Both of my sons have chronic conditions.
They have physical illnesses (Sjogrens/Lupus and Eosinophilic Gastritis). They have mental illnesses as well (Early Onset Bipolar Disorder and Anxiety Disorder).
The thing about chronic illness is that it is, well, chronic.
None of these ever really go away.
We have seasons of remission, stability and great joy. We have seasons of all out chaos, immense pain and hospitalizations.
In most seasons, we are somewhere in the middle.
Over the past few weeks, after a period of wonderful days and almost no issues, it has become clear that we are right back in the middle of the chronic illness continuum.
The Impact Of Chronic Childhood Conditions
Not urgent but also not well, is where we spend about 80% of our lives. In addition to the daily demands of careful food preparation, medication management, therapeutic interventions and educational supports, there is a very real constancy to waiting for things to improve. There is also a just as real constancy to waiting for things to deteriorate.
Sometimes the perceived threat is worse than the actual illness.
A Mom’s Perspective
It’s been almost seven years since my oldest son was first diagnosed with a chronic condition and almost four since his brother joined the club. As time goes on, there are a few things I am certain are part of all of our experiences in managing and coping in the midst of childhood chronic illness. If you are walking this tightrope, I first want to encourage you that you are not alone.
We don’t talk enough about this reality, and yet many of us are living it every single day. With that in mind, I want to share what I have learned so far about living and helping our children with chronic illness.
1. It Gets Worse
As I wrote above, chronic illnesses are chronic. It sounds simplistic and maybe even a little obtuse, but please allow me to explain.
The National Center For Biotechnology defines “chronic health conditions in a child or adolescent as ‘any physical, emotional, or mental condition that prevents him or her from attending school regularly, doing regular school work, or doing usual childhood activities or that requires frequent attention or treatment from a doctor or other health professional, regular use of any medication, or use of special equipment.’ In general, chronic illnesses are characterized by at least three important features—they are prolonged in their duration, they do not resolve spontaneously, and they are rarely cured completely.”
This means that even in periods of remission and stability – even when it feels like you have your little boy back for the first time in three years – even when the scan shows that his liver tumor has not progressed – the illness has never gone away. It will, more likely than not, run its course again and again.
For some conditions, this means the illness itself will also get worse over time.
There is a fine line between hope and denial. The truth is, it has been good for me to remind myself that it will get worse sometimes and that, by the grace of God, we will handle whatever happens. It’s much better to live with this truth than to experience the extreme lows that denial (read: he’s so much better – maybe they just messed up and misdiagnosed him) almost always brings.
2. It Gets Better
Just as we can count on chronic conditions worsening, the good news is that we can also count on them getting better. In periods of health and stability, we can really, truly enjoy our lives. We understand the value of an ordinary day, with ordinary errands and meals in ways that many cannot.
My children also never, ever take their health for granted. When they are feeling better, they want to get out, explore, be with friends and move their bodies. They know it may not last and they seek to soak up every last bit of it.
Chronic conditions bring out the worst in our families sometimes. They also can bring out the very best.
3. Look For The Patterns
The only way I know to ride this roller coaster is to begin to anticipate all the drops and turns. For example, after three years, it is clear that my youngest son has a seasonality to his mood disorder that means a very difficult October and November for our family. Likewise, my oldest tends to need a lot more rest when the days become warmer in late Spring. These patterns are predictable and allow me to plan accordingly.
Knowing the pattern means my youngest does minimal school in the late Fall and I blog a lot less. He also has incredible educational growth each summer and I find time to write more in July. My oldest is exactly the opposite, and so we accommodate him in ways that challenge him in the Fall and allow him to rest come May.
These patterns are the only sense of normalcy we know and can count on. They allow us to plan trips and activities. My husband and I have grace for one another in the times that are most challenging, and try to get more time together in the time-frames that are easier. These chronic patterns have become family routines and rituals that sustain us, even in the toughest of times.
4. Take Care Of You
Oh my goodness, this one is so, so hard. I promise, I will not say anything platitudinous about self-care. What I will share is that with each passing season, I am learning to accommodate my own needs in the midst of caring for my sons. Sometimes, this means sleeping in and not posting the Friday Activity I had planned (hello last two weeks!). Other days, it means laying on the couch with my youngest and watching America’s Got Talent Clips on You Tube at 3 PM. Either way, I try to consider my needs and have some grace for myself in the midst of so much turmoil.
I have learned that taking care of my boys’ full-time caregiver (me) is part of my boys’ treatment and recovery plans. When I am able to catch my breath a bit, I am much better at anticipating and providing what they need.
This is a marathon life – there is no way around it. I won’t sugar coat the realities of living with our children’s chronic and often devastating conditions.
But even in the midst of all the difficulties, I am certain that it is the most important job I will ever do.
I pray I do it well.