Take a Walk with Me: We ARE alive...

Monday, November 16, 2009

We ARE alive...

It has been a busy busy time. Lillian has been sick going on two weeks now, but I really think she is getting better. Each one of us in the house is taking a turn with a really bad tummy virus. NOT fun.

We had Lillian's case conference for school and it was harsh. To say the least. According to them, she tests out in the range of about 50, and a "normal" range is 90-106. While I was anticipating being told what she was not able to do, it still did not make it any easier to listen to. Harsh. I went in wearing business clothes and I think that helped me keep a straighter frame of mind. The days that followed, however, were not so easy. I cannot explain it better than to say it was hard. It was hard. It is reality and it is hard. The short story, she qualifies for all services and they recommended her to attend classes 4 days a week half days. All along we have known this was coming. We knew this was the next step, we did have concerns about her attending a classroom due to her immunity issues. The director of special education services tried a little speech on me about how hard it was to let our little ones go off to school---HELLLOO----really is it hard??? I've only sent four children ahead of her to school. Good grief. I stopped her quickly and told her that I thought it would BE beneficial for Lillian to be in a classroom- BUT- it would not be good for her health. At that point we whipped out the letter from the pediatrician and the stopped her in her tracks. What a day that was, it was difficult all the way around. This is not an easy transition. I'm struggling with it on many levels. The compromise, well, she will attend school at our "home" elementary school two days a week one hour per day. She will receive 30 minutes of each service total per week, education, PT, OT, and ST. This will all take place after school when no other children are present, sort of. She will be alone in the room. Clear as mud??? I already have a ST eval scheduled for her with our former first steps Speech Path and then we will seek further PT/OT services at our local hospital. Life is going to get incredibly busy in December.

Her stoma is still open, although very very tiny, and we follow up with her pulmonologist on the 18th. I can't really believe it has been a month since it has come out. every time I give her a treatment, I'm always looking for a t-vent to put back on. Strange. It is very strange to put her to bed with NO monitors. AND- did you know she will be THREE in nine days. THREE???? So tickled to celebrate another year!!

5 comments:

ColleenNovember 16, 2009 at 2:05 PM
I still can't believe she has that trach out! It must still be a shock! I hope everything works out well with the school situation. That must be SO hard. I'm not looking forward to these decisions.
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StephanieNovember 16, 2009 at 4:58 PM
Well , can't say I'm surprised that it was HARD! This is you and Lillian we're talking about here. BUT!!! I do have a feeling YOU will make it all just work! You're a strong force to be reckoned with! glad you posted, you know I was starting to WORRY, again.

And, thanks for your comment.I'm saying it's HARD too. And YUKKY
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Finding NormalNovember 16, 2009 at 10:12 PM
I miss you too. Bunches and bunches.
I still say...their IQ tests are not appropriate or accurate. Take that number with a HUGE grain of salt. And when you start to doubt, look to the right and read that 70% of children with her deletion die by age 1 or 2. She's here for a REASON. She is amazing, and she is going to rock that elementary school!
Maybe once we're out of cold/flu season, she could try out the developmental preschool a few hours a week? I say that as a mom whose kid just started and keeps getting cool emails from the teacher about what her kid is doing that I know she wouldn't do if I were in the room!
Hope she's feeling better. And you? Take care of yourself.
TRUST. Remember?
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LaceyNovember 16, 2009 at 11:37 PM
Some teachers are so dumb. You have to do whats best for her. She will blosom in school. Jax is "homeschooled" to avoid a classroom full of germs to. I don't feel to bad about it though because cognitively he's at about a 2 month old level. Whats he going to learn in a classroom?
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VickieNovember 20, 2009 at 12:25 AM
Sometimes teachers think they know everything and they DON"T. Good job, Momma!! Knock that lady down a peg!

I can understand the fear of classrooms. My kids are always bringing home colds or other viruses.

I hope you guys feel better. My girls are getting the H1N1 vaccine on Saturday! I am sooooo surprised the peds office had it!!
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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