4.28.2012

It's very difficult to see Gabe right now. He is so puffy from fluid that he is wider than Judah... He is bruising from fluid overload... And having a hard time when the fluid balance goes down.

I miss him so incredibly much. He is there, but he isn't there. I haven't seen his eyes, his smile, heard his cry.... in so long.

Sometimes, it's okay to say that it's hard being here. It's hard being the Mom who was chosen to have Gabe, to fight with him and for him... Though worth it. Knowing that they had to poke a hole in him yesterday to release fluid... That's hard. That it might happen again... hard.

I am waiting as patiently as I can to see him again... But I can't help but feel like he isn't here right now. When you spend as much time as we have not seeing your baby be a baby- it's hard to even believe that they are still behind the 'curtain' of tubes and medicines.

I just can't wait until God fulfills his miracles in Gabe's life.

Judah turns 2 tomorrow :)

4.24.2012


It's been 14 days since I have seen my sons eyes open. 14 days since I've heard him make a noise. 14 days since I've seen him breathe without a tube. I miss him incredibly. It's not enough to hold his foot- to touch his head. I need to see him smile again, to hear his cry again. I need to know what he will be like in Kindergarten. God, provide a miracle.

4.23.2012


Today, I am thinking about the moments when I saw Gabe's heart beating inside of his chest again. Just in case everyone was curious, yes, I am morbid. I think it happened sometime after Gabe was given a 1 percent chance at life... and since then, I think about lots of morbid things that would bother some... But don't bother me. So pardon me when I do those things, but it's because I have had way too much time to think about them late at night. I was wondering today, how many beats Gabe's heart has already given in his short life. He averages 130 beats per minute right now. Yesterday I woke up from my sleep with a smile on my face. I had a sweet dream, I was pregnant (20 weeks) with a baby girl who had Downs Syndrome. In my dream, I thought "What a bummer, she has Downs Syndrome"... and then I looked at her. It was one of those ultrasound dreams where you can see every detail.. She was beautiful. I was almost sad to wake up and have it not be true (although, no thank you on pregnancy right now)... but it gave me a sweet feeling in my heart. Then I thought of Gabe, of the possibility of not taking him home and the possibility of another miracle in his life. So many people are praying for him, that if a miracle was to happen.. now would certainly be when it would occur. We knew every single moment we have had with our son was a blessing, not a right. We held him and stared at him wondering and knowing that if/when we lost him- we were given the most precious gift you could be given. A perfect, beautiful baby boy. So as we wait on our miracle, we reflect on the bigger miracle. That we had even one day with Gabe without oxygen, without life support, with love. That we had our family together... and it was perfect.

4.10.2012

Surgery Day

Today is Gabe's second surgery. He is in the OR right now with his chest open having Dr Del Nido work on his tiny little heart.

Yesterday, when Dr Del Nido was talking with us about his operation 'options' and what he may do with Gabe's heart... I started crying.

It had nothing to do with the operations, or Gabe's surgery... But rather the fact that Dr Del Nido did not mention, not even once, that Gabe had Downs Syndrome.

At Seattle Children's, Downs Syndrome was mentioned every day, every meeting, every time we talked. Like we were unaware how little value our Son's life had in the grand scheme of things because he was born so 'imperfect'. It was upsetting, to say the least.

But as Dr Del Nido finished talking, he said Downs Syndrome 0 times. He talked about our son like he was just that, our son. A person, a little man who deserved as much as the baby in the next room.

And he does.

We are so blessed to be here.

But I wanted to share what a blessing it truly is.

When you see someone with a disability, I hope you don't treat them substandard. I hope you don't think they are worth less on this earth than you are.

Because Jesus loves them just as much as he loves you.

And that's the truth of the matter.

Please be praying for Gabe today. <3

4.08.2012

If I never see you on earth again.

Gabriel, my sweet love,

Yesterday we talked about this, you and I. I told you of all the things that would happen if you stay with us, and all of the things that I would have hoped for if you don't get to.

I told you how happy we would be when we get to see you crawl for the very first time. When we see you get to walk (no matter how long it takes). When you sit up alone. When you go to preschool with your first backpack. How Mommy would be and is always going to be so proud of you. I talked to you about how Judah would be your best friend, even when you fought, and how brothers have a relationship that is so special. I talked to you about how Judah might get married and have you as his best man... and that you might get married too... I talked to you about how you would have a little brother or sister who also had downs syndrome someday when Mommy and Daddy adopted them... and they would look like you.

There are so many moments that I want you here for, Gabriel. So many sweet things about you that bless me. Yes, you are going to be a challenge, even though you are sweet to your very core, but you are going to be a blessing to me... every moment of my life. Whether I hold you in my heart or in my arms.

I feel so lucky that it was us. That Daddy and I got to have you.

I feel so lucky looking at you now, knowing that you should be dead but that you are here, in my arms, smiling and cooing.

Fear is a silly thing- but I do feel it when I hold you in my arms. Tonight, it's the fear that I won't get to see your smiles again. The fear that I won't get to hold you and let you pull out fistfuls of my hair just because it makes you make that 'determined' face that makes me laugh.

Gabriel, you have so much to live for- so I know you will fight. But if I never see you on Earth again...

You changed our lives forever.

You taught me, you taught Daddy the true meaning of love. In 7 months.. you changed our entire lives.

You gave us a new perspective- the perspective of hope, of fighting, and of course, the perspective of perfection in imperfections.

You put a light in my heart, a soft light, that I can feel glowing every time I see someone with a difficulty or a disability. Every time I see someone who is a little slower, or a little less than societies definition of 'perfect', my heart melts and I smile one of those 'Mommy' smiles.

Gabe... I can never ever thank God enough for the past 7 months. For the fear, the hope, the pain, the gain. I wouldn't change what we did- not for anything.

If I never hold you in my arms again after this, the impact that was made on our lives... just by you existing... I cannot describe the beauty you brought into our lives.

Watching Judah love you- giving 'his baby' kisses and holding you and just wanting to be around you... Watching Grandpa turn into a tub of mushiness over you.. Watching everyone who meets you and feels you in their arms fall completely in love with your 'perfection'..

I wish everyone in the world could meet you and hold you and finally see Downs Syndrome for what it is. Perfection- in it's own definition.

Innocence, love, joy. That's what I think of when I see you, sweet boy.

Hope for the world we live in- true love- you hold that in your very fibers. I think when God created you he created another angel to show us what our planet needs.

Gabriel, I hope to hold you in my arms for as long as I can. To kiss those ticklish cheeks... and I have hope that I will.

But if I don't get you much longer...

I hope heaven sends this message to you.

4.06.2012

Parents

Yesterday Nick and I were talking about something that has been bugging me for weeks.

People tell us we are strong, often. They tell us how much strength we have for what we are going through and what we are fighting for. They tell us how they think we are incredible.

Nick and I, we aren't incredible. We aren't inhumanely strong. We aren't abnormal... At least we shouldn't be.

We are parents.

The truth is, our world has skewed the perception of parents to a point where parents are weak, pathetic, and have no strength left.

As parents, we are given a gift that many long for.

Pregnancy being one of them.

From the second I knew I was pregnant, I was in love with my children at that moment, before that moment, even. I would have given anything I had for their well being, for them to not have to suffer or struggle, for them to be born into a world that welcomes them.

I would have given anything to give them THE BEST care, the best of everything, but most of all, the best love I can give them.

And sacrifice, that shouldn't seem 'heroic' that should be a part of being a Mom.

I was a Mom before my children were born. I knew my job, and it was built into me.

Nick and I, we don't have jobs at the moment. We don't have a home of our own to go to. We don't have insurance (except for Gabe and Judah)- and we don't have an assurance that we will walk away with anything except each other when all is done.

But we both know one thing. We know that as parents it's our duty to provide the most love, the best we can, and we have fought for that. It's not heroic to do so. It's normal! It's normal to want to give your little one's every chance that they can get.

And to those of you who think "But Downs Syndrome..." I honestly get sickened thinking that you would feel that way about my son. He is MY SON. He is no less my son than Judah, his life is of the same value to me and his future holds the same joys for me.

So why would anyone ask me to fight any less for Gabe than I would for Judah?

Judah, we fought for his struggles (though smaller in comparison)- and we learned about being parents who get what their child needs to live.

But for Gabe, we learned about being parents. We learned about fighting for hope when there is none, we learned about valuing life in it's most precious and scary moments.

If you have no children, but you have an imagination, perhaps you can imagine having a child in your arms for the first time. A child that you carried, that you hoped for, that you would lay down your life for. Holding them in your arms for the first time, knowing that they are half you and half your husband, part of your family, so beautiful and so incredible.

If you are a parent, your duty for that child is to be willing to lose EVERYTHING that they would be given the best. That all you would have left is your family to start over with, but knowing that you had given your child the best that you could give them.

It's not heroic, it's being a parent.

And those of you who don't think so- I cannot see how you could feel like a parent if you were not willing to lay down all that you have for your child.

It's not being a hero. It's not being strong. It's being a Mother, a Father. It's knowing that our son's life holds more value to us than our own lives.

4.05.2012

Remembering to breathe

Could possibly be the hardest part of this journey we are on.

Last night, I laid on a bench outside until I stopped shivering. Until the cold was welcomed and I could no longer feel the chill. I saw goosebumps on my arms, but I didn't feel anything.

Life can give us so much to handle.

Everyone always says how strong we are, but what else is our choice? To die? To crumble into pieces? Is everyone waiting for us to crumble under the pressure? Shocked that we haven't yet?

Last night, I felt the edges begin to tear on the paper that holds me together. A terrifying feeling, but one I also hadn't expected.

Right now, though I know God heard me last night, he didn't answer. And the chilling fact is that I feel quite alone and empty.

But I know the sun will shine again. It always does.
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