Archives for April 2011

In less than 8 hours, the limo that Make-A-Wish arranged for us will be picking us up to take us to the airport for our Disney World trip.   Ethan and Abigail were so excited that they didn’t fall asleep until 11 pm.

The bags are packed for the most part, only the toiletries and the kids’ toothbrushes remain unpacked as well as my laptop.  We ended up with 3 check-on luggage and 8 carry-ons (two medical bags, my purse, and a carry-on for each of us).

Whether it was fate or coincidence, our medical equipment company had come out on Thursday to measure Hannah for her stroller wheelchair.  When we were talking about the trip, he had said that they just received a donation of a stroller-wheelchair just a few days prior and if we wanted to borrow it for the week, we could and that he would adjust it to her specifications so we didn’t have to bring her in to pick it up!   It wasn’t the same brand as the one we are getting, but it still would do everything we needed.  Talk about a godsend!

After picking it up Friday afternoon, we tried it out with Hannah.   We knew that Hannah has been having a really difficult time keeping her balance in her regular Chicco stroller because we were constantly trying to adjust her for comfort.  But it wasn’t until we saw her so comfortable and secure in this stroller that we realized how much her balance and control has been lost just over the past six months.

It was just another slap in the face reminder that her disease is progressing faster than we had realized when looking at her day-to-day.   Even looking at pictures and videos from just six months ago shows her to be stronger and in more control of her movements.

Even though I’m excited for our trip to Disney World, I can’t help but have bittersweet feelings about this whole thing.  Daddy and I have both talked about how the purpose of Make-A-Wish is for kids who are losing their battles with illness, at least in our respect.  The whole “last great wish” thing.  I remember that part of me that wished Hannah wouldn’t qualify for MAW because that would mean that she wasn’t really as sick.

But it is time to tuck these feelings away for now.  Time to spend seven amazing days living an adventure that we could never do ourselves.   Time to just be a family without the stress of doctor visits, therapy, and treatments.

Time to just have fun together as a family of five and create fun and happy memories that we will cherish for our lifetime.

 

We had our meeting with the Make-A-Wish volunteers tonight.

They came to bring us our itinerary, talk about the trip, and even spoiled the kids with some really cute pajamas!  Abby and Hannah got matching Minnie Mouse pajamas, and I KNOW that is a picture waiting to be taken.   They also got Hannah an adorable summer outfit, shoes, and sunglasses for the trip.   They also gave us our MAW Tshirts and blue pins!   They also scheduled an early morning “breakfast with Minnie Mouse” for mid week — I just hope we can get Hannah up to make it!

As we were going through the plans, it turns out that the MAW coordinator had to change our departing flight from Saturday evening at 5:30 pm to Sunday morning at 10:00 am.  It seems that our very early arrival (right after midnight) on Sunday morning would not have been doable by the Give Kids the World resort because they would have no one there for us.

Even though I am a bit bummed because we no longer get to spend Easter day there and do the GKTW activities, I know that it is only a small nugget of the amazing experiences and events that we will have this next week and the memories that we will get to create.

Abby was 4 years old when Hannah was born.

A few months before Hannah was born, it was time to prune Abby’s wardrobe and take out all the clothes that didn’t fit her anymore.  Usually we donate them, but we knew that I was having a girl so we put the good ones aside into storage.   Most of the items were a size 4.

I remember pruning Abby’s wardrobe again about a year later, after we received Hannah’s diagnosis and a prognosis of just 9 months (of which she was almost there already).  I was very hesitant to do it at first because there was that nagging prognosis in the back of my mind wondering if Hannah would ever get to wear the clothes I was putting in storage.   After all, she would have to be a size 4 for them, which means she would have to survive a couple of years at least.  I kept fearing that she never would see these clothes.

Fast forward to tonight.   As we started packing for our Disney World trip, we realized that we have very few shorts for Hannah.  We have one pair actually.  Because of her enlarged spleen and liver, she would need a size 4 elastic shorts.

Daddy and I broke open the box we had in storage for the last three years labeled “Hannah’s Big Girl clothes.”  Abby’s old clothes were right there, as were the flood of memories of Abby in these clothes and the fear of Hannah not seeing her first or second birthday.   Although I just started going through the clothes that were mostly winter, we did find a pair of shorts that were a size 4 and fit Hannah perfect.  Ironically, they were Disney princess jean shorts!

Hannah is finally wearing Abby’s old hand-me-downs.   To me, this is an amazingly huge milestone in our lives and this journey.  It may seem trivial to some, but it is so far from that!    I’m so proud that Hannah is now going to be wearing Abby’s old clothes.

We have had so much going on lately that we haven’t really been putting much into getting ready for our trip to Disney World.   I have my “to be packed” list, and I have been working with Apria about getting Hannah’s formula and oxygen being delivered to the Give Kids the World resort, as well as a couple of other things.

Fortunately for my kids, every day for the past two weeks has been an exciting buildup to an amazing trip.   They were adopted by a wonderful group of women called the Disboutiquers who have showered them with amazing gifts!   Handmade matching Minnie and princess dresses and other outfits for the girls, fantastic shirts for all of us, disney pillow cases, travel journals and airplane busy bags, scrapbooks, crayons, and even an amazing Minnie tote bag and keychain for me!   Pixie dust galore!!  This is only just a part of the generous gifts they have received!

Every day the kids come home from school, they yell “Did we get any Mickey mail today?”   Sure enough, there is a box or two (or more) waiting from them from another generous hearted Disney lover!

It has been absolutely wonderful for them.  Not only because they have been spoiled beyond spoiled with the quality and uniqueness of their gifts, but Ethan and Abby now truly feel like this trip is just as much for them as it is for Hannah.    They definitely feel the magical Disney spirit every day.

To be adopted by this group has been a gift on top of an amazing gift!  And that is what I have always wanted for this trip…for Ethan and Abby (and Hannah) to be treated as if they are the most special children in the world and going on an amazing trip that is one-of-a-kind.

Things are definitely coming together for this trip, and I am so dang excited now!   Seeing just 10 more days on the countdown clock is just so exciting because tomorrow it will be single digits!    We meet with our Make-A-Wish granters on the 21st to finalizing everything — yay!