Today was Sheina's birthday.
This morning before she went off to school, I said to her:
"Sheina, today is your birthday, you are thirteen years old."
She showed me thirteen in ASL (American Sign Language).
"Look, we got you a chocolate birthday cake, with flowers and cream, just the kind you so enjoy.
She displayed excitement.
"You will take it to school and give a piece to Chris” (her autistic friend). She smiled.
“And a piece to Mr. Parker, (the teacher) to Jovanni, (her aid) to Maria (her shadow) and everyone else in the class.”
She was happy.
That was the point.
And off she went to her special school.I sat down, said some extra Prayers for her and
I wondered if she even comprehended what a birthday is,
Besides that you get to enjoy some gooey cake.
Then I went to my room, closed the door and cried.
I cried -
for Sheina is different.
Once a year, when I take the day to think and reflect on the past, I cry.
I deserve this luxury, don't I?
I cry because at age thirteen Sheina still needs to be dressed, is still using diapers. I am still feeding her and
And it is really truly hard!
My eyes still wet, I remembered the conversation I had with my new friend, Sara, who asked me to tell her about the challenges of living with a special needs child.
Without thinking I said to her,
"Why would you ask me to tell you about the challenges of living with a special needs child. Go ask someone who has challenges...."
(I was thinking of the story, of a man who asked the Baal Shem Tov how it is possible to fulfill the requirement to bless G-d for the bad things no less than for the good ones, and to accept them with joy to boot.
The Baal Shem Tov told him to go and pose the very same question to his student, Reb Zushe of Anipoli and he would receive an answer.
Upon finding Reb Zushe the man observed more suffering and hardship than he had ever seen. Reb Zusha was a frightful pauper, with never enough to eat in his home.
His family was beset with all sorts of afflictions and illnesses, yet he remained good-humored and cheerful.
When the man explained the purpose of his visit and awaited the answer, Reb Zushe, with a puzzled look replied "I think there must be a mistake.How would I know? The Rebbe should have sent you to someone who has experienced suffering.")
Oh, now don't get me wrong. I most definitely have challenges, struggles, but not necessarily more from my special child.
I always say, there are "G-d given problems" and, although everything is from G-d, there are "Man-made problems" struggles, confrontations and issues that we create.
Giving birth to a "challenged" child is a "G-d given problem" those problems we just take. We just accept without calculations. What else can we do?
Sheina was just given to us. She is different, not the typical child we are used to. But her soul is perfect; nothing can mar it. We have nothing to add.
When we give birth to a “normal” child, G-d says, "Here, take this thing and mold him/her into a mentch! Do the best you can with this lump, shape him, guide him etc."
And we try so hard, we never know if we are doing the right thing, we never know how our efforts or decisions will affect this child. What worked for one will not necessarily work for the other. We worry and worry (as if that helps).
We pray and we pray. And then we pray some more.
We wish for the perfect results. Then if, heaven protect us, the child doesn't "turn out" as we planned it, doesn't follow our roadmap, goes off the beaten path... then, oh woah, we are devastated! We are ashamed, we feel like we failed.
Now, that is a challenge.
Sheina, on the other hand, came to me molded already. It was nurturing she needed. G-d said, "Here is this thing, take her home and take extra good care of her, for she is special."
So, yes, though she is now thirteen I still need to wash her, feed her, diaper her,
but I don't have any of the worries (or shtick) from her that I’ve had from my other teenagers. I’m not concerned that she will mix with bad friends or stay out late. I don't have the worry that she will go off the beaten path.
Sheina is non-verbal,her limited communication delivered
There will be no chutzpa coming out of her mouth, no defiance, no talking back. Her soul is pure.
When we are out in the public, yes she will do embarrassing things, make weird noises and attract attention. Yet the shame I have is nothing compared to the shame and deep pain I experience when my other "challenges" (a.k.a. children) choose to disregard or confront me.
That is something to cry about.
So I wiped my tears,
Came out of my room, and continued to live.
For these are the regular ups and downs of our lives.
It is all part of Tzaar Gidul Bonim,
The pain and anguish that comes with raising children.
As I thought about it I wondered,
Perhaps these are MY GROWING pains...
So if you ask me, what are my challenges living with a special needs child?
I will ask you what are your challenges living your “normal” life? Are they really any less?
We attempted to give Sheina an especially joyous day.
She partied with lots of her favorite foods.
We Sang Happy Birthday to her,
Put extra coins in the Charity box,
Said some Torah Passages.
Her volunteer came and brought her new nail polish, a rainbow of colors.
She got a balloon and two new sets of memory games.
Sheina was happy. And so was I.