Tuesday, July 27, 2010

Waiting


YOU keep us waiting.
You, the God of all time,
Want us to wait
For the right time in which to discover
Who we are, where we are to go,
Who will be with us, and what we must do.
So thank you … for the waiting time.

John Bell, quoted in The Westminster Collection of Christian Prayers

All day I have been meditating on God's call to wait. Over and over in His Word He asks me to trust Him, listen quietly and wait for His timing. Over and over I push and fret and try to write this story on my own.

The Old Testament is such a beautiful example of the preparation of what God was doing in the coming of Christ and in example after example He asks His people to wait in their personal lives for things they were hoping for and ultimately for their Savior. God promised David would be Israel's king when he was annointed by Samuel, and it was many years and a great amount of trial before this happened. David is one of my "faith" heros. He made a mess of things sometimes. He wanted to be in control--so much so he even took someone's wife and had her husband killed. He was REALLY honest with God when he prayed, and He talked a lot about waiting. One of His favorite cries to His God was, "HOW LONG????" Tonight I went back to some Advent readings and to the same highlighted verses in my Bible I have read hundreds of times and recited in the dark, many of them Psalms of David. What God is showing me by reading these passages again is He is not asking me to do nothing. He is asking me to be prepared and expect He will work His purpose perfectly. The quietness of heart can come in the midst of franticly running lists and doing laundry. Being still will not be literal most of the time, but it can be my heart's attitude as I continue my research about Danica's brain and spine, make countless phone calls, write emails and try to find the surgeon's hands who will best help her.

I had a peaceful day at home with Danica today. Delaney is away in West Virginia visting my sister and her family. Everything felt slower and more intentional. I watched Danica closely as she played. I listened to her pretend stories with the Littlest Pet Shops and as she played shopping and games and read her books. We cleaned out most of the 3T things from her drawer, and I realized what a gift her rapid growth this past year has been. She is so tall for her age. I know this is just one example of God working His timing perfectly. We got her doctor kit ready to take to the hospital tomorrow along with a new box of Hello Kitty bandaids. We talked frankly about getting an ouchy, picking a prize for being brave, seeing Dr. Cohen's fishtank and the cool ball machine at Rainbow. She completely understands and accepts what will happen tomorrow.

We will leave our house at 5:00 am. We must check in at 6:30 at the sedation unit. Her MRI will be at 8. After recovery we will have her flexion extension x-rays, then see Dr. Cohen to discuss the scans and then see the orthopedic surgeon, Dr. Thompson. I just found out that Dan, who is working until 11 pm tonight, is planning to be back at work by 5pm tomorrow night. Please pray for physical strength and stamina for him and safety driving. Please pray that we will be kind to one another and support one another during this stressful day. Anyone who has gone through these kinds of hospital days with their children, especially when it's over and over again, knows the fear and fatigue. Most of all thank you for praying for our little girl. We are so hopeful tomorrow will give us the direction we need to know if we should move forward with surgery in Cincinnati or not.

Someone sent me an email recently that said, "God is NEVER late." I want this tattooed on my heart! This waiting is another gift of grace. We are growing and changing through this journey. All Danica's days are already written. Our hope remains!

Wednesday, July 21, 2010

Love and lemonade

Sometimes I will get a prayer request or hear of someone in need and think of a great idea of how I could help. Then I start to feel what I want to do is not big enough and won't really make a difference. Besides, someone else closer to the situation will step in anyways, right?

This past week we were incredibly blessed by three little girls and a cookie and lemonade stand they ran for Danica at their family yard sale. There was a wonderful article in the Canton Repository yesterday titled, "Making Lamonade", and I was so hoping it would post on the online version, but I haven't seen it yet to make a link. I will just share it here in it's entirety.

"YOUNG GIRLS' STAND RAISES FUNDS, TEACHES LESSONS. When life hands you lemons, the saying goes, you make lemonade. Three young friends of Danica Snyder, a 2-year old girl in need of spine and brain surgery, did just that over the weekend. To help defray the girl's medical expenses, they operated a lemonade and cookie stand for three days during a garage sale held by one of their parents. "LaRissa Weimer, Darby Smith, and I had known about the Snyder family and their financial need during this time since they attend Faith Bible Church with us, where Danica's grandfather, Greg Roberts, is also a pastor," said Melissa Weimer, one of the mothers of the youngsters. "Our daughters, Brooke Weimer (age 3), Amelia Smith (age 5), and Marah Weimer (age 7), know Danica and her sister, Delaney, from Sunday School." The mothers suggested having a lemonade stand at Larissa Weimer's garage sale. They believed raising the money for something would help teach their children about showing the love of Christ by helping others. "We thought this would be an excellent opportunity to teach them about giving, in a way that might seem more tangible to them," Melissa Weimer said. "The stand was purely donation-based, and we had signs that made it clear that every cent raised would go to Danica and her family." Weimer said the stand brought in far more than expected. "I thought I was setting my sights high by hoping they might bring in $50. They made that by the first morning. One woman who came to the garage sale bought a brownie for $5, and then handed it to the girls for them to share. A few people dropped in money and wouldn't take lemonade or cookies. "People talked to us about their kids and grandkids. We got to share Danica's story," Weimer said. "It was truly a heartwarming time, and it was a blessing to all of us." When the sale was finished, the stand had gathered $256.70 in donations, "Weimer said, "All from a lemonade and cookie stand run by three little girls! And the thing is, it's not that they sold a large quantity of anything. People just opened their hearts to help a little girl. And we know that even though this stand is over, the journey for Danica and her family is just beginning."

There is no small act of love. This verse has been on my mind and heart as I have thought of these sweet girls standing in the heat for three days in a row learning how to give. “Be imitators of God, as dearly loved children. And walk in love, as the Messiah also loved us and gave Himself for us, a sacrificial and fragrant offering to God.” (Ephesians 5:1-2) To see Danica stand beside her little friends as they served her reminded me of how God intended us to love one another. This leading up to Danica's benefit Monday (blog post to come) encouraged our hearts in a way I cannot put into words. We have never before witnessed such an outpouring of support and feeling of community and family as we did Monday night at Chic-fil-a. God is so good to wrap His arms around us through YOU.

Danica is scheduled for a full day of flexion extension x-rays, MRI under sedation and ortho surgeon visit in Cleveland either Monday or Thursday of next week. We won't know until the last minute because she needs a special anesthesiologist. Delaney has plans to go to my sister's home in West Virginia for a fun week with their family. They had a death in her husband's family so the plans for Dan and I to get away for a night and take Delaney to meet them is up in the air too. A month ago I would have been in a panic. Tonight I can say without reservation I am resting in my God's perfect timing and plan. He will reveal this moment by moment and the grace will come, the provision will come, the direction will come. It always has, and it always will. He is faithful.

Monday, July 19, 2010

Allow for the possibilities

If you have known me long you know my love affair with real estate, home decorating and fine furnishings. This began as a child. I was blessed to work in the industry and also decorate many homes before we ended up selling literally all of our things and moving here after Danica was born. Our little hodge podge collection of furniture now makes me perhaps the happiest I have ever been, but I still love to look at and touch my former world sometimes. This past spring I had been saving for a bird pillow at Arhaus, and when the 30% coupon came Delaney and I set out to buy it. While we were there Delaney saw a beautiful shell used as a prop in one of their set designs. She asked me how much it would cost. The manager heard me explain to her there were many things in the store that were used to decorate and not for sale. Delaney said to me, "Well, we could at least ask!" This kind lady took that shell, wrapped it up in tissue and a ribbon, tucked in in the beautiful bag and gave it to my sweet girl.

I have thought of that day many times over the last months as we have witnessed God providing for us through people. I am not great at asking for anything and maybe deep down inside before all this began it's because I think most people will say no or be annoyed or are just too wrapped up in their own stuff, understandably, to be sucked into the "drama" we are in. Delaney reminded me how easy it should be to ask, even for impossible things.

As Danica's benefit tonight approached I felt a measure of guilt watching these amazing book club ladies who are so busy in their own lives spending time and energy to plan this event. Although it wasn't something I asked them to do, it was still hard to humble myself for some reason and accept the gift they were giving. In typical Monica spirit I wanted to give them a gift back. It couldn't be stationary or a candle or a picture frame. I wanted it to somehow speak to how truly overwhelmed I have been by their love and the privilege of knowing them the past year. I wanted to find a way to say to them how they have changed something inside me and literally given me the strength to move through these days. This club began about a year ago when things were really ramping up with Danica's diagnosis and so many times I have felt guilty when the conversation turns to our family or Danica's Chiari. I wanted to know their stories too. I know they have tough stuff and hard days and sleepless nights just like I do. Over the months we have let one another in through the sharing. I have never been part of a group like this before.

You may remember one of my first posts "Blessings and Curses" I quoted from one of my favorite books written by Shauna Niequist. Her long awaited second book, "Bittersweet" is being released this week. We had chatted about her new book coming out at our last book club meeting. Everyone agreed how awesome it would be to somehow get Shauna to come to Canton for an event and how much we couldn't wait to read her new book. I had an idea that night to ask Shauna if I could buy copies of her book a little early to gift to these women. Then I stuffed it in my, "Don't be so crazy" file drawer in my head and went back to trying to think of something I could buy at Hallmark that might suffice.

Last week I was reminded about the shell and Arhaus, so I sent Shauna a message. I titled it "Believing impossible things before breakfast." I told her about these women and our book club and how this little band of hearts has come together in such amazing way. I asked her if I could buy copies of her new book early. I didn't hear back right away, but then her message came. She was mailing books for each of the ladies helping tonight. When they arrived Saturday I could not believe she had taken the time to inscribe each book with their name and sign. I was reminded that sometimes asking is all it takes to receive.

If the story ended here it would be amazing, but it doesn't. This book, which I will write more about later, has a chapter in the middle titled, "Join the Club." Shauna's words are as if she was writing about our group. I will just quote a little here,

" . . . The books and the time we spent in each other's homes connected us over time and made my life in that season feel richer. I think that's how it happens, most of the time, kind of by accident when you are doing something you love, and only when you're lonely enough to take a risk . . . I know so many people who are just done with the official small group thing, and I understand why. This is what I would say to them: find connection and community wherever it already is, even in tiny ways, in your life. Take a risk and cultivate the tiniest possible connection, even in the unlikeliest of places. Sometimes it does work to set out together for intimacy, honesty, truthtelling. But more often, in my experience, you find those things by going through the back door--serving together, cooking together, reading together. . . In a world that's wracked by loneliness and ravaged by divisions, those connections are no small thing. If they make you better, more honest, more loving. If the presence of Christ is apparent because of the way that you love each other, because of the good thing you bring out in each other, then what else is it? When you walk with someone, listen to their story, carry their burden, play with their kids, that's community. When you pray for them in the middle of the night because their face popped into your mind, when you find yourself learning from them and iviting them more often into the family places in your life, that's community, and wherever you find it, it's always a gift."

Ask and you shall receive and always allow for the possibilities! God's grace is wrapped up in gifts everywhere.

Tuesday, July 13, 2010

Butterfly girl


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

We always begin Danica's Chiari story in late April, 2009, when she woke up from a nap with a very crooked neck. The truth is on August 5, 2008, when Danica was 10 months old, Delaney picked her up around the waist to move her while playing in the room adjacent to me. She sat her down in just the wrong way and Danica began screaming. We ended up taking a ride in the ambulance to Mercy. It wasn't until another hospital trip the next week to Akron Children's that Danica was diagnosed with "wry neck" or tortocollis. We now know that Danica's skull has been fused to her neck vertebrae since she was born and her Chiari is very possibly not congenital but what they call "secondary", a brain herniation that formed as she grew and her crooked bones forced her brain into her spinal cord. I know I have mentioned this incident to doctors but do not speak of it when recounting Danica's story to most people. She healed after some time and PT, and we never thought it was anything chronic until the next spring.

Delaney had a breakdown today. This is not the first in the past months. She has increasingly been acting out to get our attention and reacting very emotionally to things she would not normally get upset about. Through sobs and blotchy face she honestly told me she fears she caused Danica's Chiari that day she sat her down so hard. She said she prays every day God will make her sister's neck better so we can have a normal life. She said sometimes she wishes it was her neck that was "broke."

As a mother my heart has broken a million times over Danica and what is going to be her lifelong condition. I can honestly say my heart has broken as much if not more over my other healthy daughter, Delaney Jayne. She is my butterfly girl. She is smart, engaging, creative, inquisitive, brave and caring. She is just a little girl, but she carries around so many grown up experiences and concerns.

I have been writing to both my girls since before they were born. Dan has been writing to them too. Dan's mom died when he was young, and one of his greatest sadnesses comes from not having anything truly tangible about how she felt about him personally. There are many entries I could share here to try to express how much I love my Laney and how brave she has been for so long, but I will share the first entry in a new journal I started when I was pregnant with Danica with the above quote on the cover. It was written September 2, 2007.

Dearest Delaney,

I just talked to you on the phone. You are at "new" grandpa and grandma's house in Ohio. I am in the hospital and your dad is home sleeping because he worked last night. We made the very painful decision to send you to stay in Ohio and begin school there until your baby sister, Danica, arrives. I have had a long and painful pregnancy full of complications-including surgeries and long hospital stays.

In ten days you will turn five years old. You have been my joy and my strength since the day you were born. Every day I have prayed that God would help me learn how to love you loosely. I am so proud of you, Delaney. Even at five years old you are so confident in so many different situations.

I bought this journal because the message on the front reminded me of you-my beautiful butterfly. I know you don't fully understand what is going on in our family right now but with each up and down you have bravely and cheerfully adjusted.

Someday, if you are blessed with children, you will understand how hard it is to be a mother. When you came into my life I instantly learned how to love another person more than myself. In many ways letting you be away from me these weeks is an example of a mother's love and sacrifice. I know you are happier there-staying busy and not having to go through the uncertainty and daily stress we are dealing with here. I hope you look back someday and remember this time as an adventure. I ache for you and cry everyday because I miss you so much.

I have heard many times that when you feel lost in your life or unsure of who you really are you should look back at yourself as a child. I want you to know later-when you may not feel as sure as you do now-exactly who you are. Although you will change and grow, I know the foundation of your sweet spirit is laid. I love you, Delaney Jayne.

-Mommy


Won't you please pray for Delaney tonight? Please pray for her tender heart. We need to know how to love her better through this. We need to know how to give her more support and give her more chances to do "normal" things Danica cannot do. Please pray we will know if and when she needs outside counseling. I have asked her several times, including today, if she wanted to share with someone else. I feel very glad that she feels comfortable enough to let loose so many emotions and real feelings with me, but I want to know she is really going to be truly okay in the long term.

She told me today while doing art, something she does every day, she is not going to have children. She has held to this for some time, in part I think because of what she watched me go through. She said she will be too busy working on her art and besides she will have dogs who will be her children. Oh how I love this girl.

Friday, July 9, 2010

Loaves and Fishes

"We have here but five loaves, and two fishes." Matthew 14:17

I'm sitting here in a completely quiet house. If you saw my body and soul yesterday afternoon it would have looked like the little battery indicator on your laptop when you get that warning it's going to shut down if you don't plug it in. My mom and dad, who are leaving on a missions trip to Mexico tomorrow, took the girls last night, and I rested. It was as if you could literally see and feel my battery charging. I didn't wake through the night and when Dan left for work this morning I stayed in bed and fell back asleep. It was very hard for me to leave Danica because she had been so sick. I was reminded in several ways yesterday God would care for her, and He was providing a specific way for me to be still. Remarkably I did not have any new orders for my job which is almost unheard of. It was a specific mandate for me to stop and rest. I am so grateful for this time and especially to my parents for caring for the girls so well.

As I have had some rare time to sit and meditate this morning I keep going back to God's goodness and provision for our family through people. My dear nephew Avery, who is 8 years old, called me yesterday to tell me he had put the $4 he had been saving in the mail for Danica. My sister said as she was reading the blog update to him he spontaneously ran upstairs to get this money and bring it down to her. Yesterday evening my friend Kim, who is helping to plan the upcoming benefit for Danica, (It is at the Belden Vilage Chic-fil-a on Monday, July 19th, from 5-8 pm) came by to drop the prayer cards that were reprinted for this event. These cards were completely donated by a local printing company, USA QuickPrint. In the box of cards was a $20 bill from a stranger who Kim ran into while picking up the cards and chatting about Danica's story with the owners of the print shop. He took one of Danica's cards and gave Kim the money for Team Danica. Today Grabowski and Company is working on the design for the signage for Danica's benefit. Again, donating their time and resources. We received a donation this week from a family in California who has faithfully prayed for us and sacrificed to make multiple donations to Danica over the last months. One of the most remarkable stories is a company who heard about Danica through RMLC and my sister's Cookies for a Cause, National Fundraising Lists. They are planning a "Team Danica" day on Monday, July 12th. Employees are donating to be allowed to dress down and show their support for Danica. These are just a few examples of how God takes just a few loaves and fishes and turns them into enough. We are humbled and so encouraged by the love. I paid a bill to Cincinnati Children's this week, and it felt like a hundred hands carried that burden off our shoulders. It was God's hands through each of you, by praying and giving. Thank you.

I am heading out to get Delaney and Danica. They have been building a large house out of cardboard boxes with my mom. Apparently it is decorated too. Danica is feeling better, and we are looking forward to a peaceful weekend. Our hope remains!

Wednesday, July 7, 2010

Fake erased

If you are a Seinfeld fan you will remember the episode where Elaine goes to the doctor and peeks in her chart while she's waiting. She reads a comment from a doctor on a prior visit that says she was "difficult." She mentions it to him, and he acts like he erases it and moves on. She says, "But it was in pen."

Like real relationships in real life doctors say things out loud they can't "fake erase" later." This is what happened this week with the orthopedic surgeon in Cincinnati. Tuesday I heard first from Dr. Crone's office, the neurosurgeon, that Dr. Crone called Dr. Crawford. He questioned him about his change of heart and reminded him how strongly he believes Danica needs this surgery now. He asked him why he was stepping back from participating. Dr. Crawford told him it was because he felt like "the father" (Dan) was not completely on board with the surgery or trusting in him as a surgeon. I was flabbergasted.

If I could transport you back to the appointment we had with Dr. Crawford you would see a family of four who had driven hours through the heat and then sat for almost two more hours waiting for our appointment. The kids were literally climbing the walls. Like usual I was driving the conversation bus most of the time because I have been the primary caregiver and the one who has been doing this for a year and a half now. Dan was trying to watch the girls, particularly Danica who can get hurt or fall so easily. Dan doesn't come across warm and fuzzy to most people on first meeting anyways much less a man under these circumstances who began the conversation with a comment about not needing our business. I KNEW what he meant--that he would not recommend such a risky surgery just to make money--he felt like Danica needed this surgery. As a protective daddy with so many questions and reservations of his own Dan felt this was a very insensitive way for a surgeon to start off. There was no real verbal conflict between them, but everyone could sense tension. Still, when we left there both Dan and I felt Dr. Crawford had made our minds up that we needed to be brave enough to do this to keep Danica safe and give her the best chance. So, very long story shortened maybe just a little, Dr. Crone convinced Dr. Crawford to step back on board. I still do not know for sure if his feelings about Dan were the true reason for his "pulling" out almost two weeks after our visit, especially after having multiple conversations looking for dates for the pre-surgery scans and discussing actual surgery dates. Something doesn't totally ring true there. At this point we can't just "erase" this from our minds and hearts and move forward.

Again, it seems God is asking us to step on the brakes a little. Of course, I called Dr. Menezes' office late last week and spoke at length with Lonny about Danica's symptoms and what is happening. She promised I would hear back from them early this week. Again, I have not. I turned to our dear Dr. Cohen in Cleveland, and he called me back within several hours. His concern for Danica from day one and involvement in her case is remarkable to me. We went ahead and scheduled Danica's flexion-extension MRIs in Cincinnati on August 10th and a new appointment with Dr. Crawford and Crone before surgery. They are back to looking for a date. In the flurry of conversations I felt like I needed to at least keep moving forward with these important scans and possible reconciliation with Dr. Crawford. Dr. Cohen agreed we keep these doors open but suggested when his assistant Helen is back from her vacation on Monday we could try to schedule the scans there in Cleveland earlier. He would like us to meet with their head pediatric orthopedic surgeon, George Thompson. If we can do this prior to our planned Cincinnati trip we may have more clarity. He reiterated to me that no one, not even Dr. Menezes, has seen a case just like this. There is no definitive answers. The hesitation we are feeling from everyone is because no surgeon can dip into their experience and tell us what the right decision is or even how this surgery will really go. They don't really know what complications could arise immediately following or down the road. There's no success rate data to go to here. But, Danica needs some kind of surgical intervention to protect her, and we can't decompress again without fusion.

If for no other reason I believe God is slowing things down a little, because I am really not well. I had some blood work last week, and it came back with lots of highs and lows. The results are shouting to me the fact my body is breaking down from all this stress. Somehow I have to put on my own air mask before this plane goes down, and I am no longer able to help Danica and my family survive. I don't really have a plan to make things better, but I know I have to find a way to change something.

I had to take Danica back to the pediatrician tonight. Her fever spiked again today. Her behavior has been erratic the past two days. She seemed to improve on Saturday and Sunday but began having lots of spasticity Monday and had a fall yesterday and really bumped her head. She has also been acting out--almost like a mild paradoxical reaction to the Omnicef she was on. Some of you know Danica has had bad drug reactions in the past. They have not always been with the first dose but after they build in her system. Her right ear is now infected in addition to the left one. The doctor switched her to Augmentin. I can only imagine how this kind of infection adds to her Chiari pressure in her head. Please pray she will be able to rest and this antibiotic will not adversely affect her but aid in healing.

Thank you for continuing to pray for wisdom as we take each step. I am reminded I must yield to God's perfect timing. All Danica's days were written when there were none of them. We need more grace to rest in this truth and strength made perfect in so much weakness.

Saturday, July 3, 2010

Lament and praise




Dan and I had a rare date night last Friday. We talked plenty about our journey with Danica and our faith. Dan is really a man of few words most of the time, especially in social situations, but when he and I are alone he opens his heart. Like many marriages there is often a disconnect between Dan and I in where we are with our understanding of God and our walk with Him. He knows my faith is often very complicated by theology and too much "head" knowledge. He sees me struggle to find the simple truths that matter. He shared with me his daily experience of late--how when he wakes he feels dread and great pain at facing our life but every night, no matter how hard the day has been, he is drawn to say "thank you" to God. I have thought of this over and over since our talk and realized I have been stuck in a one sided lament and need my gratitude restored.

My old blog was dedicated to the discipline of gratitude. I began losing that focus last fall when Danica was facing her first surgery. I stopped looking for the tiny graces, the quiet joys, and the moments of peace in the long hard days. I have been reading the book by L.L. Barkat, God in the Yard. In week 6 of this book about spiritual practice she focuses on prayer and specifically the role of lament in our prayer life. She writes, "Richard Restak notes that our brains cannot keep more than one emotion in the foreground at a time; too much emphasis on depressive thoughts can send us into a depressive spiral. Isn't it interesting, then, that Psalms incorporate two elements into lament: the truth of our struggle, and the truth about God? It is not necessary to rush past your struggle (go ahead an sit with it for a few days), but you might plan a second lament stage by reshaping your words into the form of a Psalm."

She then references Psalm 118 as a framework. I love this.

(1st lament item.)
(Give thanks to the Lord for He is good. His love endures forever.)
(2nd lament item)
(Give thanks to the Lord for He is good. His love endures forever.)
and so on . . .

Everything I was going to fill you in on tonight as far as Danica's newest scans and surgery are back in limbo. In addition to Danica becoming very sick on Thursday with an ear infection we received a call from Dr. Crawford's office, the orthopedic surgeon at Cincinnati Children's, that he is removing himself from Danica's surgery. At this point we do not know why he made this decision. Even the neurosurgeon, Dr. Crone, was unaware. I spent much of Friday on the phone between the two offices in Cincinnati and also with Dr. Menezes' office in Iowa. I was made to feel it was perhaps his not wanting to step into such a "messy" surgery and the risks involved but also some politics being played out internally that we cannot fully understand. Without a bone guy we cannot move forward at Cincinnati. We should know more Tuesday.

In the mean time I want to lament about more limbo, possible new paths, more appointments, new relationships, more decisions, different timing . . . All this very real upheaval and uncertainty is balanced by the truth, Our God is good and His love endures forever. One thing we can see for sure as we look back at each step we've taken is God is in it all. No meeting has been worthless. No appointment has been on the wrong day at the wrong time or the wrong place. We have made discovery with each doctor we have met.

Tonight Danica is feeling much better. We had a truly joyful time at a cookout at my parent's home this evening. Danica held her first sparkler. The girls played with "hoop-a-loops." We are tucked in our beds safely with bellies full of goodness and hearts full of love and grace. My new discipline of gratitude is to simplify my faith and follow my Dan's example of weeding through the important process of lament but ending with the bloom of "thank you." We are blessed beyond words. The truth of praise answers the doubt of sorrow with a resounding "His love endures forever!"

Thursday, July 1, 2010

Technology, MIA and fundraising

Last Tuesday night I posted on the old/new Team Danica site a rather long post titled, "Do the thing you think you cannot do." It was about our Cincinnati trip, next steps and the decision to move forward with both surgeries. A few of you who were up late when I posted were able to read this. Most of you found our site dead in the morning and could not access it. For the past week I have been working with the company who had created the site and was hosting it to try to recover my posts, your amazing comments and get things back up and running. After much heartache and particular sadness about losing thoughts and words I have completely taken back over the site and moved back to blogger. We are keeping the name, "Team Danica", and the URL. You can bookmark this site under that name and if you get my emails or are a facebook friend you can get my updates that way too.

Know that if you commented and your comments are missing from what I tried to repiece back together here after the crash I have them in my inbox where they are all emailed, and I treasure them. Know that if you donated on the old/new site through the donation company and not paypal, your donations are recorded and the money will safely make it's way into Team Danica's account. Our intention when we began this original blog was to have a place to tell about Danica's journey and to quietly receive the love and support from so many who are praying and wanting to help our family. I missed Danica's life verse being front and center, the music which speaks my heart and other little things about being here on blogger. I feel like I'm back in a cozy spot. Thank you for your patience while resolving all this and all the concern shown during our "down" time. I do plan to try to repost something to communicate the information lost about moving forward with Danica's surgery. I just need to find a quiet hour.

When my sister, Heather, began making Cookies for a Cause she asked me to add the paypal button to my site for donations. I really hesitated. So many of you have sacrificed to help our family over the last three months. God has needed to humble my heart many times through this process to continue to be able to even wrap my head around the love and care you have shown us. The purpose of this site was never to raise lots of funds.

When you are in a long time of crisis with your child you learn that money has little or no value in life except that it can provide perhaps better access to better care for them. One of our great prayers and needs as we move closer to her surgery date is the wisdom to know how I will continue to work and be there for Danica's recovery. My own physical and mental health is failing greatly. I am still continuing to work full time from home, handle all the appointments, be up with Danica almost every night and be a wife to Dan and mommy to Delaney. Although Danica's diagnosis will continue with the need for life long scans and some treatment we hope and pray by the end of 2010 we will see some light and relief for our family as far as the daily stress and pain.

Your donations help ease some of the financial burdens during this critical time. We are continuing the "Team Danica" fund in faith and in gratitude. This fund will be able to offer various forms of financial relief for our family over the next long 6 months or more of surgery and recovery. These donations help ease the burden of the medical bills, traveling to hospitals and prayerfully allowing me the possibility to take an extended period of time off work to care and provide for Danica during the grueling recovery from her upcoming brain surgery and spinal fusion.

Danica sings one of her favorite Sunday School songs every night before bed, "My God is so BIG, so STRONG and so MIGHTY, there's NOTHING my God cannot do!!! We are trusting in our God who has proven Himself faithful to provide every step of this journey. We are humbled and changed by your continued love and support. Please pray for us. Danica has a high fever today. It's probably a flu bug, but she is really very sick.