September 16th, 2016 ~ Today I woke up with a smile on my face. I showered, blow dried my hair and put my make up on just right. I put on a slimming turquoise blouse with skinny legged black dress pants. I had just got new brown leather ankle boots and was so excited to wear them. I looked great, I was stylish with a little sass. I looked put together I was ready for my day, I thought ready for anything. I dropped the boys at daycare then grabbed a double double. I had a meeting with Aiden’s school at 8:20, he had been very tired at school and wobbly and they had wanted to chat about what was going on and this (virus) he had. Sitting down the concern is expressed that there is something more then viral fatigue; they suggest I take Aiden in sooner rather then later.
How life changes in the blink of an eye. Things that once seemed so important quickly losses their significance, instantly. In a room full of darkness trying to reach for a tiny string to turn on a light. To see clearly again. To see the future ahead. Walking through the fog in what seems could only be a dream because the naive you believes this stuff dose not really happen, could not be true.
As Aiden and I sit in the waiting room I look at all the other kids and try to guess their sickness. The preteen to the right of us – obviously eating disorder; the young boy with a cast – a follow up appointment. As other kids skip ahead of us and the hours tick by I realize they probably send in by order of emergency. I guess we are not in an emergency situation. Once we finally get to the other room we wait a bit more. Finally a student nurse comes in to do an initial screening. Like the many times before they ask all the same questions: are your headaches worst in the morning; What do they feel like. They have Aiden perform yet another neurological test; hands up, hands down, touch your nose, walk in line; quite similar to a sobriety test as I think about it now.
At this point I tell them the dates this has been going on. Headaches started the end of school last year. Our family doctor had thought it could be due to stress and had referred us to a pediatrision. Early August we had the pediatrision appointment, she performed the neurological test with the conclusion that Aiden could just be clumsy or he could have a mild learning disability which would explain his struggle and frustration in school. We were to book a follow up appointment after school had started. I told the nurse I was not exact on when he started to feel very ill but I knew he was quite sick August 20th (the last Tragically Hip Concert) as they had projected it at our camp and Aiden kept saying he could not see in the dark and felt very wobbly. All the kids were playing tag and he just wanted to lay in the car. I felt so bad for him because I knew he wanted to play so bad but he was scared of getting hurt and had no energy. I wish I took him in that night! He was so sick and I brushed it off. We took him back to the family doctor that week. She said he could have a virus. “Well that makes since, I had just gotten over a virus that wiped me right out the beginning of the month.” That must be it….
Another time, I’m not sure when exactly, but I remember Declan was having a play date the weekend before school started and his buddy had just arrived. We all jumped up and went to answer the door. Aiden was in great spirts. We greeted Canton and chatted a couple moments to Cantons mom, who is also a good friend of mine. Aiden was right in there hanging on the stairs, laughing even, then continued to the bottom of stairs went to turn the corner and BLAH all over the dinning room hall. In shocked everyone! We all just looked at each other for a moment. “Are you ok Aiden!” Dad helping him get to the bathroom. The other mom asked if I was still ok with play date, “Oh yes” I said “it will keep Declan busy”. We had Aiden lie down. Josh and I went outside to tidy yard for fall and the other boys were playing. An hour or so later Aiden came out, said he had headache, we gave him tylonol which was becoming a regular occurrence. We had started giving him tylonol almost every morning, this to a kid who HATED taking any medicine was now asking for it? As I sit here writing this, I can picture him clear as day. Sitting in our backyard, a pink plastic anderondac chair, green grass over grown, sun shinning down… “I don’t feel good” “do you want to go to doctors” ” yes” “ok let’s just finish cleaning yard” “can we go?” “A couple more minutes, a couple more minutes” Cantons mom came and asked about Aiden. I said we might take him to emergency, I just feel like they are going to send us away as it’s just a virus and they won’t be able to do anything. Cantons Mom tells me her trick to see if her kids really need to go “tell him that we will probably need to wait a really long time. We could either stay at home and watch a full movie or more or sit in the waiting room” that is how you tell if your kid really feels sick. I think this plan is ingenious! I tell Aiden and she was right! He oped out! Why did I not take him in! Was cutting the grass that much more important! I think that was the last time our grass got cut.
I continue to recall certain dates to the nurse August 30th, my oldest nieces birthday party… Aiden is still not feeling 100%, not wanting to play with the other kids, I think oh maybe he is just shy or uncomfortable. At this point he does not look his normal self and he does seem very weak and wobbly. Sitting at the table he says he has headache as I try to convince him to go play. I go get him a children’s Tylenol (can only find chewable in my sister in laws cabinets) he takes the first and tries the second and BLAH all over the table just shy of the pink and chocolate cupcakes arranged in the shape of a horse. I bring him to washroom clean him up then to lay down in spare room. He says he does not have to puke anymore. I tell him to just lay down a bit. 20 mins later he says he feels better, just in time for dinner and cake and presents. Why did we not put this all together? (I have not even put this ALL together until right now as I write this, October 8th) Why did we not just leave the party? My kid was obviously sick!
School starts September 6th… kids are ready, little brother Declan so excited to start J/k and to go to “Aiden’s school”. The night before I could not sleep. I kept thinking about all the difficulties Aiden had with school. Since kindergarten I felt he got “labeled” as defiant, angry, trouble. I thought about my meeting with the pediatrision and she thought he had a mild learning disability. Maybe a fresh start would be good. My nieces went to the school across the road, it would also be nice for Christmas concerts or having to pick up kids. I had checked out other schools the year before but procrastinated to long. I had the pit growing in my stomach. I told my husband in the morning all I had contplated the night before. He got angry saying, “You don’t do that the first day of school! … You are going to do it anyways”. The pit turning into growing knot in my stomach. I dropped the boys off at “Aiden’s school” that morning, took the first day photos, and with big hugs sent them to the first day of school. I then drove across the street to ask how I register for another school and when could they start. It turned out to be quite easy and fast! The principal was very cheerful and tall. I could bring them for a tour that night and meet the teachers and they could start tommorow; Easy as pie. Breaking the news to Aiden was a little harder. But we kept saying we could just test it out. No one knew he ever got in trouble at school before if would be a fresh start. After the second first day of school, I received a call from Aiden’s new teacher, Mrs R, she said he was extremely tired and wobbly, almost fell. I asked if I should be concerned and that he had a doctors appointment booked for Thursday, should I bring him in to emerg? Yes, she would. This was also my first day back to work after a year off for Maternity Leave. How could I cut out of work early on my first week and I had just been promoted to General Manger (I hate these selfish thoughts). I called my husband to get Aiden and bring him in. After I finished work I met them at the hospital in Almonte to check up before picking up other boys. Seeing him in emerg with freezer stickers on his arms to get blood drawn, he did not even seem scared. He knew he was pretty sick. They went for X-ray of his back and neck just before I had got there. They gave him a orange popsicle. He was pretty happy. I left to get other boys and waited at home, when they finally got home my husband said everything looked good. They sent a referal for a ultrasound on stomach and we still had Family Doctor appointment the following day, which my husband would take him for.
I get home from work the following night, I asked how the appointment went. My husband replied “Aiden was so tired, he fell asleep in car, I carried him into appointment, he slept the whole time, I carried him back to car and then inside when we got home” he was still sleeping…. I had promised him we would do something special tonight as he was still upset about switching schools and not feeling well I thought it might cheer him up. I had originally thought of taking boys to FunHaven but was smartly talked out if it by my manager at work, a veteran mother, with always wise advice. We shook Aiden awake a bit to see if he still wanted to do something? We suggested Swiss Chalet, quieter and a heck calmer then FunHaven and Aiden’s fav restaurant. We went out and had a great night! Aiden was fine being his joking self. Both boys trying to decided what to pick from the treasure chest. So normal.
The next school week followed, there is a couple phone calls from principal. Every time I see the number on my phone I think the worst, oh god what did Aiden do? Yell at teacher, trash a classroom? But no he says Aiden is a great kid! Adjusting well, Great sense of humour, he lost another tooth, he seems pretty comfortable in the school. They are concerned though he very tired. Sleeping 2-3 hours in afternoon. He is very unbalanced and they are concerned about his safety. I tell him the family Doctor said it was viral fatigue, could last a month in children. We have an appointment with ultrasound on September 23rd and follow up family doctor on 30th.
This is the long version of what I tell nurse but I give her the dates I have marked and also say that most recently his eyes look different, his face some how it’s hard to explain. I feel like I sound crazy. The nurse says we have said a couple things that the doctor finds concerning and she want to send us for MRI it will take about an hour. We head down to MRI they ask Aiden what movie he would like to watch, Smurffs he chooses. We make sure we have no medal on us, then they get Aiden into the table. Wrapped in warm blanket. (Until you have been to hospital you will not know the simple pleasure of the warm blanket) they give us head phones because the machine is very loud they say. “You ok buddy? Mommy is right here” I say ” and after his we can go to the toy store” Aiden lays there and goes into the machine. I sit beside him and continue to read “girl on the train” there is no clocks in the room but I guess 20-30 mins later they come back in room. They want to put “contrast” in to get better picture. They need to put an IV in him. The first of many pokes and prodding. I sense the shift in the air when then”tech” comes in. Something has changed. No more eye contact. I ask if everything is ok. He is just a tech does not know, the neosergron will have a look. I know. I do not know but I know something!
Back in the exam room the doctor comes in. The first thing I think is she is very pretty, looks like a TV doctor. She tells me they found something, I don’t remember now if she actually said tumour in front of Aiden or just “something” and it’s a blur… “Are you joken?” I ask, no sorry she is not. It’s a blur… where is my husband? Get him to come here… Nero team is going to talk to us he may need surgery right away. I call josh, tell him nothing, not to panick, just come to CHEO. I call my brother to pick up Declan and Lynk and tell dad. My dad is on his way. A blur… Doctor comes back in, “how far is your husband?” I call him again, he is 8 mins. A blur… they have a Child Specialist with Aiden watching a movie asking what stuff he likes.” Josh get there, panicky but I remember being surprised he was keeping it together. He meet Dr NZho for the first time. A little black doctor, I can’t guess his age not old but not young. He is the neosurgeron. He explains they found a “bad guy” on his small brain and that is what has been causing his “wobbliness” and headaches. We sit in front of a monitor but before he shows us the MRI photos he shows us images of a good brain from a text book so we have reference. He explain different functions of he brain. Then he shows us the MRI. First thing I say “that looks big!” He says it is relative, I know better. A blur… he takes us through a sheet of all possible outcomes of surgery, from loss of life, paralysis, to headaches. A blur… he is getting his team together if he can’t get the best team together tonight surgery is set for first thing in the morning to remove as much as possible, to relieve pressure and to be able to send to find out its “name” for a course of action. We will most likely be in the hospital for the up coming week, this was now three weeks ago. September 16th we got a new life, our life will never be the same, we did not ask, we do not want, but we have no choice.
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.
Stephanie (aka MamaOutpost)