Acknowledging the Loss From Chronic Illness Helped Us Emotionally Heal

Acknowledging the Loss From Chronic Illness Helped Us Emotionally Heal
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I consider myself a pretty resilient person. My husband is in the U.S. Navy, and I can accommodate most situations. 

For example, we have moved 10 times, three of them internationally. I have raised our kids without my husband during five deployments. We have grown our family despite multiple setbacks, including navigating a complex international adoption process. We traveled across the world to get our daughter, and then spent weeks in China to bring her home. 

None of this compares to the stress of getting to the bottom of our daughter’s illness.

***

The Florida sun was suffocating as I walked what seemed like miles from the parking garage to the hospital. The previous night, I had driven five hours to the hospital with our 14-year-old daughter, Grace. We stayed at a nearby Ronald McDonald house. 

It was our fourth trip in two months to see her specialists for more testing and hopefully a diagnosis. By that point, we were exhausted. 

My blood pressure started to rise as I realized the walk from the parking garage to the hospital was too far for Grace to manage, due to her worsening Lambert-Eaton symptoms. I tried to drop her off at the hospital’s lobby, but staff said that because she’s a minor, I wasn’t allowed to leave her there alone. 

My anxiety bubbled over as I pushed her wheelchair up a long ramp, my arms loaded down with book bags and lunch. Everything seemed so hard, and I felt alone. 

We finally reached the hospital’s check-in desk, where the bubbly assistant, while signing us in, cheerfully asked, “What are you doing this summer?” 

I wanted to scream: “This! This is what we are doing! We are trying to find out why my daughter can no longer walk, eat, or climb steps. What else would we be doing this summer?!” 

I didn’t say that, of course. Instead, I slunk away from the counter feeling like a failure for being unable to maintain some semblance of normalcy. A family vacation was just one more thing I should have made happen but didn’t.

***

By that point, every bit of added stress was like an enormous boulder rolling toward me at breakneck speed. I was simply ready to burst. 

That day, I realized I was grieving the life we previously had, and how it had changed with the onset of Grace’s symptoms. 

I needed to acknowledge those feelings and grieve what we once had before I could accept our new normal. We were rising to the challenges placed before us, but not without grieving the loss. 

Previously, I didn’t have a care in the world regarding my children’s health, beyond managing the flu or the common cold. Now, I had become overwrought with worry and concern. 

Taking care of a child with a chronic illness takes some adjusting. Things we took for granted before, like running into the grocery store, dropping our kids off at school, or popping down to Disney for a day, now required careful planning and consideration. 

Thankfully, I was surrounded by family and friends who showered us with support. Having my “anchor people,” those nearest and dearest to my heart, encouraged and strengthened me.  

Time certainly lends perspective. In time, Grace received a diagnosis, and that led to a treatment plan. With time came healing, a restoration of activities, and better mobility. 

Time doesn’t heal all wounds, of course, but it did create for us a new normal that is sustainable, healthy, and full of life-giving potential. 

***

Note: Lambert-Eaton News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lambert-Eaton News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenia.

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6 comments

  1. Mary J Moen says:

    Oh how I related yo your experience. The biggest loss for me was loosing the old Mary who could run from the car to the store with no thought. Now I struggle lifting my legs. I’m getting closer to accepting the loss but it took alot of tears. God bless your family and the challenges you face maintaining strength on a daily battle.

    • Lori Dunham says:

      Yes!!!! I understand the loss of what seems like little things (running into the grocery store) but really they are big losses. Know you are not alone in those losses. We recognize them in each other and grieve with you! God bless you too!!!! Thank you for the encouragement.

  2. Joyce Crawford says:

    Thank you for being so open with your emotions and sharing your loss of those everyday normal dreams and routines that we have all had to give up. It made me realize how much that I had tried to ignore that loss in my life. I still hold out hope that one day my treatment will give me somewhat of a normal life again. I have recently changed to a new neurologist, so hopefully it’s a step in the right direction. Again, thanks for your post.

    • Lori Dunham says:

      Joyce, I hope your new neurologist can help guide you in the right direction and you can gain back some of what you have lost to LEMS.You are not alone in your grieving!

  3. Gisel says:

    My daughter Kamila soon to be 9 years old was diagnosed with LEMS September 2020. It has been an exausting journey,stressful,depressive, and soo overwhelming. I still think in my mind and heart that this illness will someday vanish from my girls body. I’m always praying there will be a breakthrough with CRISPR and it will help people with autoimmune diseases. I have heard some good things about CRISPR. I hope there is something out there in the works that will help those with LEMS.

    • Lori Dunham says:

      I pray the same thing for my daughter. It is so overwhelming to watch your child go through what LEMS does to the body. I pray that our girls will see a breakthrough in their lifetime. I understand and can relate to all the emotions you mentioned.

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