One of Ellie's new favorite sentences is "I need something to make me happy!"...the solution is usually food, and once given to her she exclaims "That would make me happy!" We giggle, because she has become quite the little munchy monster, with her steroids, but that phrase was really put into perspective for me this week. We just spent a week in Disney World...what could make someone more happy? Magical characters, exciting shows, not having to stand in those long lines, seeing your children grin from ear to ear. It doesn't get much better.
We got to spend days with our children, focusing on nothing else except fun and happy. And as much as you want to keep focusing on that fun, you continue to watch ever step, breath, twitch, or bump. You watch eating habits, sleeping habits, bathroom habits, just hoping that nothing will change. My biggest fear going into this trip, was what if we can't get there (which we almost didn't, but that had nothing to do with cancer...love you Richard), I was terrified something would happen with Ellie before we got to take off on this trip. I continued to struggle with trusting that the Lord was going to lead this journey. I was getting frustrated with many things before we left, and missing our St. Jude family and their care so much...but we made it to Florida and I vowed, the past was in the past!
Our first blessing was being able to stay at the Give Kids the World Village. Because Ellie's trip was planned so quickly, we originally were not going to be able to stay there, we were going to be staying at a Disney resort property, which was fine with us. But the GKTW representative at the airport told me we could always ask if there were any last minute cancellations, and sure enough, there was! So instead of staying in a hotel room for a week, we were given a two bedroom villa to enjoy! The best part was the community that surrounded that villa. There's just something about being around other families that have experienced what you are going through, that celebrate the same victories and understand the stresses. You don't feel like people are staring at you or feeling sorry for you, they just understand you. Its also really nice when you don't have the only bald kid around! ...side note, Ellie's hair was coming back nicely, but has started to fall out again, not sure if that is a side effect of her whole 3 days of radiation, or from the chemo she is currently on.
We stayed up late, ate ice cream for breakfast, had Halloween twice, spoiled a lot, gave in a lot, played life sized candy land, realized Noah loves roller coasters but is scared of sharks behind glass, learned Ellie doesn't enjoy rides very much - but says she does. We learned our kids always have to pee once we get in a line or in a show. Found out just how much Noah loves the water and how much Ellie dislikes it (but if she's in her daddy's arms, its fine) We experienced what wonderful things being a wish child means, and met some pretty awesome characters. I am almost positive that one Minnie Mouse prayed for us while she squeezed me tight, I felt her prayers through that big plastic head...it was great! I had to learn once again to not worry about the thoughts of others. Getting to cut in front of a line of 30 kids and their parents, waiting to see a princess, is enough to make you fear for your life! But the joy on my childrens' faces easily helped me ignore the other people around us! I don't like the circumstances of our trip, but I am beyond grateful for the experience, it is one I know we will never forget.
In the land of happy (Disney)...I started to think of the things we put value on and as I was wandering aimlessly through a gift shop, I realized nothing I could buy was going to make me happy. I was in this amazing place, but was having trouble finding my happy. In fact I couldn't even bring myself to buy the shirt, because tears overcame me and I had to walk out. Richard ended up going back in and buying me a shirt. I was surprised at how easily and randomly the tears could come...for no real reason.
I worry sometimes that our "today" theory is going to hurt us, that we aren't going to be prepared for tomorrow because we continually focus on today. There is a stack of papers on my desk that we have been told to look through, things to discuss, we haven't. Just hasn't felt right yet. Are we in denial? I don't think so, we are well aware of what the "expected" outcome of her disease is. Are we thinking if we just don't think about it, then it won't happen...no, I quit thinking like that a long time ago. I think the simple answer is, God has given us the ability to focus on just today. Many people say, "I don't know how you guys do it, we don't, God does! He provides us with everything we need for this day. I am assured when tomorrow comes, He will be there to provide for that day as well. Not thinking past today, is trusting God. its believing He has this planned and He will help us with each step, when His time is right. He so graciously silences my thoughts and keeps me focused on this moment. This isn't saying we don't fall apart from time to time, because we do. But its not out of anger, its just emotions that come pouring out. This is definitely not the easiest thing we've ever done...and the unknown can be very hard sometimes. However we hold tight to one simple thought, best expressed by Noah "God can do what the doctors can't". We continue to pray daily that if its in His will, He will heal her, and if its not His will, I pray our love and faith will not falter.
It’s not how much we have, but how much we enjoy that makes happiness. - Unknown
As I sit on my couch with two kids snuggled up next to me and the 3rd gabbering away in her crib, I have to stop and enjoy this. This is what makes me happy, not food (although it can sure make me smile...and Ellie) not possessions, not gifts or fame. Speaking of gifts, many people have asked to help us with Christmas, and we appreciate all the efforts, there is one registry that was started, and gifts have poured in...there is probably more Christmas in my basement than these kids have ever seen and its only the beginning of November. This brings me back to the thoughts of "what makes us happy". The presents make the kids happy, and it makes me smile to give them presents. What would make me smile more is knowing that other families don't have to experience what we are going through. The only way to make that happen is to donate more to organizations who are working hard researching childhood cancers. You know our attachment to St. Jude, so there is a great place to start with donations, and you know from our story, all they do for families! You can donate to our St. Jude Give Thanks Walk team here. Team Princess Strong is currently #1 for the Fredericksburg Walk! You also know our love for Habitat for Hope. Even though hundreds of miles a way, they are still supporting us with their love and prayers. You can make a donation to Habitat for Hope, in honor of Ellie here. Those donations, would make me happy, happy, happy!
Here's some pictures from Disney, to hopefully make you happy!
Though you have not seen him, you love him; and even though you do not see him now, you believe in him and are filled with an inexpressible and glorious joy, for you are receiving the end result of your faith, the salvation of your souls. 1 Peter 1:8-9
Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you nor forsake you. Deuteronomy 31:6
We demolish arguments and every pretension that sets itself up against the knowledge of God, and we take captive every thought to make it obedient to Christ. 2 Corinthians 10:5
Ellie is still doing great. She continues to enjoy her days with her friends, and arguing with her brother once he gets home from school. Her appetite is not lacking at all! She does get cranky, but I attribute that to being 2 and steroids. Her energy level comes and goes...she can go all out, but also loves to snuggle on the couch. I know how thankful I am for these days together. I am thankful for her happy spirit, her love of her family, and the love of so many others around us! Thank you again for your continued prayers for Ellie and our family. I pray this week, you can step back and see what really makes you happy, and just enjoy it.
Prayers, Praise and Pink