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August 20; 3 days 16 hours till surgery

posted Aug 20, 2010, 1:48 PM by Sean Molby   [ updated Aug 20, 2010, 4:53 PM ]

Today’s update is a little different. I have posted below this, some poems that help express what we feel. If you just want to skip to the bottom for my actual post feel free but I really found these helpful when I read them.

 
 
I am a Heart Mother

 

One day my world came crashing down, I will 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'm really not that strong
It seemed my heart was breaking. As, I'd loved him for so long
I will not give up on this child! Despite your best "advice"
I will give my child a chance. No matter what the price!
And I will learn all that I need to help my child to thrive
I'll even use that feeding tube My child will survive!
And he'll needs lots of therapy? And he just can't gain weight?
Alright God I can do this. I will not curse our fate
The feeding pump beeps (at 3:00 a.m.) It serves as my reminder..
How many parents would welcome that sound? Tomorrow Lord, I will be kinder
Another angel earns their wings and I run to my sleeping child's bed
I watch him then, for quite awhile..(I bend down and kiss his head)
Then I cry for parent's whose lives 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; my heart whispers, "Please let him stay".
From pacing the surgical waiting room, to sitting by his hospital 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 for him I would face any trial...
That same scar I trace with my finger (It's the door to his beautiful heart)
You knew how much I'd love him. (Just as You loved him right from the start)
A heart mom is always a heart mom (wise beyond all of her years)
And for those who have angels in heaven. Our hearts share in all of your tears
On Mother's Day I will remember. You chose me for him (and no other)
And I will embrace that beautiful day………………..When I became a "heart mother".

 

 

 

 

 

Somewhere

Somewhere...someplace... today...                            A family is waiting to hear.                                     
Is something wrong with their baby?                          The answers aren't quite clear                              
 This family has entered an unwanted world               And they just don't know what to expect
Somewhere...someplace... today…                             They first heard the words: heart defect
And how they hoped this was not true                       And thought... this cannot be...
I too... know just how this feels...                             For one day...this was me.
Somewhere...someplace...today...                            A man and a woman embrace               
Their baby is in surgery                                              They long to see his face...
They haven't got to hold him yet                                .......Without a cord or line
They pace the room awaiting news                            And hope he'll be just fine
Prayers fill this busy waiting room                             And mom and dad are scared
Somewhere...someplace..today...                             The tiniest hearts are repaired
Somewhere...someplace...today...                            A child's growing fast.                       
Smiling, laughing, thriving                                          His mom thinks...can this last?
It's almost easy...to forget                                        That anything is wrong...
Somewhere...someplace..today...                             Her child seems so strong.
Somewhere...someplace... today...                          A little boy fights just to live                     
A father holds his tiny hand...                                   His love...all he can give...
The doctor's are all baffled.                                       They fear that he might die...
Somewhere...someplace...today...                           A family says goodbye...
Somewhere...someplace...each year..                     More than 40,000 families will see        
what it means when something is wrong,                 They will face a CHD.
Today...for just a moment...                                   Stop...remember...reflect...
Make time to tell someone you know.                     "I've been changed by a heart defect".

 

CHD: Congentital Heart Defect

 

 

Some Bonds Cannot Be Understood

Some bonds cannot be understood.                            Unless you have walked them before.      
A path that I would not have chosen.                          A future I just can't ignore.

We've all watched our children intently                        Memorizing each line
And let them leave our loving arms                              And prayed things would be fine
We've paced the halls awaiting news                            And wondered just what lie in store
We've felt our own heart's racing as                             We walked through an ICU door
We've seen the child we love so much                          Struggling to overcome
The lines...the cords....the monitors                            No thoughts...no words...would come
We've prayed for an improvement                                We've laid it in God's hands
We've cried...we've hoped...we've worried                   We've wondered of God's plans

We've learned just how a heart works                           Each valve and artery
We've asked a lot of questions                                        We've faced each surgery
And somewhere down this well worn path                     We've met more families
Who know exactly what it means                                  To live with this disease
We've smiled at every triumph                                      And shared in every sigh...
We've prayed for a child that struggles                          And each family that must say goodbye
Some battles are fought with bullets                             And weapons made for war
While these are fought in silence                                  Behind a hospital door
We've wondered what lies in our future                         Been thankful for just one more day
We've stopped and watched with tear-filled eyes           Our children...as they play
We've struggled with ounces and weight gain                 Why won't my child just eat?
But heart mom's ...we're a tough group                         We've learned how to face a defeat
We've faced those moments...others do                         When life has got us stressed
But it doesn't take long to remember                             That we are richly blessed
We've taken on a whole new role                                   One we wouldn't exchange if we could
We know that life is difficult                                         We hold onto all that is good
God chose each of us carefully                                       I do believe he smiled...
Some bonds begin with strangers...                                And just one special child.

 

 

 

 

I am the Father...

 

My child was born with a heart defect. Its "my job" to be strong...
And tell my wife things will be fine.    (And pray that I'm not wrong)
And still the bills need to get paid.     And things need to be done.
And it's so hard just sitting here.        "I want to hold my son"!
I lean down as I watch him breathe.   "Keep fighting", is my plea.
"I thought I'd teach you to be brave....But son, you have taught me".

I hear the beeping of all those machines (They're helping my child to live)
I wish that I could take his place...       (Man, what I would not give!)
To have the faith and strength I need  to hold back all my tears...
to say I know he'll be okay...              despite all of my fears...
I'll only fall down in defeat...             when no one is around
I'll be the rock she surely needs          I’ll stand on solid ground.
A daddy says," come to my arms...     and I'll chase those monsters away"...
This daddy's heart cries out to God... and says, "Please let him stay".
A daddy needs to cry sometimes...     and God must see right through...
that “tough daddy exterior"............for He is a daddy too.

 

 

These were written by Stephanie Husted, she is also a mother of a child with Hypo-plastic Left Heart. I was given the first poem by a nurse at the hospital that I became close with; she wanted to give me something that helped me know I was not alone and that others understand how I feel and what I am going through. I thought I would share them to maybe help some of you know what goes through our heads. I could not express myself any better than she has.

 

I am asked all the time “how do you do it” my answer to this is….. “How do I not”

Tristan is my son, my baby. I hate that he has to go through this but it does not make me love him any less. In a way, I am beyond grateful for all that we have gone through. It takes someone special, like Tristan, to open your eyes and see how wonderful and precious life really is. It may not be perfect but it is pretty damn close, despite the stress, unpaid bills, and everything that we all complain about day to day.

 

Remember:

You can’t stand your boss and if you have another day like today, you might just quit…..think of the 2,976,326 jobless individuals who search endlessly for employment

 

You have had the worse day ever…..think of the wife that is sitting in the ICU saying her last goodbyes to her husband of 52 years

 

The stupid bag boy over packed your sack of groceries and they all fell out, rolling all over the parking lot as you jump around broken glass to salvage what you can…..think of the millions of underfed people around the world that would eat the food off the pavement just to fill their bellies
 

Your are pissed because your child dented your car….think of the parent that would do anything to let their child borrow theirs but can’t because he lost his battle with cancer, leukemia, CHD, MS, or so many other ailments that countless children suffer with everyday.

 

So many times we take life for granted. The good AND the bad of it. I remember after the second week Tristan was at Children’s Mercy, Briah was up visiting and we were at the RMH and she had her backpack. She had had a hard day/week herself and was really tired. On the way up the stairs to the room she dropped her backpack and her papers and books went flying everywhere. She was pretty ticked off, she was picking up her books and slamming them in the bag shoving papers in complaining the whole time and crying saying this was the worst day ever.
 With everything that Sean and I had been through that week I had to smile and be grateful because I was able to walk over help her pick it all up, look at her and say, “I know you are mad, it would be frustrating to have dropped your bag but let me say, this.... this is soooooo not the worst day ever, the worst day ever is being told your son has a Congenital Heart Defect, dropping your bag just sucks”!
 
 That conversation was over 4 months ago and today I can look back and say I was wrong, the worst day ever is not being told your son has a Congenital Heart Defect, that too just really, really sucks!
 

The saying that someone else always has it worse is truer that you can imagine. No matter what you are going through you will ALWAYS be able to find someone who has it worse because regardless of your difficulties, they are your difficulties and you will always manage to get through them but if you were to take the time to hear someone else’s story you would realize that things for you really aren’t so bad after all. And the funniest thing about that is when they hear your story they are thinking the exact same thing!

I know life it tough but that is what makes it life. If everything were perfect all of the time it would be fairly boring and uneventful. It is all the horrible days we have that make all the good ones so much better.
 
Tristan is still doing good, considering. He gets tired a lot faster and is sleeping much more often than he used to. His color is starting to get a little bluer which makes me appreciate his pink color (and miss it) so much more, he is definitely ready for his second stage. As we prepare for Tristan’s surgery Tuesday I can only reflect back over the last 4 ½ months and be eternally grateful for the time and memories we have been given with him; and hope and pray that we will be given over 1000 more months to make even more!

Please pray for Tristan as we start this next journey in his life!

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