The house is so quiet which causes me to feel uneasy. The calm gives room for my anxiety to grow but I also know I need this time to absorb all the events of the week. I need this time to freely sob and to just stay in bed and sleep and recharge as much as possible. Aiden has a MRI on Monday which will give a clear picture of how much growth there is and what the next steps will be. It really is just one step in front of the other at this point, to just keep swimming…..
Saturday morning I wake up and get ready to pick Declan up from his Dads and take him to hockey. I signed Declan up for recreation hockey for the first time this year thinking it would help him build confidence and friendships but mostly to give him a chance for one-on-one time with us and to have something that was special just for him. Having a sick child is like a vortex that sweeps your home. It is all consuming and impossible to stop. Most plans, decisions, catering and bending of house rules revolves around the complex care child and it is all too easy for the other siblings to get pushed aside in their needs and desires.
I have worked very hard to try to balance but it is impossible at times. This leaves us with an 8 year old that lashes out and falls through the cracks in emotional and educational development. I am so incredibly thankful for the boys school and the teachers for being so understanding and compassionate and also a huge thank you to Carp Tutoring that is offering educational support for Declan. It breaks my heart when he cries that he is so dumb and can’t read, as a grade two he is at a kindergarten reading level. With Aiden being sick, us travelling for treatment or appointments and just “Rest Days” he has missed A TON of school. I try to reenforce that it is not his fault that he can not read and that he is far from dumb. I tell him he is an amazing brother and although Aiden is the one with the cancer he has been through so much as well which makes him a very special boy. Cancer affects the whole family. Yes you look at Aiden and can see the physical signs of him having cancer but the toll this has had on the siblings, specifically Declan, is sometimes worst. Brothers who use to share a room together, spending endless hours in their bunks, chatting and playing games; this seems like a distance memory now. How do I explain to Declan, at 5 year old, why Mommy has just picked up and gone far away with Aiden? or at age 7, why older brother gets to stay home while he is sent to school? or now age 8, Why Aiden get to stay up late watching tv and sleep in Moms bed while he is sent to his room he now shares with his younger brother at 7:30pm for bed… Because he slept for 6 hours this afternoon and I want him beside me incase he has another seizure or he dies in the night? What is the right response? There is no encyclopaedia or teaching manual on this shit, this is not basic 101 parenting, this is advanced calculous when you think why would I ever need to know this shit?!
Hockey ends up being cancelled but we go to my brothers up the road from rink in Pakenham to visit instead. Declan runs off with his cousin as Jay and I drink coffee and Vodkow Cream Liqueur with my brother and sister in law. My brother, Jeff and his wife Christine have been so incredibly supportive through this. When Aiden first got sick, Declan lived with Jeff and Christine for the first months, even switching school so he could take the school bus with his cousins from their house. This love and support they gave Declan through this incredibly hard time I can never thank them enough.
Jeff and Christine know scan day is on Monday. We do not talk about it, they know better. I think they know I just want a taste of normal. So we chit-chat about whatever and drink our specialty coffee. Jay gets roped into helping my brother move a freezer and it really does just feel normal. But MRI Monday lingers in my mind. The harder I try to fight it the more it grows and soon I feel my body overwhelmed with anxiety and panic. I tell Declan and Jay it is time to go. Declan is beaming from the morning together, very happy as we drive him back to his Dads and head home ourselves. Once inside I immediately head to our bathroom and take an Ativan. I shuffle through my bathroom drawer to find an old script of anti-depresent. I have three half bottles of different ones at this point. I can’t remember what my adverse reaction was for this one, excessive sweats, heart palpitation and bruising or maybe this was the one that made me feel like I had schizophrenia but at this point I don’t care. I need something to take this nauseating pain and panic away. I head down to the kitchen and do a shot of vodka. I need my body to still, vibrations are taking me over and I can’t let that happen. Jay knows better then to tell me no but I see the look of concern on his face. We eat a quick lunch and plan to go visit our friends for the afternoon. One more shot and my body relaxes enough to do one more shot and head out.
A short drive, just outside Almonte and I am with my bestie. She too knows not to ask and that I will talk about it when and if I want. Sometimes all I feel is the huge elephant in the room and I feel like when people see me, even strangers, all they see is this mom with the child with Cancer and it is a taboo subject to talk about; Or maybe I just make this up in my head because this is all I have known for the last 3 years. As we settle into my friends house with cocktails my body finally starts to feel normal. We laugh and chat. “We should play rummy later it has been so long”. and it is a normal afternoon with friends….
The phone rings, Josh name shows on the phone. I pick up….
“WHHHAHAHAHAH WHAHHAAAHHAH” and heart wrenching unrecognizable painful cry echoes through the phone.
WHATS WRONG?!?!? IS AIDEN OK! IS AIDEN OK!
the cry floods me with panic as I Yell into phone “Call the ambulance” Call the ambulance”
OH GOD NO!! My heart pounds as I run to the door to get my shoes, Jay close behind. Again another piercing cry through the phone as I continue to yell. “Call the ambulance, I am on my way!” I picture Aiden just like the morning I found him from the seizure, almost lifeless and cold. My hand is on the door knob just as Josh’s voice sounds through clear as day. “That was Aiden!” He says to me almost in anger.
I am so confused.
What is happening?
“Is Aiden ok? I though that was you crying” Yes, Josh reply’s as he explains Aiden is mad cause he does not want to clean his room so he called me for Aiden to talk to. I am speechless. I am shaking. Then the grief transforms to anger and spews venom from my mouth. “WHAT THE FUCK! I thought you were calling crying cause he was dead you fucking asshole! Why would you do that! Why would you not give me a heads up first! FUCK FUCK FUCK! I scream into the phone through sobbing cries and hang up the phone.
My friends and Jay look at me in shock. I can still hear the unrecognizable crying ringing in my ears. My phone dings with a text we banter back and forth. I ask if Aiden wants picked up to the response “It’s my time with them. I’ll just parent without you. I thought you would actually help” I ignore, knowing at this point it is solving nothing. One more lengthy message criticizing everything that I am and the texts stop. My body shaking Jay hugs me until I break free and do another shot and another. After I say I am ok. The boys go into town to pick up something from one of the ForSale Facebook pages and leave my bestie and I to hang out. The clarity of the next couple hours escape me.
My brother ends up showing up as I hear his voice from the bed I am somehow sleeping on. The earlier events still linger in my soul. How much longer does this go on? I am so tired. I roll off the bed not sure how long I have been sleeping for. Out in the kitchen my brother and Mal are sitting chatting, having a beer, a normal Saturday afternoon. I smile and say “What’s up” but as I sit and try to be social I feel the excruciating exhaustion overtake my body. I try to centre myself. I try to engage in light conversation. I try to get the happy easy going Stephanie back. I try to get back to normal but I am just soooo incredibly tired. The boys return and I tell Jay I am ready to go home, I think it is late afternoon as I feel dusk settle in. He see’s the exhaustion in every ounce of my cells and walks me straight upstairs when we get home and tucks me into bed. dark. quite. sleep.
I wake in our bed and look to the clock, it is just after 8 pm now. Jay is watching TV beside me. I snuggle into his arms and sob. I stop for short moments over the next couple hours. We watch TV, we chat, we laugh, I cry some more. Around 11 pm Jay falls asleep. I continue my show. It is not good by any means but I can not sleep and the TV keeps my mind focussed on a terrorist attack when all of America is destroyed by itself and this little town has to try and rebuild. “Are you still watching?” Yes! don’t judge me Netflix! The sun begins to rise and Jay wakes, “Did you stay awake all night?” “No I fell asleep for a bit” as soon as the lie leaves my lips I feel nauseated. “Yes I could not sleep.” I say. We spend the morning in bed with coffee and more of this very stupid show. I just can not seem to shut off.
My head is still racing from the phone call yesterday. The hardest part of being separated is when the boys are not here. I just need to know they are ok but I am so incredible terrified something will happen to Aiden and I will not be there. At 11 I text Josh “Is Aiden Ok?” I receive a photo of him sitting, eating bacon “thank you” I reply. My phone dings again “I’m really sorry about yesterday. If I ever let them call you I will talk first so you know everything is ok.” the night has cooled the space between us once more. I know we are both stressed out. We never really got along before Aiden got sick, so add one of the worst stresses anyone could ever have into into the mix and it is a recipe for disaster. We did not stand a chance.
The rest of the day is spent in bed. We order burgers from Milanos for dinner and eat in bed. I don’t want to leave the comfort and security of my room. I finally fall asleep for the night waking to Monday, it is the MRI Day and time to pick myself back up and put myself back together for the upcoming week…
How to Help
I am so incredible grateful for the support we have and continue to receive through our friends, family and community. If you follow Aiden’s Voyage on MamaOutpost please consider making a donation to help with medical expenses and daily living expenses for our family. 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 with that I have been unable to work and at this time have exhausted all funding sources. Any contribution would be greatly appreciated.
Stephanie (aka MamaOutpost)