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Giving your chronically ill child a VOICE

Each day, my son never knows how he is going to feel when he wakes up.


He never knows if his stomach will be in great discomfort, slow and sluggish from not efficiently processing food from the day before (no matter how careful we are in giving him easy to break down food). He never knows just how dizzy or how much brain fog he will experience when he opens his eyes because his autonomic nervous system hasn’t reset properly for the new day. He doesn’t know if he will be depleted of energy from the start or have some to expend.


Again, no day is predictable.


I find it is extremely important to let my son voice his feelings about being chronically ill and encourage him to be transparent with how he feels. He likes to start each day by giving me a “reading” on how he is feeling. Along with the physical symptoms, he often lets me know his level of frustration as well. It is important to me that my son has a safe outlet to let me know how he is feeling on any particular day… including his concerns for the future and any other bottled up emotions.


We have always been very open in my family and I encourage 1) sharing of feelings and 2) interactive discussion. I truly understand and get that talking it out is a very important and a crucial part of him coping with this unasked for and unwelcome chronic illness.


Begrudgingly, I find there are days where I just don’t want to discuss how he is feeling or doing. I cringe at the thought of him feeling badly just again. Often, I feel too weighed down by his pain and frustration. The fact is that, I usually know how he is doing on any given day…… just by looking at his eyes and expression and hearing the tone of his voice. Intuitively, I already know!


So the question becomes: How much daily discussion about chronic illness is healthy for me? How much is healthy for him?


After all, I love him so very much. When he’s in discomfort, I feel it. When he’s sad or disappointed, I feel it. So, am I being a bad parent if I don’t want to hear the news [yet again] about a bad day? This creates a terrible dilemma in my mind. But the issue is real. How do I maintain my own well being and still be there for my child?


There is no easy answer and it can vary from day to day. I try to find a healthy balance for both my child and myself. Some days I just have to be blunt, telling my son, “This is what life has dealt you....We are going to make the best of it….You are going to make the best of it….End of discussion for today.”

Wonderful therapists who understand chronic illness have been a tremendous help and much needed support for both myself and my son. However, there are still days when listening to him vent becomes too much for me, and I’ve learned that “it’s normal and okay” to express that out loud.


So, what have I learned to do when it becomes too much for me? I do what I always do and turn it into a “teaching moment!” In fact, my kids joke that not everything has to be a teaching moment. Not sure if I agree. What do you think?


A reminder that this particular teaching moment is important for anyone…


No matter what is happening in life, everyone, including myself and my son, has to take some responsibility for his or her own happiness.


My son is in charge of making himself smile and only he is the one who can decide to smile. He has to learn that he must be the one (even on bad days) to select activities and make choices that bring him small "bite-size moments" of happiness and joy. Whether it’s a short walk, listening to music, calling a friend or having a cup of hot chocolate, he needs to figure out what helps and works for him.


Frequently, when he is filling me in on a new day, I immediately turn to him and ask, “What small thing(s) are you going to do today to bring joy to your own day?” I won’t leave him alone until I have a sufficient answer. He has gotten used to my asking, so he is starting to think about that first before venting to me. It has been a remarkable change and I am proud of him for it!


Just like you would teach any child that they are responsible for their own happiness, the same applies to a chronically ill child – and the parent as well. What small thing can you do to make yourself smile today, if even for a moment? For me, it’s taking a few minutes to enjoy a warm cup of coffee while contemplating how I am going to be “brewing more hope.”


#parenting

#chronicillness

#bitesizemoments

#takeabreak

#enough



Disclaimer

I am not a doctor or therapist. I am not dispensing advice, but simply giving food for thought, discussing my personal experience in relation to parenting a child with chronic illness and the impact it has had on my family. I am not recommending any particular way of parenting; just sharing my experiences. Please consult your physician or personal therapist for issues you are concerned about.

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