Take a Walk with Me: A new day?

Tuesday, February 15, 2011

A new day?

It was an early appointment at the children's hospital. We had to be there by 645am. Amazingly I was able to go to sleep around 1030pm last night, so the early morning wasn't terribly dreadful, not to mention I did not feel like daggers were stabbing my eyes, I hate that. We arrived and were moved right along, sadly, she is a familiar face to the OR and everyone is always tickled to see her. The short story, the removed old t tubes and put in new...different shaped t tubes. She described them to be shaped like the collars they put on cats and dogs to keep them from biting themselves...she stated that Lillian's right ear began bleeding out upon removal of the tube, which is highly unusual..(go figure, not MY daughter)...she had to afrin-ize her ear to stop the bleeding. She wondered if perhaps she pulled out a polyp or granulation tissue, bc bleeding should not have been an issue.

The interesting part of the day? Her post op nurse entered the room and got report from OR nurse and looked Lillian over (she was totally zonked, hello versed and fentanyl..Lillian, not the nurse..tee hee) she turned to me and said, I have a daughter with pierre robin syndrome. We talked quite a bit. Turns out, her daughter is now 20 and had very similar issues as Lillian. Her daughter didn't suffer the severity of Lillian's issues, but so much was a like it was crazy. It felt so good to talk to someone who had been through so much of a like journey and was seeming to be on the other side of it. Her daughter had a different chromosome anomaly, but much the same symptoms as Lil Bil. She kept telling me how much Lillian reminded her of her daughter. Her daughter has to work really hard in school but is in college and doing very well. She said her daughter did not speak until she was five years old and had a pharyngeal flap put in and came out of the OR talking...HELLOOO...TALKING.

I have to tell you, I have never lost hope for the life Lillian will lead, but I've certainly felt helpless. I sometimes feel like we are in a dark tunnel and today I saw a light and felt a small twinge of relief and a little bit of wow. I have "met" many SN mamas through the webiverse, but seeing and talking to a someone in person who not only has a SN baby, but has had a journey so similar to your own is so unbelievable... very hard to put into words. She was SO encouraging to talk to.
God is ALWAYS providing...sending the people you need when you need it...

Today was surreal to me. Praise God from whom ALL blessings flow.

4 comments:

AnonymousFebruary 15, 2011 at 6:27 PM
Ah....God smiles. What a wonderful gift He gave you today, Oh Mom'o5.....just knowing someone else has walked ahead of Lillian.....and is doing very well in college....wow! Sweet encouragement. :o)
Hugs,
Hagatha
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Finding NormalFebruary 15, 2011 at 8:58 PM
God is good! I'm so glad you met someone that gave you hope. We all need those experiences! I call those my angels.
What did Dr. Ears think? Could that possibly polyp/scar tissue be what was making Lil's ear infections so horrendous?
Love you!
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ColleenFebruary 15, 2011 at 9:13 PM
So awesome that you connected with someone who understands. I truly believe that God knows just the right people to place in our lives at the right time.
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AnonymousFebruary 15, 2011 at 9:49 PM
God's hand is upon you. He will carry you when your strength fails you and you can't go on. You will find strength when you thought there was none. His Spirit will lift you. Lillian is an ANGEL sent from above. She enriches life and make brighter days for all who come face to face with that beautiful girl. Her hugs heal the deepest places within your soul and her smile will bring joy in an instant. God be with you and know that we pray and God is moved. Pastor Johnnie
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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