Take a Walk with Me: News

Thursday, March 11, 2010

News

Sorta news anyway. I had a call out to the surgeon and hadn't heard back, so I called again today. Apparently, Lillian's ENT is out of town til Tuesday and they will call me Tuesday to set a date for the new surgery. Thankfully, we will not have to be seen in her office prior to the surgery date. I was just looking at her picture on the page and remembering how I felt at that moment. To look her and realize how seemingly chubby and perfect she looked, yet so many things were going so very wrong in her tiny body. It has been a difficult week here, for me personally. One of Bethany's classmate friends lost his eight year old brother to cancer over the weekend and a friend from my former church gave birth to her baby that had passed into the Father's arms on the same day. One of my close friends is struggling quite a bit and I want to help her and be there for her, but I'm not a very good comforter because I just find myself weeping right along. Lillian had a puking episode today and that just about does me in. It frustrates me and I know it is so unpleasant for her. I can be so grateful and so irritated all at the same time....ugh. I got information from our speech path regarding feeding tubes...did you know that tube fed kids are more apt to have reflux??? I know she gave me the information so I could be more informed and I was happy to receive it, but then after I read it, I wondered how in the world she'll ever have a positive eating experience. Rough week. Looking forward to spring break.

4 comments:

ColleenMarch 11, 2010 at 10:10 PM
I'm sorry to hear that everyone is going through so much. It's hard to make sense of all of it sometimes. Keep us posted on when Lillian's surgery will be. Hugs and prayers!
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Team Carter JayMarch 11, 2010 at 10:25 PM
It sounds like you really have had a rough week. I hope that the weekend gets better for you, and please keep us updated on her surgery.
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LaceyMarch 11, 2010 at 11:43 PM
there have been many times when I've been grateful and grumpy at the same time. Its easy with these kids! How come they didn't close the stoma when they took the trach out? They should have known it wouldn't close on its own, its a surgical opening.
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The VW'sMarch 12, 2010 at 8:43 AM
Hope your week gets better friend! I think that grateful and grumpy go hand-in-hand, unfortunately! At least you are remembering to be grateful too! Hang in there! Love and Hugs!!!
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"...I am fearfully and wonderfully made" Psalms 139

Lillian Faith Halcomb was born to us as our fifth daughter. We anxiously awaited her birth and due to complications with Mommy, Lillian came into the world a little over 3 weeks early. It was immediately obvious that she was in distress. She was unable to breathe or keep her oxygen levels up. She was quickly transported to our Children's hospital in Indianapolis. She was on a vent by the next afternoon and we were told she was suffering from Pierre Robin Syndrome and Pulmonary Hypertension (high blood pressure in the lungs) Genetic tests were ordered and something new developed hourly. Her heart and kidneys had defects as well. By December 5th, we were taken to a room and told our daughter would need a trach tube to breath, she would need major heart surgery and she also had a rare chromosome defect. She has a deleted portion of chromosome and a trisomy that are intertwined. We were told that 70% of children with her deletion died by age 1 or 2. They did not know how her life would play out since she had a complex case. She also has a cleft palate, overlapping toes and some facial features that are common with the genetic diagnosis. She also suffers from a brachial plexus palsy in her left arm due to some of the complications of her birth. Her story continues here. We covet your prayers for her well being and our family. We are so blessed to be Lillian's parents and know God has a perfect plan in all of this..."Your eyes have seen my unformed substance;And in Your book were all written The days that were ordained for me When as yet there was not one of them." Psalms 139:1

In The Shallows

In the Shallows In the shallows so long, forgetting what's wrong. The tide rolls in, the tide rolls out. My head above water, the waves calmly go. It's a manageable place, then the waves start to race. I'm farther from shore, in the shallows no more. The waves..they get bigger, they grow and grow. The sun is still out, those on the shore continue about. Nothing is different for those on the sand. They wade in the shallows, they don't seem to know. I see, in the distance, another soul with persistence. Their wave's a bit different, also unseen, unexpected. We'll get back to the shallows, but, when, we don't know. I think I might sink, the waves get bigger with each blink. My breath harder to catch in the ocean I'm given. Hard to forget about all of the sorrow. Time seems to still as I gasp and spill. To the others around me, I'm just out for a swim. I need back in the shallows. I need a tow. I try to hold fast to He, the ONE who holds me. The waves dying down, my breath easy now. In the waves, in the shallows, He IS where I go. November 9, 2021 written by me.

Inpsired Poetry

Do you see happiness
Do you see love
Do you see faith
Do you see compassion
If you are watching...

Do you see the struggles
Do you feel the pain
Do you understand the trials
Do you look deeper
If you are trying...

Do you know the bitterness
Do you know it's roots
Do you see it growing
Do you know how to stop it
If you only knew...

Do you know the difficulty
Do you know how to cope
Do you think it will change
Do you wonder why now
If you only could...

I'm different now
I'm trying to fit in
I'm feeling lost
I'm trying to grasp peace
If only...

10/31/2010

I want it to be me

Every labored breath, every needle in your skin, every prod and poke-I want it to be me
Every tube inside you, all the surgeries, all the pain you suffer- I want it to be me
All the hospitalizations, all the doctors to be seen, all the therapies- I want it to be me
All of the diseases, all of the infections, all of the unpleasantness- I want it to be me
Every single fever, that seizure, just that one, how can I explain it except- I want it to be me
Every puked up feeding, all the food you don't get to eat, every cough and discomfort- I want it to be me
But its you, it's always you the weaker one, the small- why can't it be me
Take it all away, make you well, give you some relief, but I am simply helpless, just the standby, I don't want that to be me.

9/26/2009

In My Womb
Began your life
A token of love
Between husband and wife

In my womb
You formed and grew
What lie ahead
Noone knew

In my womb
Safe, nestled, and warm
Days passed by waiting
For you in my arm

In my womb
No battles to fight
No struggles for you
You were alright

In my womb
Is the very place
I wanted you back
When we met face to face

In my womb
You were no more
The fear settled in
The guilt to my core

In my womb
The silence cried
It seemed as though
A part of me died

In my womb
God made a home
For a blessed angel
On this Earth to roam

In my womb
His work not done
He sent you along
So I'd rely on the Son

In my womb
The journey did start
I'll never regret it
You have my heart

In my womb
Began your life
A token of love
Between husband and wife.

Michelle Halcomb 4/23/09

Laughter without Sound

Your mouth is open, tummy rolls
To you our hearts are bound;
Who'd believe there'd be such joy in
Your laughter without sound.

Your brown eyes how they twinkle,
Your little face so round
Your toothless grin, your chubby cheeks
Your laughter without sound

Your hands awaving, fists all clinched,
Your feet kick all around
Nothing could be sweeter than
Your laughter without sound.

The blessing that you give us
Is giv'n by God, not found
We could not imagine life without
Your laughter without sound.

Written by your Mommy on August 25, 2007

Mommy Loves You

I love your little piggies and those hands that hold mine tight
I love your big, brown eyes and those tiny lips, just right.
I love your curly hair and your button nose with all my might.
All these things about you are so precious to my sight.

Love, Mommy

It Amazes Me

It amazes me
the life that one so small can bare
Hard and frought with challenge
Yet, so very unaware

It amazes me
How you capture all the hearts
of those who are around you
even from the start

It amazes me
that many have no clue
the daily stuggles that you face
just to make it through

It amazes me
that on those who we depend
continually cause problems
it seems there is no end

It amazes me
it makes my head spin
when people who have no idea
say "I know where you've been"

It amazes me
And I'm just beside myself
when you're treated not much better
than a book upon a shelf

It amazes me
that each and every day
you just keep on going with the flow
there is no other way

It amazes me
how you have come so far
beating many of the the odds
how much you raise the bar.

Michelle Halcomb 10/31/08