Wednesday, April 3, 2019

Support

Once upon a time, the lovely, incomparable Julie encouraged me to join a group, to start a blog on a site where other moms gathered to support each other. These moms had all one through unexpected experiences. Some had delivered premature babies who spent months in the NICU. Some lost their babies to chromosome issues, birth defects, still birth, prematurity. Some of us had full term babies who still spent time in the NICU and had ongoing issues even after coming home.

All of us knew what it meant to have dreams dashed, hope washed away with the strong antiseptic soap provided by the hospital.

That site was a Godsend. Julie is an angel.

In case you’re going through the devastation of a premature birth or the diagnosis of birth defect or you’ve lost a child, that side was Shareyourstory.org. It’s a support group provided by the March of Dimes. The ladies (and the few gentlemen) there are amazing.

These days, I’m doing pretty well with my status as a special needs mom. Olivia’s amazing, she’s so very much come into her own as a person, as an individual. I don’t need nearly as much support as I once did, back in the days before her diagnosis, when we were figuring out therapies, failure-to-thrive concerns, reflux, doctors who said she was ‘too pretty’ for there to be anything wrong…

But, a year plus out from chemotherapy and I find I’m floundering in my own doubt, my own status as a ‘cancer survivor.’

Am I?

Of course I’m a survivor, I’m alive, right?

But right now, I am on constant edge, waiting for the other shoe to fall. I wonder if every single pain I have, every twinge, is the cancer coming back.

My index finger hurt for no reason over the weekend. I wondered, “Can you have cancer of the finger?”

That’s so stupid.

And I know it’s normal. I do. But I feel so lost, so alone.

My family is amazing, we all know that.

But they can’t understand the constant low-level worry that buzzes around in my head. They don’t know that I still hurt almost all the time. They don’t know the fear I have each night when I go to sleep, the dread at every doctor’s appointment.

But others do know. People have been where I am, they understand and they’ve felt this too.

I need to find those people. I believe they can bring me down to a level of worry that is manageable. They can tell me that it gets better, that with enough time of being ‘well’ I’ll get past this stage, this worry, this sense of impending doom.

There are a couple of women I know from other areas of my life, one from the above mentioned support site and the other who has a daughter (also Olivia, if you can believe it) who are farther along than I am in their journey of surviving breast cancer but I hate to bother them. I would rather find a group so we can spread out the burden of support. I know, I KNOW, both of those ladies would be more than willing to help, to listen, to give me the benefit of their experience but…again, I have a hard time asking for help from those I know are already giving so much of themselves to the world.

Then again, I would absolutely want anyone who was worried or stressed or just starting their cancer journey nightmare to reach out to me. I’ve heard from quite a few people who feel breast pain or have had an actual diagnosis who are scared and need reassurance. I want to be there for those people.

So…

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