Monday, April 25, 2011

My wish for you

I'm sitting here in my room listening to Rascal Flatt's playing on Delaney's ipod dock and both my girls are singing at the top of their lungs,

" . . . My wish for you
Is that this life becomes all that you want it to
Your dreams stay big, your worries stay small
You never need to carry more than you can hold

And while you're out there gettin' where you're gettin' to
I hope you know somebody loves you
And wants the same things too
Yeah, this is my wish"

Tomorrow will mark exactly a year ago we were in Cincinnati and found out THIS. I read Shauna's words from Cold Tangerines again. They mean so much more today.

"When you realize that the story of your life could be told a thousand different ways, that you could tell it over and over as a tragedy, but you choose to call it epic, that’s when you start to learn what celebration is. When you see in front of you is so far outside of what you dreamed, but you have the belief, the boldness, the courage to call it beautiful instead of calling it wrong, that’s celebration. When you can invest yourself deeply and unremittingly in the life that surrounds you instead of declaring yourself out of the game once and for all, because what’s happened to you is too bad, too deep, too ugly for anyone to expect you to move on from, that’s that good, rich place. That’s the place where the things that looked for all intents and purposes like curses start to stand up and shimmer and dance, and you realize with a gasp that they may have been blessings all along. Or maybe not. Maybe they were curses, in fact, but the force of your belief and your hope and your desperate love for life as it is actually unfolding, has brought a blessing from a curse, like water from a stone, like life from a tomb, like the actual story of God over and over. I would never try to tell you that every bad thing is a really good thing, just waiting to be gazed at with pretty new eyes, just waiting to be shined up and- ta-da!........there is something just past the heartbreak, just past the curse, just past the despair, and that thing is beautiful. You don’t want it to be beautiful, at first. You want to stay in the pain and blackness because it feels familiar, and because you’re not done feeling victimized and smashed up. But one day you’ll wake up surprised and humbled staring at something you thought for sure was a curse and has revealed itself to be a blessing-a beautiful, delicate blessing."

As I listen to Delaney and Danica's sweet voices singing about wishes I can feel their hearts swelling with lessons about life and love that never would have been learned except by walking the hard road our family has travelled. This has been my hope for them since they were conceived. My prayers have been for tender awareness of the story God is writing in their lives and gratitude for the blessings. Hard will always come, but knowing how to look past it, grow through it, heal from it and keep moving on is a gift.

We leave for our Disney wish trip Wednesday morning. Dear Dan is suffering from several physical issues, and we covet your prayers that he would find some relief so he can truly enjoy this magical family time. Thank you for all your continued prayer and love and support. When we return home we have another big appointment for Danica in Cincinnati and will face packing up our home and moving. For just this week we want to put it all aside and revel in the pure joy of loving one another. Our hope remains!

Wednesday, April 20, 2011

Be the change

I've never met such amazing teenagers or human beings for that matter before in my life. This little group of high school students who are busy with school work and a special medical technology program and drama and sports and church and jobs and college visits and senior events still found the time and energy to ask what they could do to help someone around them. They contacted Wishes Can Happen and adopted Danica and our family to help raise money for Danica's Disney wish trip. They planned and executed a beautiful spaghetti dinner and also took the time to make a very special gift basket for Danica and bag for Delaney with their own money. They collected baskets for a raffle and created the most special poster for the event. They also invited us to see a local production of Beauty and the Beast at Canton South High School and arranged for Danica to meet Belle and the cast before the musical.

I keep thinking of the quote from Gandhi, "BE THE CHANGE YOU WISH TO SEE IN THE WORLD."

Robert, Courtney, Jenna and Jessica
, You are a beautiful example of love. We are so proud to know you. A week from today our family will be in Florida experiencing pure magic because of your kindness. You will forever be part of Danica's miracle. Thank you.

Sunday, April 17, 2011

Enjoy (A Dan post)

"I think we delight to praise what we enjoy because the praise not merely expresses but completes the enjoyment; it is its appointed consummation." C.S. Lewis

I awoke today not expecting much for another Ohio Sunday. Weekends have been quite challenging the past year or two with keeping Danica safe from herself and her big sister as well as tending to my wife's two major surgeries and fatigue and pain from her fibromyalgia. The weekends are long. Very long. The Ohio weather does not help my weekend mood either. I recall a weather report stating there are usually only 100 days per year with sunshine in northeast Ohio. Born in Seattle, I absolutely love thunderstorms and rain showers, but it's the constant cloudy gray skies that wear me down. So, with a weather forecast of dark clouds and heavy rain I was ready to trudge through another tough weekend.

Today we were very excited to attend the Easter egg hunt hosted by Madelyn Sweeney from the Wishes Can Happen organization that is sending my family to Disney World very soon. I honestly was hesitant to go since the weather seemed quite chilly for a mid-April day, but I recall almost every Easter event we have attended here in Ohio the weather has mostly not cooperated. Monica and the girls have been sick too and Monica's throat is still very sore. I bundled up like it was snowing out and made sure the kids were bundled up as well, and we decided to seize the day.

I won't go into all the details of the egg hunt event, which was amazing, but we all had a very fun time. Danica literally never sat down for more than a few seconds. This is the first time in years that I have seen her out in the open air around so many kids and parents enjoying herself. She loved the cotton candy, the model train set, the bubble machine and the little chocolate easter bunny candies. She especially loved meeting the Easter Bunny. She was content with all the fun things she could do and did not once ask to jump in the bounce house or ride on the wagon behind the tractor. She collected twelve Easter eggs during the hunt in the big field and was so excited to show mom and big sis all her egg treasures.

Monica also never sat down at all. The past year, especially the past several months, have been a huge struggle for her physically and mentally. It wasn't too long ago that she was post-operative and barely able to get out of bed. Watching her from afar at the event, I realized she is the most beautiful person I know, and it was pure joy to see her and her little buddy Danica out in the public eye living life. These two girls are best friends. They have been through too much over the past four years since Danica was conceived. It was so great to see them hang out all day having so much fun together.

When we got back home I sat on the couch taking in the days events. Danica was still running around due to the chocolate bunny overload. Delaney was "trading" Danica for better egg treasures making sure she got all the really cool stuff. Monica was busy making her famous corn dip for our evening dinner. I sat there thinking to myself that today was one of the best days we have had as a family in quite a long time and definitely since Danica's second surgery. Still, something was not letting me fully enjoy the day. It is difficult to describe this feeling with a word but it was a feeling of caution or concern. It was as if I was saying, "Yes, today was good, but what about tomorrow and the days to follow. Don't relax. Don't let your guard down. Don't ENJOY this too much. It won't last."

The fun and happiness we shared as a family today is out of the ordinary. Caring for Danica has and still does carry a heavy burden. The days are very stressful. She is not 100% fused. We have several months of her wearing her Aspen collar and therapy ahead. We cannot relax now. We still have work to do. The wounds on us all are still fresh. There is still so much to recover from physically, mentally, spiritually and financially.

We needed today. We needed the sun to peak through the clouds to brighten our lives which have been so gray. When you have a child with Chiari, a child who is recovering from brain and spine surgery, it is often hard to accept that the day was actually quite fun and give God praise. There is always that concern, that caution, of what the next day holds for your child and your family. We remain vigilant with Danica's safety. We are not yet exhaling and jumping up and down celebrating her complete healing.

I am going to treasure this day nonetheless. I am going to bask in "normalness" of it all and pray through the praise for more days like today.

Thursday, April 14, 2011

If everything is Yours

Danica finally started therapy today. We both loved her new therapist, Bevin, and as I watched her do the initial evaluation of Danica's strength and physical abilities I kept pinching myself. It was a moment in time when all your prayers and all your support and love over the past months were manifest in a real way right before my eyes. I wish you could have seen it too. God is so good.

We will continue to go weekly and work on things Danica has "learned" to do the wrong way because really since she has been walking she has had tortocollis and Chiari symptoms. This has created some bad habits and weakness in certain areas. She continues to have some spasticity but even that seems drastically improved over the last month since removing her Minerva brace and gaining mobility. She is healing. I know you see it in snapshots on this blog but for a mother who has lived and breathed this child and fought moment by moment to give her the best chance it is overwhelming to have months and years culminate into an exhale like I had this morning. God is so good.

When we got home from therapy I got a call from a dear woman who volunteers her time for a non-profit to help Chiari families sort out their finances in the wake of major medical bills. Over the past months she has empowered me to make some sense of all the paperwork from the past few years. Today she reminded me we are taking steps forward to a future and a hope.

I've had the Audrey Assad song "Everything is Yours" on repeat lately. I love the first lines. . .

"When all the world is blossoming
When everything around is bursting into life
And I don't have to strain to hear the beat of Your heart"

Today is one of those days when I can literally hear the heart of God beating for me, His child. I'm so grateful He gives us moments and hours when we are THIS sure. But the next few lines ring even more true to me. . .

"When all the world is under fire
and the skies are threatening to thunder and rain
And I am overcome by fears that I can't see"

I've had such a long season of fire and thunder and rain, and I've struggled to be able to sing through doubts and fear the refrain. . .

"If everything is Yours
Everything is Yours
If everything is Yours
I'm letting it go
I am, I'm letting it go
Letting go, I'm letting it go

Cause everything is Yours
Yeah everything is Yours
If everything is Yours, God
If everything is Yours
If everything is Yours
I'm letting it go

Let it go, let it go, let it go
It was never mine to hold
No, It was never mine, never mine

For a long time I thought holding loosely was enough, but today I understand it is in complete surrender I will really find rest and be able to give Him the glory He deserves. I'm finally letting it go.

Tuesday, April 12, 2011

Signs of life

"Just when the caterpillar thought the world was over, it became a butterfly." Proverb

Sunday was actually a warm and sunny day here in Ohio. After being in the house for two weeks straight because of sickness we got in the car and drove over to my parent's house for an hour just to breathe. They live in a neighborhood built way up on a hill, and it is almost always windy there. Delaney's butterfly kite she got on a beach trip for her fourth birthday in Avon, North Carolina was ready to test her wings for the season. I was not feeling well at all, but I loved sitting with my face towards the warm sun and watching my girls and my mom fly that kite.

There are signs of life all around us and God's plan for Danica and our family is unfolding just as it should. It's painfully beautiful. Thank you for continuing to pray and watch and love us through this transformation. Our hope remains.

Friday, April 8, 2011

Momento Vivere. Remember to LIVE.

Danica woke up Monday morning with a fever and a sore throat. I immediately called her pediatrician and ran over there for a strep test. It seemed logical she may have caught it from Delaney. The rapid test was negative and as the day turned into night her fever got much higher. We have a battle every time we try to give Danica medicine. I know this comes from her last surgery and all the nasty ones she had to take orally. We couldn't keep tylenol or motrin in her without her gagging and throwing it up, so Dan ran out to get the dreaded suppositories. By Wednesday she was much sicker and not using her voice at all, refusing most liquid, lethargic and her temp was staying high so we headed back and got a chest xray and some blood work. Later that night the doctor called and said the radiologist saw some pneumonia on the right side, and we begin antibiotics. Yesterday she perked up a little, ate a little more and began using her croaky voice some. I was sure her fever had finally broken, and for the first time in two weeks I got to sleep through the night. This morning she woke up and said, "Mommy, my swallower works again!" I wrestled her meds in her and noticed she was burning up again. Sure enough, her temp is way back up, and she just fell asleep again. She tries to start playing but is just exhausted. I just called the pediatrician. It's 19 days until Disney. God, please give this family some healing.

In the midst of all this I was planning on hosting my book club ladies for our monthly meeting Tuesday night. These women are so dear to me for so many reasons, and it was important for me to do this before I lose my home indefinitely. As Danica got sicker and sicker on Tuesday I considered cancelling. I felt so guilty sending her out with Dan to my parent's house in the evening. It felt selfish. My amazing husband helped clean our home so I could snuggle Danica all day. I prepared very simple food and after Dan and Danica left I got my shower and had a half an hour to sit quietly with the evening light streaming in the windows, candles lit, music softly playing, sipping wine, and I prayed.

For some reason God has taken away most hospitality from my life for awhile now. I love having people in my home. I love cooking and serving and sharing our space and the peace we have carved out here through God's grace. Since we moved here in 2008 I had to work at night when Dan got home running lists, a job I could do from home so I could care for Danica, but it kept our family from almost all extra curricular activities. Danica began having so many ongoing health issues and the need to often be home bound added to our isolation. My health issues make any kind of commitments outside of getting through the day very difficult. Even "good stress" is bad for people like me. We have not been part of a small group at church or even faithfully attended church in some time. I have not been part of a Bible study. We have become hermits out of necessity. Although we are very close as a family and treasure our time I worry how this has affected the girls personalities, especially my super social girl, Laney. I know Dan has become even more closed off. It also has given us tunnel vision in many ways. It has numbed our ability to remember how to live.

That's why Tuesday night was important to me. I can't keep cancelling life. Things may continue to be hard indefinitely, but I have to grab moments and hours with people I love. I have to find reasons to celebrate. I have to buy flowers once in awhile even when there's no budget for them. I have to buy champagne and toast surviving. I have to keep trying to thrive.

I know I have shared this verse before, but I return to it often and need it written on the doorpost of wherever we land in the next few months.

"This day I call the heavens and the earth as witnesses against you that I have set before you life and death, blessings and curses. Now choose life, so that you and your children may live and that you may love the LORD your God, listen to his voice, and hold fast to him. For the LORD is your life, and he will give you many years in the land he swore to give to your fathers, Abraham, Isaac and Jacob." Deuteronomy 30:19-20