To the siblings of terminally ill children,
You are loved no less, and you are trusted just that much more. You are independent and strong because you have to be. You have a special gift of communicating, a special gift of unconditional love. You are full of a unique kind of spirit, enthusiasm and appreciation for opportunities that present themselves. For your parents, you are their hope, their dreams and goals that have been shattered. You have rebuilt their future and you are never a burden. You hold a lot of responsibility on your shoulders. But you are strong and openly accept the weight that has been put on you. Your love for your siblings is youthful, and doesn’t stand still in the suffering or longing for more time- that love is so pure, present and true.
You see your sibling, not their illness.
My name is Katie Di Ilio, sister of Matthew Di Ilio, who was diagnosed with MPS III B at the age of four and I am thankful.
When Matty died, I was 13, and it was just before my final year in grade eight. I know that until I started working full time, I had never really allowed myself to think about those first few years of grieving. I remembered all the things that I had done at the time to make myself feel better. I had written him a long letter, and photo copied it and put it in my safe box, then put the original in his suit pocket. I cut the corner of my childhood blanket out and stitched it back together and tucked it into his clasped hand and of course crying a lot when I was at home at night, writing down some memories in a book I can’t seem to find. But other than those memories, I remember just trying to be a regular kid. As much as I can recall, I wanted to continue living. I wanted to do the things that I had no excuse not to do or try.
Shortly after Matthew died I entered high-school. I worked very hard to get good grades, make new friends and kept busy with sports and extracurriculars. Although I was very proud of my brother, and always a special needs advocate, I think at this time, I really tried to not let Matthew define me or set a path for me and instead focused on learning more about myself.
In university, I really started to recognize some of the things that my experience with my brother had taught me and what values had been slowly emerging over the years. I felt urges here and there to do something more. People would ask me why I didn’t work with special needs children, or why I didn’t pursue something that would help to find a cure. That answer was never easy for me, but I just didn’t want to do that. My brother was my brother. He was MY normal. I still had my life to live and my decisions to make.
I am now 25 years old, recently graduated and working full-time in a hospital managing volunteers. I am constantly reminded of my brother, and I do my best to embrace those thoughts and memories. In my experience, the most difficult part of Matthew’s illness, aside from losing him, was watching the effect it had on my parents. I am lucky to say that my parents are still deeply in love and laugh a lot, but I try not to imagine the things that they used to think about as we were kids; the expectations they had and the dreams for their son. This idea is what hurts the most now, as I enter my young adulthood, in a serious relationship about to begin my own story; knowing first hand that life deals out things you will never expect.
Though I enter this part of my life in fear (as most of us do in all life’s milestones), I am reminded that I have been given an opportunity that my brother never had. I should conquer it, embrace it and live it, because I can. I am thankful. I am thankful for this opportunity to live, and to share the memory of my brother. To show compassion where others might not, to show love and respect to each unique individual I meet, and to make a life of struggle and pain a little easier for each person I interact with. Something I have learned as I have grown into my adulthood is that I wasn’t the only person who would ever face tragedy; we all do in one way or another. If you love or are passionate about anything in life, there is pain and suffering. I am thankful that I had a brother I could love so much. I am thankful I had someone to teach me some of life’s most challenging lessons so early on. I am thankful to be a sister, and I always will be.
Jan. 1 always brings up difficult feelings for me. Even before Sanfilippo syndrome entered our lives, New Year’s was a holiday for reflection — which isn’t necessarily an easy thing to process. Each year, thoughts about what the coming year has in store flood my mind. Read More