Thursday, May 26, 2011

Why?

This post will, no doubt, be completely random. . . .as to match the randomness of my thoughts lately.

I have been thinking about things this week, things that are hard to think about.  I try to stay away from the down thoughts. . . .try not to ask the dreaded question.. . . . . . Why?

Parklen and I have been in Denver this week......in the hospital since yesterday.  He has been through so much in his 3 short years.....so much.  I watch him struggle with different things in life, things that Paysen does with out a problem.  I watch him go through days when he feels sick and does little more than lay around.  I have seen him have days when he feels better and sucks every bit out of life. 





Our last family hike was cut short because Parky didn't feel well, you can always tell by looking at his eyes, and if you miss that cue. . .you can't miss the crying.  He was ready to go almost as soon as we loaded him into the pack.

 Paysen loves adventure....he gets so excited about hiking or biking or anything really.  He is always sad when we have to leave early or cancel things because Parky doesn't feel well, I believe that one day he will understand.....one day he wont get mad.  I do have fears that he will grow up with anger towards his brother.  I know he has to wonder why...........
 Sometimes Parky has a hard time keeping up with Paysen......his cough, and breathing can keep him a few steps behind.......
But when he catches up his excitement overflows.....................He loves his brother.  When they are together he is almost like a little Parrot, repeating every word that comes from Paysen, this is too funny and reminds me of the brothers from the Sandlot......WHICH, is one of the boys favorite movies and they will throw you some quotes if you ask!

 We drive by the Sanfords restaurant a few times a day, the giant statues outside are so exciting for the boys....they have wanted to go FOREVER and ask every single day.......finally we went, they wanted photos with every single statue outside....You can see that Parky isn't so sure about this one.
 Like I said, I have seen Parky go through a ton of stuff, one thing has stayed consistent....he has always kept his spirit.  This trip has robbed him of his spirit.      I have never seen my baby so sad.  I have never been unable to make him smile.....he has never pushed me away from a kiss.  He cant talk well right now, so he just whispers to me "leave me alone mom."       OUCH, it hurts.  It hurts to see him this way, hurts to be the one who drives him down to the hospital....and inevitably to this pain.  It hurts because I don't understand....I don't understand why.   I cant understand why he has to continue on this path, I cant understand why I have to leave Paysen behind......

I will never know why my baby is sick, I will never know why. But I do know that its probably better that I don't worry about why.  All I can do is focus on my tasks.....love my family, take care of my children, make each of them feel special and important......and let others see that I love God.  And that no matter what is put in my path, that I trust Him, even when I don't understand why.

Monday, May 23, 2011

Catching up

So very much has happened since the last post.  


 
We have been on some family hikes in the recent weeks.


One hike included our dog pushing Parklen into the river and Paysen falling into Cactus, the next had Paysen with Poison Ivy, and Parklen feeling so sick he cried the entire time.  One thing is for sure, nothing is normal about our family, everything we do has its quirks. . .its stumbles and mishaps.  But if you ask the boys, they love every adventure we go on.

 Parky is drying off after his fall into the Platte.
On our hikes, Paysen and I are partners.  He "helps" me along the path. 



We celebrated Parky's birthday a couple weeks ago, Cant believe he is three. . . .the time goes more quickly with each passing day.. I wish I had a pause, and rewind button......
Parklen had an Ant hill cake this year, honestly I was just too exhausted to do anything better.  I will make up for it next year I'm sure.  And really. . . .he was just as excited about his one hour cake as he was about the Dinosaur that took a few days.....too funny.




Right now we are sitting in a hotel.  We are back down for hospital visits.  Parky and I are sitting here, and he is begging me to take him home.  "Pawease, I wanna go home."  But were here, and here for a week at least I would say, probably longer. 



This is who I left behind......not that he minds, he is with Aunt who he loves like crazy and who spoils him and loves him right back.
These are the recent addition to Paysen. . . .his glasses.   His eyes aren't very bad, and his doctor thinks he will never have to wear full time glasses, but you can barely pry these from his precious face. . .and in his words, with them on he, "sees weller." 
 I miss him when I am gone.  So does Parky.

Thursday, May 5, 2011

~On ThIs DaY~


I don't like to slide, I don't like to swing, but when we are at the park, you CAN take pictures of me!!!
Yes, I love home-made whipped cream


On this day I think of you. . . .
The things I have been taught through your very existence.
I think of the power in your smile.

On this day I think about the days when we thought we would lose you.
The feeling we had standing over the hospital bed.
I think of the fear.

On this day I think of the many trials,
The drives we have taken to the hospital,
I think of our bond.

On this day I think of the day you were born,
The moment I met you,
I think of the joy.

On this day I think of your chubby cheeks,
The way they feel when I kiss them,
I think of your cuteness..

On this day I think of your strength,
The bravery you show,
I think of your courage.

On this day I think of your spirit,
The light you carry with you,
I think of the many lives you have touched.

On this day I shed some tears,
The happy kind,
I think of my baby.

White Chocolate Pancakes for the birthday boy!


On this day you begin a new,
The third year,
I think of your birthday.

On this day I believe in miracles,
The blessings keep flowing,
I think of my Parky.

 My sleeping Angel

Happy Birthday my Sweet son, you are a walking miracle, spreading blessings with your every step.  I love you more than any words could describe.

Monday, May 2, 2011

Saying goodbye

For over a year and a half we have had a wonderful woman in our lives.  She has come to our home once a week, three times a month. . . . She is Parky's Special "teacher." 

At our house we call her his therapist. . . .She has worked with him on motor skills, both fine and gross, She has helped him with problem solving, letters, shapes, colors and more. But the thing she has done the best is make him feel special, smart and important. 

Parklen doesn't get a whole lot of social interaction. . .mostly because he cant.  Other kids are sick, or he is.  He doesn't go to pre-school like his brother, barely even gets to go to church.  But Bre would come, she would come to play,  with just him.  She wasn't there to poke him with needles, to check his heart, to look in his ears, to give him medicine. . . She was just there to play. 

Parklen has stood at the window each week watching as she comes down the road. . .once he spots her he runs to hide so that he can scare her.  Every week was just the same..

In the time that we have had her coming to our home, Bre has taught him so much.  When she first began her visits Parky couldn't really speak, didn't interact much, could barely walk or stand.  Today he is doing it all. The combination of the visits with a bit of older brother teaching have brought Parky above and beyond where he should be.


A couple months ago they began testing to see if he could qualify for more time.  The testing is standard, there are no exceptions. . . .he didn't qualify.  When you read this you may think how wonderful it is that he no longer needs the help.  But, the thing is, he does.    He needs the presence of another person to teach him, to love him and to give him that time.  When he gets sick, he falls behind.  And at the end of the day he still has a disease. . .one that doesn't disappear. One that requires me to keep him away from a lot.

As I sat at a table with the therapists who did his testing I could barely hold in the tears.  All of us knew, knew that this was the wrong thing. Knew that he should still get the sessions, but we also knew there was nothing that could be done. . . The test is the test. . . There is only one.  I thought about not signing the paper work to dismiss the services.  Maybe that would help, no, it wouldn't have.

Most days its just us two, I have to be careful where I take him, I have to watch out for germs. .  .I have to cancel a million things because he isn't feeling well. 

Today was our last day with our special friend.  Although my eyes were filled with tears, Parky played the same as he always does.  He didn't seem to notice that Bre only did the games that he asked for, that she didn't challenge him with things that are a bit harder, that she just looked at him a lot.  He didn't notice that I was so sad.   While we watched her drive down the road and out of our sight, Parky said "don't cry mommy, you will see Bre next week."  But we wont. . . .its probably better that he doesn't understand. 

I am thankful for the time we had, for the relationship he was able to build with someone so special.  Thankful for the regular visits from her. . .thankful for my time with another adult. . . .And thankful that other children get someone like Bre to teach them.