give ehr the support she needs, then I would suggest she thinks about moving. That sounds very harsh, but chessed has always been one of the fundamental defining features of our kehillos, and if that's lacking where she is, she would probably be better off moving. Obviously, without more information it's impossible to say, but I do want to make the point that a kehillo (however small) should support every single person living there. No-one should have to feel the way this mother does. Thanks

This article first appeared in issue #14 of Down Syndrome Amongst Us

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