I was cleaning up the other night and I came across it. I actually hadn’t seen it before, it must have been sent directly to my daughter.
It was the letter from my daughter’s doctor outlining all the reasons why she should be able to qualify for special consideration in Year 12 due to her chronic illness. Whoah!! It hit me. Seeing the ‘problems and concerns’ of someone you love in print makes it very real. We know that putting something in print or visible has value, it is why people write out their goals or take before and after photos of targets they want to achieve or create vision boards. This time for me, this list, from my daughter’s doctor, impacted me significantly.
This letter induced two feelings in me. I find oxymorons so very common in life especially when living with chronic illness.
There is the shock, sadness, difficulty and challenging feelings and then there is the proud, strong, victorious and grateful feelings. Seeing this letter did sadden me and I wished it wasn’t true but it also made something that my daughter and our family who have worked really hard to normalise and ‘work well’, feel justified. It made all the hard work we have done seem significant and necessary.
Seeing this letter, which may or may not come into play in just a few short weeks could have taken me down two very different pathways. Neither right or wrong, but with consequences. A question that I constantly ask myself is “Will doing, thinking or believing this take me closer to where I want to be?” If I answer ‘No’ and still do it then I need to take 100% responsibility for my outcome as I chose it, if I answer ‘Yes’ and do it then I can feel satisfied that I am constantly steering my life in the direction that I want to go. By the way, I don’t always answer Yes and that is okay!!! The journey just takes longer and has different consequences but it is still my journey and I am still on it.
This time I chose to:-
- stop and reflect on all that my daughter has accomplished and how proud I am of her
- be thankful for her beautiful sister who allows her sister to have what she needs to thrive which often involves sacrifice
- be grateful that we live in a country with a medical system that not only provides for our needs and keeps my daughter alive but also advocates for those with challenges
- celebrate that our family has functioned in a way that has supported and normalised my daughter in her 10 years of formal education with a chronic illness rather than seen it as hard, impossible or a nuisance.
The effects of chronic illness don’t just influence the person with it, it affects the whole family and close friends.
If you know someone who loves and cares for someone with chronic illness and feels overwhelmed or consumed by it, please connect us as I would love to help and support them.
Much love, Lisa xx