I can’t even use the word exhausted to discribe our lives right now as it does not even come close to the actual feeling. This round of chemo is taking its toll, beating Aiden down so bad he can hardly hold his head up. For over a week now Aiden has pretty much been on complete bed rest except for frequent trips to the washroom to expel everything from his body. I stopped Aidens chemo two days ago to see if it would help but he still continued to get worst with added headaches and excruciating tummy pains. I took him into Cheo this morning fearful of being admitted and how I would explain it to Aiden if we did. Every trip just seems more and more difficult as Aiden screams at me how much he hates me and I am doing this to him and things I dear not repeat. My heart breaking with every cry that he wants to die, screaming to let him die cause he is going to die anyways. And I get it, I would hate me too. I am the one who takes him to 99% of his appointments, I am the one who holds him as they struggle to put IV in. I am the one who tells him we are trying to get him better yet I give him medicine that makes him puke and shit and looses his hair all at the same time. I am the one that pushed him to try school for even just a half a day or takes his iPad away for being rude or not listening trying to hold on to a small normalcies of childhood and teach him lessons to grow into an amazing man someday.
He does not see me fight for less needle pokes going from 4 a month to 1. He does not see me arguing with nurses to try hydration first so that he can go back to the comfy bed at home instead of getting admitted. He does not see the endless emails I send out following up on trials or the phone calls to organize prescriptions from three different pharmacies. And that’s ok because I can not imagine what he feels everyday for the last three years. I question everything, how much more can we do of this? I never want to loose sight of quality of life over quantity and am fearful all the time that I am loosing my perspective that I have held so dear. But I am not ready to give up so we push on! And if that includes being spit on and yelled horrible names I will take that as my weight to bear. I will take those actions and words and hold him and cry that I love him as he claws at my neck till I bleed Because it does not even come close to what he has been through for the last three years. And I know after the IV or needle is in he will still cuddle me at night and tell me he loves me. And I will see the hydration working and him spruce right up for the first time in days. And the feeling I have now as I listen to him asleep in him comfy bed beside his brothers and think about the songs he sang on the way home from Cheo and the movie night seeing frozen with Kids Kicks Cancer Karate
Group tonight and I know I did the right thing today bringing him to Cheo and fighting for the best care for Aiden and not just following the recommendations not specific to my sons unique needs. So I fall asleep running my neck and accept this exhaustion as the weight I must bear.
Aidens passing has been incredibly difficult but a lot less difficult because of the love and support we have receive from family, friend and community. Thank you to everyone who has sent meals, condolences, and donations so I can take this time I need now to grieve and take care of myself and beautiful blended family. I am so incredible grateful for the support we have received.
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Stephanie (aka MamaOutpost)