A Moment of weakness

I realized after I finished writing the following post that it might be a little scattered. 

Hence the title.

But for what its worth, here it goes.

As my friend text me telling me she bawled her eyes out as she watched her one year old baby girl get put under general anesthetic for a minor surgery, my heart broke for her. 

It seems like yesterday that I was in her exact shoes, holding Jaidyn's hand as she lay on the operating table about to go limp as the Dr's and nurses prepare her for what would be the first of many procedures and surgeries to rid her body of this horrible disease. 

She says to me "how do you do this all the time? Does it get easier?" 

It makes me mad. It angers me big time. When I answer her. Saying "yes, it does get easier." 

I think?

Why am I ok doing this? Why has this become normal? Has it become easier?

A billion questions start filling my brain.

But the answer is actually really easy.

Having a child who is very sick gives you no choice. You have no choice but to be their strength, their rock, their everything. Its not a decision you get to think about. You fight, you figure out a way to make life as easy, and as comfortable and as safe as possible. So that their tiny little bodies can beat the terrible disease that they have unfortunately had to live with. 

We have been reassured that the stage of chemotherapy that Jaidyn is currently in "Maintenance" is the easy stage. The safe stage. Where life can start become normal. so we have been doing our best to make it as normal for her as it can. Swimming lessons, dance class, daycare and so on. 

First day of Ballet this year

Passed her fist level of swimming!

Other than every evening that she takes her oral chemo and the once a month we go in to the to the hospital for blood counts and different drugs in her line or in her spinal fluid, cancer is easily ignored.

Most people who meet Jaidyn, comment on her cute hair cut, and that I was so brave to cut it that short. Little do they know its just the results of chemotherapy causing all her hair to fall out. People are shocked if I tell them about it. No one believes me because she seems so "normal".

And that's what brings me to the next part of this post.

It is rare for me to not speak out when I'm struggling. It's something a lot of people have a hard time with because they are afraid of rejection or looking stupid. It's something I admit has been lacking on my part over the last year. It may be because I wasn't even sure what I was needing help with because support for parents with children with cancer shouldn't even be "something" that needs to happen.

It wasn't until I was speaking with another mum from the clinic who's daughter has the same cancer as Jaidyn, that we realised something needed to change. As we were both in the same boat with living out of hospital, feeling the lack of support, since we aren't around other families going through the same thing. Feeling isolated, sometimes literally as low immune systems cause said isolation. Both wishing for more resources in the community to get through the tough times and the different transitions we face as parents living with a child with cancer. 

A Facebook page was created that has honestly been a life saver for questions that can be answered by other parents. Advice you can get from them, since they have been through it or are currently going through it. 

Because we are local, we sometimes always feel disconnected from the community or "family feeling" you might get when living in the hospital or such places like Ronald McDonald House (RMH).  Not that we are complaining that we get to sleep in our own beds every night, but we do feel removed.

Being able to sit down with other families facing the same battles, sharing stories and advice while in the midst of treatment of this horrible battle, would be such a life saver. As much as the online chats help, the thought of being able to do this once a month together as a group, have dinner, share in person how we might be able to help each other could probably help more than anyone thinks. 

Being a single mother for the most part of the treatment has been lonely. Especially when her counts were low and we couldn't even go out to the grocery store to get food for dinner. Not saying we didn't eat dinner every night., but having some sort of program in place where dinners were provided or other families could get together as stated above would be more beneficial then words can express.

Who knows, there may even be such programs in place. And this is kinda my point. I have no clue about it. And I don't think it should be my job to find out what support I could be receiving. Because my job is to be the rock. The strength, though the treatment. Those other things should just fall into place for families like us. 

15 months of living with Cancer, I wish I had voiced how I felt earlier. I wish that I had thought of this simple thing like this Facebook group 15 months ago. A lot of things might have been much much much easier.

I guess I was a bit preoccupied. 

But everything is worth it when I get to wake up to this face every day.

Modelling her new lipstick (self applied)

Heading to Walmart. Jaidyn wanted to fit in