Jenette Clay | It’s not a sprint, it’s a marathon: Dealing with chronic childhood illness.

Jenette Clay | It’s not a sprint, it’s a marathon: Dealing with chronic childhood illness.

2017-08-18T13:19:37+00:00 August 10th, 2016|Guest Bloggers|

I was a shell of my former, confident self.

That winter, three of my children exhibited symptoms that I now know are related to Lyme Disease. Prior to that winter, most of my experience as a mom had been with healthy, robust and happy children.

Lyme disease is caused by a bacteria of the Borrelia genus.

The symptoms range from pain and lethargy to joint swelling and recurrent fevers, as well as a range of neurological problems and depression. By the time my children were diagnosed, their Lyme was chronic, meaning the bacteria had moved from their bloodstream to find lodging in other parts of their bodies. Chronic Lyme, is notoriously hard to dislodge once it has a chance to take hold.

In the midst of our struggle to diagnose our children’s pain and neurological symptoms, my father-in-law died suddenly, and my friend lost her four year old daughter to cancer. She was just six months older than my youngest.

I can still see her daughter Chloe, giggling in a tire swing with my three year old, blond curls flying out behind her, just weeks before her cancer diagnosis.

Within three months she had died.

That whole year, I had a hard time enjoying my beautiful little girl without mourning for my friend who loved (still loves) her little girl as much as I love mine. Often, when I held my three year old, I felt like crying.

No matter where I laid my eyes I thought of sickness or death.

I wrote this poem in the middle of that year wanting to have my family and friends understand the depths of my depression and anguish.

psalms

Photo Credit

My Psalm (of Sorts)

O Lord, my Spirit cries out to you,

My body is a mausoleum for a dead soul,

My home a mausoleum for hope long passed.

Yet I know you are mighty to save,

compassionate and great in kindness to all who place their hope in You.

I look at my sweet baby, trembling at what may lie ahead for her.

Will she grow to be a young woman, then suddenly be struck with sickness like her sister?

A dog hurt many times,

Recoils at a hand reached out in kindness,

So my heart recoils from beauty and hope.

So helpless are we.

Frail

Dust

Perplexed; no “Captains of our fate.”

O Lord save me from myself and my fears.

Refresh me for the sake of my family, and for Your name sake, may I not bring shame to Your name. Let faith, hope love and peace overflow into our lives and from your Spirit.

There were days I prayed for my children to be healed, tears streaming down my face, hiding in the pantry so that my kids wouldn’t see me crying. I researched hours, everyday, desperate to figure out what was wrong with my kids. Other parent’s stories of seeking a diagnosis for their children haunted me.  

One good friend reminded me that I needed to be a warrior for my child. I was angry at her for putting that on me because I felt so scared and frail. She was right, but all the research and effort were too much and too intense. I was burning out.

Someone else encouraged me by saying, “This is not a sprint, it’s a marathon!”

That made me angry as well. Who wants to be told that their struggle is a marathon? We all want to power through our struggles in a glorious burst! Who wants the long hard slog of a marathon when you are dealing with sickness and pain?

So I continued my frantic research, as I cried, and prayed more.

We took our children to doctors and specialists, and others prayed and cried with us as we hit brick walls in our search for answers and my daughters suffered from the pain of Lyme in their joints, their backs and their heads. It was so hard to express to family and friends what we were going through because they had never been through anything like that before. Neither had we.

And I prayed.

At some point my husband and I realized it was a marathon and not a sprint.

We held hands and talked about living in the moment with our kids through sickness. We discussed ways we could enjoy life together, now, not looking to the future for our lives to somehow restart again after everyone was well.

I also limited my research about my children’s sickness to fifteen minutes a day, and spent more time sitting with them and enjoying them..

I opened a Pinterest account just to Pin pictures that were beautiful, no information about sickness, only beauty and things that made me smile.

I appreciated them as they were, even as I prayed for them and cared for them. I wasn’t trying to cure them all of the time. They stopped being my projects and returned to being my children.

It’s not a desperate sprint to get them well anymore, it’s a steady marathon of fellowship with them in the midst of our suffering and our joy and healing – however long it takes.

And what of all those prayers?

It’s part of my faith to believe that not only is God fully aware of our situation, but that he mourns with those who mourn. If God is aware of our situation and is able to change it, then He must not be rattled by it. And I don’t need to be rattled by it. I choose to trust Him in the midst of this marathon:

 And we know that for those who love God all things work together for good, for those who are called according to his purpose. (Romans 8:26-28 ESV)

How have I seen God working good in our lives? This is the fruit of what we’ve gone through:

  • Less judgement and more compassion toward people with chronic pain and mental illness.
  • A sure sense of the mercy of God when life is easy and when it seems unbearable.
  • A stronger faith and resilience through very difficult times.
  • An appreciation for the mysterious complexity of our bodies.
  • An understanding of, “Who of you by worrying can add a single day to your life?..,” Luke 12:25

Ways I’ve changed:

  • I’m grateful to be able to feel thankful.
  • I’m more patient. Losing my temper and being sarcastic isn’t worth the stress it causes others.
  • I’ve become a freelance writer to help pay for medical expenses. I’m good at it and I enjoy it.
  • I listen more respectfully to my older children and leave room for disagreement in our relationship.
  • I’ve examined what God’s promises are, and realize health and wealth in this life aren’t guaranteed in the Bible, but God’s grace is.
  • I understand that some of God’s promises are reserved for the time when this life is over, and that requires faith.

James, in the Bible, says to the church in Jerusalem, “ Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing.”

One day in 2013, I don’t remember when, I added this line to My Psalm (of Sorts),

You have transformed this mausoleum into a house of praise and thanksgiving. Your peace guards our hearts and minds through Christ.

We have been disrupted but not forsaken. That is everything to me.

It give me the courage to run this marathon well. It gives me the hope to encourage my children to dream in the midst of this illness – to put wings to their dreams through prayer, strategy and perseverance.

This is not a sprint, it’s a marathon and, by God’s grace, we will run it well.

If you have further questions about Lyme Disease, Lymedisease.Org is an excellent source for more information. Also, consider watching this documentary series called Under Our Skin.


Jenette Clay is a freelance writer of podcast show notes and blog posts – improving the online presence of small businesses through written web content. Grateful wife of one and mom to many. You may connect with her on LinkedIn, on Twitter or on her website MyWordsforhire .

 

  • paulakiger

    It’s difficult to narrow down how to comment because you touched on so much. Having friends dealing with chronic illnesses, I think that spoke to me the most strongly. Wishing your children a thorough recovery.

  • Thank you Paula. That means so much to me.

  • Rosalidia Ramos

    Great post! Thank you for sharing!!! 🙂