For all of the moments that I have ever felt like I was down in the trenches as a parent, there has never been a moment quite like the moment my cell phone buzzed and there sat a message from one of my dearest friends, a fellow Mama, telling me that she had just found out that her beautiful, little daughter has leukaemia. It instantly put absolutely every worry, fear, doubt I had felt over the past months into complete perspective. In that moment every blessing I have was thoroughly counted. The news hit me harder than it would have before I had Sav, I think. I could not imagine the fear, the sadness, the everything my dear friend and her amazing little family were about to experience. I thought of Sav, how fragile she still is, and about every silly little fear I have had and how not even one of them can compare. I did not know what to say.
Some months have passed now since this terrible bit of news flashed onto my cell phone screen and I am incredibly honoured to be able to share a guest post from this beautiful, strong, and inspiring fellow Mama and best friend of mine ...
As a Mama with a child with leukaemia there are things that, in time, she has been able to get used to, but also ... so many that she doesn't think she will ever be able to ...
It has been almost 6 months now that we found out my three year old daughter has leukaemia. I'll let that sink in for a moment. Three years old. Cancer. I can't even begin to tell you how scary it is. I think fear is the main emotion that permeates my days and nights. At the very beginning, I was just going through the motions. Surviving. Making sure my kids (I have a one year old as well) ate and slept and got the care that they needed. I remember a woman I had reached out to - a fellow cancer mom - asked me whether or not I was adjusting to a "new normal". I was so not there yet! I remember thinking to myself, "How can any of this ever become normal?"
And yet. So many things stayed normal. A few months in, I remember talking to my Mom and telling her how I didn't really understand why everyone kept telling me how strong I was. That so many things were still normal. So many things are still so normal to this day. We eat meals together as a family. I change diapers. I get the kids dressed. We play together. We go outside. We get in the car and go places.
But I am now realizing there are some things I don't think I will ever get used to. The fact that I have to wear gloves to prepare my daughter's chemo to make sure I don't hurt myself, knowing full well she has to INGEST the poison is still mind-boggling to me. The fact that we can't go out in public or play in sandy playgrounds because the chemo weakens her immune system. The gripping fear each time we go to the hospital for a lumbar puncture and she needs to be under general anesthesia because of all the risks associated with that. It is so scary I can't even write the words down. The fact that she will always be that girl who has or had leukaemia. I am hopeful that she will take it in stride and that it will make her stronger, but as any parent, I want my child to fit in. I want her to feel accepted and I know how much harder it will be for her because of her illness.
Some things will come back eventually, like her hair. Our outings, our travels, our adventures as a family. For now though, the adventure ahead of us has some stops along the way that we would never have asked for. There are a things we have to conquer that were never on our bucket lists. We go forward in fear and in hope ... adjusting to our new "normal".
"...All those days in the sun
What I'd give to relive just one
Undo what's done
And bring back the light
Oh, I could sing of the pain these dark days bring
The spell we're under
Still it's the wonder of us I sing of tonight
How in the midst of all this sorrow
Can so much hope and love endure
I was innocent and certain
Now I'm wiser but unsure..."
- Adam Mitchell "Days in the Sun"