Take a Walk with Me: June 2023

Thursday, June 29, 2023

Infusion day

Yesterday Lillian had her infusion in KY. It went smoothly, except for the IV which seems to always be an issue. We got a nurse we knew and I'm starting to recognize people, which is interesting because this is only the second time we've actually seen their entire faces. No masks. We are due to see her GI doctor in two months and make some decisions about her next scopes. They were not joking when they told us her immune system would be compromised. I can't remember her being sick so much since she was a little girl. I don't like it. She's even gotten to the point that she begs me to take her to the hospital. Heart.break.ing. I'm not sure, at this time, how much longer we will continue to have the infusions.

Matt is doing well, still in cardiac rehab and still not yet working full time. He struggles with fatigue. Pretty normal I think.

After our all day event in KY, we had another BIG even to attend that evening. Our fourth daughter, Madeline, got married to her long time boyfriend in a small, private family ceremony on her now, Grandparent-inlaws property. It was short and sweet which is what they wanted. Hard to believe I have another son-in-law, though we treated him like family anyway. We enjoyed getting to meet his parents and grandparents. I cannot believe I have three married kids. Lillian was not happy to not be involved in the wedding, but she quickly got over it and enjoyed being there.

Thank you for continued prayers as we "juggle" a lot of stuff in our lives.

Here's a little snapshot of last night.

Monday, June 5, 2023

And so it goes

All the "normal" milestones she missed. I remember being ecstatic when she could lift her pinky finger....or the first time she actually smiled. I also remember crying because she didn't smile at me first. My heart believed she didn't see me as her mom, but as her "nurse". May sound crazy, but hey I'm just giving you the truth as it seemed back in the day.

There is a friend from church that Lillian identified as "one of her people". When she does this, we usually don't know why...we don't know the reasons. So, Sondra has been one of her people for a many years. She seeks her out to hug her on Sundays. One Sunday, when Sondra was at the altar, Lillian insisted on going up beside her and knelt and prayed beside her. This past Sunday, Lillian left our seat, when the preaching started, gathered her things and went to sit by Sondra. A few weeks ago, Sondra sat in the same row as us and Lillian immediately picked up her things and went to sit down beside her. It was not lost on me, that my "teenager" got up to sit with someone else on Sunday morning. My heart took joy in it.

I so appreciate the love our friends pour out on Lillian. I love that they accept her and continue to try to build relationship with her even though she can be shy, sometimes difficult, and a lot of times difficult to just plain understand her communication. I appreciate that they don't avoid her. I appreciate that they continue to make efforts to communicate with her. She doesn't have "typical" friends. I adore when other kids speak to her (even when she often ignores them)

So, all that to say, thanks for loving us. Thanks for loving her. Thank you for adding joy to my days. You will never know how much I appreciate it.

"...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