A conversation I had with the social worker for the children with cystic fibrosis and their families made me think about our lives with a 'chronically ill' child and how we deal with that, and made me wonder how that is similar or different to those in the same situation as us.
Our social worker asked me how we were coping with the diagnosis and Victor's medical treatment. I said we were going fine; I have my laminated charts but mostly we are in a routine and I don't rely on them as much any more, unless we are adding in a new medication. Although he takes a lot of medication every day (currently he takes salt supplements, enzymes, antibiotics, multivitamin supplements, iron supplements, Vitamin D supplements, and a study drug) it's quite easy to make sure he gets them all during the course of the day.
She also asked how I was feeling emotionally about everything. Honestly, I am fine. I think we all are. Of course I wish Victor did not have cystic fibrosis, and I could never possibly be happy about that, but the fact remains that he does have it and it's not going to go away. I find it much more positive and constructive to focus on keeping him healthy and looking to the future, as better treatments are being developed all the time and lots of research is going into this disease. I believe we will see massive improvements in treatment, affecting not only life expectancy but also quality of life in the coming years.
She also asked how the family were coping with everything. I think everyone is doing well, and she said often family and friends take their cues from the parents and react the same way. We have been open and positive about everything right from the start so I think the people around us have also been positive about everything. Obviously it's a serious illness, but I refuse to let our lives become doom and gloom. He is very healthy so far; and even when he gets sick he will need a family who can be strong for him.
I think one of the main reasons we are doing so well emotionally is partly because of our attitude toward cystic fibrosis. It is becoming normal for us and just a part of our lives so we don't really see it as a big deal any more. Of course that does not take away from its seriousness, but I don't see any point in constantly thinking about that, especially when there is no need to: Victor is doing so well that his treatment is purely preventative at this stage. Giving him his medications and treatments has now become automatic, so instead of thinking about how sad it is that he needs all this medicine I now just do it without thinking about it.
The other reason we are doing so well is because we have a very extensive support system in the form of family and friends. We are very lucky to have a large group surrounding us who love and care about both the boys and are there for us when we need them. Without them, I think everything would be entirely different. We have a large family that extends across to the other side of the world and it is an amazing thing to feel an emotional connection to people who are physically so far away. We also have family nearby and they are able to help us practically as well, such as watching Felix so I can go to appointments with Victor, coming along to the hospital with me, or looking after the boys for a few hours so we can get a break. Just spending time together really helps as well, it is a reminder that life really has not changed much.
What I've learned from this experience so far is the importance of family and what a difference a support network can make and that we can handle the bad stuff. The bond between Felix and Victor is really amazing, I know that they will both always look after each other. I've never seen anything like it, they are two peas in a pod!