Sunday, July 21, 2013

26 days.............

Twenty six days ago I loaded the Honda up with enough stuff for a one day trip to Denver.......

Four Wednesdays, Four weekend visits with our other half....624 hours.....Twenty six days....and Parklen, Phinlynn and I are still here.

Parklen's illness has seemed to steadily time has gone on, each flare up has outdone the last.  This was the worst one yet.  This one made him sicker than he has been,  this one caused concern in everyone that knows Parklen.  This stay in the hospital included a tiny infant to nurse and care for.....this stay included frequent discussion about Parklen's future....and a three ring binder handed to every parent about to take their child into a bone marrow transplant. A binder filled with facts......a binder that will make your mommy tummy churn......

I have spent much time thumbing through the pages of this BMT book.....reading over risks, skimming through rules.....every moment realizing that if I EVER thought my life was hard up until this point....the coming months would make the past look easy.  I have tried to convince myself that Paysen is going to be fine, that he will continue to be a wonderful and amazing boy.....even without seeing his mother every day.  That my marriage will survive.......that Phinlynn will never know the difference between a life at home and one spent split between the hospital and an apartment. 

I must admit, I know we are heading where we must.....I know that Parklen needs this transplant.....but I am scared to death.  I don't doubt my faith or question God......but, as a mother, I am so afraid.  I am afraid of how fragile life is, I am afraid of the unknown.......I am afraid for my baby 

Ive also been thinking about the after.....the day when Parklen isn't sick.  Thinking about nights full of sleep, days filled with playing and laughter instead of medicines and treatments......thinking about making decisions based upon other things then how Parky feels.  Going to the store or church without worrying it will lead to the hospital.  These thoughts give me hope. 

There is a chance we may head home this week.....if Parklen is able to keep up on his feeds!  We will spend a couple weeks there before returning to another surgery.  I cannot wait to plop into my own bed.....have some REAL food.....spend some time without beeping monitors and constant intruders. 

Things aren't going to be the same as they were when we left.....we have a huge list of rules.  We have to protect Parklen.  We have to try our hardest to keep him in shape for the upcoming surgery and his future transplant.  Its not going to be easy.....the list of rules is quite extensive....but for the sake of our boy we will do what we must!

Sunday, July 14, 2013

the toughest thing......

There comes a point in every one's life, where they are forced to make a difficult decision.  These moments come often for parents........
Most parents must decide things like, which schools to enroll in, which pediatrician to use, what diet to feed, which sports to participate in, who to use as a baby sitter.....and so on it goes.

When I decided it was time to become a mother I thought of many things, happy things like first steps, laughs, playing, love.  I never thought of things as they have turned out.

Parklen has been sick for his entire life.  It has been trying, it has been hard.  Its time for his life to change.  Parklen will heal from this recent ordeal over the next couple of months....after he is at HIS best- him, his sister and I will be moving to Denver.  Parklen will be receiving a bone marrow transplant.

There are no more options. 

A doctor looked me square in the eyes and said, "Parklen will not live to be a teenager if he does not have this transplant. and if he has another episode like this one his body will be too damaged to ever do a transplant."

The hard part is this, Parklen is like no other kid.  Literally, his disease is different than any other ever recorded.  Its so different that they are unsure if it is actually ALPS anymore....or something new, that no one knows about. 

Being different is a good thing right?  But being different in this way is very scary.  It means no research to go off of, no statistics to cling to.....  It means that we have no idea how things will go.

When a doctor looks at you and says, "I am asking you to risk your child's life for a chance at saving it."  you know things are serious. 

That's all I know, things are serious. 

I never thought, in all of my dreams of motherhood, that I would be making a decision like this. 

God has given Devan and I a peace about the decision....We know that trying to help him is the better choice.....we know that we cannot just sit back and watch as he gets worse.  He has no quality of life.  He just doesn't. 

So we choose this path.  The one of uncertainty.....the one with the mystery ending.  We choose to do everything that we possibly can.  We choose to move forward and put the fate of our son, our precious Parklen, in God's hands. 

Please pray for our family,  For the difficulties that are ahead,  For the next year of our life that is destined to rewrite our story.......for the toughest journy we will ever embark upon....pray for Parky.