*there's two and a half

*there's 2 years

Today is Will's 2nd open heart surgiversary! 

Our celebratory cookies are A-dorable!

more pics to come...right before I could load the picture of all the cookies together I suddenly ran out of memory and didn't even know that was a thing that could happen

Scar check:

2 weeks post-op

2 years post-op

Since the poem below is long I wanted to make sure I highlighted at least part of it:
You already have quite a story,
Which you can someday share,
And I can see it's beauty,
Behind that scar you wear.

BEHIND YOUR SCAR
Sometimes I have those "moments",
When I think...life's just... not fair,
Then I think of all you've been through,
And I see the scar you bear.

A faded line right down your chest,
Made with such careful precision,
We wanted you to have a chance,
Could there be any other decision?

And so I trace that "perfect" scar,
Made with the utmost care,
And I realize there is purpose,
Behind this scar you wear.

What have you taught us?
You've taught us how to face a storm,
(Some things are just out of our hands)
Life has no handy guidebook,
(Things don't always go as you've planned)

People come into our lives,
(Sometimes it is just for a season)
But God brings them into our lives,
(And I know that He must have a reason)

Normal, uneventful days,
(The kind that we always hoped for)
These are the days I say, "Wow God",
We just never know what lies in store.

If I can place a feeding tube,
Without even getting distraught,
Perhaps, maybe, I might be...
Much stronger than I thought.

It's okay to be afraid,
And it's alright to cry,
It's okay to feel lost sometimes,
It's even okay to ask...why?

You face life with courage,
(Knowing God set you apart)
Every little thing you do,
You do with all of your heart.

No crystal ball exists for us,
(To see us through each strife)
We only have one wish for you...
An ordinary life.

You've taught us to love one another,
(Helping each other to cope)
You've taught us compassion for others,
You've taught us to never lose hope.

You already have quite a story,
Which you can someday share,
And I can see it's beauty,
Behind that scar you wear.

~Stephanie Husted

 

A book dedicated to helping children see the beauty of their scars.

*there's the day before The Day

When I have said my evening prayer,

And my clothes are folded on the chair,

And mother switches off the light,

I'll still be 1 year old tonight.

But from the very break of day,

Before the children rise and play,

Before the darkness turns to gold,

Tomorrow, I'll be two years old.

Two kisses when I wake,

Two candles on my cake.


Anonymous

*there's nothing into everything

Know you what it is to be a child?…
It is to believe in love, to believe in loveliness, to believe in belief;
it is to be so little that the elves can reach to whisper in your ear,
it is to turn pumpkins into coaches,
and mice into horses,
lowness into loftiness,
and nothing into everything,
for each child has its fairy godmother in its soul.

– Francis Thompson

*there's a marvel

You Are A Marvel

Each second we live is a new and unique moment of the universe, 

a moment that will never be again . . .

And what do we teach our children? 

We teach them that two and two make four, 

and that Paris is the capital of France.

   
When will we also teach them what they are?

We should say to each of them: 

Do you know what you are? 

You are a marvel. You are unique. 

In all the years that have passed, 

there has never been another child like you. 

Your legs, your arms, your clever fingers, the way you move. 

You may become a Shakespeare, a Michaelangelo, a Beethoven.  
You have the capacity for anything. 

Yes, you are a marvel. 

And when you grow up, 
can you then harm another who is, 
like you, 
a marvel?
You must work - we must all work - 

to make the world worthy of its children. 

Pablo Casals

Faster than a speeding bullet...

It's SuperWill!

*there's another surgery day

I already have several of Stephanie Husted's poems throughout this blog. They are long and probably not interesting to you, but they have been so helpful for me to read. Will is having another surgery tomorrow and although it doesn't have anything to do with his heart, this poem is still appropriate.

If I could write your story son,
(Oh how I wish I could)
I'd pen for you a journey,
That held nothing but good.
Wouldn't it be perfect?
If that job belonged to me?
I think I'd change a thing or two,
While writing your story.
I'd write of lasting happiness,
The storms would stay at bay,
I'd write your story carefully,
I'd have so much to say,
You'd know not of a hospital,
Or days in ICU,
You'd only know of simple things,
Like other children do.
The sun would rise...Yes everyday,
And shine to make you smile,
You'd never know a day of pain,
You'd never face a trial.
You'd dance to music all your own,
While watching Sesame Street,
I'd tuck you into bed each night,
And life would be complete.
I'd write of picnics in the park,
And winters in the snow,
I'd write of laughter, joy and love,
I'd sit and watch you grow.
I'd proofread till my eyes grew tired,
Each line and paragraph,
And let my pen fall to the floor,
Then stop to hear you laugh.
And never would I question,
What sick children must face,
Never would I have a need,
To ask God for his grace.
I'd likely live oblivious,
Of what it means to be...
A member of this "special club",
I call my heart family.
If I could write your journey son,
Perhaps I'd not convey,
The message that HE longs to share,
"We must live for today".
Your story has been written,
Each stroke penned with great care,
He knows each thought I have of you,
He's numbered every hair.
No, I can't write your story,
Although I wish I could,
I must heed what HE says to me,
"All things work for the good".
If I could write the life you'd live,
I'd fail...don't you see?
I'll leave it in much better hands,
He'll write it perfectly.

 by Stephanie Husted  

*there's his surgiversary

Or is it his heartaversary?

I think every day is a heartaversary so we will go with the other name.

Sometimes I write blog posts ahead of time and save them to publish later. I wrote one for Will's surgiversary months ago that sounded fairly sad. I think some grief is to be expected. But it hit me one day that this was a time to celebrate!

So then what? A party wasn't really practical. But we COULD share a yummy dessert with some friends! Taking full advantage of an excuse to eat something really bad for me, I became pretty obsessed with the idea of getting heart shaped red velvet whoopie pies. (Still a genius idea if you ask me.) But that proved to be too difficult since our local bakery had never heard of them. I'm keeping that as a goal for the future.

image of ingeniousness courtesy of cambrookefoods.com

We ended up with these delicious cuties:

 

 

Now for the original post.
This time last year we were taking videos of Will in his hospital room. Just in case it was our last time with him. Hoping for the best and preparing for the worst.

 

When surgery was over, we didn't want people gawking at pictures of Will not looking his best. If it is possible to look perfect and awful at the same time, he did. I asked other heart moms if they showed anyone pictures of their child after surgery. I got all kinds of responses: some never did, some did but people got upset with them, and some didn't think it was a big deal at all. Now that we know he is all fixed up, it seems like the time to share our pictures. Don't look at them if you prefer.

 

A few days after surgery (minus some tubes) when the fluid was at its worst.

I hope that comparing those pictures with the one below will help us remember that there is hope when life seems bleak.

Will at age 1

I don't get queasy in hospitals and I can usually handle medical stuff. We were shown pictures of what to expect right after surgery. I think that helped it not be such a shock.When we got to see him after surgery in his PCCU room, the nurse explained all of the equipment and medicines and I was fine until she said "This is the chest tube" and my eyes followed it to the floor. Chest tubes drain excess fluid out of the body. It went from the middle of his tummy all the way to the floor into a box to measure what collects there. At that point my knees got weak and I had to sit down. I've never experienced anything like that before or since. It wasn't because it was gross, but I think it must have been a symbol of how fragile he was. It didn't help that my mind magnified it to the point that I was imagining it much larger than its actual size. That tube was my least favorite thing about the PCCU.

Will's surgery day was memorable and life changing. We hope he never has to do that again.

To my son,
I write this as I wonder,
Will you ask someday?
Why do I have this scar mom?
Did God make me this way?
What will happen to me?
What does my future hold?
Will I hold my own children?
Then live until I’m old?
I think about your future,
Imagining what lies ahead,
Perhaps I need to concentrate,
On present things instead.
The present:
Right now you are enjoying life,
A typical mischievous boy,
You make us laugh…yes everyday,
And fill our hearts with joy.
And people often ask me,
So he’s all better right?
His heart is fixed, he seems just fine,
His future’s looking bright.
Yes, “He’s doing well”, I say,
I hope things stay this way,
I still fear for his future,
And every night I pray…
“Give me yet another day,
Keep my child strong,
I do not want to lose him Lord,
Please let his life be long.
Thank you…
Thank you Lord, for showing me,
What just one child can do,
I marvel at his courage,
And the trials he’s been through,
Thanks for your compassion
(And need I say it?…grace)
You’ve led me through each valley,
And you’ve brought me to this place.
A place where I’m not angry,
And it’s easier to see,
That I was not the person,
That you wanted me to be.
Thank you for the trials Lord,
They’ve taught me how to give,
Thank you for my child Lord,
He’s shown me how to live.
Did God make you this way?
I’ve asked myself this question,
A thousand times before,
Then it became a question that,
I just could not ignore.
God, He made you perfect,
Bestowing you with gifts to share,
God made you with his own hands,
Then numbered every hair.
He saw no imperfection,
Or heart…all rearranged,
He saw you…his well loved child,
And then he saw…lives changed.
The future…
The future is no place to live,
And neither is the past,
The present should be cherished,
As it truly goes too fast,
I don’t know what your future holds,
Or what we’ll have to face,
I know who holds us through each storm,
I know we lean on grace.
I know that life’s not always fair,
I know God has a plan,
I know He gives us strength and hope,
I know, he says…”You can”.
I write this as I wonder,
Will you ask me why?
Will you someday understand,
Just why we had to try?
Know, how very much your loved,
(Through every storm and strife)
Know, I wanted you to have,
A chance… to live your life.
~ by Stephanie Husted

One last thing...a major part of Will's OHS was the closing of a hole between two heart chambers. To listen to what a heartbeat with a VSD sounds like before repair, go to this link. Scroll to the bottom and click on Ventricular Septal Defect. Not the typical thump-thump pause thump-thump we're used to is it?

*there's 5 lessons I've learned

Sometimes I debate with myself about whether or not Will's CHD was something that happened to us or if we were anointed with it as a gift. Here are some of the lessons learned.

1. from Lauren :

"God makes no mistakes."

2. from Kate:

"We serve a mighty God."

3. from Stefanie:
We can all be angels to one another. We can choose to obey the still small stirring within, the little whisper that says, Go. Ask. Reach out. Be an answer to some one's plea. You have a part to play. Have faith. We can decide to risk that He is indeed there, watching, caring, cherishing us as we love and accept love. The world will be a better place for it. And wherever they are, the angels will dance. Joan Wester Anderson

4. a quote by Barbara Bloom
When the Japanese mend broken objects, they fill the cracks with gold. They believe that when something's suffered damage and has a history it becomes more beautiful.

5. a poem by Lauretta P. Burns 
As children bring their broken toys
with tears for us to mend,
I brought my broken dreams to God, 
because He was my friend.
But then, instead of leaving Him,
in peace, to work alone;
I hung around and tried to help,
with ways that were my own.
At last, I snatched them back and cried,
"How can you be so slow?"
"My child," He said,
"What could I do?
You never did let go." 

Congenital Heart Defect Awareness Week 2011

*there's an anniversary

One year ago was

The Day I Became a Heart Mother

One day my world came crashing down,

I'll never be the same.

They told me that my child was sick.

I thought, "am I to blame"?

I don't think I can handle this.

I am really not that strong.

It seemed my heart was breaking.

I have loved him for so long.

I will not give up on this child.

I will listen to your advice.

I will give my child any chance.

No matter what the price.

I will learn all that I need to help my child thrive.

I'll even use that feeding tube.

My child must survive!

Will he need a lot of therapy?

Will he gain the needed weight?

Please God, help me do this.

I will accept our fate.

When the monitors beep at night, it serves as my reminder.

How many parents would love that sound.

Tomorrow I will be kinder.

As another Angel earns his wings,

I run to my child's bed.

I watch him sleep for quite a while.

I bend down and kiss his head.

I cry for the parents whose hearts have been broken.

I look to You wondering why?

Oh Lord, I just can't know your ways....no matter how I try.

And yet, I trust you hold his life, and guide us through each day.

My mind says savor each moment he's here,

but my heart begs, "PLEASE let him stay"!

From pacing the surgical waiting room, to sitting by his bed.

From wishing for a good nights sleep, to learning every med.

From wondering, "will he be alright?", to watching him reach out his hands.

With every smile my heart just melts, despite life's harsh demands.

For all who see that faded line.

I look to them and smile.

You see my child is loved so much.

I would face ANY trial.

That scar I trace with my finger (It's the door to his beautiful heart).

God must have known how much I'd love him (Just as He loved him from the start).

A heart mom is always a heart mom.

Now wise beyond her years.

For those who have angels in heaven,

Our hearts share in all of your tears.

Every day I will try and remember,

I was chosen for him (and no other).

I will always embrace that beautiful day.......

When I became a "Heart Mother".

Stephanie Husted

*there's the party

Pictures from the party!

 They are narrated with yet another poem,
but I promise its the last one for awhile.

 

  What unsuspecting miracle
Has passed through his first year?

 

Has circled round the smiling sun

To sit before us here?

 

What angel changeling changed our lives

Since he arrived from heaven,

 

Bringing home the ballyhoo

That rounds the gates of Eden?

What bright eternal soul have we

Since taken into time?

Have welcomed weeks and days

Still stunned by the sublime?

What love has love brought to this world?

What joy has pleasure wrought?

For this, our celebration, sings

Of far more than we sought.

Unknown

 

More party sights:

*there's ONE more day

When I have said my evening prayer,

And my clothes are folded on the chair,

And mother switches off the light,

I'll still be 11 months old tonight.

But from the very break of day,

Before the children rise and play,

Before the darkness turns to gold,

Tomorrow, I'll be one year old.

One kiss when I wake,

One candle on my cake.


Anonymous

*there's the approach of birthday ONE

Cradle Song  

  
What does little birdie say
In her nest at peep of day?
Let me fly, says little birdie,
Mother, let me fly away.
Birdie, rest a little longer,
Till thy little wings are stronger.
So she rests a little longer,
Then she flies away.

What does little baby say,
In her bed at peep of day?
Baby says, like little birdie,
Let me rise and fly away.
Baby, sleep a little longer,
Till thy little limbs are stronger.
If she sleeps a little longer,
Baby too shall fly away. 

Lord Alfred Tennyson

Baby, sleep a little longer

*there's loss

I was recently writing about how I wasn't sure I wanted to hang out in the online blogging CHD world. At the time I wasn't even thinking about this -  the reality of CHDs is that they cause death. A baby with TOF died this week. He was less than one month old.

Blog after blog I checked had posts of sadness about the loss of Baby Ewan. The online CHD community is grieving today and it's hard to ignore.

To help you understand why some babies with TOF make it and some don't, Ewan's mother gives an excellent description of the range of severity the TOF diagnosis can have. See her October 5th post.

And then I saw this on a blog I've mentioned before. I don't know how to link to the October 3rd post individually so I included my favorite part here:

thump thump

This time, she wanted to sleep in my arms
on my chest
squishing on her binky in my ear
breathing on my neck
relaxing into my arms
It was quiet.
Just us.

And then I felt it.

Her heart beat.
My heart beat.
One on top of the other.
Beating at the same time.

Soon I didn’t know which thump was mine
and which one was hers.
and which one was Jaydens.

And I thought of his mom.
And heart moms.
And moms that lose their children.
And moms that watch their children lose.
And moms that watch their children win.

And soon I didn’t know which heart beat was mine
and which one was theirs.

Baby Ewan and poetry like what you see above are my new reasons to keep blogging about Will.

*there's a poem for my son

i carry your heart with me
(i carry it in my heart)
i am never without it
(anywhere i go you go, my dear; and whatever is done by only me is your doing, my darling)

i fear no fate
(for you are my fate, my sweet)
i want no world
(for beautiful you are my world, my true)
and it's you are whatever a moon has always meant
and whatever a sun will always sing is you

here is the deepest secret nobody knows
(here is the root of the root
and the bud of the bud
and the sky of the sky of a tree called life;
which grows higher than soul can hope or mind can hide)
and this is the wonder that's keeping the stars apart

i carry your heart (i carry it in my heart)

e.e. cummings


This poem likely wasn't meant for a mother to dedicate to her son. But the mention of hearts is fitting I think.

*there's a mother's perspective

I found this on blog4chd.com. It’s written by Stephanie Husted, a fellow heart mom.

A Mother’s Perspective

You passed me in the shopping mall…
(You read my faded tee)
You tapped me on the shoulder…
Then asked…”What’s a CHD?”

I could quote terminology…
There’s stats that I could give…
But I would rather share with you…
A mother’s perspective.

What is it like to have a child with a CHD?

It’s Lasix, aspirin, Captopril…
It’s wondering…Lord what’s your will?…
It’s monitors and oxygen tanks…
It’s a constant reminder to always give thanks…

It’s feeding tubes, calories, needed weight gain…
It’s the drama of eating…and yes it’s insane!
It’s the first time I held him…(I’d waited so long)
It’s knowing that I need to help him grow strong…

It’s making a hospital home for awhile…
It’s seeing my reward in every smile.
It’s checking his sats as the feeding pump’s beeping…
It’s knowing that there is just no time for sleeping…

It’s caths, x-rays and boo boos to kiss…
It’s normalcy I sometimes miss…
It’s asking do his nails look blue?
It’s cringing inside at what he’s been through.

It’s dozens of calls to his pediatrician…
(She knows me by name…I’m a mom on a mission)
It’s winters homebound…and hand sanitizer…
It’s knowing this journey has made me much wiser.

It’s watching him sleeping…
his breathing is steady…
It’s surgery day and I’ll never be ready.
It’s handing him over…( I’m still not prepared…)

It’s knowing that his heart must be repaired…
It’s waiting for news on that long stressful day…
It’s …praying…it’s hoping…that he’ll be okay.
It’s the wonderful friends with whom I’ve connected…

It’s the bond that we share…it was so unexpected…
It’s that long faded scar down my child’s small chest…
It’s touching it gently and knowing we’re blessed…
It’s watching him chasing a small butterfly…

It’s the moment I realized I’ve stopped asking why?
It’s the snowflakes that fall on a cold winter’s day…
(They remind me of those who aren’t with us today)
It’s a brave little boy who loved Thomas the train…

Or a special heart bear…or a frog in the rain….
It’s the need to remember we’re all in this plight….
It’s their lives that remind us we still need to fight!
It’s in pushing ahead amidst every sorrow…
It is finding the strength to have hope for tomorrow.

Except for personally knowing someone who hasn't survived a CHD, the heart catheterizations (we know a 3 yr old who has had about ten of them though!), and Will not being big enough to chase butterflies - this is pretty accurate. Because of TOF we always looked to see if his lips were blue, not his nails. We haven't had those exact medications either. Otherwise I find it amazing how similar our experiences are with others. We ALL have these feeding troubles!

We are so very lucky. This could have been so much worse.