If you want to see a mother fight fiercely for her children’s needs, just take a look at my older sister – whoa. She is the ultimate advocate for her kids. I’ll take a small amount of credit for providing early training ground. Family legend has it I refused to talk to anyone else but her and I would whisper in her ear something only she could interpret. She would then spring into action, ordering people around and telling them what I needed. Bossy Pants. But it served her well, because when it comes to her four children and their needs …whatever the issue, just step aside. She reads, she researches, she consults with every expert and looks under every rock to see where she can gather more information. And when she formulates her opinion as to how each need should be addressed, she works with clarity and does not waver. Bossy pants in full effect.  (Just to be clear, my brother-in-law certainly plays a role as well…I got you J.)

From the moment Amichai was born, and even more so since the moment he was diagnosed, I tried to take a page out of her book. I read, I researched, I consulted with experts, and I looked under every rock to see if there was more information to be gathered. I wanted to be on top of the latest treatments and therapies. No doubt, this was an important step – one that I continue today, but in my initial haste – I skipped over the most obvious place to start: Amichai. Before diving into the studies, I had to first study my kid. I had to understand what his needs are not only from a CP perspective – but simply what his needs are as Amichai.  And when I got to know Amichai, when I got to get him – I had a deeper comprehension of how I needed to advocate for him.

I thought the focus of my advocacy for Amichai would be relegated primarily to dealing with his CP. That’s mostly accurate. I’ve always looked at Amichai’s work with his therapists as a partnership of three. I try to provide them with insight into his personality – what motivates him, what bothers him, what excites him, what challenges him…I also do not hesitate to give my opinion about what methods work best on Amichai. In my experience, any good therapist will welcome this information. Parents know their child best, and so as much as I rely on them, they also rely on me to ensure the most success. We evaluate and modify together.

And the truth is, I feel confidant advocating for Amichai in this realm. I come from a world where I understand how the body works. My own professional works requires that I sometimes work closely with PTs to better help my clients. I understand what effective training is and I understand the ins and outs of all the exercises Amichai needs to perform. I understand how and why his hips need to be supported when he climbs up a ladder and why it is important to rotate his forearm out (supination) when stretching. I speak the same language. I get it, and I think – without getting too philosophical – it is perhaps one of the reasons Amichai was given to me. From this vantage point, I was meant to be his advocate.

The thing is, Amichai has other needs…needs that don’t always fall neatly into my comfort zone. Most pressing on my mind these days is helping him develop coping mechanisms that a child of divorce will inevitably require. Even in the most amicable situation, I imagine children will still experience the stress and tension that comes with their parents splitting up. And right now, Amichai is noticing that and experiencing that. He needs to develop his own methods of management.

I wish he didn’t have to do this. I didn’t want this for him… but the alternative of staying…I didn’t want that for him either. Maybe leaving was my greatest act of advocacy. I keep those thoughts in the back of my mind now as the suggestions mount on how to tackle this issue. There have been ideas put forth by Amichai’s school. I am grateful for their help and attention, but even by their own admission they seem unsure of how to proceed, what path to take – how involved should they even be? They need to maintain a delicate balance of providing care for Amichai but also not bringing matters outside the school into the school. I have nothing but high praise for them and the dedication they display toward Amichai every day – but perhaps this is not the venue to address this specific issue. These are all topics of recent discussions and ongoing meetings.

What I am certain of is my role in all of this. Over the past few weeks, I’ve had various conversations with staff members at Amichai’s school. I surprise myself with the level of straightforwardness with which I speak. I consider myself assertive, but not pushy. I am a confident person, but never cocky. I have a voice – yet, I don’t need to be the loudest in the room nor do I care to be. But with Amichai – and specifically on such an important issue where we are talking about the emotional welfare of my child – I’m leading, and I make no apologies. I’ve realized that my comfort zone is Amichai. Whatever the subject matter, I feel confident in my ability to make the best decisions for him. No doubt, it’s a heavy responsibility, but I wouldn’t want it any other way… because I know him, I understand him, I get him. I was meant to be his advocate.

She fought hard when the cancer came – not that anyone expected anything differently. She even beat it twice, but the third time was too much. She was in her eighties when she passed away. Her death left me immensely sad and broken for a long time. I miss her deeply every day – but I also know it was not tragic. She lived a long life. And even as the emptiness came over me when I learned that she had gone – realizing that now I would have to live in a world without her, I knew I was lucky because my memories are vast and never ending. My life will always remain intimately interwoven with hers.

Strength is a profound gift in life. My Mom-Mom had it. Physically, she was imposing – larger than life. Even as she aged, she still towered over me. She wore big gold rings on her fingers and Oprah style diamonds. As kids and even still as adults, my sisters and I used to try on her jewelry…but we could never pull it off. The rings were oversized, the diamonds too heavy on our ears. Only Mom-Mom could really carry the bling.  Mom-Mom was vibrant, she was youthful, she was a leader, she was extremely loving, and she was never afraid to tell you like it is. And Mom-Mom was a rock. The trials and tribulations would come. Mom-Mom just took it – never complaining, never faltering.

There is no doubt that my grandmother got her strength from her own mother – her name was Sarah (that is my middle name and I carry with pride). In our family though, she is simply known as Bubby. A picture of Bubby used to hang in my grandparents’ house and it now sits on the shelf in my parents living room. Bubby is sitting tall and straight, staring the camera down, no smile – as if to say – try me. It is the pose of a defiant woman. A woman whose husband deserted her and her three small kids in the 1930s. A woman who would go hungry for days but always make sure there was food on the table for her children. A woman who worked in a sweat shop sewing buttons on hats, and when the conditions in that sweat shop became unbearable, she worked to organize one of the first women’s union in the Philadelphia area. She was a woman who probably couldn’t afford gold or diamonds, but just as well because she had no use for them.  Stand tall, stand firm, do not give an inch.

When my Mom-Mom passed away, Amichai was just about a year old and I was still struggling in my marriage. She knew it too – not because I told her but because she knew me, and she saw that I was gone. I was in the states about 3 weeks before she passed away, and one of the last things she told me in person, her finger pointed squarely in my face, was – We support you. But I felt more than anything that I was letting her down, that I was letting Bubby down. I was marring their legacy. It was as if I heard Bubby screaming at me – you are wasting your namesake! Get up and stand tall! I couldn’t bare to even glance at that picture of her anymore – it was like she was looking right through me, shaking her head in disgust. And now, I would have to contend with both women screaming at me from above…

But I knew they weren’t really mad or disappointed – more than anything, they were just hurting for me, knowing that as much as they wanted, they couldn’t solve this one. Not them, not my parents, not my sisters, not my friends. Just me. I imagine one of the most frustrating parts of parenthood is seeing your child hurt and knowing you can’t fix it. I’m still at the stage with Amichai where he looks to me to restore the chaos…but the day will come where all I can offer is my support and love and watch him solve the problem. And the truth is, that’s what being an adult is all about. Hopefully parents and mentors have imparted their children with the proper tools and examples, but its all you. You have to figure it out, you have to deal with it on your own time and on your own terms. (A very good friend told me bluntly – we let you make your own decisions before, I’m not letting this go on anymore. I love her for the friend she is and the brutal honesty she brought, but I had to take ownership of this myself…which she knew, kinda…)

I did indeed deal with it on my own time and my own terms. It was a process, but if there was one moment that triggered all of it, when I knew I had to make changes, it was when I was putting Amichai to bed one night. I looked at him and I thought, if I stay – he will never know me. All he will know is this shadow that I barely recognized. That shook me to my core. He didn’t deserve that. I didn’t deserve that. It clicked, and just like that I reclaimed my strength. It still took time, but once I realized that my strength will not be distinguished or diminished – that it was inside of me and it could not be taken, I was able to move forward. I worked with experienced counselors to help map out the road I would travel. I had the tremendous support and love from family and friends. And when the day came for me to say that I was leaving, that this simply could not go on – as scary and difficult as that was – it was also a shining moment. I stood tall, I stood firm and I did not falter.

Strength is a profound gift in life. And I am certain that two tough ladies are resting a little easier…