It is no surprise to me that my son who is now approaching 15, over the past few months, has been resisting his medications, treatments and physiotherapy that keep him well and maintain his baseline health for Cystic Fibrosis.
What is surprising is that it has taken until nearly 15 years of age for him to do it. I figure that some of the social delays he has, have contributed to this. But he is most certainly in his teens, physically and mentally. He is incredibly strong willed and stubborn. When he has made up his mind about something, there is not a whole lot you can do to change his perspective.
When my boys were young and as I was bringing them up, I tried hard to teach them to listen to what their body was telling them and to adjust their behaviour accordingly. Sore tummies or headaches, and anything in between, always followed with a discussion about what led up to the event or the symptom. Trying to identify the trigger.
What I was trying to do was gift them self-awareness. I knew from being a teen myself and reading literature about teens with Cystic Fibrosis (and chronic illness in general) that the teen years were going to be tough. Especially for Matthew dealing with CF.
My theory was to teach them to understand that the things we do, the food we eat, the drinks we consume and the environment in which we live can significantly affect how we feel and how our body performs. By doing this, I hoped, no I trusted that they would grow up being able to make informed decisions about their own body. I didn’t know really. It was just a theory. A strategy.
That seems like only yesterday…..
And yet here we are.
You may have read, in previous posts, that we are trialling (or were trialling) a gluten and dairy free diet for Matthew, to help reduce the inflammation in his body. This has become all too difficult for him to manage. He has become more fussy and is eating little. His weight has plummeted. He has been getting quite down about it all and desperately wanting to consume milk and “Subway” (ugh!!). In addition, this past week he has contracted what seems to be a virus. This is normally a time when we add extra treatments in like increased chest physiotherapy to help keep his lungs clear. He has strongly resisted this too, to the point I have had to hand over the decisions about his body to him.
Handing over the decisions isn’t an easy thing to do for a parent. Especially a passionate mum who works so hard to provide and find the best care possible for her child. But that also means looking after his mental health – which includes our relationship and his happiness. There is a fine line, for most of us, where we are either allowing our kids to walk all over us OR empowering them to make decisions that are right for them. I believe in this case at this time, our case is the latter. Regardless, in a little over 3 years, Matthew will be 18. Eighteen!! That is beyond confronting to write, but it is fact.
(I WOULD INSERT A PICTURE HERE, BUT I AM NOT ALLOWED TO POST ANYMORE! ON INSTRUCTION FROM MATTHEW!)
So with decision, it has taken about 4 days for ‘natural consequences’ to rear their ugly head. Not bad really. Nice and quick. BUT the results for him have been less than enjoyable. Matthew went to bed at a usual time last night. Then about 30 minutes later I heard him coughing, a lot. Not usual for him. I walked in to find him sat up with disappointment written all over his face.
“Wow, I don’t remember feeling like this…. It’s been a long time”, he said. What he was referring to was the fact that his chest was so very tight that he was having difficulty drawing a good breath in. He was wheezy and required quite a bit of Ventolin to help open his airways up. He hasn’t been wheezy in more than 5 years. He asked me to give him physio, he really needed it. 30 minutes of straight vigorous patting his back as he violently coughed it all out. He settled.
In between the treatment cycles we spoke. Matthew was able to clearly identify why he found himself in that position. He was so disappointed. Disappointed in himself to a large degree, in not doing the treatments. Disappointed more so at the realisation he “needs” to do the intensive treatment just to stay healthy. My heart broke for him but I was proud. I gave only understanding, support and an ear. For if I was to judge him and get angry, at this point, I would surely lose him.
I expect this is step one of many, through the teenage years, where I am going to have to try and ride the wave of the stubbornness of a ‘teen who has a chronic illness’. I can’t say it will always be easy, but what I can say is that I will always try my best to support my boys. It is that unconditional love that keeps us strong and keeps us going isn’t it? All we want is for our children to be happy and healthy. At least I do.
Are you a parent who has experienced this? Perhaps an adult who was “that teen”? I would love to know your thoughts or experiences. Come and leave a comment on the Facebook Page or in Carers Connect (you can join here).
If you are feeling tired, overwhelmed and know that something has to change for your own health and wellbeing, this is just the thing for you. Download your free guide to avoiding carergiver exhaustion and burnout here and it will be sent straight to your inbox.
Note/Disclaimer: This is a piece based on my own experience. I do not endorse or recommend that you avoid or neglect to provide your child/ren the medications they need for good sustainable health. We have not allowed Matthew to stop all medications or treatments, he is adjusting, working out his boundaries and where things fit for him. I also understand and empathise with parents/carers who have no choice but to administer medications against their child’s will. I have been there, it is heart wrenching, I salute you.
Delivered with love x