Thursday, March 31, 2011

Short and sweet.

All right I have FINALLY got numbers (estimates) from the hospital that include how much we need to show up with. We are about 3000 short from what we need. So if you could continue to help spread the word by posting our fundraiser on your blog, facebook, twitter, sending out an e-mail or anything else you can think of we would appreciate it! http://funds.gofundme.com/2722w Thanks a million.

Monday, March 28, 2011

Jesus heals...

'When evening came, after the sun had set, the began bringing to Him ALL who were ill and those who were demon-possessed. And the whole city had gathered at the door. And he healed MANY who were ill with various diseases, and cast out MANY demons...' Mark 1:32-34a (emphasis added are mine) I am a woman who wrestles through what I believe about God often. I never want to become complacent in my beliefs, or end up in a place where I believe I am right about everything. I want to be challenged and to know where in the Bible I draw my beliefs from. So today as I sat down to read Mark 1 I was hoping to get some new and fresh light shed on who Jesus is [to me]. And this, my friends, is what stuck out to me. I have written a few different times about my thoughts on healing, and the movement of Christians that believe that lack of healing is equal to a lack of faith. Any time I come across one of these people I always know what verses they will use to back up their belief, and I know what examples I will use to counter it (in my head). But today after reading that all who were sick came to Jesus and yet only 'many' were healed I couldn't help but rest in the fact once again that God doesn't always heal. I even looked up the verses in about 5 different versions of the Bible to see if they were all the same. They were. Thankful to serve a God who is good, even when He doesn't heal,

Sunday, March 27, 2011

Things that move me.

I have a tendency to remember everything that people give us. Jason never ceases to be amazed at the fact that I can pull something out of our cabinets, out of my closet, or even a gift that Abigail had gotten and tell him who gave it to us and when. I just am so thankful for so many things that their origins stick in my head. Anyway, for that reason as people have been donating, the generosity of it all sticks in my head. It's not because of the amount people give so much, as knowing that it came from their heart. Whether it was anonymous, sending out e-mails to everyone, or making a donation, my head is logging all of the generosity and running out of words of thanks and gratitude because there has been so much. I haven't mentioned this for a while, but my husband and I live in the inner city and are part of a ministry here. The short of it is that a few families have intentionally relocated to living in a part of the city that is abandoned by most people with any sort of resources. We have taken ourselves from the outside saying we know how to fix 'their' problems to living here and saying these are OUR problems and issues as well. We have been part of this group for a little over six years now, and lived here for just a little under six years. We have gotten to know some amazing families, as well as kiddos. Some of the families we have gotten to know have moved away and we have never seen them again. It's one of the hardest things about living here is pouring into people and loving them just to have to start all over again. But every now and then there is a family that sticks it out and you get to see the amazing parents walk through life as well as the transformations of these awesome kiddos. In January of 2005 we had a pretty bad ice storm in Indiana. We were without electricity, and obviously it was pretty cold. Jason and I had just started to look at houses in the neighborhood we live in, but were still living in our first apartment. When the storm hit we drove in to soak up the warmth of friends who still had electricity and help if we could. This was when I met Miss Tasha and her kiddos. I don't know that she remembers it that vividly, but I do. She had three daughters and a son at home. And of course being a middle child her middle girly found a special place in my heart that she hasn't ever left. Lanaejah was seven that year. She turned 13 today and is growing up to be an exceptional young woman. She is beautiful, funny, and a talented singer. I see so much great stuff in that girl that I can't help but be proud for her and her mom. But this morning I felt both pride and humility as this young lady stepped up and gave from her heart. Lanaejah had a birthday party yesterday at a local park. She charged her friends to get into the party. And if you haven't been able to figure it out yet, she gave all the money to us for Abigail's surgery. It was a lot of money for a thirteen year old to just happily hand over without expecting anything in return. And so in a week as we hand checks over to the surgeon and hospital, and as we rejoice over our daughter being given this chance, I will only be able to picture this beautiful girl handing me an envelope full of money she raised. Thank you Lanaejah for being such a wonderful young lady. You are beautiful on the outside, but your heart is where your true beauty lies. I have loved watching you grow, and am grateful I get the opportunity to continue to watch you grow. God is doing amazing things through you! With all our love and gratitude,

Tuesday, March 22, 2011

The future of plexiform neurofibromas.

The last few days have had me close to calling and cancelling the surgery just because I will never have clear cut answers about what is best. But instead I do my best to run forward and not listen to the voices around who are questioning, questioning, questioning. I really just want what is best for my daughter. I want to know I have done all that I can to give her a fair shot at the future.
I think one of the hardest things for others is that right now if you look at Abigail you can't tell. I can tell, Jason can tell, her physcial therapist and doctors can tell, but you couldn't. And for that reason people question what we are doing. But what they are even more blind to is the future. The disorder, the tumor, the hemihpertophy, they are all progressive.
They will all likely continue down a path that leads towards the destruction of my daughter's ability to walk, dance, climb, and be a kid. So I have decided to include a picture for you all. It is a picture of what the future could hold for Abigail if we don't do anything about her tumor. It is a picture that reminds me why even with all the questions and doubts, we are doing the right thing. Because although some people's tumors don't grow quite this big, they can. And there is no way to know if this would be the case for Abigail or not. If I waited to see it could be too late to do anything about it. So I'm going to do what I can to prevent this for my daughter.

Thanks to all of you who are praying, giving, and enouraging us along this walk. We are doing our best to be open, and answer all the questions and e-mails we are getting. I am hoping this post will help people to understand why it is so important for us to do things now.

Monday, March 21, 2011

Thank you.

Now to him who is able to do immeasurably more than we ask or imagine, according to his power that is at work within us, to him be the glory in the church and in Christ Jesus throughout all generations, for ever and ever. Amen! Ephesians 3:20-22

My friends, I can not begin to describe in words what this past week has been like. I tried on Sunday when I shared at church what has been going on. It came out in broken sobs though. I feel like in the past two weeks we have both been taken to the brink of hell wondering if we were going to lose our daughter, and to the brink of heaven being surrounded by those who love Christ and love us.
I'm not certain I have ever felt more loved in all of my life though. We have had meals and gift cards given. People calling to see how we are and if we need anything. Offers of places to stay in Chicago. There have been people who have blogged about Abigail to get the word out locally, in other states, and even in other countries. Our friends have posted, re-posted, and keep re-posting her fundraiser. And all of these things are accompanied with kind words about our daughter and our family. I would be interested to know just how many people are lifting us up before the throne. Just thinking about it all makes me both smile and cry all at the same time.
And the money feels like it is starting to pour in. Last week I felt almost hopeless when the figure we needed to end with went higher. I was overwhelmed with numbers and the impossibility of it all. But I serve a God who can do immeasurably more than I could ask or imagine. And I found myself confessing and apologizing to God for my doubt. I had a hard time believing that we would be able to get what we needed before we drove to Chicago.
Because His power is at work in people though, I have seen the numbers rise faster than I could ever have imagined. I don't even know how to thank people. A card with 'thank you' written in it feels not enough. How do you thank people for bringing about hope in a new and beautiful way? How do you thank people for being able to watch your child continue to walk, dance, play at the park, and hopefully some day run? I am certain that words are limiting in this situation.
None the less. Thank you. Thank you for giving of your time, your facebook pages, your tweets, your blogs, and your financial resources. I am overwhelmed with the graciousness of you all. I must indeed by one of the most blessed women alive to have as many amazing people in my life as I do.

Thank you,

Saturday, March 19, 2011

A recap and a winner.

The last few weeks have been a whirlwind of fear, appointments, test, e-mails, and phone calls. So yesterday when I finally did my 'it's all over sigh' my body began screaming out. Every inch of my neck and back reminded me of the tension I have been holding on to for two weeks now. My head began throbbing, and suddenly I found myself super annoyed with Abigail.
But after a good night of sleep last night (for everyone) today seems brighter. There is still a lot going on. I still can get stressed quickly if I let myself dwell on any one fact too long. But over all, I feel like we just might make it through the next few weeks and still be okay.
So almost two weeks ago Abigail had an MRI on a Monday, had to buy four new tires after one blew, got results that she did not have a tumor in her neck, ended up in the e.r. when her tumor grew overnight, found it it both grew some and was infected, did a sleep study on Tuesday night, found out we will owe more for her surgery than we were originally told by the hospital, heard creatures in our attic (this is not the first time we have had issues), found out Abigail has mild obstructive sleep apnea, and had to pay to have our washing machine fixed. *Sigh* What a long two weeks it has been.
So now we just need to continue to push hard to have more raised before we go to Chicago. We have enough to pay the surgeon up front, and found out we have to have some of the hospital up front (we don't know how much yet). However the surgeon is 7,000. So we definitely need more than we have right now when we show up in a little over two weeks. Thanks to all of you who are adding our widget to your page, posting things on facebook, and sharing Abigail's story. You are all the reason we have gotten so much given to us for her surgery already.
And last, but not least, the winner of the awesome rice bag as drawn by random.org is...commenter #2 Stephanie. :) I need your address to send your prize. Thanks everyone who entered. I like giving stuff away. Maybe someday soon I'll make something fun and summery to give away as well!!!

Enjoying a warm and relaxing weekend,

Thursday, March 17, 2011

Abigailisms.

I'll start with the not great thing, and move on to things that will make you laugh. We talked to the hospital today and there had been some miscommunication. The surgery is more than we originally thought it was going to be. So if you look over at the bar on the side the numbers have changed for that reason.

Moving on. Miss Abigail. What can we say. The girl is hilarious. And as of late she seems to be getting funnier by the day. I shared a few post ago of her new family members. We consistently have pig and elephant, but making appearances with them are lion, hippo, monkey, cat, and dog. I'm certain as I buckle them in the car daily that my neighbors are watching and wondering if I'm on something trippy. But we don't want pig and elephant to get hurt in a car accident (even if they aren't in a car seat, and they share a seat belt).
Abigail is also in love with our car. Why? I have no idea. It's a four door Ford Taurus. It's blue. And it gets us safely from point A to point B. But if you asked Abigail about 'blue car' you might picture that we drove some sort of exotic car. When we go to get in the car (at home or elsewhere) she will regularly walk out and say, 'hi blue car. missed you.' She does this as she hugs, pats, and kisses it. Apparently she misses the car while it sits outside waiting on us. Such an affinity for inanimate objects. Once again, wonder what our neighbors thing.
Her other obsession, which I have also mentioned before is her Papa. It is getting bad. I'm not certain if it is age, the fact that Jason has been working crazy hours, or just Abigail. I can go to the store, buy her some sort of fun new cracker, come home and show it to her and she will say one of two things, 'Papa yub...(whatever that item is),' or 'Sank you Papa.' I will argue with her on the latter one. 'No sweetheart, Mama bought that for you. Mama got you those crackers because she thought you would love them.' 'No. Papa goyem. Sank you Papa.' URGHHHHH!!!
However the one that cracked me up the most was when she had her sleep study. When Papa kisses Abigail goodnight, since day one, he give her three kisses and says, 'Papa loves you, Mama loves you, and Jesus loves you most.' So since he wasn't there for the sleep study I told her. She stopped sucking her thumb, looked up at me and said, 'No, Papa yubs me most.' I argued that one too, but she is now insistent that Papa loves her the most.
And lastly I will leave you with a little video of Abigail pretending. She has a toy she got from McDonald's and it is singing in the 'microwave.' (Microwave is what she calls the microphone.) It was pretty cute (or I thought so). Enjoy!

video

Enjoying warmer weather,

Wednesday, March 16, 2011

Random Tidbits.

There is a lot going on in the hustle and bustle of moving surgery up. And for that reason I am even more scattered than usual. I'm trying to call 100 people and places about 100 different things. I feel lucky to remember to eat right now. Anyway...

My first train of thought is somewhat theological. When I was a new Christian some years ago I remember people debating that religion and God were for people who needed a crutch. I always got so defensive, and most likely partook in some friendly debate with some of them.
Well for the last month all I have thought was 'heck yeah I need a crutch.' Life often leaves us crippled. I mean sometimes a crutch doesn't even cut it, I need a wheelchair. I can not, nor do I want to, walk through all of the chaos of this world without my faith. So next time you hear someone say that you can let them know that the world is a rough place, and most of us need a crutch to make it through. And I can't think of any other crutch besides Christ.

Secondly Abigail had a sleep study last night. We were offered a slot Monday afternoon for Tuesday night and I said sure. I got perhaps two hours of sleep. Abigail slept for the whole study (we skipped nap and made her walk laps at the mall). And praise the Lord, she had at least three episodes that I know of like we see at home. And when she did machines started doing funny beeping things and a nurse would come in. So we won't have results for at least a week, but I feel confident that we will finally be getting some answers as to why she isn't sleeping well anymore!

The third thing is that my little Papa's girl has been cracking me up lately, and I plan to do a whole post soon with things she has said/done that make us laugh hard. Perhaps they are really funny, or maybe only the grandparents will appreciate it. But now whether you hate or love things like that you at least have a heads up.

And last, but not least, surgery and fundraising. Okay first of all the money has been coming in so quickly that I can't do anything but stand here in awe and praise God. We found out yesterday that we have to have all of the money up front for the surgeon, but can make payments at the hospital (or at least this is what I'm understanding so far). Anyway, as of today we have enough money to pay the surgeon up front. This is super comforting to know, and we have a few weeks left.
We have been offered places to stay. We will hopefully get to see some friends who just adopted a really sweet little guy that I got to meet tonight. And on some incredibly miraculous line up of events, Jason's parents will be in Chicago that week for a conference for his dad, and then a few days of fun time. So it's looking like we may be able to do something fun with them even!!

So there are all of my new things I needed to tell you. Don't forget, if you haven't already, to head over and enter my giveaway that ends Saturday. And if you aren't interested in that at least check out some of the cool products that are for sale with some or all of the proceeds benefiting Abigail's surgery.

Feeling grateful for people around who know us, and don't know us, loving our daughter,

Monday, March 14, 2011

The word is...

Our appointment today went. That's it, it went. It was with a developmental pediatrician. She is phenomenal. We didn't walk out knowing more, but with two more test scheduled and the advice to do surgery on her leg as soon as possible.
Soooooooo....we now have until April 5 to raise 10,000 more dollars. We were planning an actual event, that will not be happening at this point. So we need help getting the word out.
And as far as insurance goes I'll do my best to break it down. When the surgery was considered elective in the beginning we decided to go with the surgeon we wanted because he was the best, and it wasn't going to be covered either way. And now, as a result of the rapid growth and high risk of malignancy we are sticking with the best, therefore it still won't be covered. And because it's out of state the hospital won't be covered either.
I am not outraged by this. I am mostly grateful that she has insurance that has covered everything else thus far. Fighting with them would just mean pushing the surgery back and that's not an option.
If you could blog, put her widget on your blog, or post her fundraiser on facebook/twitter we would be extremely grateful. (You can feel free to donate as well, but right now it feels like getting the word out will help that).

Thanks for reading my crazy rantings. :)

Go here to donate, or to get the address to repost.

Sunday, March 13, 2011

Oh my goodness!

First of all, NOBODY has entered to win anything. Seriously, you don't like free things sent to your home? You don't have to try to act normal when you see the UPS man pull up even though you already know what he's bringing you? PLEASE enter the giveaway. It's not so hard to do! Go here and leave me a comment or five so you too can win.

And now back to the title. Oh my goodness. I feel like some people out there in the 'I follow your blog' land must think we are making things up. Every few weeks I have to tell you about some crazy event that happened generally involving our daughter and her crazy medical shenanigans. But they are all real. I haven't even changed any names to protect the innocent. And I have yet another story for you.
Friday night I gave Abigail a bath. This never happens. She gets bathed regularly, but it has (for some unknown reason) been a Papa thing for the last year or so. I sit on the couch and play on facebook and listen to the giggles and squeals. I occasionally peak in on them to see what could possibly be that funny.
I have digressed. Anyway, I gave her a bath and put lotion on her and got her ready for bed. Whenever I put lotion on her I always rub the area where her tumor is for a little longer than normal to see if I can feel any changes. I know that it has grown over the last few months, but still nothing too crazy. I did just this on Friday, put Abigail to bed and went on with an awesome girls night while my husband worked hard somewhere doing something.
The next morning was a normal Saturday morning. Around 10:15 I got the lotion out and was getting Abigail dressed. When I took her pajamas off I could visibly see her tumor in her leg. I have always been able to feel it, but it has never been 'noticeable' unless you really know what you are looking for, but this was a disturbing amount of growth that had occurred between 7 p.m. one night and 10 a.m. the next morning.
I called Jason over to look at it just to be certain I wasn't overreacting. Nope. He said it looked 3-4 times bigger than it had the day before. I called to leave a message for the neurologist on call. I felt so much better when the woman who took the message asked me to describe what was going on and then responded with 'Oh my gosh!'
Got the call back and discussed for a few minutes before deciding she should be seen. So Abigail and Mama loaded up in the car (Papa had to work, he's had really weird hours of late) and drove to Indy. We decided that since it was a specific NF issue, and none of the E.R. staff we have had locally have been very familiar with it, that it would be well worth the trip.
So a few hours in the E.R., confusion over some things, and finally a page to HER neurologist later we have....no answers! Okay, we have three possibilities really and are trying to figure out what to do from here. The first possibility (and the one they are treating her for right now) is an infection in the tumor. Although it's rare it can happen I guess. So she is on an intense round of antibiotics. And while it was red and warm yesterday (a sign of infection) it is not today. However the size of it has not gone down. The other two possibilities are that it really is growing that crazy fast. And that it is growing that crazy fast do to malignant changes in it.
We are still trying to decide how we want to proceed. So once again we could use some prayers for decision making, Abigail's leg, and perhaps some extra grace to navigate what lies ahead. It is hard not knowing what is best, and where to go from here, but also knowing that we have a small being counting on us to figure things out.

Taking a sabbath day's rest,
read

Friday, March 11, 2011

Another Giveaway!

All right as you may already know my friend Jill over at Jillian Raye designs has an awesome ring she is selling, with proceeds going to Abigail's surgery fund. I know she has gotten some orders. I received one of these cute rings, and I got to give one away! If you haven't ordered one yet you definitely should. It is a steal for only seven dollars, and it help out the cute kid pictured above.
After this I received an e-mail from an awesome friend who sells thirtyone items. If you have never seen them you should check them out! They are Really cute. I'm thinking I may have to use some Christmas money to get myself something. ;) Anyway she is hosting a party and if you order through it part of the proceeds will go to Abigail's surgery fund. Just click on the words above that say 'hosting a party,' go to the right hand side of the page and click on 'my events' and it will come up with am event titled 'Abigail's fundraiser. Click on the 'shop now' link and anything you purchase through this will help to benefit Abigail's surgery.

Lots of rice bags.

A big one and Abigail's little one (she can make either size).
And lastly (as well as the giveaway part) we have another amazing friend (do you see the theme in our life with friends) who makes rice bags. They are material bags filled with rice (with a removable and washable outside cover) that you heat for a few minutes in the microwave, or keep in the freezer. They are great for neck pain (I have one on my neck as I type), cramps, kids boo-boos, and we use a frozen one to help with Abigail's tumor itchies. Our friend sells them for $10 (plus $6 shipping in the U.S) and is giving all of the money to Abigail's surgery fund! She has also donated one for me to giveaway to some lucky and awesome reader!
The very one someone will win!!!
So you have until next Saturday (whenever I get around to it during the day) to do the following to enter (leave a separate comment for each one):
1.Link to this giveaway on your blog or facebook and then tell me you did.
2.Tell me something about one of your awesome friends.
3.Go to http://www.ctf.org/ and tell me something you learned (or you could cheat by going to the what is neurofibromatosis link at the top).
4.Tell me how long you have been reading my blog (this one is for all of those lurkers I know exist and never leave comments).
5.E-mail me your favorite recipe and leave a comment with the name of it (because I'm tired of our rotation).

On Saturday I will go to random.org and pick a winner. If you don't win, or just want to buy one anyway (because they are awesome) you can send me an e-mail at atohelet@gmail.com and I will get you in touch with our friend Susan.

Loving getting to give things away,




Thursday, March 10, 2011

Funny girl.


(In her Purdue cheerleading outfit, getting ready to 'watchupudue' with Papa.)

Last night it was getting close to bedtime and I said what I always say to Abigail, 'You know what we need to do?' I usually follow it up with 'pick up toys.' But I decided to steal a few moments with a little girl who was getting sleepy. So I followed with, 'We need to snuggle.'
She put her thumb in her mouth and laid against my chest and quietly gave me a mmmmhmmmm. I then went through my guess what game for a few minutes with her. It goes something like this:
Mama, 'Guess what? Mama loves you.' (Abigail giggles a little). 'Guess what else? Mama thinks you're beautiful.' (Abigail sits up and looks at me). 'Guess what else? Papa loves you.' I go on and on through people that love her and things I like about her until she responds with this.
Abigail, 'Geuss whayelse? I lub Mamal. And guess whaelse? I lob Gwandpa.' ALWAYS it's grandma and grandpa. Never is it Mama. But it still makes me smile every time.
As I was holding her last night and we were giggling together It was another one of those moments where I could feel time slipping through my fingers. I knew the day would come when she wouldn't say yes to me saying we need to snuggle. So I savored it, and stored it away for when the day comes that I needed that memory.
Lately, Abigail seems to be doing new big girl things by the day. She can now take herself potty ('Mama goyout pwease.') She can put her coat on by herself. She is starting to put her shirts and pants on (mostly) by herself. She can get her socks on by herself. It feels like all of these things are exciting and sorrowful all at the same time. And so I rejoice with her at all the things she is capable of, and mourn my baby growing up so quickly.
At the exact same time though I can't help but be both proud and in awe of how smart she is. I listen to her count, identify letters and tell me the sounds they make, identify numbers, sing along to songs, say Bible verses, and so many other things and am dumbfounded at her memory and intelligence.
I also am blown away by her level of creativity. I know all kids pretend, and that, she does. She mimics whatever her Papa or I are doing all the way from cooking to how she takes care of her babies.
But my very favorite new thing she has acquired (we have no idea where they came from) are her four friends pig, hippo, elephant, and lion. They are imaginary. They go most places with us. Papa had to run upstairs last night to get them before we left. They need their seat belts on. They join us while we eat. I have always been sort of fascinated by children who have imaginary friends. How do they come up with them? Who gave them the idea to make up someone to play with? I don't have answers to those questions, but far be it for me to crush a little girls imagination. So I put lion in my pocket if she asks me to. And sure I look silly buckling an empty seat belt, but just because I don't see her friends doesn't mean they aren't there.
(Playing dress up.)
Each new day brings about loads of fun and laughter (along with frustrations sometimes) that make being Abigail's parent the best job in the world.



Enjoying our funny girl,

Monday, March 7, 2011

...and a win!

So I hope you all enjoyed the post by my handsome and eloquent speaking husband. He has great things to say most of the time...it's just getting him to talk that's the hard part.
I'll start with the journey to Indy last night. Like most larger cities Indy has a loop around it. I was on it last night on my way to our friend's house to stay the night when I started hearing a funny noise. I wondered for about half a second what that noise is before my tire blew. I pulled over to the side of the road trying to figure out exactly how to play out the next step.
We don't have a cell phone. I'm not close enough to an exit to either drive on the shoulder or walk with Abigail. And it's dark. I know how to change a tire but am feeling less than confident in that ability.
I decided to get out and begin the process in hopes that a nice police officer would happen along and at very least stop to help me feel safer as the trucks made the car shake while they passed. I tried to push the visions our of my head of being hit by another car and dying while my daughter sat in her car seat alone not knowing what was going on.
Forty five minutes later I felt pretty awesome as I got back in the car and drove the rest of the way to our friend's house. I was a little shocked that in the 45 minutes it took me to change the tire not a single police officer stopped to make sure everything was okay. None the less everything was back under control.
We hung out with our friend a little and went to bed to awaken early. And as always one of the first things Abigail said was 'hungwy Mama.' And she continued to say it for the next two hours until they put her under for the MRI.
I was doing much better today than I ever have for this procedure. I actually slept in the waiting room instead of fretting about whether she was doing okay and what they would find. We went and ate breakfast afterwards and drove home (very slowly due to the spare tire) for a pretty normal afternoon.
When Jason got home I had him call and attempt to get the results even though same day might be a little much to ask. But a little after five the phone rang and it was our doctor's office. I made Jason answer it because I wasn't sure I would hold it together if the words 'tumor' and 'neck' were made in reference to my daughter.
Turns out it is a pretty enlarged lymph node. We aren't sure why it's enlarged, and it needs some further monitoring. However, when you spend a week wondering if things are headed in the worst possible direction swollen lymph nodes seem completely doable.
So we are rejoicing. This has been by far the most fearful I have ever been about Abigail's NF and what her future looks like. It brought about some great conversations between Jason and I. It, as usual, left me in the place where all I can do is put my hope in the One who breathes life into my little bug's body.
So if you have a few minutes make sure you do a little dance at your house for the good news we received! And I promise you that my next post will be full of pictures or videos of the little girl we love!
Rejoicing,

Thursday, March 3, 2011

Where to begin...?

I've never written a blog before, so bear with me. Andrea has asked me to put my thoughts out here on the inter-highway. I've been a little resistant, maybe because I'm SOOOO introverted and guarded with my emotions. Nevertheless, I will do this for her...so she doesn't feel alone. I know it means a ton to her when others who follow this blog understand where she's coming from, but that can only take her so far. We talk often, but sometimes she has to pull teeth to get me to open up. So, I have shared more with her as of late, but not with too many outside of our home. So, here goes....

I love my daughter. I love the way she makes our family more complete than before she arrived. I wasn't sure what to expect when in the hospital waiting for her to be born, but from the moment I saw her (not breathing and all...) she had captivated me. She has always kindof been a papa's girl. I like that. A LOT. I guess that may come from spending all of her days with mama at hand, and just a few hours with me in the evenings, but I'll take it. I love the way she squeals when I get home, like she's just unwrapped the greatest gift on Earth. The irony though, is that Abigail is that gift for us.

Our days are so full of joy, laughter, song and dance. Abigail has taught us how to love and to be loved. I've never met anyone with such abounding love to give so freely as she does...always expecting nothing in return. Don't get me wrong though, our days aren't all full of rainbows and roses. Some of them are ROUGH! I tend to let things roll off and keep going (or I like to think so). It's probably more a case that I just absorb them and have become very adept at cramming it way down inside. But this blog, or the story at large, isn't really about me...or Abigail. It's about Jesus Christ.

I never question His goodness. EVER. I know that this world is screwed up and that terrible things happen. Our daughter has this NF that has created so many issues from day one, both great and small. Abigail now has two tumors (MRI at 6:30 tomorrow morning to look into the most recent one, which happens to be in her neck). Insurance won't cover surgery. It's expensive. All that aside, my mind does go to a place of fear...

Fear that this is the beginning of the end. That Abigail will die VERY EARLY. That at her age and having two plexis does not bode well statistically. That there will come a day when Andrea and I wake up to an empty bedroom across the hall. That I will come home from work and not be greeted by an overjoyed little girl who can't wait to read "dopted you" or to "watch-uh pudue". That I will not have an eager partner to play her "itar" while I play my guitar. That I will lose the capacity to laugh and to love with such a richness that I've never known before. That it will all be painful for her.

But even in these moments, I know that Jesus IS GOOD. That He hasn't changed, and that her affliction is not a result of our sin or hers or even her birth mom's. I know that no matter what happens, He will be glorified by her life and death, regardless of how brief or long, how painful or pleasant. I will continue to place my hope in Him. If I can't do that, what else is there?? I sure don't want to be placing all my trust and hope in another man, who's just as messed up as I am. If I can't make Abigail all better, then neither can they. There is only One who can set her free (and isn't bound by statistics), and one day He will do just that. I don't know if that means He will bring healing in this life, or as she is welcomed Home.

My heart is heavy writing this. Partially because I try not to think much about all this if I can (Abigail makes this easier to do, as she knows and acts as though nothing is abnormal about her life), and part is because tonight I am alone. Andrea and Abigail are on their way to Indy to stay with a friend, so they'll be closer for the early morning MRI. But, unfortunately, it gives me a small glimpse of what it would be like without her...very quiet. And EMPTY.

I know we looked crazy while we literally waited on God to bring us a baby. We waited for three years, but look what He had in store! I hate to think about Abigail's mortality and how difficult it would be to move forward without her, but I wouldn't trade any of the time we've had with her to go back and do it over differently. These have been by far the BEST, most rewarding, and certainly the most refreshing 2 1/2 years of my life. I look forward to what the Lord has in store for years to come. I understand that some of you may think we look crazy for not freaking out and for trusting God, etc., especially if you may not love the Lord. But the way I see it, I hope you ALL would think we were crazy if we were NOT able to fully trust and hope in Him alone.

So, as we wait for the MRI and then results, please continue lifting us up in prayer. That the Lord would be a constant companion for Andrea in the moments where I am lacking. That He would continue to pour out His Spirit on Abigail, so she may continue to light up the world from the ground up. That we would be quick to recognize Christ's true nature manifest through our little one. That we would be more intentional about sharing Christ with Abigail, as we don't know the day or hour of her departure. That above all else, we would have the sweet praise of His name on our lips from the time we wake till the time we sleep.


Abigail's loving papa, overwhelmed by his loving Papa...

Tuesday, March 1, 2011

Come to Me, you who are weary and heavy laden.

I'm not sure where to begin this post. I had planned on writing tonight about some things Abigail has said and done lately that have left us in laughing heaps on the floor. The girl is hilarious. It's just that the days events are threatening to sweep me deep under in sorrow.
As a result of Abigail's NF as well as frequent weight fluctuations, we still do 'well checks' every six months. And tomorrow Abigail will be 2-1/2. So today we went in for a well check. I knew that her weight was down again as a result of being sick last month. I knew we would talk about her upcoming surgery. I planned on mentioning the new description of my eyebrow hurts mama' because it sounds like a headache description. But really there wasn't anything big on the radar for the day.
But here I sit, once again having the wind knocked out of me by an unexpected blow. Abigail had an ultrasound of her neck today. The doctor found a 'possible enlarged lymph node' which didn't really scare me at all. I wasn't sure why we were doing an ultrasound, but figured better safe than sorry.
And at 5:08 when the nurse called I realized that the doctor probably was trying not to alarm me because it was possible that it was an enlarged lymph node. But in the end it turned out to be an 'abnormal mass around 1.5 cm' in her neck. We will get a phone call tomorrow with the date and time of our daughter's next MRI.
There are hundreds of thoughts bouncing around my head. Perhaps it's because I know too much about NF, and not enough about what is in my daughter's neck. But truth be told a neck tumor is a hell of a lot scarier, and a much bigger deal than a leg tumor. Sure, I don't want my daughter's ability to walk and dance taken away, but more than that, I don't want her to be ability to breathe taken away.
I called a few people to ask for prayer and to let them know before we made it public on the world wide web. And my friend said something that truly resounded with where I have been the last few weeks. I am just overwhelmed and extremely tired. Not just physically, but the kind of tired that makes your soul long for the day that there will be no more pain, no more sorrow, and every tear will be wiped away.
My friend told me this vision she had on Sunday at church, of when the men stood next to Moses and held up his arms because he was too tired, and if he let them fall the Israelites would lose the war. She said she immediately looked up and saw me raising my hands in praise and felt like they needed held up. It is the best description of how I feel. It's not that I don't want to raise my hands, it's just that my arms are getting tired. Really tired. And I need a few people around me to help me keep them raised.
If you could hold us up in prayer right now we would greatly appreciate it. There are lots more things I could say, but it is all still pure speculation.

In need of the kind of rest that only my God can give,