Thursday, December 22, 2011


 Aidan came home from the hospital last Friday, and is all better now.  Mike is too!  SO Saturday, we finally got our tree, and then Calli got sick!  She is ok though, and on antibiotics, but feeling very tired and worn out.  I am happy and joyous for not getting sick so that I could care for my family.

These past weeks have been just so busy.  I mean it probably is for everyone, but it just seemed like my phone never stopped ringing.  There were so many chores, and lists of things needing to be done, schoolwork piled waiting to be done,  many things need to be done around here.  It is so easy to get lost in the middle of all of this busyness and lose focus and pay attention to the things that really do not matter-is an easy thing to do.   

Calli and Aidan were crying last week, saying it did not seem like Christmas yet.  In reality, it didn't.  Nothing was hung or decorated, we had not shopped or smelled a tree....but I think it was really deeper than that.  This year is so different.  We are and always have been busy, but this year, it is like chaos- all at once-   

Deep in our hearts, we just want everything to be normal- We want our biggest dilemma to be ..."What to get dad?"

Ya know? 
Tidings of comfort and joy 
and peace on earth 
and all that stuff.

I felt like Charlie Brown just now...I guess I often do...people can get distracted with the shiny trees and presents and all we really want is a simple little tree that we can sing around with our really big open mouths :)

Funny thing, the other day, I opened my door and there was a Charlie Brown Popcorn Tin on my doorstep.  My mom had dropped it off in the still of the morning, while we were all sleeping.  Thanks Mama.

So we ventured out to get the tree over the weekend, and Aidan picked it out- a simple tree.  We managed to put up a few small decorations that are meaningful and simple.  Aidan made cookies and we had the fireplace on and music playing.  

As we placed each ornament on the tree, we remembered the days and times we made them.  My ornaments took me right back to North Wales Elementary School.... making those clothespin reindeer, the macaroni ornament I made in my second grade class...the card ornaments we made with my mom, and the hearts I sewed with my Aunt Alison, when Calli was a baby....  Then we hung the ornament that was given the year Mike's dad died, and both baby's first Christmas ornaments, our first Christmas children's painted hands- so little, so small, pictures of them through the years are all over the tree, snowmen and angels and wreaths they made for me, bells from choir, and starfish from Calli's trip to Turks and Caicos......each one takes us back to a time and a place....a memory.  

It is not always easy to remember things, I mean... sometimes it brings sorrow and tears.  Memories, good or bad, can do that.  Tears stained my cheek through the night as I thought of beloved friends that are gone, my precious father-in-law, our foster children who we all miss and love so troubles.....I thought of times when Calli and Aidan were so small and the winter nights we have spent together doing this same thing.  I thought of the time Mike picked out a tree that was much larger than our 9 ft ceilings...I thought of our first tree less than 2 ft tall.   My brain unsealed thoughts of turmoil, and conflict....and then, I thought of peace and love.  I cried remembering....all we have gone through, the many years of joy and sorrow and they have all made us who we are.  I am so thankful for my husband and my children, I love them so much.  God is so gracious to let me call them my own, to bless me with such love.

HOPE AND BELIEVE- God our Living Hope

Calli said, "Mom I made the mistletoe last year, this year you have to get the real stuff."

Yes, he is feeling much better! (and he got to pick the tree)

trying to screw in the screws! 

crooked- ugh

Dad took over :)

Butchy LOVES daddy :)


Setting up one of two nativity scenes we have

The kids and I made this years ago :)

sugar cookies

all done- now for the star-last year was Aidan's turn, so this year Calli gets to do it.

I LOVE THIS!  Mike was asking her if she wanted him to pick her up to put it on the tree- her face is like- NO! :)


this is not scripted, it was sweet

except...the top needed to be cut off and we forgot to plug it here we go again!

Mom, really?

again..not scripted totally cute and very Mike and Calli.

lol- she is taller than the tree

got it




she loves me, and I love her, and we still love to cuddle each and every single day

my sweets


The stockings are hung

I made Mike, Calli and Aidan;s stockings, mine is the stocking I have had as long as I can remember that my Nana made me.

 Merry Christmas 2011

We are comforted and have joy with our simple but complex lives.  We must take the rain along with the sunshine...that is how we grow.    I am so full of HOPE and I BELIEVE in God, in what He came to earth to do.  He came to show us how to be humble, how to be servants,  how to live simply... He came to show us a better way.  

May you find Joy and Peace and comfort and contentment in the simple everyday things of life- 

All I want for Christmas, I already have- God has given me so much, how can I ever complain?  How can I ever ask or want anything more?

Thursday, December 15, 2011

Off to the hospital we go

So, Aidan's temperature had not gone down by yesterday morning, so his doctor's decided to admit him to the hospital.  We thought that he needed a little extra help getting better!  Turns out the pneumonia was not being affected by oral antibiotics, and needed the IV  ones to get through.  it was a significant size in his right lung, so he just needs a few days here.  I think we'll be able to go home tomorrow. 

The plus side, is that my mother-in-law is literally down the hall of the same floor- we are in pediatrics- she is in the rehab- so I've been able to stop in a few times each day and say hey, and check on how she is doing. 

Mike had to stay home with Calli, but it seems like he needed it - he is coming down with a terrible cold!  People, we could not script this drama!  Nevertheless, we smile, laugh and keep moving forward! 

An interesting thing happened...I brought Aidan in and apparently was supposed to just bring him right to the peds. floor, but I  stopped at registration instead.  As we were getting Aidan into the system, a conversation  came up about the recent events of our life, and the woman registering us, began to tear up and stopped what she was doing, and told me that her 13 year old son died from a Glioblastoma in his brain.  Her daughter was Aidan's age when her brother died, and now 6 years later, she is telling me how wonderful her doctors at CHOP were. 

What are the odds?  So this morning, the nurse manager of the pediatric floor came in with a big gift bag for us from.....Carmen the mom from yesterday.  As she handed me the bag, she too told me that her own father died at 54 from a Glioblastoma.

It is strange the events that unfold, that people in our paths, and us in people's paths.  Calli is an inspiration...I feel nothing but JOY and contentment right now.  God is still good.  I may be tired, and worn out physically, I may have a really good cry in the shower and release my emotions...but there is such an inner peace that envelops me.  I can do nothing but trust God for the order and number of our days, I can control my reaction- well...sometimes I don't, but God .... then there is God and His mercy and Grace.

Gotta go- blessings to you!

Tuesday, December 13, 2011

Scarlett Fever, Flyers, Lemonade and good news

Aidan was not getting any better this past weekend, but, Glenda and Ben Leatherman had graciously given us 4 tickets to see the FLYERS play Tampa on Saturday.  This would be Calli and Aidan's first Flyers game.  I told Mike to take someone else with Calli, like another father/daughter, but he was insistent on Aidan being fine, and Aidan could make it- we were going as a family.

Well, we went, and the game was sold out, we had awesome seats, got incredible gifts brought out to us from the Leatherman Family and it was an incredibly awesome and exciting game........
great seats

I love my precious family

warm up

oh so sick Aidan :(

so she is SO funny- people think she is quiet- lol- she LOVES to yell, and cheer

Thanks Glenda and Ben!  This is a signed Sergei Bobrovsky Puck!

AND a signed Claude Giroux picture- which Mike promptly framed :)

Danny getting interviewed-he made or assisted almost each goal that night

This is blurry- but with this goal, she totally jumped up and tossed her popcorn everywhere- lol it was hilarious

so happy

still happy

see?  they look exactly alike!  no one sees it but ME!

boathouse row

Goofy girl- look at her beautiful eyes!

SO.... Aidan was feeling so lousy, and was not talking AT ALL.  By the time we got home, his fever was so high, and he was still not talking at all.  I checked his air capacity with our peak flow meter and he was in the red zone.  I gave him a breathing treatment, as I had been, and then re-checked his air with the peak flow- still in the red.  UGH!  He could not talk, because he had no air!  Then I saw this nasty white coating on his tongue, but it was not like thrush, then I saw that his tongue looked like a strawberry- he was shaking with chills so badly, and just needed air.

I took him to the ER, where they gave him a bed right away, and ordered a continuous nebulizer, with steroids and lots more albuterol, and an x-ray confirmed what I thought- "Severe Pneumonia," according to the doctor.  My kids have had pneumonia so many times.  

Then after a full body check-the doctor said that it was Scarlaltina- aka Scarlett fever!!! Once it was a major cause of death, but now it is effectively treated with some strong antibiotics.  So, that weird rash he had on our trip, was the beginnings of it, then it turned to high fevers, strep throat, tongue junk and really bad pneumonia.  He is home and re-couperating.  He still has a fever though, and getting double the dose of albuterol every 3 hours in his nebulizer.

Sunday we had panned to go as a family to the Alex's Lemonade Stand Hero Christmas party in the city; Calli really wanted to go, so just She and I went.  She wanted to go in a pretty dress, and she looked so beautiful!

They had fun things for the heroes and their siblings to do.  Calli liked painting the ceramic ornaments.  There was a funny magician too! 

 Therapy dogs came and the highlight of my night, was hearing from Daniel- another wonderful child- now 19 who was diagnosed at 9 with a spinal cord Glioma- an Astrocytoma like Calli's but the stage less- and his went to his brain- he had so many surgeries, but is alive and having the best attitude I have ever seen.  He loves to laugh too!  He does have some treatment side effects due to the young age he received radiation and chemo; like being legally blind, and 2 feet shorter than he should be..but man - oh man, he is so full of LIFE and JOY and PEACE.   He and his mom were such an encouragement to me. 

We sat anywhere we wanted, and I asked Calli where she wanted to sit, so she chose a table up front- the food was really yummy- as I was eating, i realized I had not eaten all day- I had not even had my cup of coffee ...and it was 6 pm!  Guess I was busy- lol

So we were eating, and talking to other families, and there are ambassador families that go and speak on behalf of the foundation, educating people, raising awareness and money also for childhood cancer research.  I was talking to the mom sitting next to Calli, and asked her if she was an ambassador, she seemed to know a lot about the foundation...turns out she was Liz Scott, Alex's mama.  I had no idea, I felt kind of bad for not knowing, and was tearing up, just realizing the depth of what this child, this mom, this dad, her brothers who were sitting next to me had gone through and are doing for cancer research.  Calli really enjoyed talking with her and Liz asked her if she would like to become an Ambassador as well.  Calli is excited and willing to share her story to others- if it will help raise awareness and funds for research.

Funny magician

Daniel is sitting across from Calli at the table, next to his younger brother, who is taller than him!

Liz and Jay Scott

our table

Shirley and  Yellow Santa!!!!

I made her sit on his lap- lol


Jay and Liz Scott with Calli

It was funny thing, as we were leaving, I mean we are in center city Philadelphia- 8 pm, we go to cross at a red light on a one way street to the parking lot, and as we are walking, mind you we are walking at Calli's pace- I mean she was tired and moving a little slower than normal...anyway, the light turns green for the cars, some guy decides to speed up to make a point that he can almost hit us if he wanted to (even though he had a red when we started and we were free to cross)- so he literally stops his truck(and traffic) and yells out his window at us that "This is the street lady!"  LOL, well by then, we were already on the sidewalk and I yelled right back at him, "She's got cancer - give her a break!"
You should have seen his face, his eyes got so big, and he said very humbly, "Oh!, I'm so sorry."  Funny thing is, he was in a rush and wanted us to hurry up so he could go, but he ended up stopping not only his car, but the line of traffic behind him just to give us a hard time.

Calli looked at me and hugged my arm, and said, "Mom, that is when I am really glad that you stick up for me so much."  Oh my precious Calli, I always will stick up for you, fight for the best for you- I will be your advocate, your cheerleader, your mama, your friend- till the day I die.  
We got some good news about Mike's mom last night!  The bone cancer is only in her femur bone, and the melanoma that was on her head, turns out to only be basil cell cancer :)  We are still not sure about her organs- lung in particular, but I know that God is gonna work it out that nothing will be there when they look!

Please continue to pray for energy and strength  for Mike and me, and for Calli and Aidan to be healthy and no more germs!!!  Also, emotions are running wildly with my children, it is hard for them to deal with all of this happening at once.  Please continue to pray and believe for restored health for Calli, Aidan, Linda and my dad Matthew, who is dealing with some very debilitating spinal issues himself.

Thanks and God Bless!

OH!  Don't forget, tonight at the Mercer Museum, Doylestown, Calli will be ringing with her traveling choir.