Another year, another update. I will never take for granted the chance to update the blog with your survival journey. It has been 8 years since you were given your diagnosis and our world was completely turned upside down. Today, April 1st, we remember what we felt and how we coped 8 years ago and celebrate where we are now!
I had to reread what I wrote last year knowing that Covid-19 was new and definitely on our minds. Guess what?? It is still here :(. We have learned more about the virus and how we need to cope. We have missed out on many family traditions and get-togethers this past year. These restrictions have been hard on you and everyone else. You miss hanging out with friends and family. Covid-19 has also changed the way you competed in sports. This year you played a total of 4 hockey games before we were shut down. With new guidelines you were eventually able to only have hockey practices; however, only 10 players were allowed on one side of the rink. We are hoping that things will open up and you will be able to play baseball this spring/summer (fingers crossed).
Also, due to Covid-19, we had your yearly check-up with the Long Term Survivor clinic over a zoom call (video call). Zoom calls seem to be the new trend due to the pandemic and most appointments are done this way to limit the number of people in hospitals. Through the video call, your team felt like you are definitely healthy and had no concerns. It is always so refreshing to hear that there are no concerns and you can continue to live your life to the fullest. This is and always will be celebrated!
School, this year, has provided you opportunities to be with your friends. With restrictions only allowing your immediate family in your home, school is where you get to see and be with your friends. This year is your last year at St. Pat’s and you will head to Notre Dame next year. This is hard for me to think about. You are my baby and my last child to leave elementary school. You are looking forward to the change and the opportunity to be part of a sports academy. Considering that recess and gym are your favourite subjects, the sports academy will be right up your alley! You have struggled this year in school, more than any other year. Math has not been easy and we have had to share with you the way your brain processes information and why you struggle with mathematical concepts. Sharing with you your strengths and how you are able to complete other tasks without little thought has helped. Your learning profile is not what we would call “typical” and you present like you shouldn’t have difficulties and sometimes this is hard for people to get past. Nevertheless, your school team is supporting you and learning how you learn best. Eventually, you will need to become your own advocate and request the strategies you need to learn best. It is all a process.
This year has been hard on you not only because of Covid-19 and the restrictions it has put on your life but also because Abbi has not been doing well. She has been admitted a couple of times now to ACH due to her CRPS (complex regional pain syndrome). Her pain levels have been high as of late and I know that it has taken a toll on you. For a few years, I have observed how you give support to others who may be struggling or have more obstacles with their daily lives. You are keenly aware of how they feel and you are almost on heightened alert to ensure that they are okay. I see it as your caregiver’s/protector’s heart or that of another sense. This has been pointed out to me by others who have said that you knew exactly what to say or do when they have received bad news or are going through a difficult time. Teachers have let me know that you are always very helpful in the classroom; however, you are always willing to help those students who have or struggle with various disabilities. They share how you truly see them and just know how to help them. It’s not that you feel sorry for them but that you honestly care for them and want to help - you become their protector. Well, this year your dad and I have witnessed how you know how to just “be there” for Abbi through some of her darkest days. Days when dad and I can’t seem to help in any way, you can. We also notice that you are hurting because she is hurting. This sometimes comes out in frustration and I can see your struggle. How fair is it for a 10-year-old to take on so much? You can also sense the days when your dad and I are suffering, even if we try to hide it. These are the days you snuggle in so close and don’t say anything. I can’t tell you how much this calms and soothes. I wonder if you developed this caregiver’s or protector’s heart so early because of what you went through? It is so hard to describe. Of course, I am thankful for your gift and love hearing how you have impacted others. However, this year, with Abbi, I worry that you don’t see the impact and improvement you want to be there. I know you carry this each and every day. When you peak into her bedroom to see if she made it to school or when you ask what her night was like and when you just sit on her floor while she sleeps. I know you take it all on.
I usually don’t have wishes or hopes for the next year. I know that you are a survivor and make each and every year better than the last. However, I certainly hope when I sit down to update your blog in a year from now that I won’t have to report on how Covid-19 has continued to disrupt your life. I hope to report that you are enjoying sports again, to their full capacity. You are back to hanging out with all your friends. But, the biggest wish I have is that you are playing ball in the backyard with both of your sisters and I know how much you want it too.
Love you to the moon and back,
Mom
