Saturday, January 11, 2014

When It's Hard to Hope

There are times in my journey that it gets hard.  That I just want to get off the merry go round of life and head to a beach or something.

This week has been brutal.  Marvin recovered from Christmas break and started school again.  He was not happy to go.  All of his anxiety took over and he spent most mornings crying and afternoons holding onto my waist and crying.  Why doesn't teacher like me?  Why can't I understand the words?  Why can't I do the work?  Why can't the cat eat out of the refrigerator?  O.K. the cat didn't have much to do with school, but it kind of sends mommy over the edge to see the cat being fed out of the fridge.

We also have had unpredictable weather.  I miss living up north in a way.  The people didn't cringe over ice and snow.  So we missed school.  While I am typing this it is raining and school is closed.  Well it was a bit of ice mixed in earlier and I don't begrudge the school for being cautious and trying to avoid lawsuits from people when you have a child who needs routine and structure and you yank it out from under them it doesn't bode well.

Cary Lynn picked up a really rotten cold that has been going around causing her to feel generally miserable.  And cranky.  Plus she doesn't want to eat and we go to a new GI on Monday.  So that will be loads of fun.

To top off a hard week we went to neurology.  That is usually one of my favorite doctors.  I like who we have.  She is positive and usually pretty great to visit.  And after a fun trip to the pediatrician yesterday because of Cary's bad cold (we have to do lung checks to make sure her lungs stay gunk free) I was ready for this visit.

But this time was different.  This time we talked about Cary Lynn's MRI.  In depth.  I think I have gone over some of her unique brain functions a few times.  But here is what I walked away with:

1.  Her brain is injured.  Severely.  Picture a brain.  A healthy one.  Now imagine that it has been subject to massive damage.  Tons of mini strokes, excessive fluid, and hemorrhaging. These damages are irreversible.  They simply can't be fixed.  No surgery, no vitamins, nothing.

2.  Cary Lynn functions may be limited.  I knew that.   Her cerebellum is also affected.  She may never walk.  Or be able to communicate.  She may function at much lower levels.  She has the possibility to have seizures at the drop of a hat and her shunt can stop working at any time.

3.  Because of all her complexities her life span may be limited.  Very limited.

I am not God.  I really don't want that job.  But that last one was hard to hear.  It was like stabbing a knife in my heart and soul.  Then I was blithely told that there was not much they could do, see you in six months.  I really wanted to snap back, if my child is alive, sure no problem!  But I didn't.  I just made an appointment.

The thing is Cary Lynn is complex.  Marvin is complex.  The blu-ray player in my house is complex.  Life is complex.  It is hard to hang on some weeks.  But I do.

I did take away a few positives from the visit.  Cary Lynn is doing more than they thought she would be able to.  After poking at her a few times at home and feeding her cookies in her mesh she certainly didn't act like she was about to pass into the great beyond.  So I think we are good.

My children are fighters.  They have come so far.  I know that they may not be able to do things.  I know that they may have limitations.  But am I gonna tell them that?  Hell no.  At the end of the day we don't know what their futures hold.  The doctors have all admitted that.

It can be hard to hope.  It can be hard to have the dreams you have for your children come smashing down around you.  But you start to build new dreams.  I can't loose my hope because if I do my children loose it as well.  And I can't do that to them.  Or me.

I also can't dwell in the land of tomorrow and what ifs.  It will destroy me.  So I choose to live day by day, minute by minute.  I will take it as it comes.  The good, the bad, and the dirty diapers.  Because I refuse to give up.  I refuse to loose hope.  My children show me strength and courage day by day.  I owe it to them to do the same.

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Amy Fields is a mother, teacher, and busy advocating for her two kids!  You can find her at her blog:  Many Kinds of Families


  1. That's how it is in our home. My daughter pushes us to hope because she is a fighter. Because she is medically fragile, any number of things can shorten her prognosis at any time. Her life expectancy is already hanging in the balance. So we treasure every minute, every hour, every day. You are not alone. Hang in there and thanks for the encouragement by sharing your story.