Tuesday, March 31, 2015

The right pair of shoes.....

One of the greatest ways to deal with stress is to just play....

The last few days have been something.......
Two sick kiddos,
the start of spring break,
a canceled hospital visit.....
stress.....

The coughs have been loud....
the nights lacking rest.....
and tiny people needing extra love and kisses....


Some nice weather gave us the perfect opportunity for fresh air.....
some time outside to breathe....




I swear to never become numb to the blessings of my kids playing together....and outside....
It is such a big deal to see them running around.....
A big deal that I am not watching from the window as I sit inside with Parklen....
That I am not carrying Parklen around the yard to watch his brother play...
and that Phinlynn scurries quickly behind as she giggles....

Nice outfit Parklen chose for himself.....

Parklen wasn't sure he was feeling up to some time outside.....
but, we all know......you can do anything.....with the right pair of shoes...

Thursday, March 26, 2015

Changed

The Honda was packed....
Suitcases stuffed into the back, stroller, even snacks...the only thing missing was the three children that would fill the seats......and the night ended.

The sun rose .....

We were set to leave shortly...
a weeks worth of appointments ahead....

My heart sank as I heard Parlklen coughing from the other room,
one look in his direction and I knew that our plans were about to change.

Healthy and happy when he fell asleep last night...

His eyes were telling.....
they told a story of illness...
and the eyes don't lie.

I called the nurse at Children's.....
she talked with the doctor...

and an hour later,
she called to tell me that everything was canceled.

Not something that can be done with the symptoms he has....(and Phinlynn has too)
and had we come, they would have sent us home....

There will be no appointments tomorrow,
or in the week to come.....

The donation of cells by Paysen is put on hold....
the receiving of the cells by Parklen......will have to wait.

And I feel crushed.

Crushed for Paysen who has been on edge about the whole process.....
the nerves,
the built up anticipation
the quiet fear....

Crushed for his brother.....
The need of Paysen's cells that Parklen has.....postponed.

The car that sits packed full.....
in the driveway.

The schedule we had planned to keep....

Its all been stopped in its tracks.

There is little that makes me uneasy the same way that the unknown does....
No idea of when they will be able to reschedule....

As the day progressed, Parky and Phin felt worse....
Their symptoms amplified....
Lots of cuddles and snuggles....
and tissues and hand washing....

and today.....and most days,
this is our life.

A thousand moments changed by a sniffle....
days altered by a cough.....



Tuesday, March 24, 2015

Will not wait....


Sometimes, I swear........my life speeds up.  The crazy takes over, and I have trouble finding my feet.  Up is down and down is somewhere else.....
I have trouble remembering what and where and who.......
I accomplish zero things on my to do list....

There are days like this......
even weeks....

I'm living in the midst of some right now.



I have things to do,
but do them,  I do not.
Instead,
I mostly sit...........
Sit and stare at my kids, my whole family....
and then.....I stare some more.
 I watch them do the things they do.......
Play,
homework,
brush their teeth....
and I get weepy.....

Paysen......
this kid,
He is so responsible,
so smart.....
so, so, smart....
Loves to learn.
I could watch him read a book for hours.....his face changes with every turn of a page.
So sensitive,
and just all together good.

Phinlynn, I cannot take my eyes from her....She is almost always within my sight.....
Melting my heart with her gentle touch,
and then stretching my limits with her stubborn nature.
She is smart beyond what she should be....
almost 2, but acts much older...
She fills a part of me, unreached by any other.....

Parklen,
Parky,
Parky J.....
I watch him because what he does.....it is all a miracle to me.
I watch him do average things and praise God for them....
I watch him complete a math problem, or read a story.....
and I think, What a blessing this is......
He is a lover to all,
hugs like no other......
and he is our miracle.....
and to see him sitting on a porch....outside...with no mask on...breathing in the air....it's amazing....



We snuck away for 24 hours over the weekend.....to my dads house, out of town.
My kids played, and chased his dogs.....
Devan and I snuck away for dinner....
and we drove home the next morning....
It was quick,
but it was important....
especially to our kids who said, "I love that we all got away as a family..."

The kids and I are leaving in a couple of days to Denver....

and in years past, I would already be packed.....
I would have the kitchen stocked with food for Devan to eat while we're gone....
and I would have a full tank of gas....

but tonight,
I have a billion loads of laundry.....undone,
a messy house,
a scarce fridge....
a suitcase left empty....
and a peek at my cars dash would reveal a red low fuel light....

I have no motivation to prepare....
my mind is elsewhere....

but Id like to believe,
that....if you asked my kids about my productivity.....they would ensure you that I am doing what matters to them.....

After all.....the house will be messy still tomorrow....
the laundry will wait.....
and somehow....the suitcase will be filled....

but with each passing moment....
as the visions of my children pass before me....
as they get older every second.....

I know that their childhood will not wait.....



Thursday, March 12, 2015

a look......

The last few days have been filled with memories.  Memories of days passed....

They started to flood in the other night when I was up with Parklen for most of the night, he had some bone pain caused by growing and a life time of steroids.....he was unable to sleep and I found myself comforting him in the middle of the night.  I was so tired and could barely keep my heavy lids open, but through squinted eyes, I saw Parklen looking at me.  He looks at me differently than any other human on this earth....and the look is something that pierces straight to my heart.  He was looking at me as I tried all I could to ease his pain.....and he whispered, "I love you mom."  and my heart remembered.......

Remembered the years I spent easing his pain,
the sleepless nights when I lay with my hand upon his chest, waiting for each breath....

Remembered the tears,
the cries...

Remembered the nightly vomit,
the daily fevers....

I remembered the middle of the nights....
the early mornings.....

The prayers.....
The begging for God to heal my son.

Every moment spent with him has had the same look......the look that tells me that its all worth it.
That, even if no other person ever knows the moments I have spent by Parklen's side, he knows.....

He may grow up and forget....he may never remember our quiet moments.....
but I always will.

I cannot help but think about where he has been.

I think of it every day.

He wasn't just sick for a little while.
he was fighting for a long time.....
and he fights still.....

The battles are becoming easier....
as he becomes stronger....
but he fights still.....

And in the still of the night,
I remember where we have been.

And the moments are woven together....
My yesterdays form my today's....
and today leads to tomorrow.

Nothing can happen in my life that can take away those memories.....
The ones of a little boy, who needed me....and the way he looked at me when I answered his calls.....

Parklen needs more of Paysen's cells.
He is not yet complete.....
and later this month Paysen will give those to him.....
because Parklen was blessed with a brother that is brave.....
a brother that knows what it means to give.....


Remembering hurts....
more times than not,
when my heart catches glimpses of the past 6 years, I cry....
I cry because there is nothing else to be done....
because words cannot do the memories justice....
because no amount of explanation could map out our journey to this point.....

and when I cry,
I pray.

I pray that I never forget.
That I never lose the memories.
That, even if they hurt, they continue to be my guide.....

Remembering helps me to keep focus on whats important.....
to take each moment granted to me as a gift.

And to remember that,
every day is something to celebrate.....

Parklen read me a story tonight....
the tears would not stop,
and as he read the words from the pages, he looked up at me with that look.....
and both of us knew.....just how big of a deal it was.

He followed his reading with a run around the room and jumps across the floor....
He read the book to his brother....and jumped some more....

Each day.
Every moment....
Every word spoken or page turned.....
gifts.
Don't pass up the opportunity to see them as such....

The greatest moments are sometimes stitched together with tears and smiles....
and often..
a look.