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 than 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 who say they feel the same way, which is nice to know I am not just losing my mind. I have become lost in this world that is so removed. It is actually hard for me to socialize and sympathize with everyday “normal” life sometimes. I have to say though, I appreciate every message, greeting in town, and random croissant that always seems to come at the most appropriate times.
People perceive me as a positive person. I have been told I am glowing on more then one occasion through this and I 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. 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 vomit… 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 was first diagnosed I felt like I was cheating my feelings. I felt I needed to feel extreme sadness because of all the pain Aiden was in; I too needed to bear pain. I decided to go off the anxiety medication that I had been on for over a year. Off to Boston we went and I watched Aiden go through horrible procedures and held him close as he screamed and I stayed strong for him. 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 to the gym. I ordered food that I had never ate before from a weird app I had never used before. 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 laughed cause I got prescribed Pristiq with my doctor saying “It is much better for libido them Cipralex“. My son was dying and I was newly separated from my husband but my doctor was worried about my libido? Ok sure!
Once again I felt like I was cheating. I talked to one psychologist and she tired to sell me with “If you broke your arm you would need a cast, it is the same thing”. How would I know when I was better though? 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 though it ruins the game! After three months I was able to go back off medication and be at a good place mentally but is constant self awareness checking and a huge 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 my other 2 boys that I missed the year before as we were in hospitals and miles away. Prior to everything, Aiden and I would always sneak to grandpas in the morning for fishing in the summer. This year, all summer Aiden did not go on the dock or even care about fishing, almost fearful I thought, but then one morning as summer drew to an end he woke up at 6am “ready to go fishing with Grandpa!”. He got mad as I suggested waking his brothers. He said, I am not afraid anymore. (I was terrified). He walked by himself down to Grandpas camp at 7 am and just like old times, the two of them went out fishing. The whole time I was worried, would Aiden flip out, get hurt etc. but he came back and they both had an amazing time. I will be thankful for this memory for the rest of my life as I am sure my Dad will be too. Two years ago he could not even lift his head from a pillow and now he was walking around the campground by himself. There was so many moments like this throughout the summer. This experience has taught me how to appreciate even the smallest of moment. It was just fishing with grandpa but 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 just caring more about the happiness of those around me rather than 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 took priority in showing my kids what happy healthy relationships look like. I have purged so much material goods from my life. Through Aiden’s Cancer I learned I do not need the outfit I will never fit back into, it just set an unrealistic expectation of what I should look like. Having lived in one room for a year I realized how little one needs to be happy. There was not one thing that I missed from my house that did not fit into my suitcase when we were away. I look back and see how neurotic I was when we first came home. Donating two truckloads of “stuff” to goodwill. I have reflected 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! I do not need this shopping channel item that will 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. A personI am proud of everyday. I know in the end I can say without a doubt that I did everything I could have for Aiden. I reflect back on the summer and Aiden running around our trailer park and suntanning on the beach. I reflect that he get’s up and gets dressed everyday for school whether 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, more settled with routine and confidence 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. I use to get sad when Aiden talked about the future but I have now learned that you always need to have dreams, goals and hopes, do not give up!
It is hard being so vulnerable in the honesty of my writing. 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 us having “all this fun”. Then I realize, 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 memories not because I thought it is our last chance. Why did I need an excuse to go on a road trip and see Ontario for the first time in my life. To cried at the beauty of something so much larger than the isolation room we lived in for so long. Why did I rush for Aiden to experience his first concert, 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 Disneyland or throw a huge birthday, all these thing I have not even done myself growing up! It should not take facing death to live life and experience its full beauty.
I have had a difficult time writing lately, it was so much easier when I was 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 the first time. I gave that Dad my contact info if he wanted to chat anytime. 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?”. I asked myself 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 am so thankful for the other parents I have met and the strangers that message me thanking me for posting our voyage. 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, so they don’t hold grudges, so they do something that is out of comfort zones, so you go out and make a crazy lasting memory. For those with sick children just do the best you can and accept that this is the hand of life you have been dealt; Yes it is shitty, you can either fold or make it as beautiful as you can. This is your Life and it is a story to make worth reading.
How to Help
I am so incredible grateful for the support we have and continue to receive through our friends, family and community. December 2017 we were given a life expectancy of a couple months. We are now in year three and fighting everyday to beat this awful disease but I have been unable to work in order to care for Aiden and receive no child or spousal support and very limited social service funding. Donations will help with all of the medical, travel, and accommodation expenses that I have incurred over the last three years as well as those expenses that are still coming. Donations will help with daily living expenses and will ensure the boys have great memories together for whatever time we have left.
If you follow Aiden’s Voyage on MamaOutpost please consider making a donation. Any contribution would be greatly appreciated.
Stephanie (aka MamaOutpost)