Sunday, May 30, 2010

Grief and Gratitude

There are times in your life when you feel like you are in the middle of a b-version movie. The slow motion, over exaggeration of dramatic events plays out on the stage of your life. The audience is small. Even though it‘s your own story you wouldn’t watch if given a choice. Days spent at hospitals are like this. You sit for hours waiting for the moment when something big will be revealed to you. The story line is all set up. The past weeks and months have all lead to this. You’ve played it over in your head a hundred times. If you’re an optimist or believe in God and miracles more than half of those times you’ve imagined triumphant music beginning to play in the background, and the ram appears in the thicket. You are saved. The rest of the time the inevitable pessimist takes over. You’ve imagined the worst.

I have heard God asking me for some time to lay my “Isaac” down. In more ways than I ever thought possible I have had to surrender this gift from Him back to Him. Leading up to our Iowa trip I felt the knife was poised. I was ready to follow through with whatever He asked including both surgeries immediately. Resting in this faith most of the time I was still desperately hoping and praying for my ram to appear. Instead God has asked us to do something harder. Keep Danica strapped onto the altar, stand with the knife and wait some more.

Our meeting with Dr. Menezes was really very good. God had gone before us in an amazing way through Amy’s aunt Jo getting Dr. Carson involved and his referral and conversation with Dr. Menezes as well as Dr. Cohen’s phone follow up with him. He was expecting us not just as an appointment on his calendar but was thinking about her case ahead of time. Clearly this man’s experience and knowledge of complicated cases like Danica’s is unsurpassed. He was humble and loving and spent so much time with Danica and with Dan and I. He fell in love with our Danica. He went over each scan and clearly explained the three separate conditions--Chiari malformation, Atlas assimilation and the new diagnosis of Klippel-Feil Syndrome. He detailed how they are related, what he believed their origin to be and the plan of treatment in the short and long term. His final conclusion is that Danica's bone problems came first and her Chiari may not be congenital as much as caused by the Klippel-Feil and assimilation pushing her brain down into her spinal column as she grew. At some point after birth her skull has also "slipped off" to the right.

The first order of business was to head down to the ortho center and have Danica fitted immediately for a Philadelphia collar. Dr. Menezes believed she was so unstable he could not send her on the long trip home without this additional support. She does need fused. Her brain (Chiari) needs decompressed, but he explained that if we decompress her we make her so dangerously unstable we would absolutely have to fuse at the same time. He believes the more time we can buy before doing these risky surgeries the better for Danica. The failure rate at her age is very high. The collar is the part I was dreading most as part of her recovery from surgery. It is now her constant accessory. She must wear it from the time she gets up until bed, only taking it off to sleep. She has many physical restrictions including normal childhood things like jungle gyms and wagon rides, somersaults and jumping—anything that would cause her neck to move forward or backward in a sudden motion.

The new diagnosis of Klippel-Feil was the most overwhelming part for me. He said, “These are the things you must do immediately--get her heart and lungs scanned, get her kidney and ureters scanned, get her female organs scanned, have a hearing screening and get her back to the eye specialist.” This very rare disorder is something congenital that happens during weeks 3-5 in utero. Although we now see and understand the effect on her bones forming we do not know if it has caused malformation in other vital organs. This is something that very often happens in Klippel-Feil cases. This week I will begin making all these appointments. I cannot be more afraid than I have already been. This is just something else hard to move through.

Danica did wonderfully on the trip. She literally did not utter a cry in the car either way. I know there were angels surrounding us and carrying us. We could not have made the trip without my parents. I am weeping just thinking of the many times they have been there for us since my pregnancy with Danica. They have driven thousands of miles to be with us and help us. They have sacrificed so many times. Dr. Menezes was running late in surgery, and we waited two hours past our appointment time to see him. Danica’s nervousness was visible as we parked and entered a new hospital. She actually got queasy, began gagging and acted like she was going to throw up. Meme and Pops distracted her, filled her sippy, got her crackers, took her to the hospital library and helped us through such a long visit.

There is a strange whirlwind of gratitude and grief swirling in our hearts. I know I have missed many details and will try to fill them in as my body and heart recover a little. Thank you for your many prayers. The palpable support felt during this past weekend was something I have never experienced before in my life. God is the author of every moment of our screenplay. We know the final ending will be triumphal, because we are more than conquerors in Him, and He does everything He says He will do. In the meantime we will do the next thing.

“My flesh and my heart may fail, but God is the strength of my heart and my portion forever.” Psalm 73:26

Tuesday, May 25, 2010

Lean hard

Danica had a rough day. Her head is hurting her. When I put her in bed tonight she kept hitting the sides of her head. She is ready for Iowa. If you peeked into our home this week you would see we are collectively like a balloon that someone keeps blowing air into. You know it can't hold much more pressure and has to pop at any minute. We are hard on one another. We are afraid, and we all say it out loud in our own ways. We are crying. We are yelling. We are hugging and making up. Most of all we are leaning.

I had opened up blogger once I finally got the girls down to write a post about the overwhelming feeling of loss we are experiencing right now. Everyone else is so excited for summer. Everyone else has exciting plans for Memorial Day weekend and their upcoming vacations. I told my sister yesterday I cannot bear to think of days and weeks in a hospital. I cannot bear to miss another summer of Delaney's life like I did when I was pregnant with Danica and like I did last summer driving back and forth to therapy and appointments trying to find out what was wrong with her. Danica keeps asking if we can do things once we get her bones fixed. "Mom, can we go to the zoo when I get my bones fixed? . . . Can we go to Kee Wee's when I get my bones fixed? . . . Can we please go to the beach when I get my bones fixed?" She is in her own two year old state of limbo. I have not been able to move past my exhaustion and my own grief to find a place of faith today.

Several posts ago a woman from Oregon found my blog. This was not a stumbling of chance but Divine guidance through the expansive internet world to our little place here. I spoke with her on the phone for over an hour just now. Her son was operated on by Dr. Menezes. They travelled across the United States to get to him. She knew my heart on this night in a way that no one else could possibly understand. She spoke truth to me. She prayed with me, and she reminded me to lean.

I have some amazing stories to share about God caring for us in the past week. I have hesitated to write about them because I am afraid I will make people uncomfortable and honestly do not know how to verbalize how very much we have been encouraged and blessed by you. Thank you for not forgetting us as you have your first barbecues and head off to the beach and baseball and backyard nights of sparklers and fireflies. Thank you for continuing to pray and letting us lean on you.

Many of you have asked about the details of this weekend's trip. My dear parents are driving with us. We plan to leave Thursday night and drive through the night with my dad and Dan taking turns driving. We will arrive in Iowa around 11am and hopefully be able to check into our hotel and rest a little before heading to The University of Iowa Hospital to meet with Dr. Menezes at 2:30pm. We will stay the night and plan to make the long drive back Saturday. I do not know if I will be up to posting anything until later in the weekend. Please bear with me as we take time to absorb what the Dr. recommends and next steps. My dear sister Rochelle and her boys are coming here from West Virginia to stay at my parent's home with Delaney. I can't begin to tell you how wonderful it is to know she will be here to love and care for Laney while we are away. Rochelle and her family's sacrifices for us have been numerous through these hard years, and she is one of my greatest champions.

My new friend, Violet, posted this beautiful writing by Octavius Winslow several days ago. I have read it over and over since. Please pray as we lean on one another and lean on you we will most of all LEAN HARD into His grace and strength these next days.

"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."

Sunday, May 23, 2010

In my daughter's eyes

More than anything Dan and I wanted to have Danica photographed before we head into this next surgery. Christina Adam of Grace Designs Photography took these amazing photos of our girl last Friday. We had been scheduled for a spring mini shoot for both girls, but the Saturday rains kept delaying. Christina blessed us by watching the weather reports and coming out as soon as a little sun peeked through the clouds to capture some sweet moments.

"In my daughter's eyes" (written by James Slater and sung by Martina McBride) has been the title song on the soundtrack of Danica's life. Every one of these photos reminds me how brave and beautiful she is.

In my daughter's eyes I am a hero
I am strong and wise and I know no fear
But the truth is plain to see
She was sent to rescue me
I see who I wanna be
In my daughter's eyes

In my daughter's eyes everyone is equal
Darkness turns to light and the
world is at peace
This miracle God gave to me gives me
strength when I am weak
I find reason to believe
In my daughter's eyes

And when she wraps her hand
around my finger
Oh it puts a smile in my heart
Everything becomes a little clearer
I realize what life is all about

It's hangin' on when your heart
has had enough
It's giving more when you feel like giving up
I've seen the light
It's in my daughter's eyes

In my daughter's eyes I can see the future
A reflection of who I am and what will be
Though she'll grow and someday leave
Maybe raise a family
When I'm gone I hope you see how happy
she made me
For I'll be there
In my daughter's eyes

(These photos also inspired a template change for her blog.)

Wednesday, May 19, 2010


Then Samuel took a stone and set it up between Mizpah and Shen. He named it Ebenezer, saying, "Thus far has the LORD helped us." 1 Samuel 7:12

We have had a calm week. There have been no doctor's appointments and a bad cold has kept me from even leaving the house for a few days. This has forced me to rest and just slow my frenetic energy. Danica has had a good week. Dan and I have noticed her falling more just walking through the house. She just drops to the floor without notice. We finally took our sharp edged coffee table out of the living room, and we have been following her up and down the stairs like when she was younger. But she has been sleeping better and not complaining of her head and neck hurting very often. Sometimes we look at her laughing and playing and just want to call this whole thing off. She is "perfect" to us, and it seems too hard to believe what the scans of her brain and bones say.

We are encouraged and so very grateful for the support from so many this week. Literally from around the world people we have never met are finding Danica's story and choosing to sacrifice in some way to love and care for us. We have felt like we are wearing a backpack full of all these rocks so we can barely move a step forward and one by one you are coming behind us and removing a part of the burden. We are humbled and forever changed by God's faithfulness through you.

Know we are making an altar of gratitude in our hearts and our home.

(Please take time to listen to the song on the playlist below which shares the same title as this post, "Gratitude" by Nichole Nordeman. It is the prayer of my heart tonight.)

Sunday, May 16, 2010

Broken Hallelujah

A friend brought me a CD today with a song by this title. It sums up perfectly how I feel on this Sunday night. I am full of gratefulness for a weekend of sunshine and normal things like yard work and laundry and cleaning house. Dan and I were blessed with last evening alone as Delaney stayed overnight with her best friend, Lauren, and Danica stayed with my parents. We had dinner out and then sat on the porch and talked for hours about anything except what is facing us, and then we slept 10 hours. Today it was back to normal, and so many of you have asked what is going on. I guess I never posted the "Iowa" post on facebook which I am finding is how most people want to read this blog and others who are even less technologically literate (I'm not naming any names ;)) have wanted to "follow" the blog but can't figure out how to sign up. I apologize for not emailing out some of the posts or sharing them via facebook. I am pretty scattered these days and yes, a little broken.

Tuesday afternoon we found out Danica's appointment at the University of Iowa with Dr. Menezes is scheduled for Friday, May 28th at 2:30 pm. We now know that people wait months to even see this doctor, and he turns many cases away, so the fact he not only took her case after reviewing what Dr. Carson forwarded him but also scheduled Danica so quickly is telling.

Dan and I drove to Cleveland on Wednesday to review the 3D CT from Cincinnati with Dr. Cohen and get his opinion on spinal fusion in Danica's case as well as hear what he knows about Dr. Menezes. Dr. Cohen spent over an hour with us reviewing the history of Danica's case, reiterating how truly rare her Chiari and congenital bone issues are and, much like Dr. Carson, telling us he is not the surgeon for fusion. BUT, he said that Dr. Menezes is truly the only neurosurgeon in the US, even the world, who may have operated on a case similar to Danica. He told us to go see him and do what he says. There are no other opinions we should seek. He did discuss what he considered options--like perhaps operating on her Chiari first, opening the dura, putting in a graft and coagulating the "tonsil" to see if it might give her a few months of relief like the first decompression. His thinking being it might buy us some precious time for her to grow more before we try to fuse. His general school of thought still being Danica has two separate issues that may be aggravating one another, but he is not convinced the assimilation of her skull to her neck vertebrae is the primary cause. At the end of our time with him he said he would put a call in to Dr. Menezes and get back with us when he heard from him.

Thursday afternoon Dr. Cohen called after he had spoken to Dr. Menezes about Danica. Dr. Menezes took a different stance than Dr. Cohen from reviewing her file. He believes although Danica clearly has a significant Chiari malformation her bones are the main problem. He did not express if he was going to recommend immediate fusion in their conversation. What we know about Dr. Menezes is that he is painfully direct, in complete control of any phone conversation or meeting and does not leave much room for "discussion" with his patient's families. A sweet mother who's son was just operated on by Dr. Menezes spoke with me on the phone Thursday night. She gave me all kinds of wonderful information about how to navigate our visit with this man, how to best use the hospital system, etc. and most importantly she said, "DO WHATEVER HE TELLS YOU TO DO FOR DANICA. TAKE THE APPOINTMENT HE GIVES YOU AND HAVE THE SURGERY!"

In our minds we pictured going to Iowa weekend after next and then purusing Dr. Menezes' calendar to find a surgery day that suited us both--one that also gave us time to come home, get Laney finished with school and settled with my sister and her family in West Virginia, pack, give proper notice to our jobs and arrange the dozens of other things that must be figured out before we leave our life and head back. What we now know is that this man travels out of the country extensively, he has families who come from other countries and bring cash to pay him to operate on their loved ones. This is not a situation where we have any leverage in finding a "best" date for us. We are going to have to make it work.

I can't even explain to you how insane my head is thinking we might have to stay or come home and then turn around and head right back. We don't know how we will work out our employment. Dan is eligible for FMLA which is unpaid time off but must keep paying his insurance premiums and of course we still have all our bills here to pay. I have been a contractor for 2 years before taking a full time position recently with my current employer. I am not eligible for FMLA and am the most likely to need to be completely off for some time--the weeks, possibly month, in Iowa in the hospital and then the grueling recovery time here at home. I also make the most money, so me quitting my job or just not being paid is almost an impossibility as well. We can't wrap our heads around how this will work.

The most painful thing for me in planning is the fact I have to be apart from my Laney. I have done this before, for weeks, and it hurt me so deeply in a place I cannot even bear to go with my thoughts anymore. It hurt her too. Here we are, needing to say goodbye, missing the library reading program and swimming and days at the park and icecream not to mention our cancelled beach trip and what feel like so many lost days of her life to help her sister have the best chance at hers. It hurts so badly I can't breath sometimes--the seeming unfairness of all this to my Laney.

The next two weeks will be uneventful with news but full of trying to figure out as much as possible how we will survive after the appointment--putting the pieces out on the table as best we can so they can quickly be placed together when the doctor says it's time. Please pray for us. We need to find some kind of peace. We need to focus on what truly matters big picture but also somehow still have the strength to take care of all the details. We need to find a song, however broken, and keep singing.

Hope is the thing with feathers
That perches in the soul,
And sings the tune--without the words,
And never stops at all.

E. Dickinson

Thursday, May 13, 2010

Sister love

"Where there is great love there are always miracles." Willa Cather

So much has transpired in the last 48 hours in regards to critical decisions about Danica's surgery. We met with Dr. Cohen at length yesterday, and he actually was able to speak with Dr. Menezes in Iowa today about Danica's case. He called this afternoon to share their discussion. I was also so blessed to receive a comment on this blog from a mom (who stumbled upon it through google) whose son recently had surgery with Dr. Menezes. We had a phone conversation tonight that provided so much important imformation about our upcoming consult with this man. I am so grateful! I truly don't have the energy to share all the details tonight, but I will try to catch you up this weekend sometime. I have a different reason for this post!

My dear baby sister, Heather, lives in Jacksonville, Florida and is in culinary school pursuing her dream. She has been so supportive through this journey. This past week she began an amazing effort to raise money for Danica by using her love language which is baking sweets. She is calling it "Cookies for a Cause." In addition to taking individual orders on etsy she is planning to do a few other "bake sales" to help.

The above quote is one of my favorites and is what came to mind when I first heard about Heather's efforts. Every cookie she bakes with love is an important part of Danica's miracle. As we stare this newest trip in the face and the prospect of weeks far away from home at a strange hospital we can truly only focus on what is happening with Danica. In reality there is a huge financial component to just surviving as a family these next months. The exhorbitant cost of this surgery is not really on our radar. We are worried about travel expenses and keeping our basic bills paid here at home while we are away and during recovery. There are so many unknowns we cannot even plan for.

Heather's love in action has strengthened my heart this week. Thank you sissy. I love you. Thank you to everyone who has become part of our story by helping us. Our hope remains!

A daddy's heart

Dan emailed me this "guest blogger" post this morning. Waiting for new mercies, because it was a really bad night.

It’s 11:30 at night as I start typing, and I just got home from the 3-11 shift after a grueling trip to Cleveland to see Danica's surgeon. Danica is sleeping in my spot tonight after complaining of sore legs and a sore shoulder. Mom will watch over her throughout the night as both are still awake.

This blog is about Danica, for sure, as she has many challenges ahead but this family is also struggling.

Monica and I recently attended an art festival in the city and one of our favorite sayings printed on a card read something like “No one wants to hear about all the bad things in your life so just keep smiling.” I recently revealed to a dear friend the reason I never call or email anyone is that no one really wants to hear about all the bad stuff. Read Facebook and you see “I like this,” “I’m a fan of this,” “We’re going on a vacation here,” “Here’s a funny picture of so and so.” Read my wife’s FB posts and you’ll see someone filled with pain and stressed beyond imagination, never sleeping more than two hours a night. The only thing keeping her sane is the constant vigil of protecting her daughter and the endless planning of the next surgery for Danica. She has been at her breaking point for quite some time now. I do believe she has good support via family and friends and God which could be keeping her moving forward. I honestly don’t understand how she keeps going day after day.

Delaney, who's most difficult physical struggle was 13 stitches for a very deep cut to her forehead when she was 2, is feeling the struggle now at age 7. My guess is deep down she is concerned for her little sister although not fully understanding what is happening. She has expressed a desire for this family to be “normal” and to have fun more. I have become use to having her spend time with relatives when times get tough and she is probably getting use to being away often. Soon we will ship her off to West Virginia for a week or so during Danica’s surgery. I would say the best time of my day is during our drive to school when we talk about the good stuff in life. It’s just a 20 minute drive.

I’m mostly a zombie these days. I'll admit profanity often fills my mind during the day and dreams of hitting the lottery fill my nights so my wife could quit her job and care for Danica full time and not have to deal with the financial burden all this brings. I have had the exact same dream every night for the past 4 years, at least. I avoid thinking of our situation by constantly staying busy cleaning, laundry, yard work, playing with Danica, working out. I’ve heard that it could be a “Snyder gift.” I don’t feel anything anymore except extreme anguish. An old friend of mine recently ended his life, and I feel strangely relieved for him. I do not have the capability to sit and think, at length, about what we are going to face with Danica. It feels like all the operations we discuss are going to happen to me as well. [At this moment Danica is crying in Mommy’s bed about how bad she hurts] I do not want to be here right now. My mom kept a journal during parts of her life but failed to say or write anything to us before she died when I was young. I find that interesting.

Delaney has learned to be a survivor already. Independent. Opinionated. Thoughtful. Danica is our little miracle child and is already a survivor. Monica will survive because her two daughters cannot be without here, believe me. She also has a curious strength found in her faith.

Zombie’s don’t really survive or die. They just exist, don’t they?

Wednesday, May 12, 2010

Iowa or bust!

I am sitting here typing in the dark because Danica has been up screaming already tonight that her legs are hurting. This is a symptom that has been increasing over the past weeks and is worse when she is lying down. She is sleeping next to me now but her legs are moving all around like she has restless leg syndrome. Every passing day I am more sure we need to get these pieces together quickly and find her some relief.

We have an appointment set with Dr. Menezes at The University of Iowa Hospital on Friday, May 28th at 2:30 pm. My parents have lovingly offered to take the trip with us so we will be driving and they will be able to help watch Danica during the consult after Dr. Menezes examines Danica. (In most our visits with doctors either Dan or I, usually Dan, has to take Danica out so the other person can converse and listen. It always makes us feel like we are missing information and disjointed when we leave.) My sister Rochelle and her boys will come here to stay with Delaney while we are away.

We met with Dr. Cohen today, Danica's neurosurgeon for her first decompression. He so kindly spent an hour with us going over the newest scan and many of our questions. He confirmed Dr. Menezes is the only doctor in the US who is truly specialized in Danica's condition. He was impressed with our quick referral from Hopkins, and he even emailed us tonight that he has a call in to Dr. Menezes to discuss Danica's case. I will update a little more tomorrow on his advice for us as we head to Iowa and actually have to make these big decisions.

We are feeling glad to have a plan in place and several times today God has confirmed in my own mind and heart this trip to Iowa is clearly His leading. I have a little sheet of paper in my Bible that says in my mom's hand writing "Proverbs 3:5-6. I love you dearly." She gave me that note and a bag of Twizzlers laying on my bed when I was 15 and seeking direction in my life. I keep it because those verses connected to her love have always given me strength and peace. Tonight I will "Trust in the LORD with all my heart; and lean not on my own understanding. In all my ways I will acknowledge Him, and He shall direct my paths"--OUR path on this journey.

Saturday, May 8, 2010

No regrets

Tonight we were watching old family videos, and I was shocked to remember just how horrible Danica's tortocollis and pain was last summer before she was diagnosed. It made me cry (ok, what doesn't these days?), but it also made me so grateful for her September diagnosis and her first decompression in November. It's so easy to second guess decisions we have already made concerning her care, and these photos remind me just because we are now seeing regression does not mean the months of growth and playful childhood she was gifted are no less a miracle. I have no regrets

She is very crooked today and falling and grabbing her neck. I know it comes mostly from her jumping last night outdoors, trying to grab a leaf in the tree like Delaney was. She has been having trouble going to sleep at night, and I know it is increased pressure in her head and neck. I know we need to get some decisions made soon.

The best video we watched tonight was me finally taking Danica home from the NICU. She was so tiny, so fragile, so perfect. Her days were already written. During a meeting with my therapist this week we talked about Delaney's comment wishing sometimes we had never had Danica. She pointedly asked me if I had ever felt this way too. I can honestly tell you there were hours and days in my pregnancy that I wrestled with the decision. Crazy pain will make you doubt just about everything. BUT since the day I took that baby girl home and made her truly mine I have never once wished for my old life if it meant her not there in it. I was changed from the inside out by this girl. I counted everything loss to get her here, and I'll lose it all again and again to keep her here! No regrets.

Wednesday, May 5, 2010

Stepping stones to Iowa

Last night I turned off my computer and read Dr. Ben Carson's book, "Take the Risk." First of all, if you don't know about this man I highly recommend you find the movie about his life and all the amazing work he has done titled, "Gifted Hands." He is truly an extraordinary man and surgeon by anyone's standards. I'm sure he has hundreds of new cases on his desk each month and still Danica's was on top of his pile today. Through my sister-in-law's aunt Jo who works at John Hopkins Danica's case was personlly given to Dr. Carson's PA, Heather, and another stone was in place to move our Danica to the right treatment.

As I was reading his book last night I just wanted him to be THE one. His faith in God is inspiring and drives everything he does. I kept thinking "THIS IS THE GUY!!!" The book I read glosses over complicated brain surgery cases he has participated in and also his life story and mostly focuses on risk and how we live with it every day and how we can use our brains to calculate risk analysis along with our faith to make good decisions. This was the perfect message for me as a mom who is seemingly drowning in a sea of huge decisions for my daughter. These decisions are full of risk and the outcome is given to me from doctors in percentages but understood by me through the lens of a faith that is "the substance of things hoped for, the evidence of things not seen." (Hebrews 11:1)

Today we heard from Dr. Carson. He said there is one surgeon in the United States who has dedicated his career to this congenital malformation of the cranial junction and how it relates to hindbrain malformation (Chiari). His name is Dr. Arnold Menezes at the Univeristy of Iowa Hospital. My heart sank. Seriously, IOWA??? Trying to pull up a map of the US in my head I knew it was next to Minnesota. It was not somewhere I had ever dreamed of going and certainly not somewhere I would think to find a neurosurgeon for my Danica. There were some other details about his opinion about fusion in children as young as Danica in general and also his opinion about doing two major surgeries combined like was proposed by Dr. Crone in Cincinnati. His office is forwarding all Danica's scans and records to Dr. Menezes as a referral and we should hear from him early next week.

When I got off the phone I googled and searched and cried. I just want to quit waiting and get the fix, you know? Whatever that means I am so tired of these steps involving so many emails and phone calls and trips. I'm exhausted from so many sleepless nights and prayers that seem to be bouncing back. I'm frantic from the endless collection calls that wear at the very fabric of who I believe I am as responsible hard working person. In a fast forward world I want to be sitting on the beach next year watching Danica run around pain free and saying, "Wow, thank you, God! Four years and we are FINALLY out of the valley. EXHALE."

I stumbled upon this video tonight and everything calmed down in my heart and my mind. It's 17 minutes long and much more detailed than most of you will be interested in, but it is the surgeon, Dr. Menezes, speaking. He has clearly seen hundreds of cases in varying degrees like Danica's, and his methods are much more advanced than what was discussed with us previously.

To so many of you who have ministered to us through your fervant prayer, kind notes and emails and tangible gifts, THANK YOU. I can't begin to communicate how each one has come at exactly the right time to keep us focused on truth and dispel our spirit of fear and replace it with power and love and a sound mind. Each gesture is truly God's hands to us as we navigate these stepping stones in Danica's journey.

I would specifically ask prayer for our Delaney tonight. She had a little break down on Saturday and even asked why we ever had Danica. In many ways our life has been consumed by Danica and her needs beginning in early 2007 with my very high risk pregnancy. Delaney has made many sacrifices of her own. Please pray she will have a gentle spirit towards her baby sister who she truly does love very much. Please pray she will have an understanding greater than her seven years to help her make this journey without resentment. Pray Dan and I will find special ways to show our love and appreciation to her as we move forward.

Hoping to have a post with a plan early next week some time! Our hope remains!