Big Sister

How exciting it was when the new baby sister arrived!
She had lots of jet black hair.  Big sister had lots of blond hair.

Lots of kittens, pigs and trees at the home of just us three.
We were young and thinking of all we needed to be happy.
We went to church but Jesus did not reign.

She was so excited to get a Bible when she turned three.
"Look Grandma! I got a Bible for my birthday!" 
She said this as she pulled Grandma to sit and look at the pictures with her.

Every VBS and Christmas program she had six adults to watch, two parents and four grandparents.
She was the first grandchild on both sides and the apple of everyone's eye.

When she was born she had ten grandparents! Amazing!
At her first birthday party eight grandparents came to celebrate and say,
"How old are you?" 
She would put one finger high above her head and show off to all as she rode her rocking horse up and down.

She learned to walk at Blue Ridge.
She learned to talk at Maryville.
She learned to share at Pickering.
She knew that Jesus always cares.



Thought:    Jesus can walk through the generations but someone must start.

Times Two

They were not twins but everything was double.
Two diapers, two cribs, two car seats, two highchairs and two feedings.

The trips to Children's Mercy included one more.
That one more was on the move.
We had to watch closely for crawling over her, pulling her hair or getting something over her face.

An invisible boundary was established, unknowingly.
He would go, but she needed care.
I would call out for him to keep him close. 
Soon I didn't need to call he just stayed close while I cared for her.

The day came when the boundary was discovered.
Why is he only going that far?  Why won't he run further out?
"Go on you can run out there," I urged him.
That was all he needed.  He has been running ever since.

We had wonderful college girls come to our home.
They gave her attention and care.
Wait.....he thinks they are here for him.
He runs to the door excitedly.
He knew she would turn him upside down by his feet before she helped his sister.

Diaper changing time was routine.
She was on a blanket on the floor. Change one and then the other.
Stand one up to go off to play.  Leave the other to lay and play.
Repeated actions make thinking go automatic.

She can stand but not balance.
Oops! Wrong one to run and play. It's the other one I found out just in time.

Big sister was wonderful. She could run and get or rescue or entertain.
There was always something that needed done.
Will she ever know how much she really helped?
Even if he did seem like a little bug.




Thought:  Jesus provides what and who we need to get through the trials in life.

BLESSINGS!

"I think we can handle two children with disabilities if that's what happens."  This was my thought as we discussed having a third child.  We wanted to try again.

It was a go from the start.  Confirming our determination to follow God's will.  No one knew if this child would be O.K. but we were excited to have a new one on the way.  Life was good with two beautiful girls, one six and the other ten months.

"No, it wasn't an accident!"  I wanted to shout as I pushed away the feelings of judgement and guilt.
I thought others were staring at us; a very pregnant mom holding a nineteen month old on my hip.
I was excited to be pregnant.  I was trusting in God.

I thought I could hear people say, "Can't you see what a 'mistake' you already have."
She is not a mistake!  I argued in my head.  We love her just the way she is!

"No, I don't want a test to see if the baby has a disability!" I told the doctor.  This is a life knit together by God.  This baby will be a blessing no matter what!

"WOW!, what was that?", I asked in fear.
He made his presence known with the hardest kick I'd ever felt.  I hope all is well inside.
We didn't know.

It took energy and I was tired as I cared for her on the outside and the new one on the inside.
Oh, but so exciting to us to watch and wait for a this new life.
What will our future hold? We had hope.

"It's a boy! It's a boy! I knew you could do it!", his father shouted.
Yes, he had strong muscles in his legs like we had not seen before.
Everything about him was beautiful!
He was a miracle sent from above.




Thought:  Worrying about what others think keeps you from hearing God's voice.

Adjusting

She will never walk, talk or run.
The truth was told to grandparents on that hot July day.
Her brain is smooth.  It did not develop right.
The question, "Why?:...again.

The second grandchild to four people. 
What emotions and thoughts did they have?
The death of what you thought you had. 
A fear of what the future held.

We were just as proud and loved her just as much.
"What a pity!", the old relative said as she looked at her.
This made us angry and hurt.
How could others see her as someone to pity?

She was our child given to us to love here on the earth.
We cared for her each day while the background to our lives held questions.
What would the future hold?  Can we do this?
Life went on with work, home, church and family.

She was used by God to teach patience, perseverance and trust.
Life was hard.  God gave the strength.
We had to keep going, keep it all together...and we did with
the one constant question pulling us down
"What did we do to cause this?"



Thought:  A calm mind and heart works best.

Acceptance

The sound became familiar. That sound of a seizure beginning.  Your stomach tenses, you get up again, you watch and you wait.  Will it be short or will we rush to the hospital. You try not to think about death but you wonder.  Is this the time? How long will we have her?  Will I plan a funeral tomorrow?

"No, I don't want to care for a child that is mentally and physically disabled!"  I cried as I hit the water with my fist.  Seizure meds on time.  Seizure meds on time.   Count and record the seizures, describe each seizure to report later. Will the medication work?

Daddy wanted her to have her own life and her own family.  He sat with tears in his eyes.  the news hit him hard.  Mommy took the news differently.  She just thought of the here and now, the next feeding, where to change her diaper. She still had her baby to care for and hug.

"You can call me at home if you need to." the neurologist told us.  "She sure looks like she is doing well," he stated as he looked at her plump cheeks. This is the day the grief process began.  The child we thought we had was gone.  The new child we now have is one to discover. 




Thought:  Fear can take over and be your boss if you let it.

The answer

Really? We got the house at that price?
We sat below the big bay window.
Two beautiful girls and a mommy who loves them.
It was a big, big house with lots and lots of room.
We had a joyful time moving in.

The specialist did not want us to see the MRI results.
He led us out of the office to come again soon.
The yellow and white truck made several long trips.
Two adults and a four month old baby.

Why is she having seizures?
I thought we had a perfect baby girl.
She is beautiful in every way.  Her eyes don't seem to follow me.
That's no big deal really.
There is no reason for this!

Lissencephaly. "It is very rare."
"I only have a few pages from a text book to give to you for information."
These were the words that rang in our ears.

Failure to thrive.  Usually the child only lives one year.
As I looked in the crib I wondered when God would take her home.
Will we have her tomorrow still?




Thought:   Panic never helps anyone.

Future Plans?

There were snakes on the rocky hill side.
Please keep our daughter safe. 
They were fishing in the lake while I lay in the camper not feeling well. 
The vacation was perfect with mountains, lakes and hikes in the woods. 
She enjoyed playing cards in the camper with her dad.

Back to work after a joyful trip. 
No, he didn't want to take me to the hospital; he would be late for work.
I insisted.
The surgeon stated, "You need to wait outside."  Now he was worried and pacing the floor.
I do not want to lie down.  The nurse was annoying.
My left shoulder hurt when I lay down, this was the warning sign the Doctor spoke of.
Emergency surgery was required.  Internal bleeding was caught in time.
The little one was back in heaven.

"You can try again in six months," the Doctor stated. "I don't know IF you can have more."
Will our family always be only three? We wanted four.
It's time to try again.  Seven long months went by.
What will our future be?
Yes! We are pregnant again!




Thought:  Jesus will carry you through when you ask him to.

What? Why?

He held the glass up to her small mouth and nose.
She was breathing, just barely.
Why were her eyes not seeing and why was she shaking her arms?

"It was a seizure," the doctor stated.
No reason why this should happen.
No clue, unless the optometrist knew.
"Sometimes eyes cannot see because the brain is not communicating with the eyes."

Back home to wonder why.
More doctors, more time.
Seizure medications were started and side effects were documented. 
It took driving two and a half hours to see the specialist.
Several tests and several months went by.

Still we wondered why.
The birth was normal, she was beautiful, she smiled at us, she ate well.
What went wrong?
Only days before it all began we had realized our dream,
"Two little girls and a new home!"
"Yes! we would not be raising our little girl by herself, she would have a sister."
"Life is good!"



Thought:   God prepares us for the hard times a little at a time.

A window can be slammed shut or it can be thrown open wide.  It is all in the decision of the one who has their hands on the window.

A window can allow the light of happiness and love in. It is all in the decision of the one who pulls the blind.

A window can allow fresh air and the scent of flowers in. It is all in the heart of the one who can decide to smell the good around them.

I am given a chance to see Him thru the window of experiences in my life.  I did not choose this window, I was not happy about this window.

Each experience, each act of obedience and each revelation revealed is another way to see more of Him.

 I am so thankful that Jesus helped me to see the view through this window, this window of my life.