Today is clinic day for Matthew. Clinic means multiple doctors, tests, needles and examinations. It means so many unknowns.
We have been lucky enough to have had an eight week break between visits to the Cystic Fibrosis (CF) Clinic. Clinic for Matthew involves an hour trip into the hospital, a day of school and a day of waiting around. We arrive, struggle to find a park and then race to get to our appointment on time. As we approach the hospital we place a mask on our faces (largely to protect Matthew from dangerous bacteria) and dodge the multitude of smokers who line the pathways to the entrance. We have NO way of escaping them. Matthew often holds his breath just to get in. I digress.
It is a day where emotions bubble to the surface, many that surprise us. For all of the physical obstacles that Matthew faces on clinic day there more obstacles that can’t be seen. It affects each one of us differently. Anticipation is often high, hopes higher and fears… well, I am sure you can imagine.
Just entering the hospital brings the reality and gravity of Matthew’s situation. At times it brings back memories that are still raw, of times gone by where Matthew has been so gravely ill. For most the health care system often measures a persons’ health based on “numbers”. Numbers are often the difference between an admission or not. That aside they give us a reality check on how Matthew is really doing. For a person with CF, you can’t see what is happening on the inside.
Over the years I have become more and more self-aware of behaviours and emotions. I have been able to learn how I cope or don’t. What I struggle with and why and through this I have been able to identify what helps alleviate these pressures or stressors. While I may not have total control of Matthew’s health (I try!!!), I can control our home environment, my attitude and preparation to these inevitable events.
As for Matthew, the further he transitions into adolescence, the more I notice he is emotionally affected by what is happening to him and around him. His level of understanding that he has about CF and what it means. Worse right now is the pressure of physiotherapy. It is physically and psychologically draining. While essential, it is a thorn in his side. That aside, he is a 14-year-old boy who has been on testosterone treatment for a year. For the past five months he has grown rapidly, his voice is changing and there are many pressures at school. He is a typical teenager on top of all of this.
Matthew had seven weeks of FANTASTIC health where he didn’t have to take any antibiotics, this has been fabulous for him. However, a week ago he developed a cold. He was not happy, not impressed. To both of us, it was a little kick and felt like all the hard work was out the window (it wasn’t). We vowed to not drop the ball and have done the best we could to combat the cold and stop it from traveling to his chest. This has no doubt added to the pressure he is feeling coming into a clinic check up. This was evidenced by the words, “I’m sorry mum”. Clearly this is not his fault.
Last night as I urged him to set up his nebuliser for physiotherapy. He had resistance. “It’s pointless doing this” he said, “I never get a break”. “I don’t care; I just don’t care”. At first I took offence and challenged him that it wasn’t “pointless”. I questioned him not caring. I carried on about how we all care and that it wasn’t fair to say that.
Then I stopped and looked at him. This isn’t about me. I wasn’t listening to him, really listening. This wasn’t him not caring. He is scared, frightened, vulnerable and fed up. He then told me that he felt sorry for himself.
And there it was. Of course he feels sorry for himself, heck we all do at times. I realised he didn’t know how to articulate his frustrations. We had a lengthy discussion an acknowledgement that CF sucks. We talked about choice. We talked about the amazing choices he had made in his life. We talked about how deeply he really did care but right at the moment how he was sick of it, tired, done. We had a few cuddles and I tried give him some suggestions of ways he could express his frustrations in the future. Poor darling, my heart broke for him. Marty came in and finished off the treatment, he bought in dad jokes and rough and tumble to lighten the mood like only he can.
I don’t know what today will bring. A mixed bag I assume. These days I choose to deal with each situation as it comes up rather than waste my energy worrying. Easier said than done, I know. Today my priority will be on Matthew, his mindset and supporting him. It always is. He is nervous, he knows when he is not 100%. He has done the best he could and what will be will be.