There is no hand book. There is no tutorial. There is no way to prepare yourself for situations like ours. For the kindness of strangers. For the urgency of a short life. And for the anger and pain of watching as each day passes, knowing its one day closer to losing your child.
I’m not perfect, I’m far from it. But I am trying my very best to work through this. To reply to emails, messages and posts. To live in our moments and not in the impending darkness that is our future.
I’ve forgiven what I can and I’m learning to forgive the rest. I’m doing the best I can to make sure I give everything, and yet leave something for myself. I fear if I don’t, I’ll be left as a shell. And when all is said and done, I need something left for myself, something to hold Onto. Because no matter how badly I don’t want to live if lilee is gone, I have to, so I need a piece of me left so I can keep going.
Overwhelmed and underprepared is the only way to describe my demeanor over the last couple of months.
I am amazed by our “Love for Lilee” community, I am destroyed by my daughters prognosis and I am determined to dance in this rain. This life is hell, and yet we have the opportunity to do so many wonderful things. Our time is limited, and yet we are doing more in 3 months than people would in a year. The confusion is paralyzing so I try and ignore it completely, but life has started to slow down, more time is being spent at home, and my confusion and pain are catching up with me.
I find I say “I’m okay, really I am” a lot these days, and I am, and yet, I’m also really not. I just don’t know how to LIVE with the anguish, so I don’t address it often. Although I’ve never been the type to avoid much in my life, I have worked my ass off to try and avoid feeling the feelings that are building up inside my chest. The ones that make it hard to breathe, the ones that make it hard to move.
All it does is make my tolerance low, really low.
It makes it hard to navigate through a normal day, and adds an unnecessary level of difficulty to do the simplest of things.
I wouldn’t call it suppressing, I talk about how I feel, but I also couldn’t call it expressing because the emotion is hidden from the surface. I think the only way to describe it, is surviving. I’m surviving in the only way I can think of.
Lilee is getting weaker and things she use to be able to do easily are now a struggle.
Seeing her frustration among the pain brings the most soul crushing devastation. Can you imagine once being able to jump on a trampoline, LOVED jumping up and down, rain or shine, then one day not being able to, not having the strength, with no understanding as to why. Can you imagine how her heart must ache, not understanding why she’s getting weaker and more tired. Why she has head and body aches. Why mommy can’t make her feel better, when all it use to take was a kiss..
All I want to do is take her pain. Take her cancer. All I want to do is tell her it will be alright, tell her I’m so proud of her for the fight she is fighting and have her understand..
Every time Lilee stays the night with her dad, I can’t stop the glimpse it gives me into a life without her. Even though its only a fraction of the pain and loneliness, it is unbearable.
In the past month or so, every night if I wake up while she is sleeping, I whisper softly to her, trying to explain what she means to me, how important she is to me and how proud I am of her. All the things, as children, we desperately want to hear our parents say and as we get older, we understand what those words mean, especially pride. It’s like hearing a thousand “I love you”‘s.
As I lay here, in a lilee-less bed, I realize that she will never understand that feeling. I will never be able to express to her how proud I am of her. I feel lost and useless. As I sit here bursting with pride, I’m afraid she will never understand that She won’t reach an age to grasp that concept.
I do know however, beyond a shadow of a doubt, that she completely and fully understands love, and if I had to choose anything for her to know, I would choose love.
It’s been a very difficult couple of months with Lilee’s dad and I being separated. Even though it has been over a year, when stress this intense is put into an already stressful relationship, emotions run high and situations can get out of control. We are both doing our best to stay amicable for Lilee, and for ourselves, but we are split up for a reason, and asking any two people to spend a ton of time together after ending a relationship is playing with fire. Him and I will continue to do the best we can and we put happy brave faces on for our daughter because its the right thing to do. We are both very fortunate that Lilee has two families and two communities who are standing behind us, holding us up. It gives us both the strength we need to create TWO lives full of love and joy for Lilee-Jean, and no matter how difficult it is, we both know that no matter where lilee is she is surrounded by love, and that has to be the only thing that matters.
This past week I called upon a handful of houses on my street to help me bring Halloween to Lilee in August. With a short write up, a box of chocolates and a hand made pumpkin ornament, my friend went door to door asking my neighbours to allow us to trick or treat at their door on the 14th. They had the option to dress up or decorate their doors, but because it is August, they were under no obligation, and I had no expectations..
We began walking down the street with 30 dressed up kids and adults and I started looking for the houses that had my little ornament hanging on their door, showing they were participating, and my breath and words were taken away by the site of pumpkins, black cats, witches, and ghosts. They were hanging from porches, spookily peeking out of gardens accompanied by our smiling neighbours, handing out candy, all dressed up for Halloween in August. My heart overflowed with the love that was being extended to us, to Lilee.
No one had to dress up, or pull out their decorations 3 months early. No one had to do anything, all I asked was to hand out some chocolate I provided. And yet, these strangers, my neighbours, gave Lilee the gift of a true Halloween.
I have learned to keep my emotions in check in public, vulnerability isn’t my strong suit, but I was brought to tears because of my family, friends, and my little street, on the mountain in Abbotsford, who opened up their hearts to us. I am forever grateful, and forever indebted to them for helping me give my daughter the gift of Halloween, when she may not live to see another one. And as the rain began to fall upon our costumes, I looked up to the sky, welcomed the rain, and with Lilee in my arms, I chose to dance.
The weekend of August 23/24/25, Lilee-Jean will be having a Christmas Eve, and Christmas morning with each of her parents. Both her dad and I have very special plans to make this the best two Christmas’ s a girl could have.
I will continue to propel myself forward with whatever strength I have left, I will continue to create experiences and memories for my sweet baby girl, and I will continue to wake up every morning with courage to face the day. Because really… what other choice do I have?
With an overflowing and breaking heart,