Tuesday, May 31, 2011

Glass half full (A Dan post from Saturday night)

When I met my wife twelve years ago and began to understand who she was I told her even before we got married she would end up being the backbone of "us". Even at thirty-two years old I felt insecure like I was not the man for the job. I knew she was strong enough. The funny thing is if you know our family you would easily assume that I am the one who is the epitome of strength. In the weight room I out perform guys half my age, and I rarely get sick. I have an ability to keep going physically and mentally when many others would have to stop for rest. Despite her many physical and emotional challenges, Monica is simply the rock that this family stands on day in and day out. If any men are reading this blog I hope you are not afraid to admit you are not as strong as you think you are.

Tonight as my beautiful wife and I sat out on our little front porch sharing a bottle of cheap champagne we talked about life and what we want our kids to know about us should the good Lord call us up. Why is this important to me? I have always wanted to know exactly what my mom would have said to me, if she could talk, when we were alone in the hospital room the day of her death. To me, this unknown is why today I still see life as a half empty glass. I want to know what mom thought of her life those last days and hours. I never knew if she was happy before the cancer and what her hopes and dreams were for me. I never knew if she felt ready to go and if she was looking forward to Heaven.

In comparison, I know my dad has lived a full life at seventy-six. He has told me that every new day is the best day in his long, very rewarding life. He is my hero. There is also my older brother that has always listened to his inner voice and still plays the drums professionally along with his "day job" and taking care of his family. In my opinion, this is who my brother is and always has been, and he is my idol in life. He is someone who has a passion and has never sacrificed that God given talent, and he does not have to prove anything else to me for me to always look up to him.

Tonight I broke one of our four Waterford crystal champagne flutes. It fell onto a cement mold of a puppy that we placed in our mulch bed around our front porch. My wife and I were devastated as we have treasured this wedding gift for years, but I quickly came up with a reasoning for the loss. Before ships are launched to sea, they are christened with a new bottle of champagne. We are moving from this house and planning on adding a new puppy to our household soon so the broken champagne glass was to honor our old house for providing shelter and welcome the new addition to our family. But as I blog tonight I also think the broken crystal may have a greater meaning in my life. Maybe it's telling me that once the glass is broken it cannot be put back together much like my life cannot be lived over again. Tonight I had a wonderful evening with my gorgeous wife knowing my beautiful daughters were safely at Pops and Meems. I realized that my glass is not half empty no matter how many challenges we face. I can't go back and write what my mom will say to me on her last day. I am the person that God knew I always was and always will be, and He has blessed me with so much more than I deserve. Life is fragile much like the Waterford crystal. Our relationships are fragile. We should not take either one for granted nor can we have a "do-over" should either one break.

Reflecting on my life, a tattoo inscription I have dreamed of was "Endure" on the inside of my bicep. It would signify that I have made it this far regardless of my "half empty glass" outlook on life and all the adversity my family and I have faced. Tonight it dawned on me this seems to be a pessimistic way of viewing life. Instead I'm thinking a line from a Sanctus Real song may be my answer for my tattoo and my new outlook on life. I mentioned the song Lead Me in a previous blog post, and the verse from that song that sticks with me the most is "...Father give me the strength to be all that I am called to be." I feel this simple plea defines my life. I strive to become physically stronger in the weight room. I strive to be more of a rock for my wife and my girls. I pray to have faith in the Lord that He will continue to give me the strength I need to confront any obstacles that my fragile but full life has in store. I am truly blessed.

Monday, May 30, 2011

Vote for Danica!

This picture of our sweet girl was one of the last ones taken of her the week before we headed to Iowa last May. During that visit with Dr. Menezes she began wearing a collar and then moved on to an Aspen and then her Minerva brace. I knew the day our friend, Christina Adam, of Grace Designs Photography took her picture it would be one of the last times I might see her small white throat and neck in pictures for a very long time.

Someone suggested I enter this picture that has been round the world thousands of times on Team Danica's blog and on hundreds of prayer cards on refrigerators and bulletin boards all over the country into the Parents Magazine cover photo contest. Could you please link here, vote for her and then share with all your friends and family asking them to vote too? I have been praying for an opportunity on a larger scale to share about Danica's story and raise Chiari awareneess. I wish I had heard of Chiari and some of the symptoms before that day they called me and said they found it on her MRI. I wish I had known NOT to believe them when the local neurosurgeon said the finding was "unrelated" to Danica's many neurological and physical manifestations of Chiari. I wish I knew the questions to ask before we rushed into Danica's first decompression when we finally found a surgeon who at least understood and believed her slumping brain was definitely partly to blame for all her pain and disability. I wish we had known that strange look in Danica's eye in some of her baby pictures was a sign of bone malformation. I wish there had been an article or a news story or something in the many childhood health books I read to clue me in. Now that we are moving past crisis I will be devoting as much time and energy as possible to raise awareness and funds for research. Please help by voting for our little miracle girl, Danica Jean!

Sunday, May 29, 2011

309 Hoover Street

Staunton, Virginia. The little three bedroom, one and a half bath brick house I grew up in. A little neighborhood that branched off West Beverly Street. It backed to woods with an alley that ended in the Hecks, Kroger and Family Dollar parking lot. A full front porch with white iron trellis and a porch swing. A big maple shading the yard and keeping the grass from ever growing really well. A row of peonies separated our yard from Mrs. Wiseman's little ranch. They smelled like the perfume she wore too much of and were always full of ants, but I loved them anyway. She was the first Jewish woman I ever met. My mom said she believed everything in the Bible but the the words in red. On the other side of our house lived Millie and her husband Sam. We didn't have air conditioning and the whole house fan was bring in the cool Valley air at night and the smell of the Winston cigarettes Sam smoked on the porch after dark. Those were the days I slept on the top bunk and hid books under my pillow to read with a flashlight after I thought my sister was asleep. Millie drew her eyebrows on with a pencil and my mom told me she was sad because she saw her father kill himself when she was young, and she found his eyeball later. I grew up with grass stained feet all summer and a tent over the clothesline using mom's good sheets pinned into the ground. I grew up with orange and brown mushroom wallpaper in the eat in kitchen and lots of orange Tupperware. I love orange. I grew up with dinner on the table every night at five o'clock. My mom put on lipstick right before dad got home and would put a dab of Cachet on her neck. I grew up with homemade bread and chocolate chip cookies. I grew up dressing like Anne of Green Gables dreaming of owning a real life Gunne Saxe and not one I picked the pattern from at the Piece Goods Shop and my mom sewed at night while I slept. I knew who I was very young. I read poetry up in the branches of my favorite climbable tree and shot baskets in my regulation NBA hoop my dad bought me after several seasons of amazing UVA Cavaliers basketball. (Who can forget John Crotty?) I felt old when I turned six. I wanted the wood grain of our furniture to match. I saved up money to buy Victoria magazines and checked out design books from the adult section at the Staunton Public Library. I got a paper route and saved my money for a walnut and brass daybed, Laura Ashley chintz and college. The neighborhood deteriorated around us, but it never felt unsafe. I think maybe the rent increased in the seven years we lived there from the $300 it began at in 1981. The basement we used to ride our bikes and rollerskate in became a project and was eventually finished into a study for my dad and a family room. The Iris on the side of the house multiplied. The Zinnias tucked neatly behind the railroad ties at the back grew from seeds we planted every year sprinkled in with marigolds. I could go on and on. HOME. Not like the movies. Not a colonial with a formal living room and a dining room and a window seat and Wedgewood china in a hutch like I always dreamed of. Instead, a few white milkglass hobnail vases always full of flowers and Corelle Ware with paper napkins. Mostly sheets and towels that were a little stiff and scratchy from drying out of doors while I imagined life was going to be found in thread count and Egyptian cotton. How does a girl know about these things or long for them?

Tonight Dan and I sat on the little front porch on 35th Sreet. We have lived here three years. This home was a gift from God then and now. We had lived on Pontius only three months and before we could catch our breath a bombshell. The move to Ohio almost killed me, and I had to begin the hardest job of my life, database work from home with a six month old baby. I longed for DC and Ann Taylor suits and long lunches at Clydes. I longed to be peddling the American dream--real estate, floorplans, granite and hardwood. I wanted to be meeting with designers about model homes and not visiting horrible little rentals on the south side of Canton trying to find something we could afford on our new budget. When we walked into this sweet house we said "yes" in our hearts. We had to rest. $30,720 rent later. More tears and sleepless nights and prayers and laughing and praising and fighting and yelling and holding our breath than we ever thought we'd live. More breaking and healing than we ever hoped for. NEST. Our safe place to hide. As we sat in the evening air as we have often done on date nights before, talking about our time in this place, one thing stood out. No matter how much we idealize where we would like our children to grow up and our life to take place, God will work His miracles anywhere. We will plan our ways, but He will direct our paths. Shelter is love no matter what kind of dishes you have.

We walked to Milk and Honey in the dark after hours of talking. We held hands and laughed. We came back and slow danced to our favorite playlist. Our $200 Big Lots mattress my parents bought us when we moved here (because we had to sell almost everything we owned) is the softest place to land when you are in love. In love with life. At peace with wherever God will take us. Finally breathing out a little after holding our breath for what seems like forever. I know our kids will remember home like I do our little rental in Staunton. Wherever we are together as a family, living and loving we will be okay. HOME. On this side of Heaven we will look for manna in the morning and pitch our tent in the wilderness, and we won't forget His faithfulness. It's ENOUGH. Dayenu.

Saturday, May 28, 2011

A world away

I will never forget the day the first email came from Paypal. A notice of a donation from someone "down under." A huge gesture from a girl a world away from our little life in Canton, Ohio. I saw the name and address and thought for sure it had to be a scam of some kind. No one, especially a stranger, would donate this much money to Team Danica. I emailed Dan. I called people I thought might be able to shed some light on who this person was and why she would make such a gift to us in our desperate need. It was over a year ago now, in the early days when we were stepping out in simple faith that somehow God would provide for us on the long journey ahead. This was before any fundraisers, any newspaper articles, any real attention to what we would need from all of you to really find help for our sweet girl. It was before we knew ourselves how much love and support would have to happen to get us through. But God knew, and He was making a way.

I don't remember my exact response. I know I emailed her with these verses from Matthew 25 in my thank you email, "For I was hungry and you gave me food, I was thirsty and you gave me something to drink, I was a stranger and you invited me in, I was naked and you gave me clothing, I was sick and you took care of me, I was in prison and you visited me.’ Then the righteous will answer him, ‘Lord, when did we see you hungry and feed you, or thirsty and give you something to drink? When did we see you a stranger and invite you in, or naked and clothe you? When did we see you sick or in prison and visit you?’ And the king will answer them, ‘I tell you the truth, just as you did it for one of the least of these brothers or sisters of mine, you did it for me.’" I asked her, "Who are you?" She humbly responded she did not need a relationship with me. She did not need praise or thanks. God had moved her to do this big thing, snd she listened. Simple. Beautiful. Life changing.

Over the past year this dear sister has commited support to our family monthly and paid Danica's deductible twice with her substantial donations. She has been a sure thing in our world where nothing could be predicted. This young woman's generosity and love became the foundation where all the other love from hundreds of you would rest. It was God's first clear message to pay attention and see what impossible things He was going to accomplish.

Around Christmas our benefactor was able to come to the United States for a few weeks. Because of her travel schedule and the fact we were still homebound and Danica was still in her wheelchair we were not able to meet her then, but she sent a package with a few books for the girls. "Swim Little Wombat, Swim!" and "Koala Lou" became instant bedtime favorites in our house, and everytime we read them we say a special prayer for our dear Australian sister. Her gift to me was a gorgeous vintage hard cover edition of Amy Carmichael's "Toward Jerusalem." It took my breath away. How could she know this beautiful book would be the best gift of all?

I have tried to write about her ongoing generosity for months. I cannot seem to articulate it or how it has changed our hearts and our lives in a way that does it any justice. Still, the omission of this amazing love leaves a gaping hole in our story. The crux of it all comes to our faithful God. If you are in need today and thinking or feeling there are limits to what He can provide or accomplish in and through you please get on your knees and look at Calvary. As my dear Amy Carmichael wrote in another book of hers, "Rose from Brier", "Love that loves like that can be trusted with all this."

My mom used to sing a song to us when we were little. I think this is how it goes,

"He owns the cattle on a thousand hills,
The wealth in every mine;
He owns the rivers and the rocks and rills,
The sun and stars that shine.
Wonderful riches, more than tongue can tell -
He is my Father so they're mine as well;
He owns the cattle on a thousand hills -
I know that He will care for me."

Stirring the heart of a sister a world away God used part of His beautiful body to care for us. Thank you, dear one on the other side of the globe for your sacrifice and being God's hands to us. Thank you, God, for doing everything You say you will do and so much more. Soli Deo Gloria!

Wednesday, May 25, 2011

Still leaning

"Child of My love. Lean hard. Let Me feel the pressure of your care. I know your burden, child. I shaped it—I poised it in My own hand and made no proportion of its weight to your unaided strength. For even as I laid it on, I said I shall be near, and while she leans on Me, this burden shall be Mine, not hers. So shall I keep My child within the encircling arms of My own love. Here lay it down. Do not fear to impose it on a shoulder which upholds the government of worlds. Yet closer come. You are not near enough. I would embrace your burden, so I might feel My child reposing on My breast. You love Me. I know it. Doubt not, then. But, loving me, lean hard."

A year ago today I posted this poem by Octavius Winslow shared by a woman from Oregon who found our story online and became a friend and prayer warrior. We were preparing for our trip to Iowa to meet with Dr. Menezes. Danica was in so much pain, and we were desperate to find help and make a plan for treatment. If you have been following us on this journey you know what amazing things God has done in Danica's healing and in our lives. As I sit here this morning sipping my second cup of coffee, reading, praying and reflecting on God's faithfulness to us I'm tempted to become distracted by the "mess" of boxes and our looming move. Still, there is a strange peace I never would have thought possible because my heart is changed in drastic ways from so much leaning. God has orchestrated every detail of our lives. I can rest in this as surely as I can move forward confident He is holding our tomorrows.

365 days. 68,782 pageviews on Team Danica. Thousands of emails and facebook posts of encouragement. Thousands of prayers. Thousands of dollars in financial support for medical bills, travel to and from Cincinnati and for basic needs so I was able to quit work and care full time for Danica in recovery. Hundreds of handwritten letters and greeting cards. Dozens of gifts and packages. All of this love has been the ink writing our story. God also brought us through two major surgeries for me in the midst of all going on with Danica and has granted healing to my body in miraculous ways. If you would have told me what great things God was going to do for us last May I would have scarcely believed you. I still lived in a heart that sheltered impossibilities. "Now unto him that is able to do exceeding abundantly above all that we ask or think, according to the power that worketh in us." Ephesians 3:20 This is my reality now. Nothing is impossible with our God.

I had such grandiose intentions to post each day of our wish trip. I haven't given up on that, but I have slowed on posting here because it's difficult to bear my heart at such a vunerable time. Dan and I both feel some shame at becoming the ultimate cliche'. Moving back in with my parents makes us the butt of a hundred jokes. I worry about how our family will adjust. I worry about Dan and I's marriage. I worry about how long it will take to get back on our feet and have our own home again. It seems God has consistently taken away the one thing I know for sure I have idolized, my own space and things. Still, I want to tell each of you who has supported us your continued love has been the salve on our wounds. What you have done for us has not been in vain. We are still leaning hard in this next chapter. We covet your prayers as we keep our hearts open to what God would have us to do.

This past week Dan's dad got very sick and became hospitalized. We took a quick trip to Maryland to visit him and left the girls here with my parents. It was a good weekend. Curt and Eleanor are two of our favorite people in the world. They have walked closely with us since God brought our hearts and lives together. Curt was able to come home, and we spent a beautiful day on the back deck enjoying one another and feeling a particular grace that often comes when you are reminded our days are not a sure thing. The time Dan and I were able to spend with one another in the car was truly a special blessing. Every time we visit the DC area where we once lived our hearts ache a little. It feels like home in tangible and non tangible ways. This trip was no exception. We know we are meant to be here in Ohio but the dreamer in us still imagines going back to the place we feel so connected to.

As we drove up into my parent's neighborhood Sunday evening we saw our girls on the corner lot playing with the hose and water balloons and a half a dozen friends. I especially noticed Danica and the joy in her face being included in such normal childhood fun. Her new snazzy green walker sat nearby. Her knee was skinned, but I didn't panic about how or when she might have had a little fall. We pulled into the driveway covered with sidewalk chalk art and abandoned flipflops and Dan and I looked at one another and flashed heart smiles. It will be a good summer. Here is where we prayed God would carry us. There is a feeling of excitement and adventure beneath the stress of this huge change. Although there are moments of anxiety there is infinitely more peace, less fear and a true anticipation to see what God will write in the next pages. The foundation of our heart change is gratitude and remembrance of His goodness and grace to us. Yes, we are still leaning, and it's a beautiful place to rest.

(There is a long "honor roll" of pediatric Chiari heroes God has brought into our lives this past year. Won't you please pray for the Wendorff family? Their son, Brayden, will have his third brain surgery tomorrow and their son, Zachary, has also been diagnosed with Chiari and will have his first decompression on June 2nd. Please lift up Dan and Amanda, their brave parents, and the rest of the children and family who are also so greatly affected. Thank you.)

Friday, May 13, 2011

We interrupt gratitude broadcasting to bring you a note about surviving

I really am going to get back to our vacation trip posts. On Mother's Day Shutterfly emailed a code for 50 free prints, and I received them today. It's so fun to see photos in print and not just digitally! It reminded me how recently we were feeling so well and having a such a great time and why vacations and rest in general are part of God's plan for us. Regular day to day life no matter what your circumstances gets tough and when you add years of extreme physical, mental, emotional and financial stress to the mix the pressure makes you want to find a permanent place to run and hide. Dan and I have said over and over since the Florida trip which was amazing and wonderful but exhausting for us, "Now WE need a vacation."

This week began with Danica waking up Sunday night with the flu bug. It involved lots and lots of throwing up and every time I said a prayer it wasn't spreading, but I knew in reality the germs were probably already doing their nasty work. Monday night we had an amazing fundraiser planned by my book club friends at The Barrel Room. All together they raised just over $800 for Team Danica. This is such a blessing as so much support has dwindled as our lives have moved on from the surgery stage, and still we have so many financial burdens. My mom came to watch the girls, and I felt super guilty for leaving Danica but also relieved to have a little breather. Danica seemed much better my mom reported when we got back late that night. At 2 am I heard the sound coming from her room every mom dreads. The vomiting began again. By Wednesday night our Laney had it, and after the intial getting sick which completely ruined her beautiful comforter and terrified us both because of the violence, she threw up every hour on the hour 6 more times. Every time I held her hair and rubbed her back and emptied the bucket and washed her face. As dawn came my fatigue spoke to me. "You're next!"

Wednesday night it came to me. I don't remember being this sick in years. It's odd to have suffered so much pain and many surgeries and lots of true physical suffering and then get the no holds barred flu. There is nothing like it. The throwing up, the fever, the aching, the way your head hurts and your eyes sting and the soles of your feet burn. Dan really had no choice but to miss work yesterday. As the only provider now in a particularly busy time at his job this was horrible timing. Classic for us, I guess. I was so sick I could barely lift my head. Last night I called my mom. Dan desperately needed to work today. I was still shivering and crying from the aching. How in the world would I care for Delaney and Danica today? Mom had a full plate. I prayed a prayer. "God, you have to get me some sleep and make me feel some better tomorrow. PLEASE."

Here it is, noon on Friday. The house is a mess. The bathroom needs scrubbed. The carpets need vacuumed. There is laundry. I am disgustingly ragged. I've yelled at the kids. I've climbed out of my stupor enough to try to deal with the week of phone messages and bills on my nightstand. Danica's therapist was out this week. I need to coordinate donating her wheelchair to a local child who needs one. Danica's walker is in at Motion Mobility. Would I like to come pick it up? Time Warner Cable called. Our service is in danger of being deactivated. (Yes, I know. I can't pay the bill online because you decided to change Xpress pay which I've used for the 3 years I've had service with you to some other log in system which doesn't recognize my old login or help me in any way get an effective new one to pay my bill. An hour later I have accomplished one thing on my list.) Cleveland Clinic has finally given me a total for what I owe. $4,225.21. This is actually less than I thought it would be, although there is over $7,000 that Summa has still not paid in the pending category. I call them. Why have I called over and over and over the past few months for a financial assistance form and cannot get this mailed to me? They are sorry. It's going out today. SIGH. I call Cincinnati Children's about a balance from last June. Why are payments being applied to later things and this account not credited so it goes to collections. This is a full time job. The kids are screaming at one another about something. Hold on. Pray. Step into peacemaker, loving mother role. I know, let's have a quiet time.

I go downstairs and for some reason my craziness kicks it up a notch, and I began taking art work off the walls. We are moving in less than a month. How in the world will I do this? The things on my walls are my treasures. I want to move them myself, in my car, and hang them up in the basement of my parent's home. They will help give me strength to do this. The words, "Keep Calm and Carry On." "Keep the Faith." "Live Well, Laugh Often, Love Much." "Love this Day." The beautiful watercolors we bought at the beach in 2006. Our gorgeous family photos taken by our friend Christina Adam at Grace Designs Photography . . . STOP. Monica. STOP. Clearly I threw up my medication. You cannot do this today. You cannot.

I came back upstairs and crawled in my bed. My muscles are still burning. My head hurts. I am still sick. Today, this is what God has for me. It doesn't look or feel like thriving, but we will survive. Dan emails. He's driving from Fairlawn to the Green office with a load of equipment. The JEEP is overheating AGAIN. This might be the end for the old car. Keep the ringer on if he gets stuck on 77 somewhere, and I have to go get him. Seriously.

I'm searching deep down for the gratitude in barely making it. I'm crying and read what I've just written. In every paragraph there is a remembrance of God's faithfulness to us. The fundraiser this week. We have not been forsaken by those around us in our continued need. The insurance we have that has covered hundreds of thousands of dollars in medical bills the past years and provided access to some of the best care in the world for Danica and I. My loving family who is willing to open their basement to us so we can try to recover from these things. A JEEP that was literally given to us two summers ago by a dear exchange student our family loved. Although we have put considerable money into keeping it going we have not had that car payment and Dan has been able to drive to work while I have had a reliable car for all the medical appointments.

Maybe this is STILL a post about gratitude. Because I am finally really grown up enough to say, "The Lord gives and the Lord takes away. Blessed be the name of the Lord." God is good. All the time. In thriving and in surviving.

Monday, May 9, 2011

Mercies in Disguise

I had intended to write a post every day to catch you all up on our Disney trip but life took over a little, and I am still marinating in the joy before I reflect with words. I promise I'll get back to that soon enough. My little Danica is laying here beside me sleeping. She woke up at 5 am this morning throwing up and hasn't been able to even keep a sip of water down. I've been sitting here all day with her. After three episodes that ruined bedding I got her to control it a little more and throw up in the dreaded pink hospital basin.

My dear friends are hosting a fundraiser for Team Danica tonight beginning at 6:30 pm at the Barrel Room on Cleveland Avenue in North Canton. I have been looking forward to this for some time. I've written about these women before. They are each a gift, and I wouldn't have made it through this without God bringing them into my life when He did. I haven't washed my face or brushed my teeth or eaten. I look out at the beautiful day, and I feel no angst about God putting me here sitting vigil with my girl. Since our Florida trip I have had an overwhelming sense of God's goodness and faithfulness to Danica and our family. If you go back on this blog to a year ago. If you read through the old posts about our desperate search for help for Danica and the pain this child endured you cannot help but sing the gorgeous Laura Story song with me today. Praising God His ways are higher than ours. Praising Him that through healing our heart's eye we can see Him more clearly. Praising Him that no matter what tomorrow holds we have a greater ability to see the multitude of His mercies even when in disguise. Sing with me, won't you?

We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love us way too much to give us lesser things

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
What if trials of this life are Your mercies in disguise

We pray for wisdom
Your voice to hear
And we cry in anger when we cannot feel You near
We doubt Your goodness, we doubt Your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we'd have faith to believe

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
And what if trials of this life are Your mercies in disguise

When friends betray us
When darkness seems to win
We know the pain reminds this heart
That this is not, this is not our home
It's not our home

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
And what if a thousand sleepless nights
Are what it takes to know You’re near
What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst this world can’t satisfy
And what if trials of this life
The rain, the storms, the hardest nights
Are Your mercies in disguise

Friday, May 6, 2011

Better Together (Wish Trip Day 2)

Danica is sitting here on my bed playing with her jewelry box. She loves to go through her treasures one by one and finger their brilliance. To a little girl, these baubles are as valuable as the most precious stones in the world. She winds the little silver knob on the back over and over watching the ballerina with the filmy pink skirt dance to the simple notes of Fur Elise. I often tune in and out listening to her childish jabbering. My ears perked up as I heard her telling a story about the ballerina. " . . . She never had any surgeries so she could do whatever she wanted like dance and twirl, and bop a balloon, and jump up and down. She could even run . . ." I interrupted her. "Danica, honey, you know mommy wishes you could do those things too. You are healing every day and soon I know you will be allowed to." She replied, "I REALLY want to just run." My heart hurt in that mother way. The way every part of your being melds into a yearning the child you gave life to could have every single wish come true.

Day 2 of our trip we woke early to a very hot sun. We headed out in the village to see what Disney characters would be there. One of the many wonderful things GKTW does is host meet and greets with real characters from the theme parks just for the families staying there. We heard there were two very special guests waiting on stage inside the Safari Theater. On our way we met Belle, Pluto and Goofy. The girls got the first of many signatures in their autograph books, a special gift delivered to our villa from our friends, the Rogers. There was plenty of time to chat and give hugs and take photos. Meeting Mickie and Minnie that morning was one of the highlights of our entire trip. It was the perfect way to begin our day since we were headed to Magic Kingdom. After all the excitement we went to the Gingerbread house for a good breakfast. This is one of the special restaurants at GKTW. It is a cafeteria style place funded by Perkins with lots of yummy choices and staffed by so many amazing volunteers. All our meals at the village were completely free. After we ate the girls took another carousel ride. (I wish I had thought to count how many times they actually rode that thing while we were there.) We were headed to one of the most magical places on earth, but we felt a pull like we would have been just as happy to stay right there.

Driving up to the meca that is Disney takes your breath away a little. When you drive under the sign before you branch off into one of the parks you get that goosebump feeling. The logistics of this massive place boggle my mind. You are reminded how huge it is and how smoothly it runs when you park and walk to the tram and then from there walk up to the monorail and from the monorail walk to the real entrance to the park and give them your fingerprint and slide your tickets through. The girl's first glimpse of Cinderella's castle was so amazing. We pinched ourselves. This was real.

Before I go any further I will reiterate how little our family has done in the past few years and especially in the last 7 months. So, I guess you could say Disney was a little over stimulating for us. Another thing you should know is neither Dan nor I are "amusement park" people at all. A day of waiting in lines very close to people we don't know, eating marginal food that costs a lot of money and experiencing contrived rides and shows just doesn't appeal to us. I suffer from social anxiety that has increased since I have been at home so much. I am always thinking of how I would escape a large crowd of people and my chest gets a little tight and my mind starts racing. Dan was still really uncomfortable from his newly diagnosed physical issues. We went to Disney with no expectations about how much we would see or do that day or how long we would last. We were just going to see how it went.

We ended up getting to ride several really classic rides that were not bumpy and did not start or stop suddenly. Danica and Delaney truly loved the Teacups, the Dumbo ride and It's a Small World. An amazing part of our trip was a very special "Guest Assistance" pass I wore around my neck and a GKTW wish button Danica wore. These allowed us special access to everything with no waiting in lines. Even the character lines which were painfully long would see us and wave us over. Because of the heat, it was a high of 91 that first day, and our stamina, we would not have been able to enjoy the things we did without the blessing of a little "star" treatment.

We returned to GKTW late afternoon to rest and freshen up and ordered food to be delivered to our villa from Katie's Kitchen, the restaurant funded by Boston Market. The girls were especially excited because EVERY Thursday night at GKTW they celebrate Christmas. Santa comes and gives gifts to every child. They have carriage rides and a parade and all kinds of fun activities. While we were waiting the girls went to the La-ti-da spa in the Castle of Miracles. Danica had her nails painted and she and Delaney got airbrush tattoos. We also explored more of the village including Mayor Clayton and Ms. Merry's cottage in their garden, the amazing train inside the Amberville train station and of course, eating more icecream and riding the carousel AGAIN.

As the sun set, and we walked slowly back to what Danica called, "Our white Florida house," we felt like a "normal" family. The day wasn't perfect. We all had our moments. We were definitely tired and maybe even a little crabby, but we were together and had a day full of shining moments we would never forget. I thought about the pleasure our Heavenly Father felt watching us enjoy the good gifts He had given us. There were tornadoes and storms ravaging other states and Bin Laden was being killed and so many children and families trudging through appointments at hospitals and having surgery and treatments. Still, for a day the ugly, messy part of life felt very far away, and we were blissfully happy.

Thursday, May 5, 2011

When the heart is too big for the body (Wish Trip Day 1)

It's been a long time since I have had the ache of happiness and my heart has felt real joy for life. Parents of children with serious chronic and terminal illnesses rarely get to sit and watch their children just be. There always seems to be a dark cloud nearby. The patches of sunshine are few and far between and fast moving. There is a heaviness that can never fully be lifted because most of you is so wrapped up in this little person who is hurting and all you want to do is make it better and give them something normal and good if only for awhile. There is a man who understands this and built his own life around creating a place for families like ours to truly celebrate. His name is Henri Landwirth and this magical place is Give Kids the World.

Last Tuesday we woke up so very excited to be leaving for Florida. Although we had been waiting and hoping for this trip since last August, we were in no way prepared for the surprises in store. A limousine showed up in front of our little house, and Delaney and Danica screamed with excitement. I chuckled as I watched the girls ride up and down the escalator with Dan at the Akron/Canton airport. True, we haven't been out much in the past year, but if they were this excited about an escalator I could only imagine their reactions to what we were about to see and do. Many of you have planned and taken trips to Orlando. If you have, you know the details that go into just making sure your travel, lodging, meals, tickets, etc. are all taken care of. We didn't have to worry about any of that. Our wish coordinator, Madelyn Sweeney, from our local Wishes Can Happen took care of it all. I sat there at the airport and exhaled.

We landed in Orlando around noon and as soon as we arrived at the main terminal we were greeted by a volunteer from GKTW holding a big sign with Danica's name on it. He took our carry on bags from us and escorted us to baggage claim. He then took us to the rental car company which had a line of shiny new mini vans waiting to choose from. He went over directions with us, and we were off. It was so sunny and very warm. It felt good. It was like someone was infusing each of us with a special power source we had been missing for a very long time. When we pulled up to the front gate of GKTW we all gasped a little. This place was going to be home for the next week.

We entered the House of Hearts to check in and another volunteer presented Danica with a big princess balloon and a stuffed Mickey Mouse. He sat down and went over some details about our stay and then whisked us off to our villa. On our way he stopped and pointed out different points of interest in the village. We arrived at villa 234, and he slipped our name into the sign in front. It was beautiful and overlooked the pond and Matthew's Boundless Playground, a huge Candy Land themed park.

We quickly unpacked and put on our swimsuits. We headed out to explore the village and enjoy the swimming pool and water park and have the first of many icecream cones because at GKTW you can have icecream anytime you want and as much as you want. Everywhere we looked there was something magical. The old tree, Elmer, the Enchanted Carousel, the Castle of Miracles and Star Tower, the Gingerbread House, the Icecream Palace and so much more were all ours for the next week.

Most of all we didn't have to worry about anything. The phone wasn't ringing with collection calls. The mail wasn't being delievered with past due bills. We didn't have to worry about how much groceries cost or how expensive gas is or how to cut corners to make ends meet. Instead we could say "YES" to almost every request from our girls and be with them emotionally and physically in a way we hadn't for a very long time. It felt overwhelming and so good to be together with our faces turned toward the hot sun. Something was changing. This was a start to a new chapter and our hearts overflowed with faith, hope and love. Our bodies could scarcely contain the blessing we had been given.

That night as we tucked Delaney and Danica in their room together Dan and I sat out in the main living room and listened to their excited voices chatting about the day and wondering what else this week would hold. We looked at one another and said in unison, "This is what it's all about." Hand in hand our girls growing into the promise of tomorrow taking with them the enchantment of this day. Beautiful ache.

(Come back tomorrow for more photos and stories about Day 2 and Disney's Magic Kingdom.)