8.31.2012

I'm sorry

To the person...

I'm sorry that we don't have any huge reaction at this point to send you off with other than, we love you. I think I know who you are, and that's okay... Because we do love you.

No matter what you say, we will still love you.

Nothing can change that. No matter how hurtful your words are, we know the truth of the matter, and none of your words have effected that.

I hope you find the peace you are looking for, and if it means you need to continue badgering us, feel free. We know who we are, what we believe and who we serve.

What you are doing isn't coming from logic, but hurt.

And I'm sorry you are hurting.

8.29.2012

Happy Birthday...

I know I didn't post yesterday.

We were out celebrating the 'almost' one year of life we had with you.

I am so thankful for you, Gabriel.

I wish you were here to celebrate with us.

I wish that this surreal feeling would mean that it really wasn't real, but it is, isn't it.

I know you are in a better place, but we feel very empty without you.

You were, you are, a very important piece of our family.

You have held us together, Gabe.

I think you were like the glue, the icing on the cake. We still feel the benefits from having you in our world, but they are so much less sweet.

My tears are hiding out somewhere... But the empty spot is still here.

I was sick to my stomach yesterday, all day. Between butterflies and emptiness (and forgetting to eat)... I wonder how on earth I expect to make it through Saturday.

But I know that your life was a life built for the glory of God.

You are my Esther, Gabe.

You did things beyond your capabilities with the help of God, and gave us our memories of you, memories that we will always treasure until we meet you again.

I wonder if you will be grown like Dusty.

But either way, I hope there are hugs in heaven, because I want to hug you once more.

I am so sorry I wasn't stronger when we said goodbye. I am sorry if I scared you, but I was afraid to lose you.

I wasn't afraid of where you are now, but I was so afraid to say goodbye too soon. To give up too soon.

That day, was awful.

But today... I just miss your puzzle piece in our world.

If only we could have brought you home just once more, to see all these people who love you.

I hope you see them somehow. I hope Jesus is telling you all about the destiny that you fulfilled in our lives.

You fought hard, well. Better than any soldier I have ever met.

I am so, so proud of you.

And it was totally worth it.

Love forever,

Mommy

8.25.2012

Dear Gabriel,

The day we lost you, our nurse made up your bed and scooted you to the side so that I could climb in next to you. I did, and it was perfect, Gabe. I sang to you, and every time I did you fell into a deep, peaceful sleep. If I took my hand from yours, you woke up, searching for my hand.

And you looked at me with 'those' eyes. My sweet prince, I don't know if you realize how much you were loved...

The day you were born, our hospital room was filled with over 15 doctors and nurses. It was so calm though, so loving. My doctors, all three of them, were so kind, gentle... and you were born into a room of peace, love, and hope.

When we lost you, you were in a room quite similar. It was eerie, almost, how similar it felt to when you came into this world. A room of bittersweet harmony. Love so strong... that if it could have saved you, it would have. If love could have saved you on this earth, I have no doubt you would be here today.

I don't think a dry eye was in that room. No one was ready, least of all me.

But I know today you are somewhere else, and I don't feel you around. I think you left quickly, and Daddy and I wonder if the angel Gabriel came to pick you up and carry you, since you didn't know the way yet.

I wish it wasn't so quickly.

But I know someday I will feel your presence again.

Thank you, Gabe... For kicking butt. You fought so hard, for so long, with so much strength. You lived when all other babies would have died. You went through things that people said you would never survive, and you did. You were more than a conqueror, and you left us with your fighting spirit in us.

I was the most afraid I have ever been in my entire life on Thursday. I was so afraid to let go too soon, to give up when you could get better, but I know your body was no longer healing... The fight was over.

I am so glad you fought, Gabe.

I am so proud of you, more proud than I have been of anything in my entire life.

I believe that God put you here for a very real purpose, but that death and destruction tried to thwart that purpose. I believe that the enemy is trying to use what happened for evil.

He was laughing while we sobbed, but he didn't realize that we were not defeated. That we haven't lost, Gabe. We haven't lost you. We won.

We won because we held you. We won because you made us understand things we never thought we could comprehend.

We won because you changed us, every second of your life from the inside out.

You opened our eyes, you taught us, you showed us what we were so blind to. The innocence that God had intended for all of us... You showed us that.

We love you, forever, and I cannot wait to snuggle you in heaven.

Thank you for our last snuggles. I will never, ever forget them.

8.24.2012

The Perfect Gentleman

Gabe will always be my version of a perfect gentleman.

He was quiet and listened to everything that you said, quite intently.

He was a warrior, he fought so hard....

But he was a gentle spirit, so sweet and so untainted by other people's ideals.

I was talking to Nick tonight about our 'someday' babies... and I said it felt a little odd...

But if we don't have a baby with Downs Syndrome, I'm afraid I will be disappointed.

So someday, just like we promised Gabe, we will adopt a baby with an extra chromosome.

We always told him we would, so he could have someone who looked had those cute little features... Someone who would understand him perfectly, even when we couldn't.


Yesterday, before we lost him... we talked about the time he spun off of his couch into a laundry basket.

Thank goodness the laundry basket was there, we had thought.

To catch our baby when we weren't there.

I know he was caught yesterday.

He might have been scared, because I know we were scared. Scared to let go, scared to hurt so much.

But I know his fears were replaced quickly... by something so amazing.

Love surrounded him in that room, but nothing as great as the love that surrounds him now.



We miss him, but he knows that he is loved.



We are the ones grieving tonight, but not Gabe.

Oh Gabe. I miss you so.

Oh Gabe

I miss you.

Empty Feeling

All day, I prayed for a miracle. That somehow Gabe's white blood cell count would go down... But ever few hours, I made them re-check his bloodwork, waiting for our miracle.

I watched his count rise from 12-14-19-22....

But around 6pm I made Nick call Dr Del Nido, the man who has advocated for Gabe this entire time. I made him call to ask one more time if there was any chance at all that Gabe could recover.

'Surgeons never give up on their patients, ever.' A nurse told us. But Dr Del Nido told us that it was the end. That if we let his infection brew farther, it would be the longest, hardest road we put Gabe through, his kidneys had stopped functioning well.... his body was swelling from retaining fluid... and the infection was cutting off bloodflow to all of his important organs.

In the last moments with him I still hoped that he would be able to breathe on his own... to come off of everything. I was hoping for our miracle even as we said goodbye. But I know we had our miracle in our arms.

Nick's Dad held him around 7pm. Then, Nick held him at 7:25pm. Then I asked his sweet nurse, Dane, who loves him so much if she wanted to hold her 'nugget' as she always called him. I would be his last hold. I brought him into the world, and I wanted to be the one who was holding him. Dane cried over him, as we all did.... and then she looked at me.

"Are you ready?"' She said.

I began sobbing and she did too. "No." I said, through tears...

I couldn't do it, I'd said it all day. I couldn't say goodbye.. I couldn't give up... I couldn't watch his life end. But I knew that it was going to end whether I held him now or not.

I held him in my arms and cried. A photographer showed up from Now I Lay Me Down to Sleep and caught photos of him... and then photographed what happened next.

I didn't understand how Gabe would stop breathing. I couldn't fathom it. I have never seen anyone die before. I asked them what they would do... and they made it sound very simple. They would remove the  breathing tube, and turn off the medications that were helping his blood pressure... and turn off the machine telling us his heartrate and breathing rate.

They gave him extra pain medication, but I made them not give them too much. I wanted to see him breathe once more.

They removed his breathing tube, and he cried out loud from the tape being removed... Which caused me to break into tears again, looking at his sweet sad face.

They removed the breathing tube and turned off his medications.

He breathed for a while, but it didn't seem real. It seemed so slow, but so fast.

And we watched him breathe for the next few moments, faster and faster.

Oh Gabe.

It only took a couple of minutes before he was gone.

But before he took his last breaths, I knew he was already gone. I felt his presence leave the room, and I knew our Gabe was forever gone. An empty feeling sunk deeply into my heart, and I knew what that meant.

We sobbed, so much. The photographer caught all of it, and I'm not sure if I will ever want to see it.

Afterwards, Nick told him he thought he probably got a lot of really horrible pictures of us crying...

But he said.. "They weren't horrible. It looked like a lot of love." and he began to cry.

Dane and I dressed Gabe in his little tuxedo for the last time. We put on his shoes and the photographer took some pictures. I had a hard time being in them, because I knew Gabe was not there anymore... and he didn't look anything like the boy in my heart.

The boy who is missing from there now.

I know he is a perfect place of love...

But that doesn't change the empty feeling we have now.

His birthday is on Tuesday, you know.

Oh Gabe.

I love you so, so so much.

8.19.2012

Hope for Baby Bennett: Healing a Hurting Marriage: Part 1. The Backstory

Hope for Baby Bennett: Healing a Hurting Marriage: Part 1. The Backstory: Having a medically fragile child, particularly with a diagnosis like Hypoplastic Left Heart Syndrome, involving multiple open heart sur...



Please read this post. Though we haven't reached the 'post hospital' part, it does take a toll.

Nick and I were still newlyweds when we started the parent journey... and now, we haven't had a chance to catch our breath as a family away from hospital land in over a year. It does take a toll.... Something I will probably blog about when it isn't so close to home...

This family is very important to me.

She is a beautiful person, inside and out and her family serves the Lord through all of this. She is also a member of Sisters by Heart, the group who sent us a care package when Gabe was diagnosed.

Please take a look and give her a comment with some kudos for sharing such a personal experience that will help so many... like our family.

Asleep at the wheel.

I will be absent for a little while from the blogging side of things. If you want to keep updated on Gabe, like his facebook page and check there for updates.

I am kind of asleep at the wheel right now and I'm just going to enjoy the small things since the big ones are a mite overwhelming as of present.

Thank you for being so kind with your words, whoever reads these, and the encouragement you have all shown is also greatly appreciated.

8.16.2012

A different kind of plan.

I have spent so much of the past year just waiting for our family's life to start together. Waiting for us all to be whole, complete.

Then, I spent even more time recently wondering when, if ever, it will happen that we will all be together under the same roof, away from the hospital.

"This couldn't be God's plan for me, could it?" I thought today.

Could God let my son go through so much, knowing how difficult it has been... and truly be giving me His best? See, God's best has always been 'better' than what I have, in my mind.

I always think that God's best is perfect health, perfect finances, perfect love.

Perhaps, what I've been missing all along, is that God's best is where I am.

Yesterday on my long plane ride, I began reading a book a friend of mine had sent me from her Mom. One Thousand Gifts.

I have had it for quite a while, and thought about it, but I wasn't ready.

I think it was the right time, yesterday, to begin this book.

One Thousand Gifts starts off with a tear-jerking story... told by a woman who had seen her sister die in front of her and watched her father's faith collapse in the wreckage, and very much lost her own faith in the beauty of life as well.

Then, it moves on to another story that tore a hole in my stomach.

A family, who had lost their first son to a disease- losing their second son to the same at just 6 months old... watching the breath slip from him.

It was almost too much to handle, well it was... I cried, of course, and for a moment shut the book. The father had faith, even in the moments of losing his second innocent son, that God had a plan.

I like to think that I have felt that much of the time, that there was a plan. But I have never thought that THIS, what we are going through, was the plan. The plan, I had always thought, was what was to come. The joy of a healed baby. The hope of a full, complete family. A family, that without Gabe, we will never feel.

The story continues, and the woman writing makes a profound realization that strikes me.

Before every miracle in the bible, there was thanksgiving... There was thankfulness for what was already had.

I can say that I have been thankful for the months we spent out of the hospital with Gabe. But I cannot say that I have been thankful for any moment I have spent over his hospital bed, watching him struggle with the fight to just live. Not even to be happy, but to just live.

In fact, the very thought of what he has had to endure makes me almost angry, at how truly unfair it is. At how such a beautiful baby cannot be a baby.

And today, in the heart-mom world, another baby was lost. I can't help it but cry every single time. It is too close to me still, and I hope one day I can have faith that it will not be us, but right now I still wonder.

Was that the plan God had for that baby? I don't think God has anything to do with death on this level. I think the only thing that caused death, congenital defects of any kind, cancer, pain, loss, exhaustion... Was evil that came into the world in the moment we fell from God's perfect plan.

The book also touches on that, but it's true reflection is the blessings that we do not count in our moments of life.

The blessings that I know of, but I have not thanked God for.

God's true act of love for us, every single blessing that we would not have without his grace.

If God's plan for us is for us to love and be thankful for where we are at, then who are we to call into question what the future should hold... When we cannot be thankful for what we have at this very moment.

So, as in the book, I have started my list. 1,000 blessings. But I don't intend to stop there. I intend, very much, to thank God for the things that I may acknowledge that are good in my life, but I don't thank Him for on a regular basis.

Because, the truth is this. I want my miracle. So I am going to be thankful for where I am at.

Miracles come after thankfulness.

God, give me a thankful heart.

Let me not be a complainer.
Take my heart and refine it that my eyes would be opened to the tremendous blessings you have given our family in the past years.
Let my spirit be a grateful one, that I can finally enter into your courts with a deep thanksgiving in my whole being.

Let me have peace with the world around me, as it is... So that You can be free to mold it to make it what you want it to be.

I'm ready for the plan, if this is it, let my heart be glad.

Let my heart be glad in the moments when others would be bitter.
Let my heart be softened in the times when others would harden.
Let my spirit exalt you in such a way that people would see Your love in my life, even though they may have a tendency to feel pain for our situation, don't let that be what we reflect.

Stir me up and make me new.

8.12.2012

Courage

I bought two bracelets from the hospital gift shop today.

One said 'Hope'. The other said 'Courage'.

Hope was for me, because I have needed to believe that hope exists in the most fractured of moments lately... and Courage was for Gabe. Or was it for me?

I put courage on one wrist and hope on another and wore them around. I have never pictured myself as someone with a lot of courage. Though I like to think I have goodness in me, I also don't picture myself as a very hopeful person at times. I believe in goodness, I think. Not hope, just goodness.

I believe that the sun will shine tomorrow, and that spring will come after winter feels too long.

But I often find myself very much afraid to hope that tomorrow's flaws will be different from today's. Sometimes I feel like me hoping is selfish, for those who hoped and saw their hopes put out like a candle between your fingers. For those who have felt the singe of putting all their hope into something, and yet, to no avail.

It takes something to hope that I also lack. It takes courage to hope.

Courage is rightly esteemed the first of human qualities... because it is the quality which guarantees all others"

Winston Churchill

I can say, honestly, without a hint of exaggerating, that I feel without courage much of the time. Small and meek. I have found that courage doesn't live within me naturally. It comes only from God, who has grace enough to bestow courage upon me in my weakest moments.

I wrapped the bracelet that said courage around Gabe's wrist, but I know that Gabe doesn't need any more courage than he already has.

He has faced so much in his little year long life on this planet.

But I have faced only the task of watching and hoping and praying for him. How much courage does that take? More than I have.

Today, I saw Gabe doing 'Gabe' things once more. I saw him looking at me, at Daddy, at his nurse, Dane... and I felt him grasp my hand with his tiny little fingers again. I hadn't hoped for this as much as I had dreaded the possibility that it would not happen again.

For the past week, I have been praying out loud for everyone I have said I would pray for. That is a huge deal for me, because praying out loud is something I haven't done in months... And now our Gabe is showing himself to not be a vegetable at all, but still his sweet self.

I don't think it's a coincidence. I think that by praying for others, God has given our Gabe grace.

Courage- such a strange thing that courage leads to so many great things. The courage to pray outloud. The courage to hope.

Thank you, God, for giving us courage when we needed it most, and keeping us quiet when we needed to be quiet.

8.10.2012

"I chose to love you."

Early in my marriage, I had my first fight with my husband.

We were still in the 'blissfully happy makes people want to puke' stage of our marriage (which I hope to be at for the rest of our lives, if possible)- and I hadn't come down from the cloud nine of finding my soul mate and how everything felt so incredibly magical.

Actually, I think I only recently came down from that, but luckily I still am very much in love with him, just less dizzy about it :).

The first fight I remember clearly, was about love. I believe in love, in breathtaking, romantic, head over heels, throw away everything you own and backpack to Guadalajara kind of love.

Our joke back then, after we had lost both of our jobs 2 weeks after being married, then became pregnant, was that we were actually "Living on a Prayer." (Oh hindsight is 20/20, isn't it)

Nick and I were talking about love, though the entire conversation is a bit of a blur now, I recall him saying, quite clearly, that he believed love was a choice, and not a feeling."

I was quite up in arms at this point. "So you weren't really in love with me, because you could CHOOSE to love whoever you wanted?" I said, probably loudly, because I am a feisty gung-ho kind of a person.

"No, I fell in love with you, but I chose to love you too. I choose to love you even when the feeling isn't there."

Being a woman I took this as the feeling was indeed not there for him. But now, 3 years down the road, I can look back and see what he meant... and with a little less emotional fragility... Say that love is, indeed, a choice.

Poor Nick, that day I probably slumped into the bed with my angry face on.. and I recall him admitting that love wasn't only a choice (he is such a good husband ;)).

But at the same time, love is very much a choice.

If your relationship was as much as a bonfire in the start, like Nick and mine seemed to be, you don't need that choice, because it seems like less of a choice and more of a 'I can't live without you' feeling. That feeling hasn't gone away, I still feel like I can't live without my spouse...

But I also know that this is only the beginning. There has been moments in the past year where we wished the other person would fly to the other side of the country (and I ended up doing so, but put it mainly on the fact that our toddler needed something more normal... when indeed, it was all of us).

We have betrayed each others feelings, and lied to each other, and been so honest it was a little too much honesty at times... But we have seen the moments where we finally had to admit that we were choosing to love each other, even when the feeling felt like it had been slung into the mud and trampled on by wild horses...

And today, I woke up before him... We are sharing a little dinky room with a cot and another cot sized bed that we try to sleep on together when we are feeling especially needy... And I woke up on my own 'cot' very upset because I wanted a bed that was normal sized for once... so I could not feel so far away.

But there he was, my prince charming, sleeping away, and I woke him up with quiet words, just to see his blue eyes open. He opened them and looked at me, and that sweet half smile filled his sleepy eyes with that day-dreamy look that the boy who fell in love with me has given me over and over again since the day we met.

It's not hard to choose to love Nicholas, because the feelings are always there, even when the overcast is strong.

He cares about me more than anyone else in the world, he loves me enough to say that love isn't really a choice, because he wants me to know that he loves me passionately too.

But in the end, if it all falls apart... I know that we both know that we made a choice.

We choose love. :)
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