My New “Normal”

I haven’t been able to write for a while. I’m not sure I could say the reason for my absence has been “writers’ block,” but I could possibly describe it as a “heart block.”

You see, I tripped in my home and broke my ankle in three places. Yes, three. Even the doctor called me an “overachiever.”

I had to undergo surgery, and I still can’t walk, but, G‑d willing, with time and patience (of which I feel like I have neither), I will gain strength.

At the same time, Chaim Boruch got pneumonia for the third time in two and a half months. I knew something was very wrong, as his appetite had declined and he did not look well. We went from doctor to doctor until we finally saw a pulmonary specialist at a world-renowned hospital, University of California San Francisco, about 45 minutes from us.

So, the good news was that we learned what had transpired with his health. The frightening news was that all his food, saliva and seizure medications were going down the wrong tube—straight into his airway and his lungs. His was the worst case they had ever seen.

There was no choice but to schedule surgery for a gastrointestinal feeding tube.

So while I was recovering from my surgery, in extreme pain, I was also at a new heightened level of inner trauma, fear and helplessness, as I wondered how in the world we would manage to take care of our large family when I was no help to anyone, not even myself.

And there I lay, in bed, tears streaming down my cheeks, thinking of what my special little son was to go through. I am not proud to say I was angry, frustrated, hurt and beside myself. I fought every good thought with thoughts of crushing despair and heartache.

Despite the incredible blessing of a feeding tube, with which he could thrive, gain weight, receive all his nutrients and calories as he so badly needed, I just couldn’t accept this new reality, this new page in our story. I couldn’t.

But I did.

I did because I finally surrendered. I finally turned it all over to G‑d. I beseeched Him with heart-wrenching sobs to please bless my Chaim Boruch with a successful surgery and good health.

On the second day of Chanukah, in a wheelchair and, thank G‑d, seven and a half months pregnant, I accompanied my Chaim Boruch into the operating room.

Now, as you know, most hospital policies do not allow parents (let alone highly emotional and hormonal mothers) to accompany their children into the operating room. However, I had mustered the strength to insist that I go with him until he was put to sleep, as I felt I couldn’t send him off alone when he did not know where he was going and why. Thankfully, I was very blessed to be in an incredible hospital that agreed to my request.

My mind flashbacked to his first surgery when he was nine hours old, cradled in my arms, while he drifted off to sleep.

And now, nine years later, I was holding his hand, telling him I loved him while he breathed the anesthetic.

And I felt, not like a human being, but a floating entity of a beating heart and emotions so deep, and tears so salty they burned my eyes.

I was not me, myself or I. I was nothing. Nothing but mother.

Mother of Chaim Boruch Scop.

And I wheeled myself away from my sleeping child.

I left my own heart in that operating room. I left my entire being beside my son’s.

And all that remained were silent sobs and the prayers on my lips.

I waited for what felt like an entire lifetime to see the surgeon, who gave us the news that all went well and we could go to post-op to see Chaim Boruch while he woke up from the anesthetic.

Baruch Hashem. Thank G‑d.

This is what we as Jews do. We surrender and we thank G‑d for the miracles of life and living and all the goodness He bestows on us.

And there, as my son lay with oxygen over his nose and mouth, I found myself shaking. I too seemed to have a hard time breathing, and I took his little hand in mine.

I was a broken mother. I did not fight my feelings, nor did I hold back the tears.

The tears of gratitude and pain, all mixed together in a concoction of life’s challenges.

And now, a new day has begun. I call it a “new normal,” while not feeling any normalcy in my life at all, but clinging to the hope that my vision shall soon clear.

For, on some days, I wonder if, indeed, there is still a tiny piece of my heart in that operating room.

I am unsure if I have truly moved on and turned my own page in my new story.

Only time will tell and only time will heal, as it surely does.

But in the meantime, I will continue to whisper the secrets of my heart into Chaim Boruch’s ears. For they are safe with him, a pure, special soul who holds my hand, saying “I love you” with eyes that speak volumes and a heart that understands deep love.

And with a prayer on my lips, I ask G‑d to continue to hold my hand and give me the strength to retrieve that little piece of my heart.

The little piece that is still missing.

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6 comments

  1. You are an inspiration. Your writing is so real. Totally moved.

    1. thank you Leah:)

  2. dear chana scop,
    here are some comments. i hope they help.
    as someone who has taken care of (geriatric) patients with feeding tubes, i have seen people gain weight due to the carbs and nutrients they are getting in their formula. as a jewish mother, to see a thin boy put on some weight, i feel will give you hope and encouragement that he is getting what needs for right now.
    children who are on tube feeding from birth find it very hard to eat food when medical people give the ok to introduce foods. they never developed the mouth skills and pleasure that a baby has from birth. since your chaim boruch already has these skills and pleasures, he will know what to do when food is reintroduced.
    i am confident that very soon, G-d willing, his lungs will clear and he will be on a feeding therapy program, enjoying his mom’s amazing challah through taste and smell.
    Hashem should continue to give you hazlachah, brachot, good health and yiddishe nachas.

    1. thank you so much for sharing your thoughts! G-d willing, very soon, he will eat normally again:)
      all the best, Chana

  3. Laura Rosen Cohen · · Reply

    Hi, beautiful writing, beautiful little boy. I am a fellow Jewish special needs mom and my son also has a g-tube. If you would like to connect about any of this GI, g-tube stuff, my details are below. Refuah Shlemah and Bsarot Tovot.

    1. Thank you so very much! I really appreciate the offer! Looking forward to being in touch!

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