Sunday, November 29, 2009

A Special Recipe...

I didn't try turkey...

Potatoes or pies...

I'd much rather eat...

My own "special" surprise...

He wouldn't eat the good stuff on Thanksgiving, but he loved the taste of this yummy concoction :)

Hope everyone had a Happy Thanksgiving!
On another note a heart family very dear to us, lost their son Evan on Friday, please keep them in your prayers.

Thursday, November 19, 2009

The Little Engine that COULD...

I read him my favorite book yesterday, I think that he liked it.
Chug...chug...chug...puff...puff...puff...ding dong ding song...
The little train rumbled over the tracks, she was a happy little train.

I rub his little back, as I turn the page, he seems very concerned about the plight of this happy blue train. Nobody wants to help her, and she just wants to get to the other side of the mountain to deliver her gifts to everyone on the other side. No one thinks that it is possible for her to perform such a task. I can certainly say that I see Braeden's life in this story. Like so many others, a doctor that I had never met took my hand, as he tried to tactifully bring up the fact that there were "other" options. "You are too far along to terminate the pregnancy here, he said, but there are a few states where it is still legal. Can you imagine?
I spoke with another mom whose son was diagnosed with HLHS when Braeden was about 15 months old. He wasn't walking yet, or talking much, or doing all of the things that your average 15 month old was doing, but his smile, and determination became my most constant reminder to never give up. Life is worth fighting often I allow myself to forget. I sent this new heart mom his picture, and I shared with her our story, and the story of oour other heart buddies that were doing well. She emailed me a few weeks later to thank me, and also to let me know that she had terminated the pregnancy. Her words left their mark on me,"We decided we want a healthy child".

I had a hard time with her choice of words.

Sometimes I find myself sad...perhaps I have no right.
My child is here, while others are not. I desire normalcy...and find fear in uncertainty...

I can imagine watching shiny perfect trains going back and fourth up and down the steep mountain.(Forgive my analogy here)
As the mother's sit chatting happily,and sipping their hot tea...I watch my child struggling to make it up the first incline, that the others seem to do with little effort.
I am watching, my feet ready to go help him should he fall, or give him a gentle nudge should he recquire one.
I listen...but in a way, I am not, and could not ever be a member of their club. I know that they did nothing wrong, nothing to deserve my complacency, but we have little in common.
"Look Marjorie, said the youngest of the mothers. ""Do you see how my Johnny goes up and down the mountain with such ease, he is strong and mighty like his father". "Oh and so he Ameila, said Marjorie. "Why my Aron has three blue ribbons for his speed". They gaze my way with a mixture of pity and kindness, as I wach my little one just making it up to the second incline. "You shouldn't worry so, one of them says to me,"Everyone does things at their own pace". I smile and mouth the words,"thank you". Their kindness is there, and yet a part of me feels like I will never belong.
If you do not live in the shadow of death, you cannot comprehend it. I could share countless stories about friends, as well as family who do not understand where I am coming from. The uncertainty of your child's life hanging over you...the wondering how quickly things can change...the gradual acceptance that it is all in God's hands. It is a dance...changing from one moment to the next. A blessing to be sure...but there are days when it does not feel that way, especially the days when a fellow heart family loses their child. Part of you went with that child, not only in grief for their loss, but in hope for your own.

I think I can...I think I can...said the little train.

I should consider myself blessed, to be a witness to such a miracle.
Nothing that he does comes easily.
Everything is harder for him, and as a mother...
Well, sometimes it hurts.
I am not always sure if it is him that I hurt for, or it is my hopes gone astray...
I wonder what it would be like to be that person, who thinks that nothing bad can happen ...just once more.
That we live in a world where prayer can change the outcome of every sick child...
That there are always happy endings...
I listen attentively as friends tell me how badly they want their child to place first on the track team, or make head cheerleader and I think...
I hope that we have more time...a multitude of more time.
Is it wrong that they are proud of their children's wonderful accomplishments?

Absolutely not!

I am the one who has changed. I cannot help it. I revert from a little jealousy to alot of gratitude. One day at a time.(Forgive me Lord, I guess I am only human afterall)

The sounds of the other mothers talking is drowned out, as I watch my child drift slowly downward...
He had reached the top!
And as he comes back down...huffing...I thought I could, I thought I could, I thought I could...

I will be here waiting...because I always knew this day would come.

CO 1:27 but God has chosen the foolish things of the world to confound the wise, and God has chosen the weak things of the world to shame the things which are strong.

Friday, November 6, 2009

Happy Birthday Braeden...

You are five today...and as much as I wanted to write an amazing post about just how wonderful the last 5 years have been, I was awake half the night trying to keep your fever down. You are sick today, and as I wait to hear back from the pediatrician I realize that my plans for letting you pick a special activity for this evening are going to have to wait. A reminder that life never goes according to our plans :) I asked you what you wanted for your birthday last night, and you said, "Taco Bell" (This coming from the child who eats almost nothing)I had to smile...Happy Birthday sweet boy, you are loved more than you can imagine.

I have hope that someday,
When my child understands,
I'll set him on my lap annd then,
He'll ask me of God's plans,
In my own sweet daydream,
He'll lift his shirt up high,
And say,"mom am I different?"
And then, he'll ask me why?
I'll get the chance to share with him,
The long journey...before,
And tell him that he's very brave,
And God has plans in store.
I'll tell him of the battles,
That children like him face,
And how we must remember,
To always lean on grace.
That I have learned of courage,
Through the lives of those we've known,
And I am ever certain that,
We never walk alone.
That everyday's a miracle,
And life is to be treasured,
That hope and faith have brought us through,
And these things can't be measured.
And others are in heaven now,
(there lives tend to remind me)
That even when I run away,
Somehow son, God still finds me.
And when life seems to hard to bear,
And signs become easy to miss,
Brave little souls seem to whisper,
Have faith, you'll get through this.
Some may say your heart is weak,
And there are some things you will never do,
But you can do most anthing,
That you put your mind to.

I have hope that someday...
You'll do the same as me,
Your child will come running,
And you'll set them on your knee,
And lift your shirt for the hundedth time,
As your child says tell me the story,
About your very special heart,
And how it's brought God glory.
Tell me about your heart friends,
the ones that they just couldn't save,
And how your mommy told you that,
they were so very brave.
I imagine, you'll smile then,
(You smile all the time)
Then hold your child closely,
And say, Once upon a time...

Mothers can wish for such things,
it helps the heart to cope,
perhaps its even possible,
With faith,and love, and hope...

~Stephanie Husted

Thursday, November 5, 2009

Ever wanna cry?

Do you ever wanna cry? Me? I have always been the "strong" one, there is no time to cry, I need to hold this together. I need to be stay focused. Life has been tough, but there is certainly no time for tears. It's been wearing on me lately, and I can't help but ask myself if the best thing you can do is just allow yourself a good "cry" every once in awhile. You know...the kind where your trying to catch your breath afterward for a good 15 minutes?
Braeden's trip to the cardiologist was "perfect". His heart function is great, he has minimal leakage in his tricuspid valve, and the his echo report showed no changes. I am thankful.
It seems that the stress of the last 5 years are catching up with me, don't get me wrong, every single time I allow myself to feel even a hint of sadness for our situation, I am quickly reminded of those no longer here with us... the children taken away by CHD far too soon. It is so unfair.
I often push my fears and worries deeper, not wanting to face them, wondering will the worry ever go away?
Just this morning I woke up still crying from a dream. I was on a bus talking to someone about Braeden's condition. After telling her that he has a heart condition,kidney issues,feeding problems, and delays...I heard laughter behind me. I turned around, and there was a teenage boy laughing at me. I knew in my dream that he was laughing at what I had just said(dreams are so funny that way)"What is so funny?" I asked him. "It's funny that your son will never be normal like me", he said. In real life, I am one of the most non-violent people that you could ever meet. I've never even been in a fist-fight in school. That did not stop me from pummeling this kid on the bus though.( in dreamland) And as I did, I can clearly remember saying,"How would you like to watch your friends children die from something that they cannot control? How would you like to see your own child suffer and know that you are helpless to prevent the pain? How would you like to wonder if you will bury your own child? I woke up with tears in my eyes, visibly shaken.. If you won't allow yourself a good cry... I suppose the way may well be paved for you. I feel a little better now, and I guess we all have our breakdowns every now and is getting back up that matters most. Braeden will be 5 5..I will be sure to make a post :)

I'm in the "boxing ring" of life,
there are no rules here,
I block each punch with all I have,
I must not show my fear,
But soon the punches come too fast,
My vision is impaired,
The fight goes I grow tired,
(And just a little scared)
Surely I can take no more,
Im bruised,beaten and worn,
I must not give up on this fight,
Although my faith's been torn.
I raise my fist in victory,
this fight ain't over yet,
I have some strength left in reserve,
From all those I have met.
If they can stand in courage,
then maybe I can too,
I find a dose of bravery,
From all that they've been through.
My oppenents blows intensify,
His need to win seems stronger,
And I'm not sure that I can stand,
On these two feet much longer.
He throws a punch of doubt my way,
then follows it with spite,
Even with my best defense,
I cannot win this fight.
My hands fall down, my gloves come off,
I'm not sure what to do,
I hear a voice behind me say,
"Let me take those for you".
Why would this person want my gloves?"
I'm startled and undone,
The man throws down my soiled gloves,
And says, "This fight's been won".
Each blow meant to destroy you,
Each careless word once said,
I walked into that ring myself,
And took them in your stead.
"Oh Lord, I've grown accustomed,
To fighting everyday,
Sometimes I truly wonder if,
There is another way.
This is a challenge for me,
To lay aside my hands,
And place my fears with someone else,
Who knows and understands.

~Stephanie Husted

These things I have spoken to you that in ME you may have peace. In the world you will have tribulation,but be of good cheer, I have overcome the world.

John 16:33

Braeden's journey...

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