Thursday, March 30, 2017

What Was I Thinking

What was I thinking...

It's been seven days since I've spoken to my daughter. Seven days without what's your blood sugar, did you bolus. Seven days while she is 1,759 miles away. And not a word. 

But this is a good thing. I couldn't be more proud of her mission focused heart. She has overcome so much this past year. 

When she started asking about going on an overseas mission trip I wanted to tell her it's not possible. You have a chronic illness. You'll be to far away. I took the cowardly way and left it up to her doctor. And to my dismay the Dominican Republic was one of the few places they would approve her to travel to. I was expecting (okay I was hoping) they would say no. 

We applied for a passport. We packed her bags. One filled with medical supplies. We reviewed emergency pump procedures. Obtained a letter to travel from her doctor. We said good bye. 

My heart overcome. She's growing up. 

In two days she will be flying home. In two days she will have proven how strong and mature she is. She will be home with memories of a lifetime. She will have proven to herself that living with an illness has it's trials but she can still embrace a life full of adventure. 

What was I thinking...

I'm thinking she is going to be what I've prayed for her to be. 

Kind. Compassionate. Strong.

Not Fair

My brain has been a little foggy but for once Lupus is not at fault. Welcome to Celiac Disease. 

It turns out it's been around awhile. My digestive track is damaged throughout. I've lost the ability to absorb nutrients. The treatment no gluten. Never again. Not a bit. No cross contamination. It will take at least 6-8 weeks for healing to begin. Some of the damage unreversable. 

I begin a new normal. New normals are nothing new for our family. Part of the process of accepting a new normal is anger. 

It's not fair. 

Life isn't fair. I can't even count the times we've tried to explain to the kids why some people suffer with illness and others don't.

So here I sit crying because I'm exhausted and in pain. I made myself a gluten free birthday cake but I used the sifter which I last used to make bread. I've been miserable all day. All because I cross contaminated. Turns out even the smallest amount of gluten will make me sick. It tasted okay but it wasn't the same. And now I'm crying . Then I'm angry because I'm crying because I'm angry. 

I seem to have been here before. The whole sunscreen and hat rebellion. 

I remind myself it's okay. Be angry. Acknowledge my frustrations, but don't dwell there. Dwell on what I've overcome and what I can overcome. 

It won't be easy. So dwell on what I know, I've learned to live with a chronic illness. I've overcome fears, anger, disappointments, and frustrations. 

I've chosen to love a life that is just not fair and I'll choose to again.

But really...I can't be in the sun and now no cupcakes. I really love cupcakes. Maybe it's a good thing I can't have fluffy, moist cupcakes. Nope. Not there yet, not fair.

I really, really love cupcakes.


Saturday, March 18, 2017

Stand in the sun, breathe in the woods

Being in remission, I am gifted each day with limited pain. I take advantage. I stand just a little longer in the sun. Lose myself in the woods. Listen to Jim and the kids intentionally. Cancel less with my friends. 

We aren't guaranteed any time here. I could spend every moment questioning why I am here and my sister is not.

This year I turn 40. The year I was told I'd never see. 

My senior year my youth group leader asked all of us what we wanted most in the future. My answer...I want to play bingo. See the sunset from the porch. I want to be old, sit with my friends and family and reminisce. Share memories of those we've lost. The trials we faced. The lessons we learned. The gifts we gained. 

I knew from a young age tomorrow is not guaranteed. I'd lost my sister. And now I was given a time line. Have you made arrangements? The social worker will be in to help set up hospice. I was 21. We somehow were blessed with more time. We had a beautiful girl. A year later I was being told to have an abortion. Time with this beautiful girl or a chance to have another child. Do you want to see her graduate? You're body will give up before your 40. The doctors words. I chose the risks. More Lupus flares, harder days. 

And here I am. 40. 

My senior year I saw myself at 40 with a career in lobbying for health care in Washington. Maybe I'd be married have a couple kids.

And here I am. A very proud lunch lady, married for 18 years, and two kids I'd risk it all for again. My body is damaged. Brain function lost, where did I put the milk, did I know you, did I put my pants on. Arms and legs that forget how to work. 

Every pain worth it.

Tomorrow's not guaranteed. I have today. 

A day to love the hard to love, forgive the unforgivable. Stand in the sun, breathe in the woods. Argue and make amends. Watch the sunset. Love.