Amanda and the Hendersons

Here I am, sitting next to Parklen in his hospital bed..typing these words as I bounce the baby in her seat.  This room is so normal to us, even the baby......it feels natural for us to be here.  Parklen had surgery today.  Back when he was sick this summer and had a perforation in his bowels, they were forced to surgically separate his intestines.  He has had one end sticking out of his tummy for the last two months.  On our way to Denver yesterday, Parklen pointed at his belly and the part sticking out and said.."Mom, tell me exactly when they are gonna get rid of this guy?"  They repaired it today.  I have said it before, but surgery isn't such a huge deal for Parklen any more.  He spent his morning asking me how long until it was time.  He knows the routine......he remembers the faces of the surgical nurses, the anesthesia team and his doctors.  He was thrilled today when they gave him a purple donut pillow to rest his head ...

There are probably close to a billion things I could complain about daily.....seriously.  But, in the same respect........I have about a billion things to be thankful for as well.  Don't you think that concentrating on the latter is a better choice.  The bad will always be there in life.....but, if you look hard enough you will always see that the good is bigger! If you don't know.....a few years ago we lost our home.....it was due to a compounding of events, but mostly because of outstanding medical bills for our babe.  We used a little money we had saved to purchase a small mobile home to live in while Devan went to school and we rebuilt our financial situation.  Almost as soon as we moved in, we outgrew the home. Parklen's medical equipment takes up space.....a lot of space.  Add that in with a college students books, two boys' toys.....and everything else for daily living and you get one crowded situation.... Then, along comes baby.........

This is Paysen's view of his "super brother" I can remember back when Paysen was born.....long, long ago.....well actually just about 7 years ago.  I had everything figured out back then.  He was born into a life of stability. He had a schedule.....I knew exactly what he would be doing at any given time....like I said, I had things figured out. Fast forward a couple years and those figured out things were shattered.  I am living in the midst of a family that is not average....anything but. Our schedule is dictated by oral medications, IV medications, treatments, and how a particular someone is feeling.  I cringe at the thought of making plans, knowing that I will very likely have to cancel them.  When you think of a "normal" family, you may think of things like, bedtimes, meal times, discipline, activities......and so on....   Our family is quite different....bedtimes are changed according to medicines that are scheduled.  Meal times are...

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 increase...as 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...

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...

More often than not in my life, things tend to make no sense. I continually fight with emotions of fear, uncertainty and confusion. I often feel weary. I very rarely get rest. My baby boy is fighting a fight of his own. One with his very own body and an ugly disease that doesn't care how amazing and wonderful the little boy is who it attacks. He struggles. This week he is struggling to breathe. Struggling to overcome his rotten illness. Struggling to understand why this is his life. And I have no answer for him. It doesn't make sense and it hurts so bad. Parklen is in surgery right now. They are working to discover and repair a problem with his intestines. There is a leak somewhere and it's causing distress and pain.   I don't know why these problems seem to never end. I don't know why it has to be him. But the why doesn't matter. This is what we face and I thank God that we have him to lean on. It's times like this when I wonder how anyone can funct...

Blame it on the "Baby Blues" messed up hormones.....or maybe just life..but I have been feeling down lately....down on myself.  Its an emotion that I am certain most parents feel one time or another and especially mothers.  The feeling of being inadequate.......its capable of robbing you of so much.  Your self confidence, your self worth.....your joy.  I wasn't too surprised when Parklen started to show a return of his symptoms....Ive grown used to it, it takes a lot to shock me when it comes to that little boy.  So when he woke up Tuesday morning with golf ball size lymph nodes through out his neck, head and even one on his face...I already knew deep down that I would be leaving town.  I started to fret right as I put the first thing into our suitcase.  I was flooded with feelings.....feelings that said, "I cannot handle this."  I cannot count the trips I have made over that past five years....its too too many.  I shou...