A Letter to Heaven

Dear Kennedy

You are the strongest and most lovely young woman I know. You inspired me since the day you were born on March 14 2001.

You came into this world quickly, like a little tornado. I was in labour for only 2 hours and the doctor wasn't at the hospital yet. The nurse told me “Don't push”, but you were coming regardless.

The Dr just made it.

One push and your head came out and you started crying.

One more push and your little body followed.

You were placed on my chest, and you settled, looking up at me. I fell in love with you, deeply in love. You were so beautiful and wonderful, and I knew right then you were special and would have a great impact on this world.

I was right by the way!

Seconds after they took you to do your Apgar Score, there was something wrong. It was determined your blood sugar level was low...not sure how that happened because I ate a lot! Even on the way to the hospital we stopped for a burger.

We gave you a bit of formula in a cup to get your sugar levels up before I attempted to breastfeed. I knew I would have some problems because I did with your brother, but I was determined to try with you as well. After the formula you settled down again.

Then you met your big brother. He wasn't much older than you, 18 months.

You were an oops. Best oops ever though!

Your brother fell in love with you right away. Giving you kisses and wanting to give you his soother too.

We went home the next day after an uneventful night at the hospital.

During the first week of your life I tried my hardest to breastfeed you. I didn't make milk though and put you on formula. Shortly after I noticed blood in your poopy diapers. I took you to the doctor. We switched your formula to Soy. It didn't help. We were testing your poop weekly and there continued to be blood. Your first hospital visit was on April 30 2001 at the age of 1.5 months old.

This was the first of many future admissions. You were kept at the hospital for 5 days. It was difficult for me. I was worried about you and I didn't leave your side the whole time. We switched your formula to Nutramagen hoping it would stop the blood in your poops. We went home.

A month later we were back. This time for a month. You were a very sick baby. You couldn't breathe and your lungs filled with fluid. You turned blue several times and you were on oxygen that entire time. The doctors decided to do a bronchoscopy and your lungs collapsed. You were put on a ventilator in the ICU.

You were in the ICU for a week, in a medically induced coma. I hated leaving you. They wouldn't let me stay with you like I was when you were in a regular room. But I was still at the hospital every day. Holding you for hours in a rocking chair. Not caring when my arm started tingling and going numb. I just wanted to hold you and sing to you.

We found out you were born with a B-Cell Immune Deficiency. I didn't know what that meant. For you and for me. The questions whirled in my mind.

Would you be able to have a normal life?

Would you have to live in a bubble?

Would I be able to work or go to school as I planned?

Would you be able to go to school?

Many thoughts filled my head during this time. There were a lot of tears and prayers for you.

After a week in the ICU, you were taken off the ventilator and taken out of the coma. Unfortunately we had to deal with the withdrawal effects from morphine. That was hell on you and hell on me. You were on antibiotics, oxygen and a feeding tube that went up your little nose and into your tummy. You were being weaned off the morphine but it was still painful for you. You would scream and cry for hours and I would walk you up and down the room we were in. I couldn't take you out of that room because of your immune system.

But you made it through. A week and a half after that on June 30 2001 you were able to come home.

The next few months were full of doctor and hospital visits every time you got sick. You were always admitted for at least 5 days, regardless of what was going on.

You were always happy though, smiling your beautiful smile and babbling and laughing.

You were always happy though, smiling your beautiful smile and babbling and laughing.

You were always happy though, smiling your beautiful smile and babbling and laughing.

We went on our first trip that year in December. We went to Toronto to the Sick Kids Hospital. It wasn’t a vacation by any means but we did get some answers about your health, but not all of them.

We were in Toronto for one week. And saw the inside of your room the whole time. Well I saw the cafeteria too but you were not allowed.

We found out that you had normal T Cells and absolutely no B Cells. We could do nothing to cure you. But it was decided to give you IVIG. So that is when we started biweekly IV's at the Alberta Children's Hospital. We would go every 2 weeks for 12 hours. Through it all you learned your first words, danced to your heartbeat, and thought I was hilarious. Our bond grew.

I hated holding you down when the nurses had to stick you with an IV. You always fought them. You would kick your legs screaming as loud as you could. They had to wrap you tight in a blanket and 3 nurses had to hold you down. Though you only had one little arm out so they could get the IV in, you still managed to make it hard on them. You figured out how to tense your little muscle so the vein would disappear. And even though it took a while, afterwards I would hold you in my arms, on my lap and you would sink into me. I would sing to you while you hiccuped, silent tears running down my cheeks. I hated every moment of your pain and wanted to take it all away from you.

Developmentally you were behind. Not mentally but physically. We started physical therapy to teach you to roll over and sit by yourself and crawl. But you never gave up and you succeeded in all those things. Once you figured it out there was no stopping you.

This was our life for 3 years. Then things started to change a bit with your health. The Emergency Room visits got less and less and for 2 years you weren't admitted. The IVIG was a miracle for you. You went to a dayhome, and to pre-school. You had birthday parties. You were fiery, determined and mischievous. You were curious about your world and fearlessly explored it.

I put you in skiing lessons when you were 5. from the top of the hill you pointed your ski's downhill and off you went. Full speed ahead, wind in your face laughing the whole time. Then you saw a lady on the hill that fell down. So you skied over to her and held out your little hand to help her get up. Of course the instructor had no idea where you were, but I was watching. Proud of you.

As you got older you got creative. You discovered drawing, painting, singing and acting. Hannah Montana was your favourite show and you loved to sing her songs. One Direction was your favourite band. You made a music video one afternoon including our pet bunny Rex and many different hats.

You loved animals and we had a dog, cats, fish, hamsters, a rabbit and even a gecko. You always helped to take care of them and loved playing with them and bathing them.

You were a social butterfly. You had many friends and were never afraid to stand up for them if they were mistreated. This would get you into trouble at school many times. One winter a boy in your class called your friend a “stupid girl”. At recess you ambushed him and put snow down his pants. That was the last time he messed with your friends.

Your teenage years were upon us in no time. You entered Jr. High at Father Scollen. Grade 7 was ok, but grade 8 was the start of 3 years of hell. For both of us. You started to shoplift. You started to run away. You started smoking cigarettes and marijuana. You started drinking. Then you got into harder drugs.

Even through those hard years we still had good times. We had some huge fights though. You would run and I would chase you, literally chase you around the basement. I would get so angry at your behaviour but I always loved you so much.

Through this time we found different addiction counselling programs and PCHAD in which you spent much time in. We saw psychologists, and the inside of courtrooms, and met many police officers. We still managed to get you to your hospital appointments for your IVIG. We managed to sing and dance and laugh.

We finally found the Foothills Addictions Center and this was where we learned to understand each other, where we worked out our issues, and you worked on your addiction. You quit the hard drugs and we came together again.

We were a family once more, you got closer with your brother and sister. We forgave each other.

Shortly after this I broke down, and you reminded me how much you needed me with a beautiful note written on a piece of paper towel. I still carry that note in my wallet and look at it frequently.

For 16 months we lived in peace. I would come home and you would yell out your bedroom window “Hello Willow!”

You would give me silly nicknames, but always called me Mama Bear.

You would play with your sister.

You would make endless videos of yourself and friends.

You would draw and paint.

And then you got sick again. You became more tired as the months passed. But you always smiled. You would always be quick with a joke and a laugh. You were always kind. You would go downtown on a Saturday and give a kind word and a coffee to a homeless person. You would help your friend with her foster puppies. You would always be welcoming to everyone that came to our door.

Then on July 19 2017 you left this world and it crumbled around me. You knew you had to go. You tried to tell me. To prepare me.

You said I wouldn’t have any grandchildren from you, not because you didn’t want them but just because it was not going to happen. I didn’t believe you. I didn’t listen to your words.

You told me that you could never live without me but that I would be ok without you. I didn’t believe you, I didn’t listen.

At your funeral, people who I never knew were in your life came. Teachers, friends, acquaintances. Teachers told me how they enjoyed having you in their class. One particular teacher would read with you every week and he said you were bright and an old soul. He said you had wisdom beyond your years.

People said so many wonderful things about you. How you were so kind. Always quick to compliment someone. You would always tell people to have a wonderful day. Your motto was “Think Positive”.

I learned so much from you. I learned how to be humble. That there is always more than one side to every story. Never judge someone for their actions because you don’t know where they are coming from. You never know how someone ended up where they are today.

You saw the good in people.

You always laughed and smiled even when things were bad.

You bounced back from the hurts of life. You carried on.

You were fiery and spirited and wonderful.

You taught me how to hug with my entire soul. You taught me not to be afraid of what people thought. You taught me to stand up for myself. You taught me how to love unconditionally. You taught me my own strength and perseverance and determination. You taught me I can overcome anything life throws at me. You taught me how to be truly kind. You taught me how to be fearless. You taught me how to be spiritual.

I miss you so much.

I miss your hugs.

I miss how we sang in the car together.

I miss your laugh.

I miss everything about you.

Thank you for being my daughter and even though you are not here our bond and love is unbreakable. It is forever. You taught me that also.