Monday, November 14, 2011

Bad news and good news...

OK, so do you want the good news or the bad news first???  Most people skip the good news and go right to the bad- so i will give you the bad news first.

Mike and I found out some really bad news the other day.  Well, it was news that we figured, that we already knew but pushed aside, pushed away and would not admit, or confront.  It is hard when you see something happening right before your eyes, and you know you are seeing it happen, but you feel helpless to control or change it.  You take the easy way and ignore it, push it from the furthest part of your mind and move on.

As we were at CHOP the other day, we finally looked at one another, up and down, and realized it was time.  Mike braved the scale first and my eyeballs bulged as the scale reflected a gain of 20 lbs!  Then, it was my turn, and our eyes all bulged when we realized I had also gained 20 lbs too!  

Our aching bodies had been telling us for months, what this scale had just revealed.  Since June 1, Mike and I I had gained 20 lbs each!  OYE VEY.   Calli tried to reason and stated that she lost 20 lbs, so it made it better if we looked at this as a family- we only gained 40 minus 20 divided by four equals 5 lbs each, which really is not so bad....BUT, yeah, that equation is not really true.

I wrote a poem on the spot- about my current condition.  ON the plus side, perhaps someone needs a Mr & Mrs Claus for Christmas. lol.   Seriously though....that was and really is the bad news :)

Could it be the stress...
That has added to my waist?
What thing has caused this broadness...
And the rounding of my face?

How did I acquire
This largeness in my rear?
Or the extra round tire...
That has suddenly appeared?

Ice cream could be to blame...
The creamy peanut butter kind
Perhaps it created my muffin top
And added to my behind

 To and fro I go
Busy is my day
No PE is my foe
Got no time to run or play

There is that thing called exercise...
I should start that again
 I wish I did not despise
Alas...No pain, No gain..

Pain I have endured, 
And Gain I've done that too
I'm Feeling insecure
And possibly a bit blue

How did I get to this...
Rolly Polly me?
Deep in the abyss
I'm longing to be free

Free from the aches
That accompany the weight
Free from the cakes
That always taste so great

Free to walk and hike
Free to play fetch 
Maybe ride my bike
Take a good long stretch

Now... to find the time 
And the needed energy
To find the self control
And opt for Broccoli

So do you want the good news?  Good news is what we were expecting and seeing and believing before we even got it!   You were too right?  Blessed are they who have not seen and have yet believed!!!

Calli's MRI last week showed no spread of any sort to her brain.  The tumors and cancer areas in the spine now as compared to the last MRI was "Decreased in size and expanse taken in the cord."  Which means it is smaller and taking up less space!  We have been rejoicing all along with her increased strength, agility and vigor.  This is just confirming what her body was telling us and what we are already knowing and believing - that Calli is and will continue to be a miracle and is going to defy all of their odds!!!

We believe the report of the Lord, that says "LIFE!!!" - and LIFE ABUNDANT!!!


Thursday, November 10, 2011

I'd do Anything for you dear, anything!

We are thankful, that all went well yesterday with Calli's MRI.  So, it took almost two hours to get to CHOP.  Traffic was a mess, but we got there safely.  Due to anesthesia she had to fast overnight & Calli was so hungry by the time we got there, that she could not wait to go to sleep! 

Despite all the traffic, we arrived on time for registration and check-in!!!  However, an hour went by before they finally informed us that there would be some delays- 20 minutes...turned into an hour, turned into two, and finally 4 hours after we arrived, they were ready for her.  We smiled and giggled as she smiled and giggled herself to sleep.  We kissed her goodbye, and sat for 4 more hours in the waiting room.  I had a hard time not being with her, I have been with her in the room sitting right next to her for each and every MRI- But for this 8th one, no moms allowed in when they put her to sleep :(   

The anesthesiologist finally came in and told us she was almost done, and that it was end of his shift and he was leaving!  Normally she would be recovered in the MRI pre-procedure rooms, but due to short staff they informed us that we had to go to the PACU recovery waiting area upstairs to get her.

As we went up to the 4th floor and entered the waiting room, and saw all of the parents eagerly awaiting news of their child's surgery.....bittersweet memories of her surgery day came flooding back to me.  The emotions I felt that day regurgitated and reminded me of how far we had come in such a short time.   

As we sat down, Mike recognized a mother and her son that used to go to church with us.  She looked worried, so I went over and said hello.  She was telling me of her grandson who was in surgery and had "Hirshpr..."  She could not sound it out, but I knew what she was talking about and finished her word for her- "Hirschsprung's disease!"  Her eyes got so big and she asked me how I knew what it was!  

Well it just so happens that one of my friends has two children with this very rare disease.    She asked me if I could go and talk to the young mother of the baby, and as I did there was a reassurance on her face as well as other relatives.  I gave her my friend's number and told her that her children were were doing great, and living normal lives.  It all makes it a little less scary when you hear success stories of other children.

Then one of the family members asked, "Wait a second, why are you up here?"  I told them the story of how long we had to wait, and how Calli was supposed to be recovering downstairs, but they decided last minute to send her up here.  With that, they smiled tearfully and told me that they were sure that we were sent to comfort and reassure them that all would be OK.  

You see, God works in ways we do not even understand.  There is no way we were supposed to be up in that waiting area, and this disease is so very rare, the fact that I have a friend that has not one, but two children with it- really rare....and that Mike, not even me, but Mike recognized her. 

It is reassuring, and comforting knowing when you are in the center of God's will.  One of the family members came up to me and said, "It is just too weird, I mean, what I am trying to say is that, we were praying, and God sent you to encourage us...you were not even supposed to be here."

Not too long after, a nurse came and escorted us to an awake Calli.  I had hoped we would be there to see her wake up, which we would have if she was recovered downstairs.  I had promised her I would be right there...but I guess God had other plans.  Mike and I tried to comfort her as best as we could as the drugs wore off, and I must say that she recovered much better and more quickly this time.  Mike makes all the difference.  I mean, I am her Mommy, and she needs me each and every day... but he is her Daddy, there is nothing like the loving, strong and protective arms, of your Daddy.  He keeps me in check pretty well too :)  He is strong and steady and peace and calm. He can be pretty funny sometimes too!  Like last week when Calli rang with her bell choir at Byers Choice.  
Ding Ding Ding ing Dong That is our song....

After the concert, we walked around and there was a room where you could try on hats and clothes and wow, was I surprised, delighted and warmed when I turned the corner and saw this!!!

Wow, Honey....I know if I asked you, you would never...but for Calli?
Yes, for Calli- I'd do anything!!!

 This song from the British Musical, OLIVER, really just hits the nail on the head.  The words are great- have a listen and smile for a bit.



Trying to look like Scrooge- but isn't he so cute???
Calli and Aidan had some fun dressing up too!  

Kinda scary! 

A fine Lady :)
Ha Ha lol- She is a fighter!
Aidan was hiding from me......
That's a good boy Aidan- now lets get a family pic!
so funny-lol-

I still cannot believe that they did this :)
It was a lot of fun, just simple fun <3

Her hair..can you see it?  It is coming in very blond!



My Aidan, is becoming a young man <3

Tuesday, November 8, 2011

BELONGING

We have been busy doing school here at home, and about the town.  We take 2 trips to  CHOP in Chalfont for PT each week, and Calli has been going bi-weekly to CHOP in Philadelphia for her infusions, appointments etc...

I have been a bit more lenient in our writing schedule :)  I am pretty sure I will title this years writing class as "Creative Writing."  I am finding that my children write much better, and enjoy it much more when I give them a little freedom.

So last week, I gave them a writing assignment- anything they wanted to write- essay, story, poem etc...but due by Friday- the theme was "Belonging."  I hope you enjoy the following poems that they wrote.  Yes they chose poetry.




BELONGING
by Aidan M. Derstine

I feel like I don't belong,
I really don't know why.
So I write this little poem,
To show you how I feel inside.

Maybe it's my big eyes,
Or my big stick-out ears...
Maybe it's my size,
Or my little nonsense fears.

Maybe it's my mouth,
When I crack a joke, or sigh...
Or sometimes when I shout,
And no one else knows why.

I really just want to be involved,
With family, friends or anyone.
I hope this all gets resolved,
So we can have a lot of fun.

-------------------------------------------------------

BELONGING
by Callahan M. Derstine

To belong is to feel love.
To belong is not being kicked out...
When push comes to shove.

To belong is to feel confident...
And know you have a voice.
To belong is being accepted,
Even when you've made the wrong choice.

To belong you don't have............
        to look like everyone else.
Feeling like you belong,
Means you can be yourself.



I think they were both very well done!  We have had a lot of raw emotion here lately, and we are learning as a family how to deal, vent, and be ok with all of this.  Last week, Calli and I went to the funeral service of Chris Court.  It was the most beautiful service/mass I have ever been to.  I am not Catholic, and Calli was confused with what to say, or when to sit, but all in all, we went away with such peace, and it was a very anointed service.  They even sang at the end, the song "Let there be peace on earth, and let it begin with me......."  

I have written and erased so many posts...I have a lot of things brewing inside of my head....I don't understand why a 7 year old boy scout, Karate kid, full of life child died....I don't understand why a 5 year old blond-haired,  apple of her parents eye, Gabby, had to die.   I don't understand why My husband's father had to die...I could go on and on.  This is normal, we may never understand fully, until we see Jesus.  It is that simple.

People have their formulas and explanations, and judgments, of the whys.....and the how to's...I just think it is simple. I think God wants us, wants me, to become like a child, and just trust fully, that He has got it all figured out, so I don't have to.  There is a blessed calm, and peace and rest when I give up trying and asking and wondering why.


Tomorrow, Mike and I will be taking Calli down to CHOP for her 4 hour long MRI.  This time, they are putting her to sleep with an anesthesiologist.

His grace is sufficient for us!