Exchanging Glances With God: Yom Kippur And Special Needs Parenting

I always appreciated Yom Kippur. I consider myself lucky that fasting does not bother me, but beyond that – the idea of taking a day to reflect, to admit mistakes, to commit to doing better, to focus your prayers and energies on the things that really matter – I think no matter where a person is religiously, it is always good to have one day to just take stock.

I wouldn’t describe myself as particularly spiritual, but there is something elevating about the day…at least that’s what we strive for. In Israel, the tone is set immediately as the sun sets. There are no cars on the road, and a thick calming silence takes over. Some people dress in white, and for a population that is generally restless to say the least, most people are serene. My practice would always be to wake up early and head to shul. I would spend the whole day there – no break. I deserve no special praise for this – people connect in all different ways – I simply found solace in the cocoon of prayer which ran through me and surrounded me. I always managed to feel that Yom Kippur was a different day – for whatever that may be worth.

And then I had Amichai.

I haven’t been to shul for five years on Yom Kippur – or really much shul at all unless you count tefilat yeladim. Yom Kippur has become a day of about a million walks to the park, interspersed with playing games, preparing food, reading books and bribery through treats. Any davening that takes place is rushed and with very little concentration. I know I’m not different than any other parent of small children. My friends and I make pacts and plan to help each other out. I remember one year my neighbor – a mother of four herself, poignantly wished us both luck as Amichai and I walked out of our building Yom Kippur night. I was attempting to go to Kol Nidrei – we made it as far as the swings. I once watched a father at a jungle gym take three steps back and then three forward, make his way through the entire shemonah esrei – all the while keeping an eye on his three-year-old. Whatever it takes.

I thought I would feel guilty about not being in shul. I don’t. I’m a parent of a five-year-old – what else am I supposed to do? As Amichai gets older, I am sure I will make my return but still, what I do miss is not having the proper time to reflect, to contemplate, to fully put my appeals and pleas before Gd. I believe any parent defines so many of these appeals and pleas, these hopes and aspirations first and foremost through their children. As a parent of a special needs child, I don’t feel I pray any harder than parents who have “normal” children. I also can’t imagine that Gd pays more attention to my requests over others. That certainly does not make sense. Yet, the biggest lesson I learned when Amichai was diagnosed with cerebral palsy – its not my plan. There are moments in life when we briefly internalize this idea, but I am reminded of it every single day – and I am thankful for that. The plan is greater and more far reaching than I could have ever constructed, but because I am fully aware that its not mine – I have a heightened sense of dependency on the Creator of that plan.

There is an expanse extending into infinity with all the things I want for Amichai. They may be the same as any other parent, but I define them differently within the context of his specific life and the challenges he faces. There are layers and layers to each want and need. Cerebral Palsy has paved different path forward for Amichai. Progress can be hard to predict, and it doesn’t always happen the way I want it to or at the speed I had hoped for – even when the work is being put in. There are so many factors that can affect forward motion that are beyond my control or Amichai’s control. The peaks in progress are uplifting but the plateaus can be aggravating. Negative thoughts can creep in – what if he won’t get there. I push those thoughts out. I know he will get there. But, for that to happen – my personal beliefs turn me towards Gd, imploring Him to lead the way in this plan that he chose for me, for Amichai. Yet – even with that faith, and even if I was in shul, how do I even begin to articulate the thoughts swirling around in my head? Are there enough words?

Or maybe words don’t do my thoughts and prayers justice at all. My heart is overflowing with emotions I could not even begin to describe. But then I see Amichai. It could be that everything I want and need to express is all wrapped into one little person with skinny legs and eyes larger than life. He’s it. Everything I can convey – every wish, possibility, request, or plea – they are all contained in him. My most powerful prayer will always be the same. Amichai. I can look at Amichai with all the sentiments that fill my heart but which I cannot accurately express, all the urgency I feel that must go into each appeal – and send that gaze upwards, confidant it will be interpreted with its true intent.

But still I wonder – is it enough. I don’t have the answer to that, but there might be an indication that specifically during this time of year, a gaze holds water. In the last mishna of Yoma, Rabbi Akiva famously celebrates the idea that Am Yisrael should be happy because they are standing and being purified before Our Father in the heavens. We are taught that on Yom Kippur we are not standing in judgement before the King of the Universe, but rather our Father, our parent. The imagery of a parent is paramount. Just as parents show love and mercy, so too does Gd. A child can anger a parent, a child can disappoint a parent – but with just one look (and at least a semi-heartfelt ‘I’m sorry’) – all is wiped clean. We pray for that forgiveness. But maybe more than that, when a parent gazes down at a child – the potential, the aspiration, the promise, the dream – all of it is seen. And the parent wants more than anything for that child to succeed. It takes just one look, and the parent will move mountains. I think we pray for that too.

I’ll take comfort in this thought on Yom Kippur when my al chaits are hurried and unfocused. When I’m bribing Amichai with gummy worms and lollipops. When I’m at the park – standing outside in the heat, dehydrated and maybe a bit light headed, lifting him up to the monkey bars for the umpteenth time. When all I can really do is exchange glances with Gd.

Originally from Philadelphia, Elissa Sagoskin now lives in Jerusalem, Israel. An accomplished athlete and health nut, Elissa works as personal fittness trainer and coach, but her hardest and most satisfying work is that of a mom to her son – Amichai. As Amichai meets the daily challenges of CP, Elissa has redefined for herself what constitutes as a disability and strives to change common misconcpetions in her community. She hopes others will continue to embrace difference and create an envrionment of inclusivity. Elissa writes about her journey with Amichai at www.changeperceptions.net.