untitled...

words come with struggle.  cumbersome.  awkward.  ill-fitting.  like when i would slip my school age feet into my mom's grown up heels and parade down the wooden hallway with my ankles wobbling.  that's often how my words flow from my mind to the keyboard.

i long for them to have precision and accuracy reflecting the life we have been dealt...not for pity or for sorrow but the words give me an understanding, an outlet for the myriad of emotions that overflow in my heart.

i am not able to place a bow upon this package of dementia and ultimately death...i know my prayers.  my deepest desires that i beg God to unfold, but i am afraid to share them out loud.  people will judge, see my desires as selfish & ungodly.

amber {my daughter & new +1} is bold & brave & painfully honest in her writing.  i echo her anti-prayer.

http://www.mrthomasandme.com/2013/01/my-anti-prayer-request.html

dear God-
you are a God of mercy.
please allow that mercy to rain down on pjm & us
the family that loves him so dearly, we are willing to let him go
knowing You, our Maker, will give him a new mind
and in doing so, will give us peace of mind.
amen.

the lighter side...

as a child i cried often-about everything-for no reason at all.  for reals.
spilt milk-sour milk-chocolate milk...all brought me to tears.

 i didn't know how to take or make a joke-and hated when i was the butt of one.

when i met pjm, he taught me to laugh, especially at myself.

to relish in being the butt.

our children have honed the art of laughing at their  missteps & mistakes-

they can all handle the butt with both grace & confidence.

and dementia has continued to tweak my humor-my ability to laugh at our broken life.

pjm has become a big fan of what our family has coined "double" days.
  double sock day.  gray athletic short sock meets tall white tube sock underneath.

a perfect understatement of color.

double cap day.  yep, two baseball caps  stacked upon his head like the book "caps for sale"

minus those annoying monkeys in the tree.

double collar day.  its like a pop-POP of not one but two collars.
who doesn't look good in layered polos.

double watch day.  one on each wrist-neither of which reflecting the correct time.
  this is my personal favorite as i view my watch as more of an accessory than a source of information.
that's what our cell phones are for-to tell us the exact time & date.

but the double that i found most fascinating, and perhaps even slightly inspirational,
was double denim day.

no you silly, not like a jean shirt + jean pants {how 90's would that be}...

but double denim pants day.  yep, you read it right.  

how the hell did this sweet demented man manage to get 2 {two-TWO} pairs of blue jeans on?
levi meets  lucky up close and personal.

i have skinny jeans-like so skinny i need plot my every calorie while wearing them-
and sodium is a definite NO-margarita are never on the skinny day menu!

i also have fat, feel like aunt flo is riding into town, bloated jeans.

but skinny would never fit underneath aunt flo.  not ever.

i wish i had a hidden camera in our closet to capture this dressing workout.

how did he convince the lucky's legs to remain at his ankles
while worming his way into levi. 

dear dementia.
i refuse to allow you to break me.
i will find joy  & laughter in the absurdness of you.
signed-
me

p.s.  in honor of pjm & knowing how to be the butt of a joke, today i too will wear double.
double cups.  sporty meets push-up.
take that you nasty disease-you will not break this girl.

two weeks later...

so we had a baby once...for 4 days and then her birth mom decided she didn't want to give her up for adoption after all.  i was devastated.  deny me a baby but don't give me one and then take it away.

every morning i would wake forming a scenario in my head that would reunite me with sweet hallie ree.  each night i would slip into a fitful slumber dreaming of holding that innocent baby again.  pjm was a very practical man when it came to emotions.  on the two week anniversary of hallie leaving our home, he announced it was time for me to move on-get over it-stop plotting to drive to el cajon and steal that baby back-and most of all to stop all of the blubbering.  shed no more tears he commanded.  not a single drop of saline was going to bring that baby girl back.  and i listened to him & i learned to move on in spite of that sad scar on my heart.

today is another two week mark.  there are moments i am not sure how i have made it 14 days with peter living at the "gardens".  each morning i gather myself & navigate the day knowing pjm is learning a new life while forgetting how to live.  each night i rest my head praying i sleep restfully without him at my side.  i can hear his words echoing in my head "chrissy, you are missing so much of life's beauty. those sobs distort God's joy.  wipe your tears & snotty nose.  yes, there have been a couple of major bumps this past two weeks but we made it.  God's got this.  you-me-our children."

and i realize letting go of baby hallie was followed by the miracle of jeremiah.  i have no idea where God is headed with this very painful challenge of dementia and i realize the miracle is not going to be for peter to be healed here on earth.  but what resonates in my heart is our family continues to trust, love and find strength in God even though He chose not to heal peter.  and that's the miracle...to continue to trust His goodness in the middle of dementia.

and pjm...hope you and marv are rocking the "gardens" tonight!  marv is a 65 year old early onset resident just like pjm.  looks like someone else won the wrong lottery, not just us.

finding my way...

a new year comes with a new normal for our home.
december felt like  life in a snow globe-several times in a single  day, my world would go all
topsy-turvy on me.  as soon as the glitter had settled, it would happen again.

changes have been made out of shear necessity  and here i sit in january learning to adapt to my new.
i know God has a plan and His timing is always perfect and  He loves me more than i can measure,
but today in the new i long for my old abnormal over this.

my pjm has been moved to a memory care facility.
i was no longer able to care for him-myself and sweet brown eyes.
i visit him.  he is content and peaceful.  that's what we want for a love one that is sick.
he has fallen in love with a cat...he always hated cats.

i am learning to walk solo.
yes, i have an amazing safety net of friends & family
that are embracing me in this most difficult of times, but after 26 years,
i am without him & i realize there is so much to learn and process in this new year.

i will find my way.  and i will do it well.  pjm would expect & desire nothing less of me.
but how deeply i miss him .