So its been a while. Ok maybe more than a while. It’s not that I haven’t had anything to say, I have, I’ve just been finding it hard to actually put my thoughts down. Part of it is because I’ve felt for months that I have been on the brink of having my diagnosis changed and that I should just wait till then to blog, because everything felt so up in the air. But it’s now months later and it hasn’t happened, and I’ve resigned myself to the fact that it probably never will.
So why post now? Well as many of you probably know today is World Arthritis Day, and in celebration of it my mom wrote a beautiful post about my families and my journey on one of the Facebook sites that we are both a part of. This post really touched me, and so I felt like I had to share it with all of you. So here it is:
Today is World Arthritis Day and I wanted to write this post to support my daughter Rebecca on this journey she is on. She texted me overnight from university in Boston where she is to remind me to wear blue today. I know she will not mind me sharing some of this with the parents on this site.
She will be 21 in January and has been aware of her SJIA for the past four years but probably has had it since childhood. She is now on Infliximab infusions amongst many other things and is being seen by the paediatric rheumatology department at Boston Children’s Hospital. She continues to have pain, joint swelling, skin reactions, autoimmune difficulties, fatigue and concentration problems. But, and this is a huge BUT, she is determined to live her life despite all of this, determined to meet her challenges head on one at a time, even as there are days I know she would rather come home and curl up on the couch forever. Recently she sustained multiple fractures of her ankle and foot from landing badly on the dive board during diving training and is only starting to understand the management for that. She continues, however, to go to class, do her work, go to her multitude of doctors appointments, is away this weekend with her brother who is also at Uni outside Boston visiting friends, and is planning to go to winter training dive camp in January. She inspires me every day with her determination and resilience and I hope that she can inspire others that this journey of growing into young adulthood with this illness is possible. I know there are many others who share this journey. It certainly is not an easy road and I would rather this was not her journey, but it is, and wherever it may take her and me and our family, we will go. And that makes all the difference for her, I think.
Wishing you all strength and care and love today and everyday.