I am not a writer. I don’t enjoy it.  I do it mostly because my therapist and some of Faith’s doctors had suggested it.  I find that most of the time it makes me feel everything, more than I like to feel it. I’ve been contacted on a few occasions about putting my writing into a book. One of the people who gave me this feedback, a writer herself, said you have so much story to tell.

But that’s just the thing, to me it doesn’t feel like a story. To me it feels like taking a picture of whats happening inside of our lives, a picture for everyone to see.  Its something I think about, all the time, oh, I should write about that, but honestly, sometimes it just takes too many of my emotions to do so.

Lately, its Faith.  She’s the one who really seems to benefit from my writing.   She reads the blog and usually laughs, but sometimes she cries….its good for her I know, but really sometimes, I feel way too much.

I like to update people through my blog. Because for the love of all the things, the grocery store always ends up being the place where I see everyone, and almost inevitably the conversations turn to how Faith is doing, or even more often the assumption that since they haven’t seen pictures of us in the hospital, that she must have been cured.

I know, we’ve been doing this forever, but I hate this kind of talk.  Because if you aren’t in what I call my little circle, chances are you need to be updated…….but for some reason, still all these years later, the fact that I can’t say, its a miracle she’s all better still makes me feel like someone is ripping out my throat.

I, for most of my life was known as the eternal optimist……I was the annoying person who smiled and greeted every stranger I walked past……now, I am the person hiding behind the jug of milk.

I grew up in a small town, I still live in that small town and I am surrounded by people from just about every single stage in my life…..they are everywhere.   Nearly every time I am in the grocery store I spot one of them…….. someone I really liked in school, but someone I would have to choose honesty with. So, like any reasonable person might do, I use my environment to escape….the milk cooler.  Now,  the cooler being clear isn’t protection enough so I have to hold up a milk jug, to cover my face.

Now, I can tell you, that thankfully I am at a stage in my life that standing with my head in a milk cooler doesn’t feel awful.  It actually feels pretty good, except for when that person who your hiding from, runs into your high school teacher and they decide to catch up just steps behind you.   That teacher who is a loyal reader of my blog, caught my eye…..and knew I was trying to avoid them, pushed the conversation to a different area, and winked as he did so.

Interestingly, I’m not sure I felt any better about the missed interaction.  That same night, I had to come to the rescue of one of my fellow medial moms.  Ok, not the literal rescue, but she definitely needed me. On her facebook she posted about the fact that she would not allow people to make her feel bad about continuing to use a straw for her medically fragile child……Person after person chimed in with solutions for her…..suggestions for her…..products for her…..so she could discontinue her plastic straw use.  These are her friends, people that love her…..and it really made me mad.

This mom, has a child who has defied all the odds…..it isn’t easy.  Keeping her healthy is a struggle, every single day of her life and more work than any mom of a healthy kid could ever possibly imagine. Med after med, surgery after surgery, specialist after specialist. And they want her to use straws that she has to sanitize…..and I am wondering, when would she find the time to do that, and I wonder if ID would want her doing that…..

Then, it hit me. THEY DON’T GET IT. How can parents of healthy kids get it…….

That’s what it is, you can’t possibly.  When I see you in the store, when I’m hiding from you it’s that you don’t get it and there is no way for me to explain it to you.  Now, if we had time, like we had coffee, or sat for a while, I could let you in.  But its just a glimpse, I can’t possibly explain where we are, its pretty inexplicable.

Last week it was Faith struggling with not having classmates and I was struggling with all the kids in homecoming suits.   And Will was realizing its almost flu season. On top of a new Supreme Court Justice that isn’t a choice for kids with chronic life threatening illnesses and three insurance denials. Her health, has been stable, and she is aways in the hospital by this time of the year, so obviously, homeschooling is worth it………right?

Sometimes, I just want to sit across from Dennis and drink a glass of wine and listen to him talk about football…I don’t want to verbalize everything in my head because, its the same thoughts over and over again.

I am grateful for the journey. I am grateful that she’s here with us, and I am blessed to take care of her.

Faith and Will see an amazing psychologist.  Truthfully, she’s probably one of the finest in the Nation.  Working with her has kept the kids well.  Mentally well.  They speak up when they are sad, scared, angry…..happy.  She validates the fact that, the situation is hard, and making the best of it, is the best we’ve got.

She’s also inspired me to think about the wellness of the caregivers for these amazing children.  We are not taking care of the moms and dads and siblings of these kids.   My son gets physically ill when he walks in the elevator at Mott. I spend way too many nights awake and worried about health care and how to make sure we do everything the best way.

To be truthful, There are some people I don’t hide from, my medical mommas……I can tell you I would do just about anything for them.  I don’t have to say much, because they just know.

For a couple of years now, we have been trying to start a foundation. The Will and Faith Foundation.   A foundation who assists the families of chronically ill children.  The WILL to carry on and the FAITH to know you can…… Its a great plan, but foundations take time and money.

Until we have the time to get the foundation started we have started work on a conference for parents and teenage siblings of chronically ill children.  It will be a one day conference in Ann Arbor.  The purpose of the conference, SUPPORT.  Mental health support, resources, support groups, training, care giver self-care…..

We have lots of work to do, and many different opportunities for volunteers.  We are looking for a non-profit organization to work with to help with funding the conference.  Make sure you let me know if you want to get involved.

The thing is, I know, with the right training, I won’t have to hide. I will know what to say, how to field the difficult questions that make me feel like I’m going to start crying in the middle of the grocery store. Until then, if you see me hiding behind the milk jug, its me, not you.

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