3 months. honesty.

I try to remember that somewhere, someone wishes they had the things that I have. Not the loss, truly, but what came before.

Sometimes it feels silly to say that. Someone wishes they had a tiny baby boy who they barely got to touch before he was taken away and then intubated and filled with drugs to keep him alive... Only to have his eyelids flip inside out for no reason and not be able to see those little features you saw for a millisecond when he was born for another month... and then to be told surgery was for nothing and you should let this baby who you barely touched die... And then to fight...

Nobody wishes for that. It makes me sick to think about all the times I wished so hard I could rip out tubes and run with my baby as far as possible from the mess that medical facilities made of my small boy.

But for the moments when he smiled, stretched out on the bed... inbetween colds and hospital visits and medicines and feeding pumps and g-tube changes and crying and surgeries... People wish they could have it.

I wish I could have it one more time. Just those peaceful moments staring in awe at the little boy that we fought so hard for.

The last four months of Gabe's life were my worst nightmare come true.

I can be honest about it. I am not grateful for those moments. I felt like four months of his life were stolen- watching my son be still- and then wake up so drugged that he couldn't lock eyes on anything... not me, nothing.

Then finding out that his brain suffered atrophy, and that he might not return to us again in that same baby way... and then after all that fighting- to find a stupid infection was taking over his body... to have to make the choice to let our son die as peacefully as possible instead of letting him die a long drawn out death.

I hated that hospital room. I hated being there, helpless to do anything. Feeling nothing in return of my hand on his. Watching his oxygen saturations drop to those of a dead child and then have them fixed only to watch it happen again... To watch him die over and over and over.

It was close to torture. To long so badly for him and to not be able to hold him against my skin or to feel his body against mine. To wish to only see his eyes open and look at me and to be continually denied that... to be denied his smiles and giggles for the rest of my life.

It was torture.

And I had to keep reminding myself that it would all be worth it when he was whole and he was complete... But I didn't know if he would be 'Gabe' when it was all over or if he had forever lost that spinny sweet baby in my pictures.

Judah didn't do well in Boston. Maybe he could feel what I was feeling- but his tantrums were so often and so bizarre that I felt like I was failing as a mother.

I felt like I was failing as a mother to two boys, not just one- and I felt like I was losing faith that God's hand was going to move and rescue my son.

But I hoped, and I clung to the belief that we had chosen what was right for Gabe... Hope.

Boston was beautiful, and that is what I was most thankful for. Though my world felt like it was falling around me to pieces, to walk around Boston was to take a walk around peace and beauty and love... Painters on the street, every building looking like the architect who built it fell in love with it.

But then the sting of empty arms.

Watching Judah sleep was the most peaceful time for me, knowing he was safe and I was doing my best to be a good mother to him.

But he needed more, which is why I took him to Boise. I needed him to know everything would be okay. I needed to know everything would be okay.

Boise held no answers for me. I slipped into a numbness that could also have been self preservation. I kept on trying, kept on trying... But everything felt like it took so much of me to do. Getting up, showering... I was in an emotional coma.

I felt God, but his whispers were always only a gentle breeze of love to me... Not a gust of hope or of promise like I had felt when Gabe was born.

I felt worthless in those moments... Knowing that as a mother I could not save my son or make him well.

We had moved Heaven and Earth with our insurance company trying to get Gabe to Boston, went through every route... been turned down and rejected and then started from scratch.. Only to find that this route would lead to the loss of my son.

After watching Gabe slip in and out for four months, never completely coherent or himself... Five months rolled around and we had grieved Gabe's presence. We had not grieved the hope that he would return... But we no longer had a baby at home.

We bought him little outfits with a great amount of promise and hope attached to them. We were told of visions of Gabe as a bigger boy... and I saw them too in my heart. I saw my baby toddling around.

So when Gabe died, packing up those outfits was the most painful moment of my life.

Those hopes and dreams were gone... and grieving for them was more than a moment.

Grieving for them would be for a lifetime.

Every baby with Down Syndrome is Gabe to me. I want to run up, to hold them, to kiss them, to get to know them like I would have gotten to know Gabe. I want what I will never have- the boy who we fought for.

But moving on has proven difficult. A part of my mind is still in that self preservation mode, and breaking out of it is not only exhausting but impossible.

Relationships were taken off the table for us for a long time. Our sole focus was Gabe and Judah and keeping Gabe healthy and Judah happy. We spent very little time with other people, and we forgot how to have healthy relationships with others.

So distancing myself has become so much easier than trying, and I know breaking out of the cycle will be difficult beyond measure.

To break through the toll that the past year and a half had on us will take a miracle on it's own.

So heres to miracles. and honesty.

1 comment:

Mandy said...

I love you for your vulnerability, Julia. It ministers to my soul in ways I can't express. I am crying so hard as I read your words...tears that have needed to fall but just haven't come lately. It's so hard to walk this road, and I am so sad that you have to walk it too. "For now we see only a reflection as in a mirror; then we shall see face to face. Now I know in part, then I shall know fully, even as I am fully known. (1Cor13:12)"

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