Saturday, March 1, 2014

The first chapter.... after



Being a mother of a sick child leads to many things.....

It leads to a life filled with worry, care giving and sleepless nights that reach far beyond the typical realm of motherhood.....

Being a caregiver to a special needs child is the hardest yet most rewarding position I have ever filled.

I have woken up every day for the past 5+ years with a mission.....
a mission and a knowledge that someone else was depending on me for their survival.
more than the basic needs that us as humans require....
A constant awareness that his well being depended on my actions.....
The pressure of remembering every single medicine, 
every proper way to perform his countless treatments.....
remembering how to operate the machines that helped him breathe....
Keeping my eyes open a little wider than normal for any subtle changes....

A very difficult and very overlooked portion of having a sick child is what happens to you....as a mother......as a woman.

To prevent selfishness....you put yourself,
your needs,
your relationships,
your health....
aside.

You make a decision that you will do whatever you must to keep your child safe.....
alive......
and you do what you can.

During the process of years worth of care giving things have happened to me....
things that I didn't even realize at the time....and not even fully until they were strongly impacting my life.

I woke up one morning with chronic pain.....everywhere.
Pain that doesn't leave....
pain that consumes my entire body....
Headaches that refuse to take a day off.....

It has been years since I had a full nights rest....
Parklen, at five years old still wakes up every single night.....
the reasons vary....
sometimes they are important,
and sometimes he wakes because he is used to it....
because of the months and months of being in the hospital....
the nights with constant interruption....
the nights with nurses to play with and talk to.....
He wakes because some of his medicines don't want him to sleep.....

No one wants to talk about how horrible they feel.....
or how they are so exhausted that the thought of putting your two feet on the ground in the morning almost brings tears to your eyes.....
No one wants to bring up the fact that they hurt.....
When their child is suffering......
and so,
when your child is hurting and their world is consumed with pain....
you suffer in silence.

Over the years I have lost so many friends.....
I have lost relationships that meant a lot to me....
I have lost some relationships before they even had a chance to form into a friendship....
It is hard for outsiders to understand the constant cancellation of plans....
the refusal to have company to protect your child....
When you live in the average world these things don't exist....
a simple cough for your child is no reason to panic.....
In my world....
it can mean so much.

There is such a deep deep loneliness that comes....
when you live in a place that people don't understand.
and the more people try to relate to you,
the further away you feel.

The comparisons between mothering my other children and Parklen have no limit of differences.
They are all three loved the same....
but being their mom is different.....

When you live in the world of chronic illness.....
There are instances of bitterness that can arise....
bitterness that comes from listening to average complaints....
and wishing so badly that you had only those to worry about.
but, you have to push those thoughts from your mind.

I have had to make a conscious decision time and time again to ignore my bitterness....
to turn it into a feeling of gratitude for the ones that don't have to live what I have....

At this moment where I sit, right here today....
I have many struggles.

Over the years I have lost more than just a small piece of myself.....
I have lost a huge part of who I am.
I have sacrificed the feeding of my own self....my likes, my hobbies, my interests......
for the sake of something so much bigger than me.

I chose every day to forget about the things I wanted....
to bypass the direction I had planned for my life....
I made a choice each day to do all in my power to keep Parklen alive.....
all the while trying to balance the other needs as wife and mother......

and now.....
things are beginning to change.


Being home from Denver is so much harder than you may realize.
There is joy to be on this path.....
thankfulness for the obstacles overcome.....
and there is also so much more.....
There are giant expectations for a life lived better.....
Lingering duties that remain for Parklen's care.....
Still daily and moment by moment care giving and protection.....
and there is also silence.....
silence from a lack of company....
silence from being confined with in our home...
time to try and remember who I was....
and time to realize that no matter how hard I work to remember that young mother from five years ago....I will never be her again.

I cannot proceed with my days on this earth with out having been changed by my experiences.....
I cannot pretend that the days of heartache and moments of fear never happened..
I cannot take just this moment....and the knowledge of better days to come, and move forward.
I have to....I must, form a new self.
A self that is better because of what she has seen...
what she has witnessed...
what she has done.

I owe it to my family, to my husband....my children and especially to my daughter....
to be the best version of me possible....
To find my best self and be the woman that God created me to be.

but,
as much as I know this to be true....
I struggle.
because I do not know who I am.

I know that I am a wife,
a mother,
sister,
daughter,
a friend......
a child of God....
and beyond that......I am yet to be discovered.

I have yet to learn how to be the mother of three active children....
I have yet to learn how to balance Parklen's medical needs with his need to explore his new found health....
I have yet to learn how to take care of myself....
how to focus on what my body needs so that I can be here for my family.....

I have lost myself in a sea of uncertainty.....
years of treading water in this ocean that has been my life....
the depths of sickness...
the waves of fear.....
clinging to pieces of floating debris....
I have just now been washed upon the shore....
my toes tickling the sand on the beach of new life.....
my eyes squint in the brightness of the recent sun.......

I know not where my life will lead, 
I know not who I will become....
but I know where I have been....

I know that the future is here....
that today is yesterday's tomorrow....

I know that this,
the first chapter of finding Amanda will be a journey all it's own....

I know that each day brings me one step closer to who I am....
who I will be.
and how exciting is that?

Things are moving along in the post transplant life....
Parklen's health is great...
his spirit is good!
He is lonely and I wish so badly that he could have friends to play with....
in time.
For now, the position of friend is filled by his family...
and someday,
maybe not so far away...
Parklen will have play dates and sleepovers.....
and his loneliness will be no more....

Chapter one reads pretty simply....
a tale of hope,
a story of discovery....
and of all things new.
Finding the balance between working towards finding our new rhythm...
and the joy of living in the moment because each moment is a gift.....
Standing on this beach....
looking over the endless view of water in which I have lived....
survived.
I know that I can do this....
I know the loneliness will pass....
I know that the work towards being what and who I want to be pales in comparison to the work that has already been done....
I know that our future is bright.....

With each turning of a page,
I cannot deny my nerves....
but I cannot ignore the excitement either.....

because.....
the best is yet to be.

1 comment:

  1. I just found your link on Brent's Buzz. You are amazing and inspiring. I too know how life altering having that sick child can be. We were in Brent's place with our own little one years ago. I can't believe that it has been eight years. Many of the things and feelings you are going through I have gone through. Just keep going and loving and believing. We do daily as a family and know the blessings of each day. Bless you and your family!!

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