How do I say thank you?

Around this time last year I took Abigail potty one day and noticed a dark area on her right leg. I immediately asked Jason if he had ever noticed it before and he said he wasn't sure. So I filed it away under 'things to keep an eye on.' And keep an eye I did. When a small mass turned up underneath the area I felt like I knew what we were dealing with. And when we started seeing pain and itching, I knew before we ever even made that drive to have an MRI done that there was a tumor in my daughter's leg. This is the nature of NF.
And this year, well, things are different. Do I still worry from time to time that she has a tumor somewhere? Absolutely. I sometimes feel like I am just holding my breath and waiting for the world to be rocked again. But I also feel grateful.
I have tried over and over and over again to write a beautiful heartfelt thank you to everyone who donated money, posted our badge on their blog, and posted and re-posted the fundraiser for Abigail's surgery on facebook. But I can't ever quite find the right words to portray how I feel. I doubt that this blog post will even really come close to giving you a glimpse of how thankful I am. But I am going to try.
In a week and a half my little girl will turn three. Imagine, if you will, gearing up for your child's birthday. It is a time filled with joy, excitement, remembering and recounting the past. Then imagine knowing that inside of that same child you are celebrating is something small, that is growing, and has the possibility of robbing your child of walking, running, dancing, climbing, and even life under some circumstances. Despite the festivities, and even the smile you put on your face, there is a shadow of fear that covers over the celebration. This was where we were last year. We had not yet had the MRI confirm the tumor, but we knew.
One year later, our daughter's body has a beautiful scar to remind me of the second chance she was given. Sometimes I wonder if she will grow to think the scar is ugly or unattractive. To me though, it speaks loudly of other people's generosity and love that they poured out. It tells of a God who cares so much for His children that He would move the hearts of people all over the world to make certain a little girl is given a chance to enjoy being a child. It tells the story of how our daughter, doomed to 'wait and see' if her tumor grows larger and an unknown outcome, given the gift of a surgery, paid for completely by friends, acquaintances, and more so, strangers.
So thank you. Your gifts mean more to me than I can put into words here. I will leave you with a video of Abigail dancing at church on Sunday. I'm not certain that there is a Sunday that passes where her being able to dance escapes my mind as nothing less than the beautiful miracle it is.




The other little girl you see a lot of is Abigail's best friend 'Ednie.' Yes, the aisles at church are pretty much filled with little kids dancing every week, and yes, my daughter raises her hands to worship a few times in the video. :)

Thanks so much to all of you who posted about her surgery, donated, prayed, and walked through all of this with us.

That moment.

I have come a long way since that first time we heard about NF. My fears rarely overtake me anymore. I can get through the day without NF being a thought in my head most days. And even on the days I think about it, it is much less overwhelming.

Every now and then I have a moment where it all smacks me in the face at once. The feeling doesn't generally linger long, but just enough to make me feel like shuttering a little. The other morning as I was getting Abigail dressed I noticed a new cal spot on her and some more freckling. In the grand scheme of thing, these mean nothing more than 'she has this disorder.'

But for some reason that morning I was sitting in a doctor's office at Riley again watching the resident counting her cals. I was listening to him tell us this big word over and over again, and talk about tumors. I was hearing him try to reassure us that she would be fine, but feeling like I just needed to get the hell out of there. The moment passed quickly, but took me a few days to completely shake that feeling of dread and terror that comes over me when I remember hearing neurofibromatosis for the first time.

In all of those moments though I keep coming back to knowing that God has something specific planned both for Abigail, and for us being Abigail's parents. Her coming to be our daughter just lined up so perfectly that there can be no other explanation. And we had sat and discussed, read, and researched numerous special needs before Abigail was born. We talked about HIV, Down's syndrome, cerebral palsy, and drug and alcohol exposure. We discussed autism and on down the list of things I have dealt with as I have worked with numerous people with special needs. Never once did NF come up. Neither of us had ever even heard of it.

So while I wasn't surprised that we somehow managed to end up with a kiddos with lots of special medical needs. I had this nagging feeling that the having a child with NF was something that God lined up for some unknown reason. I wasn't sure if we would ever even find out here on earth.

Last night I sat next a little girl on the couch at the home of a family from our church. This is a large family (I think they have 9 kiddos at home) who had just had a baby. I had brought a meal and was holding their new sweet little one. I asked the little girl about the band-aid on her arm. She replied very nonchalantly she had an MRI that day. When I asked why she told me she had a bump on her head, and then proceeded to pull up her shirt to show me the 'brown spots' that she also had.

I nearly fell off the couch (and had to quickly remind myself I was holding a baby). I didn't know what to ask next because I wasn't sure how much the family new. The mom proceeded to tell me that the dad has been diagnosed with something called neurofibromatosis a few months ago.

I knew immediately in my heart of hearts that we were chosen for Abigail to walk through NF hand and hand with this family.

In a church of around 100 people, there are two families who are dealing with a disorder that is statistically 1 in every 2500-3000 people. Unbelievable. I thought again about sitting in that doctor's office a little over two years ago. This time it didn't bring that sense of dread and doom though. This time it brought that feeling of seeing God's hand at work in the lives of every last person, lining things up perfectly to bring himself the glory!

Enjoying seeing things from a different view,

doctors and smart cookies

Well the appointment with the orthopedist is over. I waited a few days to write because if I had written immediately the post might have been full of profanity.
I'll just give you the highlight of it so as to not bore you. The resident came in first and asked me what was going on so on and so forth. He asked me to describe an episode of back pain. I said something along the lines of she cries, contorts in pain, her legs stiffen and convulse and she holds her back and says hurt. His response "Is it possible she has heard you or your husband complain of back pain and is just copying that for attention." Yes, but that doesn't explain the uncontrollable crying, the contorting and grimacing, and the tremors in her legs. Thanks future doctor. Could you send in the real guy now.
Yeah, that didn't make it any better. The other doctor proceeded to tell me that the majority of cases of NF are new mutations (actually 50% are, and 50% are inherited..so no majority there), that all of her issues with muscle tone, in toeing, inability to run, leading with one side of her body, are all common two year old things, and the best one was that the afo's and de-rotations straps are a waste. I was ready to grab my baby and flee from the room at this point. So to drive it all home before he walked out he said he didn't need a follow up exam and that he would see us in a few years when the NF started causing back problems (it can cause scoliosis but is not guaranteed).
I walked out pissed and doubting my judgement as to why we were doing all of the things we were. However I quickly realized that two other doctors and her p.t. (who have all seen her more than once for ten minutes) seem to think she has something going on and that she needs the devices. So we will stick with their opinion. Oh, and he won't be seeing us again. Ever. If she needs to see another orthopedist it will not be him!!
Now that I'm done talking about that I'll tell you about our smart cookie. I'll start with the fact that Abigail is at pretty high risk for learning disabilities. This thought stays in my head so that I can pay attention and get her help early if I notice anything. But God has reminded me over and over that I need to let go of it because right now, she's fine.
My daughter who turned two less than a month ago can correctly identify colors most of the time. She can correctly name most of her shapes. She identifies the uppercase letters A and B. She identifies the numbers 5 and 8. She knows the street signs for stop, railroad crossing, and do not enter. When she sees her name written she says "A" "B" "I." She knows tons of other stuff, but I am often astounded at how quickly she picks up on things. We haven't really set out to do anything major in teaching her. We have a shape or color we are focusing on each week right now, but all we are doing is making a craft with them, finding them when we are out and about, and playing with that color of play-doh. But she inquires a lot. And when she does I tell her what the color is, or shape, or letter, so on and so on. And a lot of it seems to stick in her brain. She is definitely intelligent.

I'll leave you with two of her prayers yesterday. They make us laugh (notice her theme of food).

"Jes. Mama. Grandma. Popcorn. Papa. Amen."
Interpretation: Jesus, thank you, i like, or help, mama, papa and grandma. And either thank you for, or I like popcorn.

At bedtime she first went upstairs and shared with lambie something about Jesus. When we prayed together she wanted to pray and this is how it went.
"Jes. Mama. Papa. Grandma. Grandpa. Cupcakes. Mama, Papa, cheach. Sar, Gick, brown. Amen."
Interpretation: Pretty much the same as above aside from the telling Jesus that Mama and Papa are peach, and that Sarah and Vicky are brown. Oh the faith of one so small.

Calmed down and ready for a better appointment next week,

Updates on our life.

Abigail felt very intenst about "cheese" here.

Well I'll give you the run down on all of the things that might need updated. First of all our Tea Party on Friday night went very well. Abigail ended up getting sick on Thursday so she didn't get to come. We had a great turn out though, and felt so loved by all of the people who came to support our cause. It was a fun couple of hours with music, friends, and laughter. Our goal was five hundred dollars. We, thus far, have made eight hundred thirty one. It feels so good to be doing something. The link to give is still active, so if you are interested feel free to click on the tea party link on the side of the page. Now I just need to work on thank you's. :)
The crowds waiting on door prize drawings.

We made another trip to the doctor yesterday. Abigail DOES NOT have a milk allergy. Praise the Lord! Seriously a huge relief. We came home and immediately gave her a piece of cheese. And after she drank her milk last night she layed there for a few extra minutes with her eyes closed all snuggled up on her papa. This is not an exaggeration. She just seemed to be basking in the pleasure of the reappearance of her "nu."

We also crossed the border of her fever still being most likely only a viral infection. So we started an antibiotic. She hasn't been on one since February. That's a record for her. Hopefully it will work it's magic quickly and we will have our feisty little bug back. She has been a bit crabby, and just walks around saying "mama, mama, mama, mama." I didn't know that it would ever happen, but I could use a break from that word right now.

We planted a garden on Sunday as well. Jason worked all day Saturday and Sunday morning to till an area for it. Then Sunday after Abigail woke up from nap we planted everything. Abigail was a huge help. She was covered in dirt, wet, and ate numerous clumps of dirt as well as making a few attempts at some rocks. The child puts everything in her mouth, but even when it's gross she continues to put it in her mouth. Hopefully she will outgrow that soon, and before there are any really gross incidents.

Abigail with the hoe, post eating dirt...and a little snot.

Abigail and papa in front of the garden.

I think those are all of our update. Thanks again for all of your thoughts and prayers. Abigail's MRI has been rescheduled for early June, so we will let you know more about that after it happens.

Thank You!

I woke up Friday morning and almost immediately had tears running down my cheeks. I feel like we are speeding forward towards the inevitable. I have spent enough time with my daughter to know what that suspicious spot indicates. I have spent enough time educating myself to know the basics of what we will find out from the MRI. And no matter how hard I fight it each day passes and draws us closer to the day where things will be known.
I'm certain all of you have heard that knowledge is power. I have felt this way since finding out about NF. The doctor may not have noticed the spot on Abigail until it got larger or caused more issues. If I hadn't read about NF I would not have known what it was either, and we wouldn't be able to (hopefully) get things started early.
However I have longed for the bliss of ignorance. I would like to not feel that spot every day as I put lotion on Abigail's back. I would like to think that the world is full of happy, wonderful, innocent things for my little girl; that I can protect her from the bad for a little while longer.
But in reality I have no control over anything. So instead I sat on the kitchen floor and wept last night. Jason sat next to me and hugged me. What are you supposed to do with the pain? It's heavier than lead in my soul. Sometimes I feel as if it will suffocate me. Nobody prepared me for how much this would hurt.
But it's just like God to bring beauty from ashes. What feels hard and sorrowful often has light shone on it through wonderful people. I have tried to write a few different times about the people who have touched me during the preparation for our fundraiser Friday. Words truly limit the wonder and beauty of God's people. However I want to try anyway.
First of all a guy who goes to our church, who in essence, doesn't really know us, has helped us with a web page. He gave up his time to help, and for that I am grateful. Another friend whom we knew from college also chatted with me over a few nights to try to help us with it. So to you Seth and Bob, thank you.
Next, the businesses who have given have truly been surprising to me. Not because they gave, but because of what they gave. I had been asking for something small (like five dollar gift certificates) and got nothing worth less than $20. So to Scotty's Brew house, Player's Club golf course, Ink Solutions, Cooper Tires, and Artist Within, thank you.
The next man I will mention I can not thank by name. He has asked to remain anonymous. However one of the businesses locally read the article about Abigail. The woman had a friend who had NF, and her husband is an artist. We ended up meeting her husband on an art walk. He was just this amazing, kind, and humble man. Him and his wife helped start the Indiana chapter of what is now The Children's Tumor Foundation, and were instrumental in getting an NF clinic at Riley. So those things alone have blessed Jason and I, as well as Abigail. However he also is doing something more that is the part that is anonymous. He loved on our daughter when we met him; went on about how beautiful she is. So for that, wonderful new friend, thank you.
The next family was the one we got to spend a few hours with this evening. We had this awesome couple that we used to be in small group with. They own a peach farm, and he does pottery; beautiful pottery. I had contacted him to see if he would donate a door prize. I expected only a mug or two to raffle off. I got exceedingly more. Not only did he give to large vases, worth enough to meet our fundraiser goal we have left, we got to spend time with him and his lovely wife. Two hours out in the country watching him throw pottery, listening to conversation about pottery, peaches, his Airstream (so cool) and lots of other fun things. On the drive home we talked about how refreshing the time was.
So another new friend who's blog is here does photography. She is donating a beautiful photo of her and her daughter's tiny infant hands, from the days at the beginning of life, where they didn't know if their little Lia would make it. So for your generosity to our family, and new found friendship, bonding over the joys and pains of raising our special girlies, thank you Rhys (and Dave and Zaya, and Lia).
And lastly, to those of you who have already donated monetarily, some whom I don't know, some I do. To all of you, your generosity has helped me see the beauty of the design of community. God did not intend for us to walk through life alone. If it were just Jason, Abigail, and me, I would quickly lose all hope. However God has surrounded us with people who are amazing and remind me that I am not walking alone. Although there is still a large amount of sorrow and uncertainty; the love from you all is truly overwhelming. Thank you.

The greatest of these is love,

May 6

Abigail one year ago...snoozing on her mama.

There is this perfect spot on my left shoulder. Abigail's head fits in it just right. She turns her head away from my face, puts that right thumbie in her mouth, raps her left arm around my neck, and her legs around my middle. When she is there; everything feels peaceful. It's the spot she goes to after she falls down and needs comforted. It's where she rest when she's sleepy, or when I ask her to snuggle me. It is the place that temporarily erases the pain of life; whether it be a skinned knee or an aching soul.
I need this place today. I don't know if it's like this for everyone, but today is a weird day for me. Yesterday I turned 28. It was a good birthday filled with a husband and daughter who love me as well as our great friends Eric and Brenda. I felt special and very loved. I wasn't lavished with gifts or attention. I was just reminded through cards and words that I am loved. The whole day though I could feel it. I knew it would end and that today would come.
A year ago today we sat in Dr. Weaver's office at Riley outpatient center. We had asked for the appointment to clear Abigail of an lingering issues from a rough start. We had wanted the appointment to be certain that we didn't have more lying ahead. We expected to hear "she's healthy" or possibly "here are some things to keep an eye out for." That was not what we heard.
Abigail had these birthmarks. She had two fairly large ones at birth, and it seemed like she just kept getting more. Jason and I had discussed it, but figured we just hadn't noticed them before, or possibly it was something more common in dark skin since we are both fair. It was never worrisome to us. But when the doctor took out his pen and started counting them I wondered if we had missed something. He counted 28. They were called cafe au lait spots and were indicative of a genetic disorder called fibro something. I couldn't get it to stay in my brain.
He was the resident. He left for a few minutes and the doctor came back in with him. He too counted the spots and looked her over. They asked if they could bring in some medical students. They also looked over Abigail and talked about these spots. After everyone was done examining her the resident stayed with us and shared some more about this big long word everyone kept saying.
He said that most people who have it only have mild cases. Then he went on and on about learning disabilities, and a list of other things. I kept trying to listen, but could not concentrate or retain anything he was saying. The only word that I kept hearing was tumors. It causes tumors. He wrote down the label that had been given to what our daughter most likely had as well as a couple of websites that were good and informative. He warned us that if we looked it up online we would find worst case scenario and see horrible pictures.
We decided to go out to eat on the way home. We needed something fun, happy, and normal to round out the sucker punch we had just been given. I don't remember where we ate. I really don't remember much of the drive home. We kept trying to talk about it, and trying to remember the word he had said.
It's odd how we all react so differently. Most people who's children have this either struggle with guilt because they passed the gene on, or guilt because they wonder what they did to cause this genetic mutation (which in reality they did absolutely nothing). I couldn't think either of those things because Abigail did not grow in my womb. She had no genetic material from Jason or I. Instead I focused on how could I have missed all of those spots? If I had noticed them earlier would we have known earlier. I came home and looked in my "What to expect the First Year" book. I remembered reading about birthmarks in it. I found the page and read that if your child has more than 5 cafe au lait spots you should mention it to your doctor. Nothing about why. No pictures of what a cafe au lait spot looks like. Not even a description that a cafe au lait spot is the color of coffee and milk. Just that you should mention it.
I for the most part have gotten over the fact that we missed her spots being an issue. Nothing would actually have changed from knowing earlier. We would still be exactly where we are at this moment.
Interestingly May is national NF awareness month. It will always be the month where NF is in my head more than usual. It is the month we first heard about NF. Abigail will have her second MRI this month. Hopefully we will be doing annual fundraisers in May.
Even as Abigail gets older I will have a spot for her on my left shoulder. A spot where she can snuggle in and forget about skinned knees, children who tease, and the pain of the world. A spot where I can forget about NF, the worry of what lies ahead, and the fear of losing my little bug. A spot that makes May 6th feel like just another day.





Snuggling up with my little bug,

Tea Party

When I was a little girl I remember my mom having tea parties with us. Not just the pretend kind, but actually making tea and having cookies with it. It's a fond memory. It was also something that I couldn't wait to do with my own little girl. Last year for Christmas grandma got Abigail a tea set. It has sat in her closet in the box waiting patiently until she was old enough. About a month ago I took it out of the box and put it in her bedroom. She plays with it sometimes, but mostly just loves the "poons." Tonight I decided I would initiate our first real tea party. Mama and Abigail got "dressed up" and invited Papa to her bedroom to partake of sugar cookies and tea. The pictures are what ensued.

Mama pouring the tea.

Abigail stirring her tea.

Papa (being silly) drinking his tea.

Abigail drinking her tea with her "poon."

She finally decided to try the tea...mmmmm!

Abigail helped Mama rinse the dishes afterwards.

So as we go through the next couple of weeks there are a couple of events coming up. First is Abigail's MRI. It isn't on my mind a whole lot right now, but is neatly tucked away behind other thoughts as to not send me into a panic. The second event though is one I have mentioned here and there but have not actually given full attention too yet.

On Friday May 14th we are having a Tea Party to benefit the Children's Tumor Foundation in honor of Abigail. It will be at a local coffee shop called Vecino's. It is located downtown Muncie IN on the corner of Walnut and Main. It will be from 7-9 p.m. There will be live music (with a small cover charge) as well as door prizes you can purchase raffle tickets for. We have had some really great donations, so if you are in the area, check it out! If you are facebook you can look the event up, there are some more specific listings of door prizes.

Maybe we will see some of you there,

Nothing for granted

Abigail laying on the pillow some kind stranger gave us after they read her story in the paper.

I need to pick up toys, load the dishwasher, and read a chapter for tonight's book study. However I also need to write, because I have a few things in my head and heart that need to come out before I can think clearly again.
I HATE having to call offices, insurance people, and anything to due with Abigail really. Most of the time I have had positive experiences, but the bad ones have been big enough that calling often makes me feel a bit anxious. Yesterday morning I had to call the doctors office to ask a question. I wasn't sure whether or not they needed to see Abigail. When I called I got the woman who apparently thought I was an idiot and curtly told me "we can't just diagnose her over the phone." I stayed calm and told her I didn't want a diagnoses I wanted to know if the doctor thought she needed to come in or not.
Abigail is also on a state run insurance program for children with special needs. Everyone I have ever talked to there has been beyond kind. I feel like if I'm having a hard day I could probably just call and someone there would listen and cry with me (I have never done this). So yesterday when I had to call with a question about paperwork I was a little taken back out how rude and unkind the woman was. I told her I had a question and before I could ask she started telling me about due dates and how it was my responsibility to make sure things got in on time. They aren't even late. I don't know why she found the need to give me a lecture. I really wanted to tell her what the past week has been like for me and ask her if she thought she could muster up some kindness for a few minutes. I didn't though.
So this morning I took the paperwork to the department of family services to fax it. I had just left a business giving a donation for the upcoming fundraiser we are doing. I was feeling pretty good really. After all the papers got faxed we were walking out and an older woman stopped us. She wanted to tell me her story, and I felt impatient because Abigail had a dentist appointment. I smiled politely as she kissed Abigail's hand and told me her daughter had lazy eye and had gotten glasses at six months old. She then went on to tell me that her daughter had passed away at fourteen. The tears were streaming down her cheeks as she told me that it had been hell losing her, and the anniversary was coming up. She then went on to talk about no matter how much they whine, cry through teething, and act up that I should enjoy it all. She looked at me for a few seconds, and I told her that we don't take any minute we have with her for granted. We think she is wonderful, and know that we aren't always promised a future. I thought she was going to follow me to the car.
After I buckled Abigail in I sat there for a few seconds attempting to not cry before we moved on to our next appointment. The past week I have been constantly reminded of how uncertain our future is. I hope that I am never on the side that this wonderful woman is, but I hope even more that no matter where life leads us I will remember that God has gifted us with each day and to be thankful for it.



To end a little lighter our dentist appointment went wonderful. I'm sure I've mentioned it before, but we go to a pediatric dentist and we LOVE him. Dr. Jeff is funny, great with kiddos, and just always has something encouraging to say. Abigail usually cries through her teeth getting cleaned, but as soon as it's over she sits up and waves at everyone smiling really big. Then one of the hygienist takes her hand and allows her to pick out 20 toys and all of the other hygienist tell her how cute she is as she walks by. Today though Dr. Jeff told us that her teeth were very healthy and that he wished some of his other patients did as well taking care of their teeth as we do. I wanted to grab the man and hug him. I didn't expect anything horrible from a dentist appointment, but our last few visits to doctors have wielded bad news. This felt like a win, and even if it's a small win, we'll take it!





Rejoicing in the day the Lord has made,