A night at the farm.

Patience

Matthew and Hannah attend a weekly Wednesday night children's church with Jackie.  Jackie has taken them for the last 3 years.  They really enjoy it.  A week ago, Matthew brought home a paper cup filled with dirt, grass seed and covered with hoisery.  He told me that it was his Patience Pet.  The lesson that night at church was on Patience and every child left with a Patience Pet complete with instructions.  Matthew has faithfully watered his pet every day (some days with a little prompting from mom). 

Patience Pet-  Day 9

Be patient, then, brothers, until the Lord's coming. See how the farmer waits for the land to yield its valuable crop and how patient he is for the autumn and spring rains. You too, be patient and stand firm, because the Lord's coming is near.  James 5:7-8

Practice makes perfect.

Matthew's spring program is rapidly approaching.  I have a feeling this year's program is going to be more of a production.  Matthew talks about it every day.  He even brought home a booklet with all the songs printed in it.  Tonight, Matthew performed every song in his booklet for the rest of the family.



Defining Moments.

11 years ago today, was Mallory's 1st surgery. 

Little did we know that day that over the next 11 years, that our poor girl would endure surgery 9 more times ranging from ear tubes to open heart surgery. 

As new parents, young parents, we were ignorant in those first days of the gravity of our situation.  It was almost like a dream.  Waiting for the moment when you awaken and everything is back to normal.

What we didn't realize was that our "normal"  had been redefined. 

God had a grand plan for us and for Mallory.  Over the next year, our eyes would be widely opened to the joys and trials of raising a child with Smith-Magenis Syndrome. Our days were quickly filled with appointments.  Doctors visits.  Medications. Therapists.  Lab.  Xrays.  Parent Educators.  It was like we were on auto-pilot navigating each day around  the new constant needs of our child.    

In retrospect, I now realize that we did a lot amazing things for and with our daughter.  She has made huge strides.   Not a day goes by, that I don't remember where we were 11 years ago or reflect on the path that life has taken us or look forward to progress that we will continue to make.

11 years ago today.

11 years ago today, was the day we met fate.
We took our precious 8 week old baby to see the cardiologist.
We knew that she had a heart defect but we did not know the severity of it.
Tetrology of Fallot.  Such a foreign word to me that day.
Speak to me in a language I know. Please?
As the cardiologist began to assess Mallory, I quickly began to understand "just how bad it was".
My training in the medical field was my friend that day. 
Low oxygen saturation.  Tachypnea. Cyanosis.
All things I understood.

"Your baby needs to have surgery.  As soon as possible.  She is not stable.  She will need to be flown to a higher level facility.  What is your preference?" asked the cardiologist.

"Where would you send your child?" I asked.  Not paying attention to distance or even if our insurance would cover.  I wanted the best.

"Children's Mercy" he replied and the decision was made.

Things moved fast.  I was numb to everything.  Phone calls needed to be made, but I didn't even know where to start.

Once, Mallory was on her way safe in the hands of an awesome flight crew.  We headed home to pack.
I stopped by work and told my boss that even though I just returned from maternity leave, I was going to need some time off.  He understood.  I only hope he knows how I truly appreciated his support as a boss and friend during that time.

We made the drive to K.C.  We knew little of this metropolis.  The turnpike attendant gave us some directions but we still ended up lost.  We drove through a part of town that was questionable and to be honest......scary.  We sat low in our seats with the doors locked and prayed that we wouldn't make another wrong turn.

We arrived at Children's Mercy and were met by gracious volunteers that took us to the nurses station to find our daughter.  We were met by a social worker who informed us of the events that would take place over the next couple of days. 

Surgery, ICU, Recovery. 
All things an 8 week old baby should not have to endure.

Since we traveled a great distance and our daughter was listed on the critical list (not a list you want to be on), we were provided with a family room at the hospital for the next two nights.   We headed off to bed after seeing Mallory, but hardly slept knowing that surgery would be the next day.

When Dad's Away.

Todd has been working out of town a lot this year.  It's involved a lot of nights away from home.

The kids and I have managed pretty well. 

But, not a night goes by that we don't pick up the phone and give dad a call.

The kids are at an age where they like to talk on the phone. 

They like telling their dad about their day.

They each take there turn and usually wait pretty patiently for their sibling to get done.

Mallory enjoys the phone calls the most.

Her eyes light up and she tells us all to "shhhh" so she can talk to her daddy.

Even, Dot misses Todd while he's out of town.

Most evenings are spent watching a movie and camped out on Dad's side of the bed.

Another chore?

 Hannah is almost tall enough to reach the sink. 

I was washing dishes and she was trying so hard to do them herself. 

It won't be long and she can take over this task for me. :)

Leaves me speechless...

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Looking Back.

In 2006, Matthew loved Thomas the Train.  This is where his love of trains began. 

Thomas was making an appearance in Baldwin City.  A short two hour drive away.  We loaded up the kids (Hannah was just a baby) and braved the blistering heat and humidity.  Matthew was timid at first.  He then cried most of the trip.  After the ride, he asked to go again.   

Queen of Text?

Hannah couldn't possibly be just 4 years old.

There are days that I wonder if she has jumped ahead to 16.

Matt's Collection

My kids have grown a love for antiques, flea markets, and garage sales. Matthew has started his first collection.  He chose glassware.  He knows exactly what he's looking for when we go shopping and is eager to take his new treasure home to display it.

Photos for Grandma's Party

New Earrings...... Just like Giz!

Hannah has had her earrings long enough now that we can switch them out.  We bought several different ones at the mall last weekend.  These are her favorite.  Horses that look like her favorite horse, Giz.

She had Jackie put them in today so that she could go out to the pen and show her "boy".

She could hardly contain her excitement, chessy grin and all.