A Letter from My Mother on the Anniversary of My ALS Diagnosis

I screamed when I heard that my 28 year old daughter was diagnosed with ALS. Looking back, I knew something was very wrong when she dragged her leg as we walked through the parking lot of her apartment complex. A mother always knows, right? But I never guessed this.

The night that the phone call came there was no sleeping. The tears would not stop. The next morning, family was notified via texts, phone calls, emails. In between, was research and more tears. I immediately ordered books on ALS. What is this monster of a disease that has no cure? Can this be real? Surely there was a mistake in the diagnosis. Not my baby, not my daughter.

Rachel is 34 years old now. She is married to Evan, a kind, loving, supportive man who has stayed by her side and is truly the best caregiver. They have 2 dogs, Malka and Pickle. Rachel has always maintained that if she has her books, dogs and husband she will be okay. Rachel was an English teacher and loved her job and students. She had to quit her job after just 3 years as a teacher because of ALS. She and her husband have been robbed of starting a family and of growing old together. She is going in to her 6th year with this disease when the average life expectancy is 2-5 years. She survives on a ventilator now.

Now, all these years later, I don’t know if prayer works or if there is a God. After Rachel’s diagnosis, I strongly believed there would be a cure in her lifetime. Once, a priest said to pray the problem, not the answer. I tried that. Nothing. Then I decided I would pray for what I wanted, for what is needed. Nothing. Six years later I am not so sure about prayer, but I live with hope.

*I can’t post comments or reply to them, but I can read them and I love them. For this post, I will be sure to share them all with my mom.

If you have fond memories of Rachel as a teacher in her life before ALS, or if a post on this blog has ever moved you, please consider making a tax-deductible contribution to Rachel’s care through the new nonprofit, Rachel Doboga Campaign at https://helphopelive.org/campaign/16990/

One thought on “A Letter from My Mother on the Anniversary of My ALS Diagnosis

  1. Josie says:

    Mom and Rachel— I just want to say that my heart is with the both of you. You have demonstrated the strongest version of love that some families could only dream of. I can’t take the pain away with my words but please do understand that your dynamic of loving support inspires me to be a better person. The energy I feel through these posts reminds me to appreciate the little things every single day. Your strength will forever inspire and shine light on the darkness in such an uncertain world. Rachel, you are a soldier and your beautiful mind and strength will always be looked up to. Wishing for a miracle. Sending your family soooo much love. Xo- Josie Hamilton

    (I took care of my grandma throughout her ALS journey and understand first hand how strong you have all been.) Keep focus on the beautiful love you share together. Beautiful family of soldiers you are.

    Like

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