Monday, August 23, 2010

When I Became a Heart Mother

Every Heart Has a Story
I could say that my life would be forever changed the day the plus signed appeared on my home pregnancy test, or the day that the ultrasound tech told us that we were having another little boy, or most especially the day when we were told that our unborn child had a devistating heart defect known as Hypoplastic Left Heart Syndrome. changing days to be sure, but the day my own heart changed, was the day...that I became a heart mother.
Braeden came into the world on November 6th, 4 weeks early(and perhaps that was a good thing because he was already almost 9 pounds)I had just left my OB appt. when I started feeling my first contractions. "But I am not ready yet", I thought. Most parents anticipate their child's arrival with great anticipation, but because I knew what my son would have to endure...I just wanted to keep him safe inside of me. Within a few hours there was no doubting the fact that I was indeed in labor, and so we headed out to U of M.
I can still remember clearly the fear and anxiety I had on that day. Would I be able to hold him? Would he be breathing alright when he was born? Would he be a candidate for surgery? Would he have additional complications like the high risk OB had warned me about?
My labor went smoothly, and Braeden was whisked away within seconds...sadly I did not get to hold him after he was born, as he was having some breathing difficulties.
The first time I got to see him was a few hours later...he was beautiful with a head full of dark hair...he was intubated, and I can remember crying...wondering how I could prepare myself for all that was to come.
Five days later, we prepared to hand him over for his first open heart surgery. They allowed us to hold him for a little while beforehand, and there were many tears and prayers on that day.
The next few weeks seem to be a blur of little to no sleep,pumping,holding Braeden,trying to spend time with our older son Colin,barely eating,praying,hoping, rejoicing at every small victory and so on...
Braeden was ready to come home three weeks later, it wasDecember, a few weeks before Christmas, and we felt very blessed indeed. We had watched as a few of the families at the hospital lost their children, and though we worried...we were thankful.
Purell became our new staple at home, as we adapted to a new normal of life with a heart child. There were very few visits(cold and flu season)and very little sleep, as Braeden was very colicky. I can remember rocking him for hours as he cried...worrying that he was working his tiny heart too hard. A few months later we found out that he had reflux, and were able to start him on Zantac.
Spring came quickly, and with it...another heart surgery. At 5 months old we handed Braeden over once again, this time for his Hemi-fontan.
Although he had some issues with a collapsed lung, and an allergy to Captopril, things went realatively smoothly, and we were home in about 2 weeks.
I got to meet so many wonderful families during the next few years, rejoicing in their triumphs, and grieving with those who lost their precious children. I also started to write. All of the turmoil,hope,hardship,joy, uncertainty, and unexpected blessings...came to life though words. It has truly been like therapy for the soul.
When Braeden was two, we faced his last planned open heart surgery....the Fontan. I think this one was the hardest, and I let him leave my arms with tear-filled eyes. Although this surgery went smoothly, his recovery was very bumpy, and there was a brief period of time that they thought we might lose him. After a few bumps in the road, he came home ten days later.
As Braeden continued to thrive from a cardiac standpoint, he has had his share of issues with other things...sensory problems,eating,fine and gross motor skills, and Oh those darn ear infections! We have been though every aspect of genetic testing,neurology appointments,kidney specialists(Yes both of his kidneys are quite small, and one is located in his pelvis area)Ot,PT,speech,MRI's,swallow studies,upper GI's,echo's,caths, five sets of ear tube,adenoid removal...the list could go on and on. I sometimes joke with my husband that we still have a few specialists to check off of our list.
Yes we have lost friends through the last few years, we have even been appalled to hear people we care about say negative things about our choices, but we know that God has always had a plan for Braeden's life. A purpose that we cannot even begin to imagine. I have watched my older son grow into such a loving and compassionate young man, and friends,family,even strangers cannot help but notice how amazing he is with his little brother.
I do not believe I could possibly be the person I am today...had it not been for the trials that we have faced. Had it not been for the gift of my son Braeden. Life changed forever...the day I bacame a heart mother.
God will reward you for all of this", someone once said to me, I just smiled...looked her in the eyes and said,"He already has".

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 laugher,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.

~Stephanie Husted

Friday, August 6, 2010

A day in my shoes...

If you have a special needs child, and have escaped all of the negative(and sometimes well-meant remarks Congratulations...and perhaps this post doesn't even effect you. I try to be the "better" person, but at times being human I let my temper get the better of me. This has been just such a week...
I won't go into all of the details, but I will say this much, as the mother of a medically and mentally fragile child I fight constantly to acquire the resources that Braeden needs from day to day. It really hurts to have someone in your own family say "You knew before you had him that it would be hard on your family in all aspects...this includes financial. If you cannot afford to get him everything he needs you should have thought about that before. This was followed by the stinging words..."You had a choice". Ouch...did I? I took the best care of myself during my pregancy, no smoking,no drinking,vitamins,ate healthy all of the things that most mommies to be do to ensure a healthy pregancy. When this person meant choice...I can only assume that they meant I could have decided not to have my son. I am angry and hurt over these comments, but alas this is not the first time such things have been said. Praying for peace and above all "understanding".

I wonder if things would be different,
If you spent a day in my shoes,
Seeing life through different eyes,
Which road do you think you would you choose?
Would you understand the way I feel?
Would you judge me with little remorse?
Tell me that you'd make wiser choices?
Or show me a much better course?
Would you try to have compassion?
Would you ask honey what can I do?
I wonder if things would be different,
If you spent a day in my shoes.
Most days I know that I am lucky,
Blessed beyond all measure,
The Lord said where your heart is,
You'll surely find your treasure.
You will find that although I'm quite thankful,
I know that someday we could lose,
And if you cannot comprehend,
Rejoice that you don't wear my shoes.
Ofcourse I know we all have shoes,
And hardships we must bear,
At times you say I seem too busy,
But that doesn't mean that I don't care.
And though our paths go different ways,
In ways I cannot even name,
We can still share many things,
Even though our shoes are not the same.
I've learned what's most important,
Are things we can't hold with our hands,
Like faith and love, and courage,
Like dreams and hopes and plans.
I wonder...can you see it?
I pray God leaves you clues,
And if you should need a reminder,
Please come walk a day in my shoes.

~Stephanie Husted

Sunday, June 27, 2010

Whenever I get sad...

There you are making me laugh!
Make a crazy face I said, and you complied :)

Friday, June 25, 2010

It never ends...and I'm thankful

"It just never ends", I told my husband the other day. If it's not insurance woes, it's another ear infection, if not something going wrong with one of the cars, then it's Braeden's liver enzymes coming back suspiciously high...always something. I should certainly learn to savor the non- complicated normal days.
Let's start with early May. Braeden caught a nasty virus which caused high fevers for more than a week, the pediatrician ordered bloodwork and a chest X-ray. The bloodwork showed unusually high liver enzymes, which she noted were probably due to whatever virus he had. He weathered the virus okay, but then caught pinkeye. A few days later we all had the virus...along with the pinkeye...(fun fun)
We were all homebound for more than a week(emptying our cupbards, wearing sunglasses in the house, yes...were were all quite a and Braeden seemed to get over the pink eye realatively quickly, but I caught such a bad case that I lost my sight for several days. I actually scheduled my first visit with an eye doctor, and he gave me some steroid drops which helped. It has been more than 6 weeks, and my vision is still not 100 percent normal, but much better.
The second week in May, I took Braeden to Grand Rapids to be evaluated for an intensive feeding program. He is 5 years old, and I still cannot get him to eat much. We will be placed on a waiting list, and once accepted it will be an 8 week program. I am still not certain how were going to pull it off, so your prayers are appreciated. Third week in May, my doctor informed me that I need to have an echo right away, as the last one that I had showed mitral valve prolapse, along with moderate mitral valve leakage. They also noted that my aortic and tricuspid valve are leaking. Starange that I would never have known, had I not decided that we all needed echos after Braeden was born. End of May...a much needed break. Braeden graduated from pre-school :)
First weeks of June...ENT visit. It was decided that due to Braeden's numerous ear infections, he will need to have his adenoids removed. This is scheduled for July 2. We also had his bloodwork redone, and the liver enzymes are still quite high. What could this mean? Well his pediatrician doesn't want me researching things on the internet and going into a panic. It is quite possible it could mean gallstones, ofcouse there are other things it could indicate as well. We will have them tested again in a few weeks, and are hoping that they go down. If not, we will schedule a liver ultrasound within the month. It is not easy living with the what-if everyday...sometimes I think I am driving myself crazy. Praying for more peaceful...normal...quiet days. I promise I will appreciate them even more when they get here!

Today I felt a little sad,
About the things we face,
Today I guess it slipped my mind,
In all things there is grace.
The pieces of my life don't seem,
To fit the way they should,
My "Guide to Life" went missing,
(I know that can't be good)
And if I had a pick-up truck,
Then it would not be long,
Before I turned my life's story,
Into a country song.
And life sure is a puzzle,
With no picture to go by,
Perhaps I'm wasting precious time,
By pondering every..."why".
I should collect each piece God gives,
While knowing His plan is concealed,
And have the faith that someday,
All things will all be revealed.
And when a new storm heads our way,
And I am left spinning and guessing,,
Life's ordinary moments,
Are God's encripted blessing.
Sometimes I lose momentum,
Sometimes I fall behind,
My attitude takes two steps back,
And I fear I am losing my mind.
I wonder...can I do this?
I wonder am I strong?
I thought I was so capable,
But what if I was wrong?
The puzzle lays before me,
All scattered where I sit,
I pray God gives me wisdom,
To make the pieces fit.
And what if life's most precious gifts,
Don't fit with sheer perfection?
What if we must prepare the way,
For such an intersection?

I look at all the puzzle pieces,
Scattered in my hand,
And whisper ever silently,
Please help me understand...
The image comes together,
The picture grows more clear,
It's only through adversity,
That we can face our fear.

And when each piece has found it's place,
I'll sigh in sweet reflection,
Life's purpose can be clearly seen,
In silent...imperfection.

So I will face this day with hope,
Not give into defeat,
And trust this puzzle called my life,
Will someday be complete.

~Stephanie Husted

Saturday, May 8, 2010

Fevers, and earaches, and pinkeye...oh my!

The last two weeks have been filled with one sickness or another, beginning with Braeden having high fevers for about a week.He developed an ear infection shortly therafter, followed by pink eye, which I have now(pretty misearable for sure)The good news? His cardiology appointment went great! There are no concerns at all as far as his heart is concerned! I hope you all have a wonderful Mother's Day(and I hope my eyes clear up in time for more appointments next week :)

What does it mean to be a mother?

It's that very first moment,
He's placed in your arms,
A wrinkled red face,
Filled with so many charms,
You can't help but cry,
(As a new mother knows)
You've been waiting so long,
Just to count all his toes,
Then visitors come,
Bearing gifts that are blue,
And they laugh, and snap pictures,
Saying, "He looks like you."
And in just a few days,
(Ahh... the joy and the fun)
You'll be on your way home,
With your beautiful son.

What is it like to be a heart mother?
Again, it's that moment,
You hold your child close,
And cry secret tears,
That a heart mother knows.
In just a few days,
Maybe less,maybe more,
You'll be letting him go,
Asking, what lies in store?
And as your child lays,
In a small isolette,
You think to yourself,
I must not get upset,
And as family arrives,
You try hard to stay strong,
But your tired eyes say,
That this all seems so wrong.
You know what is coming,
Though your still not prepared,
He will leave your safe arms,
To have his heart repaired.

What does it mean to be a mother?
It is nights with no sleep,
It is feedings and spit up,
It is watching him roll,
And then finally sit up.
It is knowing this child,
Depends on you most,
It's those everyday milestones,
in which, you can boast.
And yes... there is crying,
(At time's it's quite loud)
But when he says,, "Mama".
He makes you so proud.

A heart mother...
Ahh.. yes little rest,
As the monitors beep,
And you begin to question,
Is there such thing as sleep?
And you can't go home yet,
And your kid's ask each day,
"Will we see you soon mommy?
Can you come home and play?
Real soon... you promise,
Yes...I miss you too",
And then people ask,
How you do what you do.
And you stroke his forehead,
And his fist is unfurled,
And you know for this child,
You would give all the world.

A mother...
Time passes quickly,
Soon he's off to school,
And before you know it,
Hugs just aren't "cool",
He's a teenager now,
With dreams of his own,
And one day it hits you,
My child, has grown.
And though you are proud,
For all he's achieved,
Life passed more quicly,
Than you could have believed.

A heart mother...

You've always strived to live each day,
As if it were the last,
As the mother of a heart child,
You know things can change fast.
You've seen so many familes,
Endure things you can't understand,
And while you trust that God is good,
Sometimes you just don't understand.
But you go on, because you must,
God chose you for him, and no other,
Your stronger that you could imagine,
You have become a heart mother.

Every mother...
And every mother's journey,
Begins on that day when,
She knows with everything she is,
A mother, she has always been.
Crayon marks cover all the walls,
Muddy prints scatter the floor,
Toys and messes everywhere,
And yes... laundry galore.
I must have the best job that there is,
(Despite all the clutter and mess)
My children.. they remind me,
Life shouldn't be such a stress.
Each and every day we have,
(To laugh, to hug, to play)
Is a memory I'll always have,
And nothing, can take that away.
I wouldn't trade a moment,
Or all that they've taught me to see,
I'm blessed to be a mother,
It's more than I'd dreamed it could be.

~Stephanie Husted

Sunday, April 18, 2010

The Woman in the Mirror

The Woman in the Mirror
By Cheryl Veenstra

I saw an unfamiliar face in the mirror today. She caught my eye as I rushed to start the day. I hardly recognized this woman. What had changed in her eyes? She was no longer young, naive and viewing the world through rose-tinted glasses. What had caused the worry lines and thoughtful brow? How could she look so fragile and weary, yet also determined and strong? Around some corner on the road of life.......she had been shaken to the core of her very being.

There was a time when only tears and fears were reflected in those eyes. A doctor's unexpected words, the future suddenly uncertain......gray, shadowy images of the vague and scary concept of her child coming into the world as "disabled". An incredible journey began that caught her by surprise and would take her places she never thought she would go. The journey had been long at times and she had shed tears of pain and tears of joy. She'd had hopes and dreams dashed in the blink of an eye. She'd asked the question WHY? She'd had friends fail her and not know what to say or how to help. She'd seen her child suffer. She'd cried silent tears into her pillow at night. Tears of exhaustion and fear. Tears of helplessness and longing. Tears of thankfulness and relief. Tears that are choked back during the day, but are unleashed like floodwaters in the safety of the night to wash away any walls being built up to protect her heart. Nights of worry blurring into days of endless responsibility. But then slowly, but surely, her broken heart begins to heal and mend.

The same pity she had once felt as she watched a mother hold her 'special child' close was now looking back at her in the eyes of strangers. But a smile tugs at her lips as she suddenly realizes that now she knew the secret! The hard-fought, carefully guarded secret that was slowly revealed in the depths of her heart.....but only after the tears and anguish of the first days and weeks of this new life. The illusive truth that mothers of special children discover as they take their first faltering steps down this new path........It was okay. She and her child could survive, even thrive! It was not as grueling and unforgiving a road as she had imagined. The fog, confusion, despair and fear were being slowly replaced by peace, acceptance, contentment, joy and gratitude. A mother's unique, unconditional love changes the equation that may look hopeless and tough from those outside, looking in. She will fight for, live for and die for her child. These special children transform those around them into different people. Stronger people. Dare I say it......deeper people. Long gone are the days when all they had to worry about was where to vacation or what color mini-van to buy. They now struggle with life and death medical issues. They must answer their child's questions about life's unfairness and pain. What remaining strength and energy they have is spent trying to make their 'family life' as normal and happy as possible.

A twinkle returns to the eyes of the woman in the mirror as she takes a deep breath and remembers what she's been fighting for. How very worthwhile this journey has been! This child is an incredible gift and it is a privilege to be given the task of raising her. Her child is beautiful and perfect in her eyes. She longs for her child to be seen by the world through this filter of love, acceptance and potential. Could others take the time to see past this little girl's slower steps to see the life and love reflected in her eyes? Would her child be able to see herself through the filter of contentment that the woman has journeyed so long to discover?

Hope was rekindled as the woman's eyes grew brighter. The future remained uncertain, but the incredible, protective love she felt for her child threw a warm blanket over the cold, dark storm clouds that used to threaten her very soul. As she threw open the doors of her heart, she felt the warm sun on her face and she beheld a beautiful rainbow of intense beauty and unmistakable peace. Hope still comforts this woman who cries in the middle of the night. Love gets her through each day. Faith takes her hand and leads her around each corner and through each deep, dark valley. Peace soothes her heart as she relinquishes control of their destiny to One wiser and all knowing. Joy brings laughter and smiles to those tired eyes once again. Each day is recognized for the gift it is.

I gave that woman a smile as I left her at the mirror today. I'll see her again soon and I'm curious to see how she will continue to change and grow. She's not the same young, carefree woman she used to be, but that is okay. I like who she is becoming and I feel comfortable in her life. The sun is shining, the day is brand new, my child is humming and God is so good!

Thursday, February 11, 2010

Happy Heart Week

Braeden and his surgeon (Our hero) Dr. Bove

My child reached for me today,
and I wanted you to know...
that as I spend each day with him,
and get to watch him grow,
as he cuddles close beside me,
wraps his fingers in my hair,
I know he would not be here now,
had it not been for your care.
Your hands rebuilt the tiny heart,
that beats within his chest.
Had others never seen his scar,
they never would have guessed,
that a man could take but half a heart,
and help a child to live,
we thank God for you everyday,
and all the joy you give.
This journey is uncertain,
but, with hope we may succeed,
we would not tread this path at all,
had it not been for your lead,
Braeden is a miracle,
(He's cute and sweet and smart)
We thank you for our precious son,
with such a special heart.

~Stephanie Husted

Braeden's journey...

Visits from my friends