Holidays and celebrations have taken on a whole new meaning for me since Aidens diagnosis. Every holiday is a refection of where we were the previous years and a gratefulness for more time. October 2016, Aiden had just gotten out of surgery, unable to walk or talk. I think back to this time and it still does not seem real, like a bad dream I am still trying to wake up from. But then I think about how far he has come and try to focus on that. I see him laughing and talking and playing. Yes we struggle through the daily battles of chemicals, vomiting and feeding issues but at the end of the day I still have him to kiss good night and see a smile on his face more often then not.
One challenge is to not compare the old Aiden to now, it is hard at times when I see other kids running and Aiden just not keeping up or getting tired quickly but I also see his determination and I think sometimes it is just a reflection of my own insecurity as well. I have to explain that his brain is just not the same as it use to be. I remember reading an article in college about the media and how it is used to desensitize, if you see something enough, like war, you will not have the same emotions reaction. That is what it is like with a child with cancer.
I actually found it harder coming home and trying to adapt to the life that continued on when we were away. I have talked to many other parents on this same feeling to know I am not just losing my mind. I become lost in this world that is so removed that it is actually hard at times for me to socialize and sympathize with everyday “normal” life. But I have to say I appreciate every message, greeting in town ,and random croissant and they always seems to come at the most appropriate times.
By nature, people perceive me as a positive person. I have been told I am glowing on more then one occasion and I do try to be. I always try to find that shinning light, find some meaning in this all. I reflect on how I have grown as a person over these last two years and that is something that I am truly grateful for despite it all. I can honestly look in the mirror and say I truly love 98% of myself , for maybe one of the first times in my life. I have battled with anxiety and depression for a major part of my life. I remember going to my doctor before Aiden got sick and saying I just have this pit in my throat that feels like I am going to get sick… all the time. It had gotten to the point where it was a challenge to even do simply everyday tasks. My doctor told me this was called anxiety and gave it a word for the first time in my life, she also prescribed me medication. The medication helped but I also felt like it left me with less emotion or at least a stable emotional level. When Aiden got diagnosed I felt like I was cheating my feelings. That I needed to feel extreme sadness because of all the pain Aiden was in, that I too needed to bear pain. I chose to go off my medication that I had been on for the year. Off to Boston we went and I watched Aiden go through horrible procedures and held him close as he screamed but I stayed strong for him, even though I hate that word “strong”. I wore a battlefield mask, showing no fear. I held tight control of my emotions, one to not scare him that something was wrong and two to give comfort that everything was going to be ok. I could have fallen apart, I could have fled (not going to lie my browser history shows a lot of remote vacations during this time), I could have let the darkness creep in but instead I became more self aware of my emotions. I started trying to better myself. in the hospital room I would do my makeup and blow dry my hair everyday. I went tot the gym. I ordered food that I had never ate before from a weird app. I also knew that if I was a sobbing mess or angry or just overly emotional that I would not be able to make decision properly and would not be taken serious from medical professionals. When Aiden relapsed in December I went to my doctor and said “I need something to make me not cry all day” and I went on anti depressants for the first time in my life. I actually laugh cause I got prescribed Pristiq with my doctor saying “it is much better for libedo them Cipralex” My son was dying and I was newily separated from my husband but my doctor was worried about my libedo? ok sure!
Once again I felt like I was cheating. I talked to one psycologist and she said it is like If you broke you arm you would need a cast. But how would I know when I was better? I was a huge gamer growing up (specifically the sims) and I had one friend tell me it was like a cheat code to make it easier…. my reply… once you get the cheat code it ruins the game! After three months I was able to go back off medication and be at a good place mentally but is a constant self awareness and a challenge at times.
I was so thankful for going back to work last year, to being successful, to learning how to adapt again and I felt I made a difference. In March, Aiden was so ill at school that I was taking more time off to go care for him then I was making and I had to take a leave for “Parents of Critical Ill” . I look back now and know I should have gone off sooner, my head was not right but I had tasted this “normal” life and tried to hold on. I am so thankful to our amazing community and my friends for the support we received so I could go off work. I was counting down based on doctors recommendations and insight. BUT then summer came and everything the doctors told us seemed so unreal.
I am so thankful for the time I have had off, for the summer with Aiden and the boys that I missed the year before in hospital and miles away.. It may seem so mediocre, but prior to everything, Aiden and I would always sneak to grandpas in the morning for fishing in the summer. This year Aiden did not go on the dock , not a care about fishing but then one morning as summer drew to an end he woke at 6 ready to go fishing with Grandpa. He got mad as I suggested waking brothers. He said I am not afraid anymore. (I was terrified). He walked (by himself) down to grandpas camp at 7 am, just the two of them went out like old times. The whole time I was worried, would Aiden flip out, get hurt ect. but he came back and they both had an amazing time and I will be thankful for this memory for the rest of my life as I am sure my dad will too. 2 years ago he could not even lift his head and now he was walking around campground by himself. There was so many moments this summer just like this, This whole experience has taught me how to appreciate even the smallest of moment. yeah fishing with grandpa but no it was so much more!
Prior to diagnosis I was so afraid of what other thought of me, so afraid to hurt someone’s feeling and really just caring more about the happiness of those around me rather then myself. I still feel this way but not to the same extent. Since Aidens initial treatment I have learned how precious life is and how important it is to make my own happiness a priority as well. I also wanted to show my kids what happy healthy relationship looked like. I also purged so much material goods from my life. Having lived in one room for a year I realized how little I needed to be happy. There was not one thing I owned that I missed from my house that did not fit into my suitcase when I was a way. I look back and see how neurotic I was when we first came home. Donating two truckloads of “stuff” to goodwill but it was also a cleansing and therapy for me (thank you to my brother and his truck and he did not say a word). I also reflect on the tornado in Dunrobin and the families that in one sweep lost it all… what do you think that are wishing for right now it is not the 4 walls of a house but the home they built with memories! Through this I learned did not need the outfit I would never fit, it just set a unrealistic expectation of what I should look like. I did not need this shopping channel item that would change my life when a simple knife and fork would do. On more then one occasion at the hospital I did not have brush and used a plastic fork to comb my hair and you know what… it worked.
I am not perfect and I falter many many times, but I have that drive in me now to just try to be a better person that I am proud of to look at everyday. I know in the end I can not say I wish I try harder or wish I did more and it is hard. But then I reflect back on the summer and Aiden running around our trailer park and suntanning on the beach. I reflect that he gets up and gets dressed everyday for school wether he is there for half the day or 10 minutes. I try to push the sadness that he can’t do a full day away. I am also so thankful that Declan is have such a better school year, just more settled with routine and confident in himself. I lost count how many time he got suspended in kindergarten last year. Last week with tears in my eyes I thanked his old teacher who never gave up on him. One meeting she said I am so glad you blog so I have a better understanding of what he is going through. There is something about the boys just getting to school that is such a comfort to me. I use to get sad when Aiden talked about the future but I have now learned that you need to always have dreams and hope and goals, do not give up.
I am so thankful for the other parents I have met and even strangers that have messaged me thanking me for posting our voyage, it is hard to be honest. I want to sugar coat it and just post the happy photos of us at concerts and hockey games and wish trips. I feel guilty at times, thinking people see me having “all this fun” but then I realize that in all of these times I wish they were for any other reason. I wish I would have just lived life to the fullest and created these mormories not because I think it is a bucket list.. Why did I need an excuse to go on a road trip and see Ontario for the first time. To cry at the beauty of something so much larger this an isolation room? Why did I need to rush for Aidens to experience his first concert with the rush of people all around or to feel the adrenaline of sledding down a hill in the winter with friends or to go ice fishing, or in a combine, or hockey game, or Disney land or throw a huge birthday with all his class, all these thing I have not even done myself growing up! It should not take facing death to live life and experience its beauty.
I have had a difficult time writing lately, it was so much easier when I was so far away, in Boston and Toronto. I want this to be a happy ever after story and maybe it will be? Last week I sat in clinic and heard the bell ring ,. I felt the families joy like I had, the hope. But the I saw a 8 year old child cry cause he has not rang the bell yet. Aiden rang his bell in Boston and then relapsed in December. Most Leukaemia patients will never ring the bell because treatment never stops for YEARS!. I sat in clinic waiting for blood result and I struck a conversation with another oncology father. I went to the back room and chatted with palliative care, coming out the two doctors then went to this father, asking if he would like a tour of the Rogers house. I could not help but stare. I was watching myself in his face when I first got asked to be followed by palliative care. I gave that dad my contact info if he wanted to chat. Palliative care!? for me it meant end of life. I was not ready to admit that. I asked over and over, “are we really there?”. is this giving up hope? Then I learned Palliative care means to give comfort. It was hard but really was a great choice and they just offer so many more services and expertise then standard oncologist.
I have received so many messages from strangers lately, saying thank you for posting or People in town just saying hi. That is the reason I started this blog. If I could help one person or family know they are not alone in their feelings; this would all mean something. I do not want those sad looks, of how are you doing. I want to write this so people examine their life, don’t hold grudges, do something that is out of yourcomfort zone, make a lasting memory. For those with sick children just do the best you can and accept that this is the short hand of life you have been dealt you can fold or make it as beautiful as you can. This is your Life and it is a story to make worth reading.