11.27.2012

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.

11.09.2012

Dearest little Gabe

Oh my little love, little sunshine, tomato faced boy.

How I miss you so very much and wish and hope for the moment I get to see your sparkly eyes again. Photos just couldn't capture them... not the way they really were. Not the way you were. I look at the photos but they don't hold you for me. You were touchable, soft and mushy- not like a photo- so still and so without life.

I remember the first time I heard your heartbeat. I was only 7 weeks along! They said it was probably impossible to hear it yet, but there it was, strong, steady, galloping. It always sounded like you were riding a horse in there.

Did you know your heart started beating when you were only 21 days old? All the cells that would make your heart began to dance in a beat, a dance, even though they hadn't formed your heart fully, they knew the beat already. You danced into existence.

How amazing is it, that cells that were laying there, doing not so much but waiting, suddenly jolted into life, sprung into action and knew the dance they had to do- even though they were not connected yet, they all danced together. It amazes me, perplexes me, how it all works.

Some  people think that because your heart formed imperfectly, because your cells formed imperfectly with an extra chromosome in each, you were a throw back, a throw out... a mistake of nature.

If only they could see the way I see, and their hearts would bleed for even thinking such a thing. Your life was of more value than I can even begin to imagine.

Because of you, I know what a blessing it is to hold a baby and know that they will be okay if they fall asleep without oxygen- and that they probably won't get sick tomorrow with the flu and need to be hospitalized. I know, because of you, that it's okay to count someone elses blessings for them, even though I wouldn't tell them that.

On Reeces Rainbow there are a few baby boys born the same month as you. I see them and I want to meet them, to see what they are doing and what they are like. To see what you might be like- what you might be doing had you never been born with a half of a heart.

The pain of missing you is still an ache that will never leave- but I am not in shock when I wake up anymore- I am not in shock that you will not be here- you will not be coming home.

We grieved your presence in the months you were in the hospital unable to look at us and smile... but we didn't grieve you as a loss. We knew you could get better, that you could come home.

So now we have grieved that, and now we know that you aren't coming home- our subconscious knows that you are home somewhere else, but you aren't coming to our arms here on this earth.

I learned a lot from you.

1. Give without saying.
The Bible taught me this a while ago, but as we went through this journey we had a couple people who gave to us, and expected us to never forget and to kiss their feet from then on. Receiving has never been a specialty of mine, and when this happened I realized something. I should give without boasting, in silence, and without expecting anything in return. Not love, not money, not loyalty. How could I burden someone else through giving? So I gave to several people throughout the process of learning this, and I will never say why or how much or who. And I don't care if they never thank me or speak to me again, because it's not my money to give, and it's not my heart to give with take in mind. Giving should be gracious, as Jesus gave with no expectations, but only hope. Hope that love would be seen in it, and only love.

2. Be gentle with your words.
Some people said things that were hurtful, harsh, and not always to us, but to other families we know too. Someone said "It's for the best." When you died. A few someones. I don't believe that your death was for the best for us, but I also know that they meant it not to be hurtful... but words need to be gentle. Gentle touches. You cannot love someone with logic. You love someone with humility, grace, and with listening. Logic is beyond all things when grief is present. Only love can conquer the pain of grieving, humbled, gentle love.

3. Forgive, lots. Don't be bitter.
And when these things happen, forgive. Forgive the people who hurt you when you are hurting. Forgive the people who say something they shouldn't have, or something that they didn't intend to hurt. Most people only mean kindness with their words during grief, they are looking for a way to relate. So put yourself in their shoes, if you can. Try to see from their view, and assume- as much as you can- that their hearts are in a good spot.

4. Don't be afraid to hope for the future.
In moments when I feel strong, where I feel ready for what should come after losing you- a look or a sentence brings me back down to the point where I feel hopeless and fearful of the future and the 'mights and maybes' of what could happen. Especially when I think about another baby- though doctors and nurses say it won't happen again, I can't help but get pushed over by fear occasionally... but then God reminds me.
Fear is a liar.
Evil is in fear, fear is in evil. It's meant to stop us from moving forward, to freeze us, to choke us into standing still. But we are not given that spirit by God, and we are made to conquer it.

5. Faith doesn't mean always understanding.
I don't need to understand anymore, why you died and why you had half a heart and why you didn't get better. Because I am not meant to decode that. I am meant to love you, and I can't love you if I spend my life asking why you had to die. You aren't gone forever, and that's enough for me. I don't understand why some get better and some die, and that's okay. I understand one thing. 1 percent is pretty bad odds. And you got better from that 1 percent. You came into my arms and you stared at me and you and I fell in love as a Mother and baby can. And my faith tells me that the miracle was there. My selfishness desires more, but my heart knows those months were a gift.

6. It's okay to feel the pain, and it's good to write it down until you can't write anymore.
I hope that everyone who goes on a painful journey writes it down. I hope they write it down for themselves, and then they share it with others so people can see that pain IS beauty. It's beautiful to fall to pieces, because thats when you find out what's really been under your hood your entire life. I know who I am, and I know I am breakable and also put back together able. I am no humpty dumpty. I was made to endure, and you were made to teach me I could. I hope that someone can relate to something I've written here, and I hope they can use it to inspire them to write. To say what's in their heart. To share.

7. Love.
Love love love.
Grace Grace Grace.
Love love love.

I am convinced that this recipe is what will make your life full. Having grace enough to see others with love, even when you ought not to. Having love enough to give someone grace when they don't deserve it. Falling in love with someone so much that your relationship shows grace where ever you go.

I miss you so much, little boy. I love you more than words can describe.

I am so thankful for you.

And I will always always always be so.
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