A Glimmer of Hope.

As a mommy of a very special two year old, who just happens to  also have a laundry list of medical issues, I find certain things that I need to do for her, I want her to have, I want her to experience.

I have talked to a good friend who has walked many a medical mile with her child, and she understands. When things seem so out of control, it is so nice to have a focus or a specific something to prepare for other than surgery.

My specific goal for pre- surgery is, unnecessary, a little frivolous (but not too much), and I really didn't think it would happen.

But I was really, really hoping.

I want to take my Mickey lovin' girl to see the Mouse in his home in Florida. 

I want her to run through the park without a care, ride all the rides without concern, and to be able to run up to Mickey and hug him without pain or injury. Knowing full well that it will be the ONLY time it will happen this way for her. I want to take 3 thousand pictures, so she knows she was there, and so we can have the precious memory.

 Oh, and I want it to be decorated for Christmas, because she just loves the lights and Christmas trees. And I want all 6 of us there.

Tall order for sure.

By faith, we booked our timeshare, fully expecting we'd have to cancel. The boys got time off way in advance, and so we all would be able to see the magic through her eyes.

I was hopeful, but when we got the call to come to Shriners, all hopes were dashed.

But they called again today to confirm things, and I asked what the timeframe was for surgery.
She said it was a four month wait at the least to get on the surgery schedule unless she was critical.

Thankfully she isn't.

I told her about our trip, and how much I wanted to make this happen if it would not jeopardize her health.

She was AMAZING! She reassured me that it could wait, WHOLEHEARTEDLY encouraged us to go, and said they are totally supportive of these pre-op dreams and surgery will be after she meets the Mouse.

Wow! Talk about compassionate and caring...

That also means surgery will be at the end of the year, or maybe even the beginning of next year!!!!!

We plan to make the most of the extra time we have been given. 

Each day is such a gift from God!

Comments

  1. maggieJuly 15, 2008 at 11:20 PM

    Oh yay!!! I'm so excited for her!

    ReplyDelete
  2. AudreyJuly 16, 2008 at 12:22 AM

    I am so happy for you! That will be absolutely fabulous!!

    ReplyDelete
  3. MichaelJuly 16, 2008 at 1:42 AM

    The power of God reaching you to provide your heart's desire. What a true blessing.

    I am so excited for the joy that you all will have with this visit to the land of the mouse.

    M

    ReplyDelete
  4. KimJuly 16, 2008 at 4:01 AM

    Can we come too?!!!

    ReplyDelete
  5. HennHouseJuly 16, 2008 at 8:52 AM

    Fantastic. And make sure you take those 3000 photos. There is a site (blurb.com) where you can get digital images made into books.

    Praying for you.

    ReplyDelete
  6. amyJuly 16, 2008 at 8:59 AM

    OH year, why do all of your posts bring my happy tears?

    Ugh!

    Love you guys!

    ReplyDelete
  7. Special KJuly 16, 2008 at 10:36 AM

    How wonderful! You can have it all.

    ReplyDelete
  8. A Family of SearsesJuly 16, 2008 at 12:32 PM

    I wanna go.....That is going to be wonderful for you all.
    I agree...What a blessing!

    ReplyDelete

Post a Comment

Popular posts from this blog

How Can It BE??

Image
It's been almost a year since I've posted and for some strange reason, I found a few extra minutes in my day( crazy, huh?) and thought I would catch-up the TWO WHOLE people who might still be checking in now and then. On May 11, 2014 our world was changed in the sweetest way with the birth of our granddaughter. And GUESS WHAT?!? All those stupid , ahem , quippy things said by grandparents everywhere, are, in fact, TRUE! She is the sweetest, smartest little treasure EVER and I would definitely have been a grandma first if I knew how amazing this is. (Sorry, kids.) And we have the privilege of having her 1-2 days per week, which makes this MiMi blissfully happy but also a tad busy. She is now 10 months old, and can tell you what an elephant and a lion says. She is determined to grow up as quickly as she possibly can, and plans to start walking yesterday. She is a GO-GETTER and is on the move. Having her weekly is such a precious gift. I love it that my grown kiddo...
Read more

The Blessinngs of the Lord make rich...

Image
 Matching PJs and ready for bed. Aren't they adorable?  My and ALL FOUR of my daughters. My cup really runs over!!  Gianna and Celia. I am glad that we prepared ourselves for CP. She is only hypontic in her neck, but she is spastic in her arms, so she is resourseful and uses her feet to grab toys you hold up for her. She is happy, smiley, and sweet as sugar. I am not upset so understand I am saying this as more matter of fact, but she is like a 6 month old in every way. I pray for her sake that some good therapy and nutrition will help her tremendously. She is definitely on the more severe end of CP. We are not shocked, in fact I really expected this end of the spectrum. Please don't feel "sorry" for us or her. She is a blessing and we are privileged to be called to such a child.  Right after we got back to  the hotel room. Sofia only wants ME or Aria. Or she is crying pretty hysterically. We don't mind- at least I have some one to take turns with if I need ...
Read more

Oh what a difference 24 hours makes.

This morning, the PICU nurse announced that we would be moving to the floor today.  I argued with her. I begged. I offered lunch and dinner for the whole PICU staff if they would keep us just one more night.  You see,I spent last night pressing her morphine button every 30 minutes all night long. The nurse came in every hour. She had to check her THREE IVs. Her chest tube that was draining a tremendous amount of blood. Her pain was hard to manage. Her heart rate elevating was our biggest clue, because she never complained. She had a high level of oxygen needed to keep her stats up.  I liked the comfort of knowing that we had one nurse, right outside the door, whose only job all night long was to monitor Gianna and fix every problem as it arose. The nurse laughed and said, "Don't worry she'll be ready. Oh, and she needs to get up and walk today..." What?!??!? It has been LESS than 24 hours since she had major surgery. And then the flurry started. Xrays were taken. Thre...
Read more