Friday, July 31, 2009

Our long awaited child.

I'm feeling a little emotional this morning. Some days I am just like that. I didn't used to be. The birth of my daughter has definitely unleashed this part of me that I held inside for a long time. I laugh more, cry more, and just embrace whatever I am feeling that day.
Abigail has strep throat right now. She was really crabby yesterday; rightfully so. It made mommy and daddy really tired though, and thankful that today would be a new day. So this morning as I was watching Abigail crawl around on the floor, kiss her animals and books, and talking to the dog I was reminded of how blessed we are to have a child. The hard days are hard, but just a day.
For a few reasons I have been reflecting on our past year or so lately. My heart has been heavy in being reminded of the most selfless woman I have ever had the blessing of being friends with. I have been thinking about spending time with her during her pregnancy. Going to doctors appointments and McDonald's. Bonding over how much we love Big Macs and McDonald's cokes. Laughing together and loving the way her whole face lit up as she laughed. Listening to her tell stories was one of my favorite things. She could weave words together beautifully and I loved to listen. I loved hearing her talk about the baby in her womb and how active she was. I really loved how sassy she was and that she did not put up with people treating her poorly. I see her sometimes when my daughter laughs, or when she yells back when she hears someone outside yelling.
I can't help but be sad when I think about this woman as well. I watched her bring her baby into the world. I was there as the doctor and nurse treated her horribly because of her situation. I heard the side talk that she could not and thought about how sad it is that all she wanted was to do what she believed would be best for this little girl. They could not see how amazing she was. They didn't know her, nor did they want to. I also think about the day she said goodbye; standing in the NI CU with Jason and I staring at this beautiful little girl and crying. I remember thanking her about 50 times and hugging her over and over. After she walked out Jason and I cried for another 30 minutes or so and just held each other. We stared at this amazing gift we had bestowed to us and just thanked God over and over again.
Some how birth mothers have been painted as crack addicts and whores who don't care about anyone but themselves. I know this to be not true. The woman who carried our daughter chose to give life instead of abort, despite the social and physical ramifications. She took a few weeks to choose the family she thought would be best for her baby. She spent time with us and asked questions about us and our families. She told me how to do her hair, and take care of her skin. She told me about herself and gave me toys to give to the daughter we share. She tried to prepare me to be a mother to this baby. If she was any of the things people believed about birth mothers she would have done none of this.

There is a verse in 2 Corinthians 2:16 that says, "To one we are the smell of death, the the other, the fragrance of life." During the time when this was written when men would come back from war there would be a celebration in the streets. The people waiting would burn incense and make music and just celebrate. The soldiers returning would parade through the street showing of what they had plundered. At the back of this parade would be those brought back as captives. They would be shackled and chained walking through the same crowd. The soldiers in the front rejoicing, and the prisoners in the back are smelling the same things, hearing the same celebration, and seeing the same sights. However to the soldiers returning it is the smell of elation and life. To the prisoners in the back it is the smell of death.

We believe this is a good analogy of adoption. Seeing this baby for us was the celebration of life; the "smell" of the child we waited on for three years. To the other woman in this equation the "smell" means something else all together. It means walking away from the life she nourished for nine months. It means the child she felt move in her womb, and that kept her up at night would not be coming home with her. This thought moves me everyday to be kinder, more patient, and more loving with my daughter. Because our victory was another's pain.

Attempting to be the parents that another woman believed we could be,

Tuesday, July 28, 2009

Who's in control?

This control thing is becoming a theme to my life. It seems everyone around me is being affected by it as well. Let me start at the beginning...sort of.
My senior year of high school I became a Christian. I knew about God before that, but made the decision to live for Him then. Although I wouldn't have been able to identify it then, this was the beginning. I didn't know it but I had just given control to someone who knows way more than me and has my very best interest at heart. It sounds pretty and nice, but sometimes it feels horrible.
Lots of "small" things happened between then and the next part of my story, but nothing that affected me like these past few years have. Two weeks after we got married Jason had two dreams that we had a little girl and we named her Abigail. We looked it up and Abigail means father's joy. It was so beautiful that we said whenever we have a girl that's what we will name her. A few weeks after that he told me he felt like our first child would be adopted. About a year later we stopped preventing pregnancy. It didn't take long for us to realize we probably weren't going to get pregnant. I was talking to a friend who reminded me of Jason saying our first child would be adopted. Here begins the total surrender of control to God.
We spent the next few months praying about adoption. We felt strongly that God was telling us that he would bring us a baby. We were to have a home study and wait. So that's what we did; not to say we sat around happily waiting on our baby to show up on our doorstep. There were a few significant moments that helped us to trust God. My first moment was a day we found out our friends were pregnant with their second baby. I was laying on my bed sobbing and asking God why they got two children when I couldn't even have one. I feel like God let me sob and ask for a while that day then gently said, "I can bring you a baby through pregnancy. That's not too hard for me. It won't hold the same promises as the baby I want to bring you through adoption. So I stammered around for a minute and just said alright I will wait.

Don't get me wrong, the wait was hard. We knew that if we went through an agency we could have a baby in weeks. People kept suggesting different agencies to us. We would stop and pray and every time come back to waiting. It sucked. We had no control over when, or how, or pregnancy care, or any part of our child's life inutero. We often talked about the story of Abraham and Sarah. God said he would bring them a baby, but they decided to make it happen. Out of their taking control has come thousands of years of strife and anguish. Had they waited they would have realized God meant what He said, and Isaac did come.

The other big lesson came through a little boy. We found out that a baby boy had been born. Jason and I debated and prayed about if we should give our profile to the birth mom. I wanted to because I wanted a baby. Jason said no because he was positive that our baby would be a girl. So...we put our profile in, and the little boy went home with wonderful parents that weren't us. It took me months to recover at all, and even then I struggled with depression as I waited on our baby. I realized that had I believed my husband I would have been saved some heartache.

So through months of depression, crying out to God, and just crying a lot, we waited. It took almost three years before our Abigail was born. But man am I glad we waited. I got to go to doctors appointments, spend time with this amazing woman who had chosen me to mother her child, and watch Abigail come into the world (and cut the cord). We knew beyond any doubt that this was our sweet baby Abigail. I spent months rejoicing. I still rejoice. I feel so blessed and content. Mostly though I feel peace because I let God have the control and I know with every part of me that Abigail was meant to be with us.

The second part of my story has to do with our Abigail too. After she came I could easily look back and say I am so glad I gave control to God. However with that came this big sigh and after thought of, "boy am I glad that's over." On Sunday May3 we were singing a song at church that had meant a lot to me while we were waiting. There is a line that says..."bring me joy, bring me peace, bring the chance to be free, bring me anything that brings you glory, and i know the'll be days when this life brings me pain but if that's what it takes to praise you, Jesus bring the rain." That was how we felt while we waited. While I was singing I was thinking that it's much easier to sing this being on the other side. Then I began to wonder what our next set of rain would be. Exactly three days later was our appointment at Riley. I quickly realized again that just because the waiting was done does not mean that I get to take some of the control back. It's not even something you can plan for at all. The nature of neurofibromatosis is that you won't know anything until it happens. Nothing can be predicted, nothing can be prepared for all we can do is sit around, wait and pray like we never have before.
*Sigh* Control is a funny thing. I am thankful that we don't have control because I would not do things as well as God does. The invaluable lessons I have learned would not have been learned, and my relationship with God would be wishy washy. Control is only an illusion anyway so even on the days where I do my best to keep things lined up and under my thumb I'm just lying to myself.

All of this aside I have to say my earthly idea of control is ugly. I think of a man from my life who wanted to control everything, and still does. He is miserable, has horrible relationships, and exuberates bitterness. His marriage is over, his adult children don't like him, and he is still unwilling to let go of control. As a result of this I never wanted to be controlled. Giving it over is not easy.

However my Papa in Heaven has taught me that His control can be trusted. Even through waiting three years on a baby, and the diagnoses of a genetic disorder.

I have watched over the past few years as our friends around us learn the same thing. We have watched friends lose a child. Another choose to have surgery to prevent anymore pregnancy, get pregnant, and have a miscarriage. Then another choose to adopt, and go through a roller coaster as they fight to keep their child. In all of these situations the people involved have continued to trust God, and let Him control the situation and their lives. I am thankful for friends who point me in the right direction because of how they live, and remind me when I begin to try to control things that if they can let Him have it all, I can too.

Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge Him and He will make your paths straight.

Proverbs 3:5-6

Tuesday, July 21, 2009


I haven't written a whole lot of specifics on this multiple syllabic disorder. I think it's mostly because I don't want to think too much about the specifics. Some days I research and read more, but most days I just try to accept what we know for now and move forward in hope. The Bible tells us not to worry about tomorrow and that fear is not from God. So I pretend I'm not worried or afraid so that I appear to be handling everything in a "godly" fashion. Honestly overall I have a pretty good balance most days between the reality of what could be and believing the best. This is always the challenge in unknown situations. I don't want to walk around all woe is me, but also don't want to be devastated.
So for right now what we do know is that Abigail has LOTS of cafe au lait spots. Spots that are the color of coffee and milk. The french name makes them sound fancier than they really are. We have taken to calling them chocolate chips because we don't like coffee...and because they are what lets us know that she most likely has NF we don't want them to be called something we don't like. I digress. So I notice new ones all the time, but we need a second symptom for the diagnoses to be "official." It seems sort of sick waiting for you daughter to get freckling in different areas, or lisch nodules, or a tumor so that you aren't hanging in limbo even though no doctor has ever seen someone with more than 6 cal spots not have it. However yesterday I noticed what I think may be the freckling. So when we go to the doctor in November I think we will get the diagnoses which will help us get an insurance designed for children with special needs. This part of it is good. However even though I knew that we would eventually start seeing other things, the hope side of me held out that we wouldn't. So now I'm trying to find the middle again.
In all of this it made me think about beauty. I have tried very hard in my adult life to not talk about parts of me I don't like. I have been even more aware since Abigail was born. I want my daughter to grow up knowing she is beautiful and not hearing women talk about all the things they hate about themselves...because this gives her permission to find things she doesn't like about herself. However since the mention of NF I have worried so much more about her self esteem. She already has spots all over her that will grow in size and be very noticeable. She could also end up with little bumps (which are the tumors) or big bumps all over her. I have actually started to cringe when we are out and people comment on how beautiful she is. She is beautiful, but one day people may stare and say things for another reason. It won't change the fact that she is beautiful, but it breaks my heart to think about it. I'm crying as I write this just thinking about people no longer saying kind things to her. I am aware that beauty is not what truly matters and that is not what I believe matters. I do believe Abigail finding herself beautiful is important though. When nobody ever tells you you are it becomes hard to see it in yourself. For every time she possibly gets made fun of someone else will have to tell her ten times how beautiful she is.
The other thing this has made me do is accept a part of myself I have always hated. I have moles...lots of them. No actress or woman in a magazine has them. I have hated them for as long as I could remember. There comes a point with every child I've ever been around where they notice them and try to pull at them or get them. This day has just come with Abigail. However as she has tried to get them I have realized that in not seeing the beauty in my "spots" I will be teaching my daughter the same thing. And in all honesty I love Abigail's spots. I think they make her more beautiful because she is unique. Her skin is different than most other peoples and has little artistic spots all over it. So for the first time in my life I have embraced my moles as a beautiful part of me. They are fun little extras that God sprinkled all over me...and I wouldn't change it. Hopefully these lessons beckon our family to see outward and inward beauty in each person.

Thankful that we are all fearfully and wonderfully made in the image of God,
I thought I would share the miracle of Abigial crawling...if you don't know what I'm talking about you will have to read my earlier post!!

Monday, July 20, 2009

the end of quiet times, the beginning of a deeper relationship

Abigail was sitting on my lap at the end of this and I was reading it to her...we got to the part that said "I don't know" and she did her little version of I thought it would be an appropriate picture!!

It seems that Jason and I have been having lots of deep conversations lately. Perhaps we are just contemplative. I believe sometime in the last year we both became adults. I'm not sure when this usually happens for people, but I'm beginning to feel grown up more often than not. So the scale is at least tipping that way.

Anyway, in our conversation we were reflecting on our walk as Christians. In the beginning I read the Bible a lot and prayed. I read lots of books about believing and being a "good" Christian. I even read some devotional books. Then somewhere in there I got tired of feeling legalistic. You must read for 15 minutes and pray for ten so that the Lord can teach you things in your quiet times. Then trying to come up with the right answer when someone asks "so what's the Lord been teaching you in your quiet times?" I usually fumbled around and made something up. Because who wants to say I don't know, or nothing.

So the next phase of my walk was no quiet times. Sometimes I read the Bible by doing the flip and point method. Sometimes I would go weeks without picking it up. I may have been praying here and there but I don't specifically remember. All I remember is feeling guilty. I'm supposed to be sitting for 20-30 minutes every day to do a quiet time devotional and prayer. How can God teach me anything. He probably is done with me since I can't do this right. The guilt was horrid.

In the midst of all of this I did a two year internship program for people going into ministry. So I was studying the Bible, learning about missions, and learning doctrine and theology. It was a great experience. Somewhere after I finished, I was reflecting on what I learned there, and why God had called me to it since I had no intentions of going into ministry.

The conclusions I have come to thus far are: first I am black and white. I like rules and would have been perfectly content being a pharisee. Give me a list and I will do my best to follow it. That is not how Jesus works. Because He meets people where they are and everyone is in different places when they come the rules are sometimes different. And on top of that He calls people to different mission fields (if you will). Some are factory workers while others move to foreign countries. For that reason there is a lot of "grey" in what the rules are. There is some black and white, but mostly grey. I am embracing the grey. I am finding out what it means to be free in Christ. It means that I should read my Bible and pray. However that for me may mean sitting down and reading a few chapters, or focusing on a specific verse I already know. I have days where I need to sit and read, and days where I need reminded of what He has done for us. And praying...well I like the idea of praying continually. As I go about my day I think of different people, and I pray for them. It seems so much easier than sitting down and praying for a list of people, losing focus and never getting through the list. I have found as I have tried to pray throughout my day God will remind me of people and I will pray, or call, or write. Sometimes He wakes me up at night to pray. All of these things have brought me to a place of deeper relationship. The end of quiet times for me was the beginning of a deeper relationship with God.

The second thing I learned was that God did call me to ministry. Obviously I am ministering to those who live around me, but my first call was to my family. And knowing the word means I can teach Abigail. It means that I can go to it when I am trying to figure out what to do with a parenting issue. I can use it to instruct, encourage, and discipline my daughter. What an amazing resource. And heaven knows that Jason and I are praying our way through parenting. I daily feel inadequate, tired, and the desperation to surround my daughter's life with prayer. I should go spend time with my daughter now.

Enjoying the new found freedom in Christ,

Friday, July 17, 2009

marriage and friends

So for a variety of reasons I have been thinking about a couple of things over the last week or so. First I've been thinking a lot about marriage (and divorce). Jason and I just had our fifth wedding anniversary. It seemed like such a huge accomplishment. Five years isn't that long in the scheme of life, or even marriage for that matter. My grandparents were married around 50 years. We have a ways to go. However when I look around five years is pretty great. Really at the five year mark we are still happy, in love, and enjoy being married. I actually enjoy it more all the time. That maybe is what I really feel like is the accomplishment. Everyone telling us before we got married about how things will change and you will feel different...the normal downers people tell you before marriage (and then new ones with a baby :). I don't feel any different about my husband. Things have changed, but I am still madly in love with the man I married.
The other reason I've been thinking about it is because of some of the people around me getting divorced. Some might say I'm naive, but I am mostly still shocked when I hear about a friends marriage in shambles. How does it get there? Were they both blindsided? Did one of them know for a long time? Did they never talk about their problems? Was counseling never an option? I still haven't figured it any of it out. I hope that I never stop being shocked when I hear about things of this nature. I feel like if I stop being shocked it's the beginning of complacency, which might be what happened to a lot of these people. I never want to just accept that is just how the world is.

My other thoughts are on friendship. These are thoughts Jason and I have discussed over and over in our lives. For whatever reason we aren't great with friendships. We want to be good friends to people, and in essence we have lots of friends. However, the few people over the last few years that we have shared our whole lives with (good and bad, deep and dark) seem to disappear. Whether they move or something else happens, things always start slowly, but eventually contact ends and we feel the pain of another lost friendship. It leaves me to wonder if maybe I'm not a good friend. Do I not listen well, or do I talk about myself all the time? Am I full of unsolicited advice or overly opinionated? Maybe I'm just socially awkward. I have those people in my life who only call when there is an issue, do I do that? For whatever reason I return to that place of feeling lonely and vowing not to tell anyone that much about myself ever again. So in thinking about all of this it also made me think about my friendship with my husband, and why it works so well. I can tell him anything and he doesn't feel differently about me. I can be horrible to him, and he always forgives me. The only thing I could come up with is a ceremony where we publicly made vows to each other. We are committed to sticking it out. Friends aren't required to do that. So I think if I am getting to the place in a friendship where it's starting to be deeper I am going to ask that person to make a public commitment to being my friend(because that won't send them running). Then when I say something that hurts their feelings they can just tell me and I can apologize and we can move forward with an even better friendship. Because I truly want to be a better person and friend, it's just that if nobody ever tells me anything I can't change the things that need changed. Changing has to be easier than feeling lonely.

Longing for the community of Christ,

Monday, July 13, 2009

Abigail brushing her teeth in her big girl pajamas...I can do it by myself mama!!

I got an appointment for Abigail at the NF clinic!! WOO HOO!! Thanks to the advice of the aforementioned doctors Abigail will be going on November 3rd at 1:00. We should have an MRI before then to check for possible tumors already. We had an x-ray to check for tibial dysplasia (bowing) and it came back normal wich is GREAT. This is something that is possible but would be present from birth so it's nice to rule something out. We also have already been to our first eye doctor appointment and she doesn't have signs of optic gliomas (tumors on the optic nerves) which are a possibility but on the lower end of percentages or lisch nodules which are nearly gauranteed to happen at some point, but don't have any affect on eyesight. So really so far it's all been good news. It feels like I've been holding my breath for a while and am slowly starting to release it. With each new thing it feels a little less scary. Probably because most of the unknowns are becoming known...and even though a lot of them could still change over time it's nice to know what we are dealing with right now.

The biggest thing over the past few weeks has been the fear of a tumor on the spine. When we went to her nine month well check she wasn't using her legs like she should have been. The doctor ordered a spine and brain MRI because she thought it appeared to be neurological. We had our pastor and elders pray over her and have been praying as well and she is using her legs like she should be now. God has healed something in her. She crawled for the first time yesterday, is trying to pull herself up, can get herself into sitting position from her belly...all things that were not happening before and looked like unlikely possibilities for he near future. It's beautiful. I don't know if God healed the NF completely, or whatever was going on with her legs, or a tumor, or whatever, we do know that He showed up and did something awesome though. We have decided to go ahead with the MRI for various reasons that are more explanation than I want to type right now, but the fear I felt about it before is gone. It seems more like a technicality that is ordered for most patients with NF.

So on top of all of that I thought I would write a little about my thoughts from today. After lunch Abigail and I went and played in her bedroom. It's always a fun change of scenery and she loves it. As she was on the floor going from crawling a little to sitting to pulling herself up on my legs (with a little help) I kept thinking how grateful I am to be at home with her. All these things seem so miraculous with a child without anything hindering and feel even bigger to me now. I can't imagine someone else being the one to experience all of these first and then tell me about it. I would truly give up lots of stuff to get to be the one at home with her (although so far I haven't had to). I am grateful for a husband who supports this decision and who supports us financially. I know not all families are able to do this, but as I spend time with our baby girl I love being at home more everyday.

My last little blurp for today...after a bottle I usually rock Abigail and sing to her or read/tell a story before afternoon nap. Today I decided to tell her about her adoption (a story she gets told somewhat often). As I told her how much her tummy mommy loved her she looked over at the picture of her we have sitting in her room. I picked it up so she could hold it and she gave it a nice smooch with her love noise awawawawaw. It was beautiful. I used to worry about how I would feel about our child's birth parents. Would it feel like a competition, or struggle to love them...just the unknown. I can honestly say that I love Abigail's birthmom SO much. I have tons of respect for her and she will always have a hero sort of status in my heart. I love that our daughter already knows the words tummy mommy and relates them to this picture (even if she doesn't understand the concept yet). I am most glad that she also kisses this picture and I can't wait to tell her tummy mommy in our next update letter. There's no jealousy at all. I get lots of slobbery smooches often accomponied by her tongue and love noises, I can definately share them with the picture of the woman who loves her daughter enough to place her in our care.

Grateful for a selfless woman,

Saturday, July 11, 2009

A writing by Jason and Andrea...

Abigail enjoying her stroller! Daddy sharing his banana with Abigail
and second place runner Trever VH!!

So yesterday's ear tube surgery went was a good reminder of how great our daughter is. She was crying when we went back with her after she woke up, probably because everyone was wearing disney costumes! I almost cried too. As soon as we got food in her she was her normal silly self...actually, as she was eating breakfast she was signing more after every bite...and slept great during nap and was a joy the rest of the day. We had a few people who saw us on our afternoon walk ask if they had done the surgery...what a wonderful daughter. Although, really if she had been a fussy mess, we wouldn't have felt any different about her!
This morning we got up early to do a 5k in Carmel. It was to benefit the Children's Tumor Foundation, which is the organization that does research for NF. Jason ran it (and came in like 5Th and found new respect for his brother for running cross country in high was REALLY hilly, and mostly grass). I walked and only finished half before it started raining. I thought since I had Abigail I wouldn't walk another lap in the rain.However we got to meet the neurologists from Riley who are the doctors at the NF clinic where Abigail will have her first check up in a few months. They were great and there was something comforting being with a whole group of people who understand and have been through the same highs and lows.

We have been having a hard time getting an appointment made for her because we need a referral, or we don't, and we are getting one, but nobody has it has been a huge circle of calling the same people over and over who are beginning to think I am on the not sane side of things. The two doctors talked to us for ten minutes and told us exactly who to talk to for an appointment, and how to deal with insurance. It feels like this huge cloud is gone and things are getting sunnier. I know it might sound silly, but I have honestly layed in bed awake thinking of who I need to call, and what I should say so that my daughter can get to see the doctor she needs to.

So, tonight Jason and I are going to sit on the couch listening to our cassettes of Journey (yes, Journey...perhaps the greatest band ever!) and maybe some Puff Daddy (from when he was Puff Daddy) and watch Back to the Future (since it was the best of the series) on our v.c.r. (don't tell anybody that we STILL have vhs...shhhhh!) We like using parenthesis (because they are fun)!

Living it up in the 80's (they'll be back in another 71 years anyway)

Thursday, July 9, 2009

The longing of creation

Well to start off, tomorrow is Abigail's first surgery. Hopefully only, but one cannot predict what the future holds. Thankfully it is only getting tubes put in her ears, and we are feeling pretty peaceful about it. Having her put under is a little unnerving, but we know that God will hold her while we can't. I added the picture only because you have to have one on every blog...or it makes it seem more interesting!

Our neighborhood has been loud tonight. It's interesting because most of my favorite things about living here are also what I don't like. Sometime in the past couple of years I have realized that I love that the people who live here are real and honest. I don't mean they are "good people" who do an honest day work and blah blah....but that they live who they are. They are dysfunctional and are not into hiding it. My experience before here was seeing families who looked together and happy, but then it came out that one was having an affair, one was an alcoholic and the children hadn't actually talked to their parents in weeks despite living in the same home. It's amazing to me the number of upstanding citizens I see to come by crack and prostitutes. Blows my mind. People want to know how I can live here....well frankly I know which of my neighbors is using. I can even tell you the stories of what drove some of my neighbors to be addicts. Most people aren't even aware that their neighbors are addicts. It seems safer to me to know than to wake up one day to police next door and have no idea why.

I do have days though where I'm certain if one more person yells, holds their horn down instead of knocking, or mistakes me for a prostitute while I'm pulling weeds from my flowers I will do something crazy. Then our friend J comes by on his bike, so drunk at 11 that I'm afraid he will fall off of his bike, and tells me how great Jason and I are for all the things we have done for him (that really aren't that big or great to us). It is at this point that I am reminded of how Christ sees him, and how very grieved He is that J is hurting so much that he drinks to forget (and he has a story that makes me think I might of taken up drinking as well) instead of turning to the only One who could give him the peace and comfort he is looking for. After that I return to loving the noise, my loud neighbors, and people who live honestly. Where else would we go anyway? After living here I am not sure I could live in a place that others see as "normal."

Looking forward to the day all things are reconciled to Christ,

Wednesday, July 8, 2009

walking in hope

So this year was my first mother's day as a mother...the last two I have spent wanting to be a mother so it was pretty exciting.

The Wednesday before we had taken Abigail to Riley for what we thought was going to be an appointment where they said she's great and healthy and you are the best parents ever...okay not the last they did say she's developing great, growing, and extremely if we didn't know that...but they said she has lots of cafe au lait spots that indicate a genetic disorder and then I didn't hear everything else because my hearing faded in and out for a while. At the end of the appointment we walked out shocked. I feel like we probably looked like those people they show on television staring blankly ahead with our mouths hanging open as we walked to our car. We tried to remember what he had said on the way back to Muncie. Something about tumors and freckles and coffee and milk. None of those things make sense together. He gave us a website to go to and a stern warning that looking the disorder up on the Internet is not a good idea. It can do horrible things, and you don't want to see it. So if you are now curious the place to look is children tumor or and look for NF1.

Back to mothers day. Jason and I spent the next few days talking and crying...I didn't sleep well because I would wake up and lie there for hours thinking about my daughters body being full of tumors. Sunday morning daddy got up with Abigail and they brought me breakfast in bed along with my presents. Abigail gave me a picture frame with her hand print, footprint, and a picture of Abigail and I. Jason gave me a beautiful card and told me that I could get my tattoo. Now for those of you who know me well I am pretty straight and narrow. I got my nose pierced last year (much to some of yours dismay) because I think that nose studs are really beautiful. But ever since we decided to use tohelet (a Hebrew word that means hope) for Abigail's middle name I have thought wouldn't it be cool to put this on my foot as a symbol of walking in hope while we wait for our daughter. However tattoos are pretty permanent. But after reading about NF we realized all we could do is hope in the Lord and wait. So I did it. I'm literally walking with hope as we move forward with this crazy unpredictable disorder.

A few small disclaimers at the end...if you don't approve of my temple art (tattoo) please keep it to yourself. I am a great wife and mother and this is not affected by my art. Also if you are full of wonderful horror stories about NF or any other genetic disorder, please keep them to yourself. I need encouragement, and no help thinking through worst case scenario. I have done that all by myself.

Walking forward in hope,

Tuesday, July 7, 2009

five years two dogs and a baby later

We have decided to start a blog for a few reasons. First it's a great way to keep all of you informed about day to day life if the Mann household without your having to sign up on a social networking sight. Also our lives our so interesting we assumed that everyone should be able to find out what is going on. Lastly since we are in the beginning stages of doctor appointments for Abigail due to neurofibromatosis 1 being likely we thought this would be the easiest way to update everyone. So here you go.

For those very disconnected Jason and I just had our fifth anniversary! We have a chocolate lab, and beagle and best of all a beautiful daughter born in September of '08. If you can not tell by picture she is adopted. The last five years have been full of ups and downs, but we can both say now that we love marriage, and it has gotten easier with every passing year. We live in urban Muncie in a home we have "owned" for four years....the term owned is funny to me since REALLY the bank owns it and we are responsible to pay them AND to take care of anything that needs fixed. Maybe we are slightly jaded since we have had more than most when it comes to home ownership. As a result this house is definitely home.

Jason washes windows full time and I manage the house (stay at home). We have found that having a child is better than television. We love watching her right now because she is fascinated by her hands. When she is playing and eating she will stop and look at them and turn them over to examine them. It's also great because when Jason and I are talking at dinner we both move our hands and gesture a lot and we often look over to see her mimicking the movements. She also has started to point at things. She loves trees and she sticks her chubby finger up and says "t" when we are on walks. Some of you are probably rolling your eyes at our gushy first time parent talk, but it's what we are supposed to do. If you are truly annoyed you probably shouldn't read our post!!