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Monday, February 18, 2013

Stage 5: ACCEPTANCE (a.k.a. The End of the Pity Party)

When I was a young girl - 18 years old or so, my first cousin had a baby boy. Mazel Tov! The trouble is, I had found out about a week before that she was expecting. The baby weighed under 2 pounds. He survived. He is now 18 years old. He is doing fine basically - except he has something called ROP, Retinopathy of Prematurity. In other words, this precious boy is blind.

His parents are the most incredible people I have ever met. They spared no effort and no dime to get the best care for their son, and to help him reach his full potential. He was partially mainstreamed and is now in a special ed yeshiva. I was invited to his bar mitzvah; it was a tearjerker. He is blessed with a melodious voice and a gift for music. He sang a moving song thanking his classmates and family for all their help. He delivered a bar mitzvah pshetl in Braille. It's an event I won't ever forget.

Utilizing his experience in the special ed field, my cousin's husband soon became the director of EEC, the local special ed school. At some point - I think at their second son's bar mitzvah - I told my cousin about Dovi. Ever the composed, dignified person who keeps her emotions in check, she didn't react visibly. But from then on she always had me in mind when there was an event she thought I would benefit from. She invited me to the annual EEC Shabbaton, and I was positively dying to go - but it clashed with the aufruf of my sister's chosson, so I had to skip it. But about a month before that Shabbaton, my cousin called me with a different offer. EEC held support events every few months for their parent body, and even though I wasn't really part of their parent body, she thought I would benefit from attending. As soon as she told me the name of the scheduled speaker, I jumped!




Rabbi Eitan Feiner. And his wife, Rebbetzin Aviva Feiner.

For those of you not familiar with this amazing couple, here is their background story. They didn't have children for 12 1/2 years. TWELVE AND A HALF YEARS! Then their very long awaited child was born - a beautiful, healthy boy. You can imagine their euphoria. 45 minutes later, everything went haywire. Their baby's body started shutting down. For several days, the child was on life support; they ran every test imaginable and couldn't pinpoint the source of this mysterious malady. Finally they discovered something so rare, that it was the first such case in medical literature. The baby was missing the enzyme that transforms the amino acid Glutamine into Glutamate, causing toxic levels of Glutamine to build up in his body. The doctors scoured Israel looking for a synthetic form of the amino acid; they woke up a 19 year old girl in the middle of the night who had it in her possession. They administered it to the baby and saved his life. But by then, there was irreparable brain damage, as there had been massive swelling in his brain. The child spent the first six months of his life in the hospital. Finally he was able to have his bris, which was quite an event, with 1000 people celebrating! His name is Avraham Yeshayahu; he is named after the Chazon Ish (who was known to stand up in the presence of special children).

I had been following the saga of baby Avraham Yeshayahu from the day it happened. Aviva writes frequently in Mishpacha magazine. I'm a huge fan of Aviva's writing and I was very excited to meet her. Most important of all, I couldn't wait to hear Rabbi Feiner's speech - because he had both challenges that I had: He had waited a long time for children, and he is a special needs parent. Granted, I do BH have one healthy child aside from my special needs child, and my own special needs child is a lot 'healthier' than his is, so it's not a fair comparison. But still, I knew that I would be able to take whatever he said on that podium in a completely different light than a speaker who is not going through this combo himself. For one of the things that always made me feel set apart from other special needs parents is that fact that I have a small family, had to fight tooth and nail to have these children, and will not have many more children. There are very few other avenues for nachas for me, and Dovi was such a hard-fought miracle baby, that the tragedy feels magnified to me. Finding someone who waited for children and then became a special needs parent is not such a common combination, and I have only found a handful of such people to relate to. So I knew that this speech would hold special significance for me and I couldn't wait to hear it.

The day of the speech was particularly stressful, smack in the middle of two incredibly difficult weeks - probably the two craziest, zaniest weeks of my life ever. But I squeezed it in. I had to be there.

I had absolutely no idea that I would walk out of there a changed person. For that very night, I finally attained the precious, longed-for acceptance of my particular, uniquely mapped out life plan. I put a permanent end to the big Pity Party. It was a night that changed me forever, and altered my perception of life and spirituality irreversibly.

I introduced myself to Rebbetzin Aviva and told her how inspired I was by her life story and by her writing. She showed me a picture of her absolutely gorgeous little boy. A wave of immense sadness engulfed me as I pictured what this beautiful little boy could have been had he not had the freak meltdown an hour into his life - which had been repaired permanently just days later but forever damaged him. I couldn't imagine the pain and heartbreak the Feiners live with every day.

And then Rabbi Feiner stood up at the podium to speak.

And I didn't move for the next 50 minutes.

Here is the gist of his talk - extremely condensed, of course. I hope it makes an impact on you as well - whether you're going through hardships in your life or your life is smooth sailing, this speech is a true eye opener.

Rabbi Feiner started off by relating a story of R' Elya Meir Bloch. It was right after the Holocaust, and it was Simchas Torah. R' Elya Meir had just lost his wife and children in the Holocaust, yet he danced with the sefer torah with pure joy. Other mispalelim at the shul were taken aback; the nation had just undergone massive personal tragedies - how was he able to transcend his personal pain and dance with such simcha? R' Elya Meir replied that it was not a stira (contradiction). He was mourning his wife and children the entire time he was dancing with the Torah. It is possible, he said, to feel sadness and joy at the same time. It's possible to feel sadness at your own personal tragedies while simultaneously feeling simcha at doing HaShem's will.

When Avraham Avinu was going up to the mountain to sacrifice his son Yitzchok, his heart was filled with sadness over losing his only child, yet at the same time, he was filled with joy over fulfilling HaShem's will.

During kriyas yam suf (splitting of the Red Sea), the angels wanted to sing and dance, but HaShem admonished them - "How can you sing my praises when my children lie dead before me?" The angels protested - why were the Yidden allowed to sing and dance and they were not? The answer is that angels do not have the ability to feel two emotions at the same time, while human beings are able to happy and sad at once.

Rabbi Feiner then told us his story in brief - I sat riveted and emotional while he relayed what it was like for him and his wife to watch their one and only, long-awaited child become incapacitated from one moment to the next, forever. "My son cannot speak. He cannot walk. He cannot eat. He cannot sit up. He cannot breathe on his own." OMG. "We have spent many shabbosos and yomim tovim in the hospital. We almost lost him many times over. Yet I have not stopped to thank HaShem for one minute for this special gift."

Did you hear that, everyone? Rabbi Eitan and Rebbetzin Aviva Feiner, who had waited for 12 1/2 years for children, and their one and only child is profoundly disabled, with no hope of recovery, were thanking HaShem every day for their gift. I was humbled beyond words. How on earth did I have the audacity to complain? To feel sorry for myself?

The pity party was officially over. I wasn't a rachmanus anymore. I couldn't complain if Rabbi Feiner was thanking HaShem for his special gift.

Rabbi Feiner went on to explain that as human beings, we were permitted to feel sad over the loss of nachas, the loss of potential, the difficulty in raising a special needs child. We were allowed to be - human. Human beings have feeling. We don't have to cover them up and pretend all is glorious in Special Needs Land. However, at the same time, we had to work on feeling happy at the fact that we have to experience this nisayon. Why?

Because the special needs child in our life is the one thing we need to achieve shleimus in this world. It is the sole reason we were created. For whatever reason, we were created to take care of this child, to go through this nisayon. And therefore we have to be grateful to HaShem for giving us the tool, the object, that will help us achieve the purpose for which we were created.

I was astonished. This wasn't a fresh twist to Only special parents have special children or HaShem loves you so much therefore he gave you this hardship. It was simple, loud and clear: The only reason I came into this world was to raise my special needs child. I am not in this world to have a good time and enjoy the luxuries of Earth. I am here to complete a mission I was sent down for. And I am one of those lucky people who actually knows what my mission is! yes, it is okay to be sad. It is okay to walk up that mountain, about to perform Akeidas Yitzchok, and mourn the loss of this child, the loss of the potential of this child, the loss of future nachas. But at the same time, I had to be happy and joyous that this child was helping me fulfill my mission of creation, my tafkid.

Astounding. Amazing. So clear. So simple. How did I not see this all along? This is my mission! It's tough, it's murder, it kills me every day. But it's my tafkid, my reason for creation! I am in this world only in the merit of raising Dovi. How incredible is that??

The next thing he said astounded me no less. It is the simple truth of life, the truth we conveniently ignore, and seem to forget, as we live in the World of Untruth.

"We come up with a plan... we want to have a certain amount of children, wonderful, smart, beautiful children. This one will be the godol hador, this one will marry a godol hador, this one will be mefarneis all the mosdos... and then HaShem gives us a special child and we're so broken. Why? Because it doesn't fit in with our life plan. Why? Because we want to control our life. We want our life to be the way we want it to be. We're not in charge of our life plan! HaShem is the one who has decided what our future will be, and our job is to accept that this is His plan for us."

How simple. How profound. But we lose sight of that. We all think we can control our fate. We work so hard to put our life plan into process. And when HaShem throws a monkeywrench into our carefully laid plans, we freak out. We forget that we are not in charge!

A third point in his talk also made a profound impression on me. We say every morning (I guess those of us who remember to say birchas hashachar) "Sheoso Li Kol Tzorki" - He who gives me all my needs. Hey - do any of us realistically have all our needs? No. We lack money. We want more children. We want better children. We look around and see, hey my siblings have six healthy kids. My neighbor has a lot of money. I'm lacking so many things. So what's the pshat? "Oso Li Kol Tzorki" - HaShem has given you exactly what you need to get through your life and to fulfill your role in life. If HaShem did not give it to you, you do not need it to complete your mission in life. If you would need it, HaShem would give it to you.

Astounding! I was the Queen Bee of Jealousy, the one who couldn't sit at family events without feeling inferior and "less than" and out-of-place among my siblings. But - every thing I have in life and lack in life is exactly what HaShem gave me to fulfill my unique mission in life!

The Jealousy Party ended right then and there. I have never since been jealous at anyone for their good fortune. And I have since then, become so happy and content with my lot in life, with my challenges and hardships and my role in raising a difficult autistic child.

The timing of this talk was uncanny. In the next post I will write another profound thing Rabbi Feiner said that came just in time of a major crisis, which had a major impact on my ability to cope.

I listen to this speech whenever I need a pick-me-up. It is so profound, so heartrending, such a massive boost of inspiration, it never fails to uplift me and reaffirm my role as Dovi's mother.

I have the speech as an MP3 on my laptop and will gladly email it to anyone who really needs it.

Thank you, Rabbi Eitan Feiner, for the powerful, spiritual, touching speech. Thank you, ECC, and my cousin for inviting me. I have never been the same since I walked out of that ballroom, the content of the speech ringing in my ears and reverberating in my mind. You have helped me see the light, to reach that precious ACCEPTANCE I had been craving and praying for.

That doesn't mean I haven't complained since then. Raising Dovi is still very hard work. It's emotionally draining, physically draining, and just plain draining. But I do all this work with a bounce in my step and with a special new kind of love in my heart. I'm joyful and grateful and accepting. I love Dovi so much more, simply for being the vehicle to maximize my potential in life, to bring me closer to HaShem, and to virtually guarantee me a place in the Next World.

If you're the parent of a special needs child, feel the love. Feel how much HaShem loves you. I could not accept these words from anyone else other than someone who is going through it himself, especially someone who went through the Hell of infertility before this. (Talk about the 'taking your package back from the pile of life packages' - when I told Rebbetzin Aviva how much I could relate to their struggle, she said, 'But you have another child!' Oh how true... How often did I lose sight of marvelous Chaim, with all of his issues and difficulties - I do have another child, Boruch HaShem!)

And if you don't have a special needs child but are going through some other difficulty in life, reread and absorb the content of this post. It might just help you get through your challenge.

And if you're life is just perfect and fabulous, good for you :). I fargin you 100%! You might still take inspiration from the speech.

Boy, does life feel good on the other side of Acceptance. I am so grateful to HaShem for helping me reach this place. My heart goes out to the special needs parents who just never get there. Their life is pure misery.

Let's make a toast to the permanent end of the Pity Party. LChaim!

Happy Purim!

9 comments:

  1. So inspiring, you had sent me this speech on mp3 and now I refreshed it again by reading it!! soo soo mechazek and really gives the right peace of mind!! and the koach to continue!

    a freilichen Purim

    Mother of 2.5 year old special needs daughter born after 6 painful infertility years

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  2. yes please email me the speech! Thank you! sortedmegablocks@gmail.com

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  3. I'm so happy to hear that Rabbi Feiner's speech has made a difference in your life. May your new attitude give you renewed energy to care for both your boys and enjoy them even more.

    May Hashem help us all to deal with our nisyonot in the best possible way, while remembering that we are not in control.

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  4. I was at that bris, and I (and all of E"Y) miss the Feiners dreadfully, although they are building olamos in chutz l'aretz - and I'm so glad you got to meet them. Thanks so much for writing this out.

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  5. Wow. What a post. What a paradigm shift. Please email me the speech - byq@juno.com

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  6. Words cannot express my deepest appreciation for sharing all this essential inspiration with us. Please email to me the speech; my email address is tcbae123@gmail.com. Deepest thanks.

    All the best,
    Tsivia

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  7. thank you for sharing this. can you please email me the shuir? thank you! sherrihirsch@gmail.com

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  8. Where can I get the speach from?

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