Thursday, September 30, 2010

Stream of consciousness

When I was in eight grade I had this awesome English teacher who made us journal. We had to write for a specific amount of time without stopping. If we didn't know what to write then we were to write "I don't know what to write" over and over again until time was up. It was supposed to be our thoughts as they popped into our head. I loved it. Although this post won't be exactly that, it will be all over the place and possibly have that feeling. Welcome to the world inside me head. :)

First of all our friend who had the motorcycle accident has made a remarkable recovery. We went to see him today and he is about 90% himself again. His personality is back, he was talking with us and laughing, and his beautiful wife was beaming with happiness at how things have turned out. So to recap on Saturday, September 18 he had a motorcycle accident where he hit his head, broke his neck, ribs, and collar bone, crushed his right jaw bone, and had some other road rash areas. On Friday October 1 he will be released from the hospital to go home. He will still be doing some more p.t. and such, but it's truly miraculous.

Secondly, this is what I read before I left to take Abigail to see the developmental pediatrician yesterday; I considered printing it off to give to her after last weeks appointment.
However, I didn't need it. She was PHENOMENAL. I'm not certain I can put into words how great I felt when we left. It wasn't because we got great news about anything, but because she was kind, compassionate, and NOT cocky. There were a few things she said she would have to think into more and research before giving me an answer. I liked that a lot. It went so well that I cried happy tears on my way home.
There has been this building list of "little" things going on with Abigail that we keep having to sort of push aside because nobody seems to know what they are or if they are connected. After yesterday we have two possible diagnosis that we will be seeing other doctors to confirm (or deny). I LOVE Dr. Julie Keck at Riley Hospital for Children.

My next thought was after reading someone else's blog. Someone who's son has down syndrome had a friend who offered for her and her pastor to come pray that God would heal him. The mom said no thank you, that the extra chromosome was what made him who he was, and she didn't want him to be healed of that any more than she wanted his eye color to change. It was part of his genetic make-up.
And that was when it finally hit me. I don't pray for Abigail to be healed. I pray for God to be merciful and that she will have a mild case, but it always has felt unsettling to ask God to change the fact that something on her 17th chromosome is coded incorrectly. And this woman's response helped me figure out why. It would be weird to have an Abigail without cafe au lait spots and freckling. It wouldn't be Abigail. Her things that indicate she has NF are things we have grown to love about her more and more...even her large head. We don't want those to change. We don't want her to get tumors and so on, but we like the way God made her. So I am settling in to not praying for God to change her genetically, but just to be merciful in the things that could happen.

And lastly, since I haven't posted any pictures in a few post I will post the pictures of a sweet little girl brushing my hair for me...with only slight amounts of pain on this extremely tender headed mama.


And there you have my thoughts on life as of late,

Tuesday, September 28, 2010

Empathy

Empathy: understanding and entering into another's feelings.
In college I remember sitting in a room with a bunch of other woman at some sort of a Bible study or something. The speaker asked if anyone in the room has the "gift of empathy." One girl raised her hand. The speaker went on to explain what it was, and I sat there thinking something along the lines of it's not possible to feel what someone else is feeling.
If the truth be told though, I didn't even enter into my own feelings at that point in my life. I refused to show weakness by being "emotional." I was strong. I was able to handle almost anything and stay the rock that I am.
Okay, so it was all a lie. One that God has been slowly chipping away at for quite a few years now. Apparently emotions are good, and given to us by God. Even He feels joy, pain, sorrow, and happiness. So the rock that wrapped itself around my heart has been painfully falling away as I learn how to feel.
However as a result of opening myself up to this whole "feeling"thing, I found out that I have the "gift of empathy." That's in quotes because it mostly feels less like a gift and more like a burden. I mean sure I can love people better because I care about how they feel. But I also don't sleep when I hear stories about someone abusing someone else. I lie awake thinking of what they must feel like, how they are doing, what I might be able to do to help. Even if they are worlds away. This is how my gift works.
All of this leads up to my past few days. A week ago Saturday a man that we love, and that will always hold a special place in my heart for a variety of reasons, was in a motorcycle accident. He broke his neck, collar bone, ribs, crushed his right cheek bone, and has some road rash. And he is physically doing awesome. He isn't paralyzed and needs no surgery. Miraculous, truly.
However his mental capacity isn't all the way back. He is married to an amazing woman who has been with him since it happened. We have been praying for them, and although I have been praying for his healing, I can't help but feel the pain of his wife.
We went and visited on Sunday. It was a good visit. He knew who we were, and watched Abigail with a smile the whole time we were there. He said some thing that didn't make sense, and remembered some things that were astounding. We are still praying for God to restore his mind.
And I spent time talking to his wife. Talking about what it's like to live in the what ifs. How I truly understand the future unknowns and waiver back and forth between trusting that God has it all in His hands and being okay with that, and then going through all the scenarios of things that could happen.
Since we left that hospital our daughter has been praying for her friend and his boo boo over and over. It brings tears to my eyes at how compassionate she is. She is asking to go see him again...which we may just have to do soon. And me. Well I have dreamed of them, and find myself unable t think of little else than how they are, and what their future holds.
I'm mostly thankful that God has given me the ability to feel so deeply. It means I can't watch the news, but it also means that my once hard heart now knows what it means to fully feel things. I am sharing this though so you all can join me in lifting this family up.
Heavy hearted,

Friday, September 24, 2010

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,

Tuesday, September 21, 2010

So it is possible that I have been in avoidance mode for writing an update on the girly. It's not because anything huge is going on. It's because the last few weeks have been mostly normal feeling. So I wanted to keep it that way. But I suppose I owe you a little news huh.
Abigail has had three sessions with the speech therapist. Every time she has gone on and on about how smart Abigail is. We obviously think so, but everywhere we go people are enamored by it. So apparently she is a smart two year old. It wasn't until this last session when Abigail talked quite a bit that she finally understood me when I said, "We aren't worried about her vocabulary. We are worried because she can't put words together." I was glad the therapist got to hear more words from her this week. It is an interesting thing to watch your child go from an off the chart vocabulary to struggling to put together all done. It took us about two weeks to go from all (20 second pause) done to her saying it together. And that is how it is with all two word phrases. You can see her trying, and it's like her brain has a disconnect that won't let her do it. And there are no two word phrases that she says on her own. Alas, we hope that speech is helpful.
Our only other real update is that we will be seeing the orthopedist tomorrow. I have no idea if they will do x-rays, testing, who knows what else. I just know we see him in the morning and I'm hopeful to get some answers as to why her back is hurting, and about three or four other things that have puzzled her neurologist and physical therapist.
I should be honest that the past few days have been surrounded by people around us having bad news. A motorcycle accident, cancer, heart issues in a 9 year old. It is starting to make me feel anxious that we are going to get bad news tomorrow too. I know it's silly, that's not really the way the world works. It's how I work though so you can be praying for me tomorrow as we make the trek to Indy.
I'll leave you with a short clip of Abigail's new dance move. Despite it's slight resemblance to a moon walk she has not been watching Michael Jackson. She came up with it all on her own. And ignore the beeping at the end. We have a temperamental smoke alarm that detects heat as well...and goes off every time we open the oven!
video

Saturday, September 18, 2010

Community

We are part of an awesome community. I don't mean the suburb we live in or anything of that nature. I mean a bunch of people who have intentionally become part of a community. If you are interested in learning more you can go to the ccda website, but the medium definition of it is that the urban centers in America have been fled from, leaving them full of people who are often living in generational poverty with less than par housing, schools, and numerous other things. So there are groups of Christian's all over the United States moving in to live among the people and minister to them. There are three "r's" that go with it.
The first is to relocate so that it is no longer "us" helping "them" and knowing how to fix "their" problems. Instead it is our problems. Our corner drug dealers, our sub-par schools, and our neighborhood houses that are being (not) taken care of by slum lords.
The second is redistribute. We would like recourse's like money, the knowledge of middle class rules (that control the function of our society), access to education, health care, safe housing and so on to be available to everyone.
And lastly (but not really the last on the list) is reconciliation. We desire to see people reconciled to each other and God.
So in Muncie Indiana there are a group of us who have moved mostly into the same neighborhood (there are a few families who have branched into some new neighborhoods) who are attempting to live this out. We all attend this church. We have had our hearts broken by pouring into families to have them move and never hear from them again. We have also seen people find freedom from addiction. A few Sundays ago we watched a man who has been with his girlfriend for twenty years propose to her in front of the church (she said yes). There is a man in our group who owns a business that employs people who are hard to employ (past addictions, poor employment record, felony on their record etc.). It's where my husband works as well.
It has been a wonderful thing to live here for so many reasons. First of all we live within walking (and a couple biking) distance of all of our friends. We see these people on walks, when we are shopping, at the park, at church on Sundays, and when we plan things like eating meals together and so on. It can be hard because it means you KNOW people's business. It is much harder to be fake with people you see all the time. We have a wonderful couple that Abigail calls grandma and grandpa that we enjoy because both sets of her grandparents are far away. Lots of our friends have kids around the same age, that Abigail plays with and will grow up with.
There are times though that I hate living here. Times when everything seems bleak, I'm tired of constantly living where people can see, or the guy next door is drunk again and screaming at his girlfriend. It's not always something that I'm glad I did, but it's something I always know is right.
So anyway, all that leads up to being reminded of how great our community is again. Last night Jason and I had tickets to a concert. Abigail was supposed to go hang out with her local grandparents, but grandma is pretty sick. The tickets were Jason's father's day present, and yesterday was nine years ago we started dating. For the most part we new we could find someone else. Accept Abigail has had a low grade fever for a few days. We were nearly certain it was from her last molar coming in, but couldn't guarantee. Our friends (who have four kids of their own, and were also watching their two nephews) took on the idea of "the more the merrier." Our daughter had a great time, and when we came to pick her up she was asleep in their spare bedroom. It was so nice that we still got to go, but even better that we didn't have to worry the whole night about how things were going. We knew she was taken care of, loved, and having a good time.
And then tonight another friend called and asked if we wanted to go to the park with them. We ended up showing up and the family that watched our girly last night was there with their kids too. It was so much fun to let the kids run around getting dirty, laughing, (and a few tears here and there) and enjoying themselves. It was nice to stand with all of the other parents talking about life and the joy and pains that come with parenting.
I came home feeling refreshed, connected, and most of all, blessed to be part of something so wonderful. We are an eclectic group that have different beliefs about some things, different parenting styles, and different taste in just about everything. I don't know how many of these people would have naturally become friends if it weren't for intentionality. However we connect on at least one level, and for that reason are committed to sticking it out and loving each other for who they are.

Loving community,

Tuesday, September 14, 2010

Please Pray

If you have a couple of minutes check out this sight and be praying for the family.

Thanks,
Andrea

Friday, September 10, 2010

Bitterness

There have been a few times in my life I have had to stop and really let go of bitterness that was taking root. The first time it was pretty big stuff, and a freeing experience.
The second time around was when we were waiting on a baby. Sometimes I would become bitter that friends were having second children and we didn't even have one. One of the hardest things for me though was a girl who's parents live across the street, getting pregnant over and over and over again; and not seeming to like her children. I started asking God how that was fair or just. He never answered. But at some point I realized that fallen world=unfair. Things will be fair and just one day, but not until heaven and earth collide. And so I worked through once again letting go of the feeling that I "deserved" a child more than she did, and the bitterness that came with that.
However as a result of my sinful nature I sometimes have that fleeting moment where I can allow that thought to go through my head. And yesterday it happened; although very short lived.
I was playing outside with Abigail. There is a little neighbor girl who is two months younger than Abigail. Her parents were in high school when she was born, and aren't together anymore. She spends way more time with dad than mom. And when mom comes to drop her off or pick her up there is often yelling back and forth.
Abigail and I were playing hopscotch for the first time. She can't do it, but she gave it her all and I was feeling pretty proud of her. I looked over and watched the little girl across the way walking up and down steps freely with no hands, and could hear her talking to her mom in complete sentences. And it happened.
"Why is it that this little girl, who's parents don't really pay much attention to her, speaking more, and doing more physically than Abigail. We read, we do p.t. We REALLY work with her."
I let the thought go and continued to play. A few minutes later the little girl (who was mostly being ignored while her parents talked) walked into the street. She got in trouble, and then they handed her a bag of potato chips and told her to go play.
By that point Abigail and I had been tracing each other on the sidewalk, she had identified a lot of the chalk colors, the number 5 (I have no idea how or why she knows this), and were doing shapes. We had run through the grass doing cartwheels (mostly me, but she tries) and tackling each other. We had layed together giggling in the grass. I stood up and could see the little girl standing on the porch watching us.
And it hit me hard. Who cares if this little girl could "do more." Abigail and I were having lots of fun, laughing, playing, and just enjoying being outside together. Abigail won't remember that she couldn't do steps by herself at two. She will remember her mama and papa playing with her.

Mama and Abigail playing with her train on her birthday.

So here's to letting go of bitterness to enjoy the giggling toddler instead,

Tuesday, September 7, 2010

Took me by surprise


A week or so ago we got pictures done of Abigail. They are the ones for a website (and when they are posted I will link to it again). Anyway it was a lot of fun. Our friend came to ballet one Saturday morning and then we met at a park last week to finish the pictures. I couldn't wait to see them finished.
And yesterday she brought the disc over filled with beautiful portraits of our girly, and a few of us together. But something weird happened. My eyes began to brim with tears. I loved the pictures. I wasn't sad about that. And they did such a great job capturing her sassy and fun-loving personality.
It was that for the first time I saw what other people see. I am the one who puts Abigail's braces and straps on everyday. But I quit noticing them. We decided to do the pictures with them because right now they are part of who she is.
I didn't expect the emotion that came with it though. The feeling of sorrow at how she looks "different." The sudden flashback to the family at the park that just kept staring and the realization that the staring was not because we were getting pictures done. It's probably the first time I saw the idea that there is "something wrong."
I still think she is beautiful and perfect just the way she is. I don't want something different because I want my little bug. But there is something sort of hit you in the face when you are trying so hard still to come to terms with the labels that doctors and therapist have put on your child, and all of a sudden you can step back and see more than just your child.
And I think this is the difference. When I look at Abigail all I see is...well Abigail. Sometimes I notice new cafe au lait marks. Sometimes I look at her face and see some of the dysmorphic facial features that a few people with NF have. But they are these small glimpses that go away as quickly as they come, and all I see again is Abigail.
But the pictures were different. They were these all of a sudden in my face pictures where I see lots of cafe au lait spots (that I doubt anyone else noticed). I see that she has a flat nasal bridge, and wide set eyes. And I see the devices that I put on everyday to help her body work like it should.
I have felt like I finally got to the acceptance stage of grieving. But I guess this may be a process that I arrive at over and over only to find myself back at the stage of anger, or denial, or whatever the other ones are.
I will leave you with a few of our favorites. Because they really are AMAZING pictures.


Doing her ballet.

Giggling.

Enjoying swinging with papa.

One, two, three, weeeeee!

In a tunnel.

My sassy face.

Still greiving I guess,

Thursday, September 2, 2010

Happy Birthday sweet Bug.

On September first of 2008 we spent the day at a park in a city close by. We took our two dogs over and let them play in the water, and run free. They didn't know what was coming, but it was a last hurrah for them for a while. That evening Jason and I ate dinner and went our separate ways. Jason went out with a friend for a few "your about to be a dad" beers. I went and stayed at the hospital.

It's always weird to me the things that stick in your head. I remember most of the night very vividly. I know what television shows were on. I remember the hospital room and exactly how it looked, and which room it was. I remember lying there awake and watching the woman in the hospital bed sleep. I know what she ate that night, what she drank, and what the nurse looked like.

I also can still feel the anticipation as the annoyed nurse reminded the woman in the bed that she wasn't even dilated an hour ago so she couldn't give her an epidural yet. And then the look of panic when the nurse checked her and had to report that she was ready to push, and would not be able to get an epidural.

Jason didn't understand what it meant when I called and gave him the stats and numbers. I felt bad for the first person who answered the phone at 4 in the morning when I dialed the wrong number. And a few hours later I cut the cord and looked at the beautiful being that had just made her debut.


Here she was our Abigail Tohelet. Born at 6:17 a.m. on Tuesday September 2, 2008. 6 pounds 7ounces and 18-1/2 inches long. And yes there was some chaos and a few days in the NICU, but our long awaited journey to parenting had officially begun. There was paperwork over the next few days, e-mails about what needed signed, and dates that things needed done. Things that people who have children biologically don't tend to think about.

It's interesting though because the story isn't just about us having a baby, or becoming parents. There is another person involved. And I have written before about the goodbye, but it is something that also so vividly sticks in my head. It was her birthday. We had given her a letter and a small present. She walked in the NICU to tell her daughter goodbye. We had no idea if we would ever see her again, or if our daughter would. The joy and pain of the goodbye were intermingled.

And two years later we are madly in love with this little being. I can think of nothing that God has entrusted to me that I am less deserving, or more thankful for. And as we celebrate the life of our little girl it is still a reminder of other things. Knowing that even though we now see her tummy mommy, and spend time with her, that today is still a hard day for her. And in two days when she's celebrating her birthday, she also will have the remembrance of what it was like to lovingly, and unselfishly, choose to walk out of the hospital without that little girl.

I have read adoption books that talk about how birthdays are sometimes hard for adopted children. I understand. Because I couldn't be more excited about celebrating our daughter's life. And yet there is still that intermingled feeling of pain because I love her tummy mommy as well, and know that this was not an easy thing for her.

So happy birthday beautiful daughter. I could think of nothing more wonderful than the joy of getting to be your mama.



And thank you kind tummy mommy. I can think of nothing more honoring, or humbling, than you choosing us to be her parents.




Forever grateful for our little bug,