Hope

 

Lately I have been thinking a lot about hope.

The word is in the songs we sing.  It is in the words people use to encourage us.

Hope was once a word I used to express expectations for my children.

I hope Autumn finds her passion.  I hope Fischer always smiles.  I hope River goes to school.

Now, hope has a new meaning.

Fischer has continued to decline over the past two years.  Some losses are evident such as the lack of head control or the decrease in laughs.  Some take a little time to notice such as the realization that it has been a while since the last time Fischer really belly laughed or went a day without pain. 

Hope is a funny thing.

Before, my hopes for my children revolved around what I wanted them to accomplish.

I hope Autumn falls in love.  I hope Fischer is able to communicate with us.  I hope River never stops showing her emotion through her ever changing facial expressions.   I hope they all have the opportunity to play on a sports team.

Now, my hopes are different.  They aren't tangible outcomes.

I hope Fischer wakes up every morning and goes to sleep every night knowing how much we love him.
I hope he continues to always smile when Scooby Doo is on.
I hope my girls never feel forgotten in a world that is not always kind to them.
I hope I never fail them as a mother.

And I sit in a state of limbo.  I want to hope for the future.  I want to daydream about my children's destinies.
And yet, I am scared of what lays waiting for us.

 

Anticipatory grief is real.  It is also terrifying.

I am not simply grieving for his life, but I am grieving for the child I once had and all the dreams that felt so real just yesterday, the secret dreams I kept hidden in a small space in my heart.

I am grieving for little league and flag football.

I am grieving school projects and first crushes.

I am grieving for first dances and first heartbreaks.

I am also grieving for his smile and his laugh.

My once happy boy is not as happy as of late. 

 

Today we went back to remote learning for Fischer due to his increase in illness and overall decline.  I cannot be certain that he will ever be healthy enough for him to go back to school in person. 

And so I grieve.

 

Fischer’s future has always been outlined in reality.  We understand the ramifications of his underdeveloped brain.  We understand that as he gets older and bigger, many things will become much harder for him.
Yet, we never viewed our lives or his in that manner.

We are children of a loving God.  We know who the ultimate healer is.  We have put our hope in knowing that everything works out for our best.

Though those things still hold true to our hearts, we have had to face some questions that we were naively not ready for.

And suddenly every single day seems so precious.

And all we have to hold on to is hope.

Our lives have become about quality over quantity.

It is not about how much time we have left but what we do with that time that matters.