Tuesday, March 25, 2014

Wonderful Time Away

Last night, we returned from a quick four-day trip to Orlando, Florida. We didn't go to Disney, but just enjoyed the sunshine and pool.

Can I tell you the story of how that came to be? It really is a great story.

A few weeks ago, we reached out to Make-A-Wish, a wonderful organization that has only brought hope and joy into our lives. On a side note, I'm so glad they don't reach out to families, but wait for us to contact them. If they had contacted me, I would have been so angry. Hurt, to think about the possibility of my son qualifying for such a generous offer. To give in to the possibility that our son was terminally ill.

A trio of wonderful women came to our house and talked with Ben about what he would like most. He mentioned riding on an airplane. We went through the process of starting a trip to Disney World, a dream trip-of-a-lifetime! But it didn't take Andy and I long to realize that Ben realistically would not have the energy to enjoy a place like Disney. We called them and cancelled. Instead, Make-A-Wish threw him a huge bash where he got to enjoy high-impact, low-energy activities with go-carting, a magician, cotton candy and dinner for fifty of our closest family and friends. It was amazing. Go-carting has become such a favorite activity that he has requested it several times since!

We sort of gave up on the idea of going on a trip. But when Ben opened up an envelope of cash (with almost $200 in it) from one of the local dress-down days, he had talked of nothing but, "Mom, we can go to Myrtle Beach again. But we can fly in an airplane this time. Because I have more money than you even know!"

Amazing, how almost $200 in singles can make a four-year-old feel like he's the richest kid in the world.

Andy and I started talking about the likelihood of such a trip. JetBlue had graciously offered our family a roundtrip ticket to anywhere in the country a few weeks before. Perhaps they could give Ben the ride in the airplane he had hoped for?

Ben's doctor gave him clearance for the ride. But she suggested we go quickly, and return soon. So JetBlue worked fast - like within 48 hours - to secure a flight to Orlando and not only make our flight as comfortable as possible, but also paying for our rental car once we got there! It was a dream come-true. Ben even got to sit in the cockpit. It was just awesome.

Initially, we had looked into our favorite family vacation spot in Myrtle Beach. But when we learned that it was only supposed to be about 40*F, we decided to hunt for somewhere a bit warmer! JetBlue flew one-way to Orlando every day, so they made it sound easy for us to vacation there.

We told the kids the night before we left that we were leaving in the morning to ride on an airplane because Ben, indeed, had enough money to pay for it. I wish I would have videotaped his reaction. I couldn't have anticipated just how excited he would have been! "Let's go right now!" he insisted. "I'm too excited to sleep!" He woke up at 1am, asking if it was time to leave. He insisted on bringing his money bank with his vast collection of singles to pay for the trip, but we were grateful he agreed to leave it with my dad when he dropped us off at the airport. It was precious.

The media caught wind of our trip and we quickly denied any video cameras or interviews at the airport. But seeing that our plane was headed for Orlando, they immediately assumed that we were going to Disney World with the rest of the airplane, and on Make-A-Wish's dime. An understandable assumption. We were so pleased to then enjoy a quiet vacation, free from any cameras, because they had no idea we were simply going to a resort just outside of Disney in order to take advantage of the sun and the pool!

Our schedule was very simple. Movie in the morning, time in the pool, lunch, back home for naps, dinner and then home again for movie night before bed. We really didn't deviate too much from that. But it was all Ben could have handled anyway. It was awesome. A relaxing, enjoyable time with those I treasure most.

Andy and I almost dreaded coming home. Being away from home - away from anyone that recognized us - was sort of a break from reality. Coming home was acknowledging exactly where we are. And where we might be headed. But we were coming back with a handful of memories that wouldn't be forgotten any time soon. And with so many more smiles than when we started.

Ben is still very slow. He walks up stairs like an old man, one foot at a time and with his hand pushed against his knee to get enough energy to bring up the other foot to the same step. He lays down a lot. Takes at least one nap a day. And still sleeps through the night, waking up for a few moments just to take his steroid every five hours. Has only a few minutes a day where he has energy to do an activity of sorts. I spend a lot of my time on the couch with him and I love when he gets chatty, talking about anything under the sun. Mostly memories.

He eats a lot. Spaghetti, pizza, cinnamon raisin bagels and Ritz crackers, mostly. And he is chubby. Really chubby. His cheeks feel so tight, as if his skin can't stretch any more. His belly is perfectly round. His hunger and weight gain is because of the steroids. But the steroids are the only thing keeping him from feeling the pain of the swelling of the tumor. So, steroids, it is.

He gets really anxious. "Mom, how much longer before it's dark? How much longer before it's dinnertime? When is Papa going to come over? Are we going anywhere today? When is it going to be morning?" Anxious. Seemingly wishing the time away for the next thing. And he never likes to be in a room alone. Either Andy or I always need to be within his sights.

And he forgets words, or confuses them. He'll ask for a donut, but he really wants a bagel. He'll ask for pizza, but he means spaghetti. Just little things. But then he'll say, "I want a... what's that word again?" And he brags a lot about his poop. He even makes me text pictures of his excretions and send them to Nana and Papa. He knows that means his body is functioning, getting rid of the bad. And it's also keeping him free from stomach pain, one of the first things (in addition to the headaches) that landed us in the hospital in the first place.

I can't really say that he's improving. But he's not necessarily doing any worse. And I'm so grateful he's not in pain. That alone is a huge answer to prayer.

And for now, I'll take it.

Thank you, JetBlue, for a fantastic vacation. We will always be grateful for your generosity.

It was especially kind of you to allow Ben to keep his big bank of singles as well.

52 comments:

  1. Thank you for sharing all of this! It's so wonderful to hear that you all had a great vacation! Love you all <3
    Kier

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  2. So happy for your family that you were able to enjoy your vacation together and that Ben got his airplane ride! Praying everyday for Ben.

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  3. You are all in my prayers every day.

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  4. Still praying for a miracle for Ben. Please know your family is being lifted up in prayer specifically tomorrow night at a healing class at my church at 7pm.

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  5. Mindy-So happy for you and your beautiful family to enjoy some time together in the sun!! Thinking of you all everyday and still believing in the unbelievable!!
    All our love from Chicago,
    Crystal and family.

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  6. It's such a blessing that you were able to go to Orlando. Ben got the trip of a lifetime AND HE PAID WITH HIS OWN MONEY. I am thankful that the meds are keeping his pain awY. God Bless you all. And we are all Praying for the MIRACLE FOR BEN.

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  7. I am so beyond happy for you all that you got to enjoy a few days of peace and just quality family time and that Ben got his dream of flying fulfilled. I share almost every post on my Facebook. When I do I always write a little something to go with it. Each blog post touches me in a different way. They always cause me to take a pause and think. Sometimes I feel I do my best thinking after reading one and drying my tears, though tonight I find myself unable to dry them and for some reason this one really hit home for me. I've included what I wrote on Facebook, I thought you should know that even though you are going through what is undoubtedly the most unimaginably difficult time you and Ben are an inspiration and effect all of our lives even though many of us do not know you personally. Thank you for opening up your world to us and inviting us into your lives through this blog.

    I seriously cry my eyes out with every post.. this story truly puts everything into perspective for me. Enjoy the little things in life, for you never know when they'll become the biggest things for you. Live every single day to its fullest potential, tomorrow isn't promised and everything can change in the blink of an eye. Treasure the time you get with loved ones, you never know when the day will come that they won't be there and you are left wishing you had seen them more or said just one more 'I love you' to them. There are moments in time that only happen once and you should never regret the should've, would've, could've...

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    1. smaries06 - I could have written every word myself. I am praying for this sweet family every day.

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  8. This whole thing sounds like it was orchestrated by Our Lord. I am so glad, so very glad, that you and Andy were given a respite of sorts; a time of fun and pool with the kids, when worry was at a minimum, and things seemed normal, and you could bask in the joy of those little faces, instead of lying awake wiping away the tears.
    God bless Jet Blue, and Make a Wish, and everyone who has given anything, large or small, to make your burden just a little lighter. God sees it all.
    I pray each day for Ben, for his healing, that the tumor will shrink each day until it disappears entirely. I pray he will be healed, and be a living witness to the power of God.
    May he raise you all up on eagle's wings. God bless.

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    1. Let me third that...AMEN! Just say the word, Lord, and Ben will be healed. Please, Lord, one word from You is all that is needed. We believe.

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    2. Mindy...You have taught me about praying for little miracles and big miracles!!!! Thank you for being so open and sharing your days with us. I am praying for that beautiful boy of yours as well as for you and Andy and your family. God, please bless this family with miracles....BIG ONES!!!!

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  9. Praying for miracle for little Ben . stay strong.

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  10. I'm so so glad you had such a great time away! No one deserves it more than you're family. Ben's adventure on the plane must have been amazing for him!

    It's understandable the break from they media was much needed. Just please know we are all still praying so hard for all of you every day. What may seem nosy is only care and concern for each of you.

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  11. Continued prayer and Praise for the tender mercies our Lord bestows on us in such time of need. He never said this life was going to be easy, but what he did say is that He would NEVER leave us.

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  12. I am so grateful you and your family got to go on this trip! What wonderful memories and a well needed escape. I am praying everyday, throughout the day that God is shrinking the tumor, strengthening Ben, keeping the pain away until the cancer is gone. Believing in a miracle for Ben and for all of you <3 strength and peace to you and Andy.

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  13. I loved a lot about this post but, honestly, the best part for me was that he brags about his poop:) What a normal boy thing to do. Down to the texting photos of it. Totally made me laugh.

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  14. I am so glad you got to take your mind off of this for a little while, and have a little fun. Would have love to have met you guys. Prayers again, from Orlando

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  15. Have fallen in love with you all, and praying for continued blessings upon your family. Such beautiful souls all shining with His holy spirit. Your blog is a gift to so many, and your courage and strength a sincere testimony.

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  16. What a blessing that you were able to enjoy a few days away from home and "reality."
    It is so refreshing to hear there are still corporations, such as Jet Blue, that do things like helping out your family.
    I continue to pray for your family as you go about each day making memories and spending time with your precious little boy.
    May you continue to feel His presence blessing you with peace, comfort, strength, and healing.

    God Bless.

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  17. How wonderful you got to enjoy some time away from everything and create some wonderful memories.
    My prayers continue for all of you .

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  18. So happy to hear about your respite!!! Still praying for a miracle for your little Ben.

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  19. Very happy for the chance to get away. I'm thankful you could get away from cameras and interviews and just enjoy being together. Thanks for sharing your story with us. Praying often that God will restore Ben's health.

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  20. So glad you were able to get away. Prayers everyday for you, Ben, and your family. I know God is with you, every single step of this journey..

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  22. What an inspiration you are! My heart cannot imagine.....but I KNOW that Jesus himself died for Ben's healing and we stand with you and Ben, believing for the manifestation of that healing! May He continue to strengthen you and the rest of your family as well! God bless you!

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  23. So thankful that you had a wonderful time away with your family. Continually praying for a miracle for Ben and for your family.

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  24. The leaf of the olive tree. Powder can be found on Amazon.com.

    Praying for you all...

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  25. I first saw your blog from a friend who shared one of your posts on facebook. I check back on my own every few days. And my mommy heart hurts each time I read a new post. But I am also inspired by your faith and your strength. Thank you for sharing not only your family, but the deepest, most intimate emotions a parent should never have to go through.
    "Be strong and courageous," Joshua was admonished 4 times in the first chapter. As you walk through this valley, know that you are never alone. Hold on tight to the Shepherds hand. Let Him pull you along when you've tarried too long in the shadows and let Him carry you when you feel like you can't take another step. We are praying for you and sweet Ben.

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  26. I came across the following article yesterday and immediately thought of Ben. It may be worth looking into with Ben's doctor.

    http://www.oncologynurseadvisor.com/antipsychotic-medications-offer-hope-against-glioblastoma/article/339431/

    I can't imagine what you are going through, but am praying for strength and healing for you all. Most of all, I am praying for miracle. God Bless you!

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  27. Wow, you are such a good writer..I felt every second of every word....and there is so much love in what you write. I am hoping for a miracle for this precious little man...and I know he is most deserving of it. As I wear my Blue4Ben bracelet with pride, I'm praying. God Bless and keep the faith...

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  28. I'm cracking up about Ben waking up at 1am! So sweet. I hadn't thought about you having such a privacy issue - something else to pray for! I also wouldn't have made the connection between bragging about poop and being told he was constipated. smart kid

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  29. praying for Ben and your Family, enjoyed your blog

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  30. I just wonder, do the kids know? It seems instinctively they do, but have they been told what's happening? You are the most amazing people I don't know (!), thank you for generously sharing this journey and you beautiful family.

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  31. Praying for you all still. God is able.

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  32. God bless you!! Please remember, that the Word of God is living and stronger than any double edged sword....it is also health to our bodies. I will continue to pray for you and your wonderful family,especially your precious Ben (my little Ben will be 5 April 1st), and standing on the glorious promises of God for you. I just want to say, that it would be great, and I believe powerful to read the Bible to your Benjamin often. Especially verses on healing! God's Word ALWAYS accomplishes that which it says, and it says that the Lord looks carefully over His Word to keep it. I know that Jesus can and WILL heal your little Ben, and what glory that will bring to the Father, with Whom anything is possible! What a testimony to all those who will see first hand the power, love, and kindness of our Lord!
    May the Lord grant you the peace that passes all understanding, the peace that only He can give! Me and my children, Ben and Rachel, are all agreeing for your Ben's healing.
    You are a beautiful person, and an amazing representative of what a true Christian is! God bless you all!!!

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  33. So happy to read this! Nothing better than vacation memories! What a wonderful company JetBlue is....truly went "Blue for Ben"! AWESOME!

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  34. Awe. What a needed break!!! Thank God for that. Movies and pool time sound just so wonderful. Hang in there MAMA, you are doing an AMAZING job holding it together.

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  35. Another stranger who feels like a friend being let into your lives through this blog. My own four year old boy and I, and the rest of our family are praying for you daily, just pleading with our God to heal your Ben and trusting in His promises. I've been so deeply encouraged by you and your willingness to open your hands to the Lord. May He continue to bless you.

    Heal sweet Ben LORD; give strength to the family. Hold them all closely through this.

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  36. Glad you guys were able to have a nice, relaxing vacation. Encouraging to hear of so many generous people/organizations. Continuing prayers for Ben from NC.

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  37. Dear, dear Mandy,
    I have been reading your Blog about dear, precious Ben and his journey...I am praying for you all and so is my pastor husband and our church. We lived in Rochester, NY in 1990, pastoring in Henrietta. Our daughter was 12 and given a Make A Wish trip. We went but I would have chosen not to, she was excited! Stories to tell, but for now I want to tell you I cheer you all on and I am deeply admiring that you can blog as you do (I am convinced you need to), you do such an amazing job of it and I thank you for allowing us to peek in! I was unable to journal but was encouraged to by several friends. You are doing so well with it and I believe it is therapeutic for YOU as well as it keeps people abreast in a deeply personal way to your needs for our prayers! Thank you! God is with you all, we believe that Ben is a real soldier! We love you all and don't even know you except through this journey have we come to know of you all! Ben is being prayed for and God is listening!

    With God's love shared through prayers,
    Sally and Paul Sheets

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  38. claiming ephesians 3:14-21, I've been praying for ben and your family. I know our God is able to do more than we ask or think.

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  39. I just discovered your blog via a post by Heather, the author of the Mama Knows, Honeychild blog. My heart goes out to you. My youngest son has Type I Diabetes, and I offer up all his injections for those in need. I will offer up injections for Ben's complete and total healing. I have blessed St. Philomena oil that is used in cases in need of a miracle. I can send you some if you would like. Rest assured of my prayers too.

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  40. I would read the article suggested by Jen in her reply on March 26. It's brand new scientific research which was just published March 7. Perhaps Ben's doctor could look into it further. My family is praying for Ben everyday! We believe!!!

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  41. praying praying praying.....won't stop! I send my love along with those prayers.....

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  42. I am so happy your family had some "private" time. Nothing better than quality family time. I continue to pray for your family. Someday we will meet and maybe become friends.

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  43. Mindy - Praying for your family. Loving your pictures. Believing and hoping with you. Holding you up!

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  44. We are praying for Ben every day. You must keep the strength of God within you. Please look into what others have mentioned in regards to taking Ben for a second opinion, there has to be something more beneficial in terms of treatment. I will continue to keep all of your family in my thoughts and prayers. I am a breast cancer survivor and I believe in the power of prayer.

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