Monday, August 30, 2010

Pain....again!

I don't know what to even say about all of this. So I will just go into it. Last week Abigail had another "episode" of pain. However after the last few, and having nothing definitive to explain it all, I decided to pay as much attention as I possibly could if she had another one. So I did. Instead of just holding her and praying, I took a deep breath and tried to watch her eyes, her body and take in what she was doing when it started, how long it lasted, and so on.
And much to my surprise there was more going on. Her legs were stiffening up and becoming limp just to stiffen up again (involuntarily). After that stopped I took a still crying, but less hysterical girly in her room and rocked her. Her legs then began to twitch for the next few minutes and she was exhausted. Granted it was nap time, but it was more of a can't keep my eyes open exhaustion.
And although she was conscious and interacting with me (shaking her head yes or no etc.) through the whole thing all I could think is "she looks like she is having a seizure in her legs."
So a phone call to the doctor, and another episode that night (for papa while mama was at a meeting) has left us knowing....nothing more!
The doctor said if the leg spasms happen again that we will do some testing. And if the pain continues we can start on meds for it. However Jason and I don't feel like that's (medicine) the best answer. The pain is not constant, and the episodes are so short (10-20minutes) that even if I gave her ibuprofen at the start it wouldn't have kicked in by the time it's over.
We have an appointment with the developmental pediatrician at the end of this month, and after I finish writing this I am going to call to try to move up her orthopedist appointment that is supposed to be in December.
So I write this to update a little, but to ask that you could all be praying for something definitive. It's not so much that I can' handle it when she is having these episodes, it is that there seems to be know rhyme or reason to why.
I will have a more update post in the next couple of days since our girly turns two this week. But for now we would love if you would all lift our sweet bug before the throne of God.

Always something,

Wednesday, August 25, 2010

Parenting

I will admit that there have been many times that I have thought something to the nature of "who thought I was capable of being a parent." Because let's face it, parenting is not easy. It takes every ounce of my energy daily to do the same things over and over, teach the same lessons, discipline for the same disobedient act...and so on and so on. And some days I come out thinking I did okay. Some days I lie down praying that God will make up for all that I have lacked, do lack, and will lack in the future.
I have been thinking about this a lot as someone has mentioned wanting me to teach parenting classes for the prison re-entry and drug addiction program our church helps with. And after thinking through being completely inadequate, how I feel about parenting, and what I might even say I came across this article (it's long). After reading it I thought some more.
And then Sunday my little bug came down with a virus and has had a few days of a pretty good fever. So she has spent the last couple of days watching a lot of "Blue's Clue's" and "Little Bear" on her bean bag to help her rest (without this she runs around acting fine). And as she has spent large portions of the day watching television I have missed her. I have missed interacting with her. And I think I can say I have missed the opportunity to have to discipline her. Not because I like to discipline, but because I have felt like she has learned nothing from me in the last two days. I haven't gotten to show her forgiveness when she asks for it, nor have I had to ask her forgiveness. I am just simply not having to engage her at all. And sure, I got more dishes, more laundry, and more facebook time. But I sure didn't feel like I was parenting much.
And last night as she woke up crying I went in and picked her up to rock her. She melted into my shoulder and chest and she slept. And as she was laying there I loved the weight of her in my arms. I loved that she wasn't trying to hold herself up at all; she was just peacefully sleeping on me. And it hit me. I in some (probably crazy) way like the weight of being a parent. I like the responsibility that God has entrusted to me. Not because I'm great at it, and not because I'm deserving. Simply because it has shown me who God is.
I became a follower of Christ in my senior year of high school. And unlike some really cool stories I have heard, I didn't have anything huge going on. I was a really good kid. I didn't do anything illegal. I wasn't addicted to anything (okay maybe soda) and I wasn't being promiscuous. I was a boring teenager. And as a result of that I have struggled with knowing that I too need a savior. My sins were not obvious. They were small ones, easy to push to the side. And then I watched a little girl do small things like reach out with one finger and touch something I had told her not too. Or look around to see if I'm watching before disobeying. That's when my eyes were opened. Because a sweet little girl's small infractions are the best time for teaching. I don't want to wait until she actually puts something in the socket to let her know she shouldn't play with it. And God doesn't want me to wait until I get "shocked" before I decide I might want to listen to Him. So even those things that are "no touch" that I just barely put my finger on are just as much in need of Him as my little girl is in need of me showing her consequences.
And that my friends, is why parenting, hard as it may be, is beautiful. I thought for a last plug I would throw out that I am going to be starting a book study through the book "Grace Based Parenting" by Ted Kimmel. AWESOME book. I have read tons on parenting, and nothing has compared to this in helping me to feel confident in the choices I am making for my daughter. So if you are interested let me know by sending an e-mail to the one listed at the side. The book is available through Amazon (I bought a used copy and spent about six dollars on the book and shipping) and I'm certain you can get it from local stores as well. I will e-mail people back with the place where the discussion will happen (probably some sort of page on facebook if that works for all) and when we will start. Looking forward to expanding this discussion to different states and hopefully countries. :)

A sinner saved by grace,

Saturday, August 21, 2010

A few of Abigail's favorite things.

As we rapidly approach the two year old mark, our sweet little girl is developing her list of things that are her favorite. She is an EASY and compliant toddler. Seriously. Potty trained at 20-1/2 months, has started waking up dry from nap and bedtime most days, and moved to a big girl bed at 22 months without one issue. She just is a breeze. She does a (mostly) great job obeying. She isn't a picky eater. She would sit on the couch with us reading books to her almost all day. She loves going "nigh nigh" and has never fought it. However like most two year olds, she knows what she likes. And although she isn't much of a fit thrower if she doesn't get it, her joyful giggle when she has any of these things lets you know they are her favorite. So in no particular order:

1. Papa. And who can blame her look at that handsome guy. But really she is her papa's girl. When she sees him walking up after work she screeches in delight and knocks on the door until he opens it.

2. Little Bear. A sweet fun little show that she calls "bara bear" and ask for by signing bear.

3. Blue's Clues. Her favorite character is mailbox. And she loves to sing the blue's clues song.

4. Lambie. She got him for her first Easter from grandma and grandpa in Muncie. He was the same size as her then, and she instantly fell in love. She sleeps with him, he goes potty, he walks, walks, and is starting to be drug around a bit more. And look at that big soft fuzzy guy, how could you not be in love with him. He also goes hand in hand with two of her other favorites, her "gigirl bed" and her thumbie (which finds it's way to her mouth when she's holding the soft guy).

5. Popcorn. She calls it "cacorn" and does the sign for it as well...one of my favorite signs...and then says "pop, pop, pop."
So I don't have great pictures for the rest, but a few others are french fries; she doesn't care if they are from McDonald's or if I cut up a potato and bake it. Water; she loves to take baths, swim, and drink it (it's the only things she will drink aside from milk). And last but not least, books. She loves to "weeeeed pea." My day is spent reading the same books over and over. Her most favorite right now is "Good Night Beach" a book grandma and grandpa Mann got for her on vacation. But really she loves Sandra Boynton, and her books with colors and shapes; any book will due. As long as she can snuggle up next to you on the couch and "weeee."
And our favorite thing: Being the parent of such a fabulous toddler.
Enjoying our favorite thing as she enjoys hers,

Wednesday, August 18, 2010

Opthalmologist and things upcoming

Okay first of all I was totally "that momma" today. You know the prepared one with activities and snacks. The one who's kid is happily playing and coloring while the other kids are bored with the two toys available in the waiting room and ripping up magazines. In my defense this was our third time at this office, and I knew the drill. They call you, dilate the little girls eyes while she screams. We go back to the waiting room and I attempt to calm her down and make certain to not stare as the other children come out screaming. Sometime between 30-60 minutes they call you back again to do the eye exam. At this point the girly is somewhat terrified of the man who put stuff in her eyes earlier, and not excited to be back in a room with him.
So I went prepared. And then...they didn't have to dilate her eyes today. I can't begin to tell you the joy that brings to me. The appointment was simple her following some toy with her eyes and then watching some veggie tales while the doctor looked at her eyes.
And the results were no lisch nodules (which are an NF thing) and her prescription has not changed. So it was easy peasy! We left and ate McDonald's together for lunch, and then drove home. And of course the Nestle plant is on our drive home so we get to giggle together at the large bunny drinking "nu" (milk) through a straw. Never gets old. I also get to look in the rear view mirror to my not quite two year old raising her hands in praise to a David Crowder song. I'm not certain that I could have asked for a better appointment morning.
Beyond that our other updates are as follow: Abigail will be getting a nutritionist evaluation done on Friday to see what she thinks about the less than average growth rate as well as the weight fluctuation. I am playing phone tag with a speech therapist, but we should be starting in the next week or so with that. And finally, *sigh* we will be going to see a developmental pediatrician at the end of next month. I don't usually look forward to more doctors appointments, but this woman specializes in international adoption, as well as being extremely knowledgeable in things that come up more often in adoption in general. So I feel like all of the little things that each doctor is sort of at an "I don't know" point with can be channeled into one doctor to see what she thinks is NF related, and if we can pinpoint some causes of the other little things.
Also completely unrelated to specific health things, if you have a kiddo with special needs, are a photographer, or like to volunteer you might check out this sight. Abigail will be featured on it sometime in the future, and I will re-link to it when she is. For now we are enjoying the excitement of getting pictures of her done by a special friend who is a photographer for this site.
I'll leave you with this image. This is what is left about three minutes after handing Abigail a whole peach. :)

Tuesday, August 17, 2010

To those who go before and after

When we found out about Abigail's NF I joined a forum of other people who either have NF or have a kiddo with it. I remember in my first few post everyone telling me it would get easier with time...and not believing them. But here I sit over a year later, and it has gotten easier. And now I say the same thing to the new parents on the forum.
The beginning is hard. Trying to navigate the bomb dropped on your family, grasping at straws of how it might be your fault, maybe you should of noticed something earlier, and how you are certain there is some way that somebody can predict what will happen in the future.
Then you go to a few appointments. You get questions answered, and realize that your child has remained the same. You realize that all that time spent worrying, and stressing is time that is being taken away from enjoying your child, spouse, and life in general. So you slowly begin to let go of some of it, until all of a sudden you realize you haven't had a sleepless night worrying about things in months. When did that happen?
But, as the moms who have been at this for many more years than I have will tell you, appointments ALWAYS bring you back to a place of anxiety; even if it's not as much as it was in the beginning. Because there is the fear that something will be found; that your wonderful kiddo who laughs and brings joy will have a tumor.
And tomorrow is our ophthalmologist appointment. It hit me last night that they could find something and since then I have had that little ball of anxiety resting nicely in my stomach. I of course dreamed that she had a large tumor that grew so quickly we had to start chemo the day we were at the doctors office. Yeap, it's appointment time again.
Thankfully it has only been a couple of days of anxiety instead of weeks. And the biggest part of me is certain she is fine. But this stupid disorder has a grip over people making you constantly wonder when things will turn sour. When will she get her first tumor? Where will it be? How will I react? How will she react? What other symptoms will she have over her lifetime?
But tomorrow will pass, and for a little while we will go back to life as we know it. I will sleep fine again, my stomach will feel better, and NF will be something that may never leave my mind, but it won't encompass my every thought.

Looking forward to Thursday,

Wednesday, August 11, 2010

Infertility

I don't talk much about Jason and I's inability to get pregnant. In all honesty it's not something that is on my mind very often. Don't get me wrong, there have been seasons where I have mourned it in some way or another, but as I've shared before, I don't struggle much with our infertility.
However, a few things have started to come into play, reminding me of our closed womb. First is or course the fact that Abigail has become a big girl. She wears undies, sleeps in a big bed, eats with a spoon, and doesn't want to hold my hand. Yes the fact that I don't have a baby anymore has reminded me that we can't start "trying." Mostly because we never stopped.
The other thing that has me thinking about it a little more is that we are getting ready to approach a new number of years we have been trying. We are rapidly approaching the five. And it for some reason feels like the wrap of the gavel by the judge. Like once we pass that number it's final. Now I know that you know someone who got pregnant after five, ten, and however many more years. And that's great. I know that it's not truly finality. But as this is my blog and I'm trying to explain my thoughts, it feels final.
It makes me think back to our dreams when we got married. We wanted a large family. Really. I wanted ten kids. I wanted lots of kids filling our home with laughter, life, and great chaos. I wanted the full quiver God tells us is a blessing in His word. And as the years have passed I have allowed myself to be okay with the idea of maybe having two kids.
Jason and I have talked a little about our next adoption. We have discussed adopting another kiddo with NF, and have gone back to where we were before Abigail with being open to a child with a disability. And only God knows what the future holds.
Anyway, as I was praying about all of this the other night I felt like God told me that my quiver will be full. I may not have ten kiddos like I originally hoped for, but that the needs of my children would bring me the blessing of a full quiver.
*Ahhhh* That sigh of relief. That feeling of refreshment after God so clearly reminds me that His ways are higher than mine, and that His plans are far more perfect than mine. I mean look at the beautiful little girl he brought to us. My plan was much different, but His has turned out more beautiful than anything I could've planned.

Grieving just a little,

Sunday, August 8, 2010

Bittersweet

It's truly amazing how in one day with my little girl I can feel so much. Saturday was such a day. We started the day off by going to the farmer's market to buy peaches. We had picked some just a few nights before, but I canned most of them.

*The very pregnant and tolerant cat at the peach farm.*

Anyway, after the market Abigail had her first ballet class. It was really sweet seeing all these little girls in leotards...most of them doing their own thing. Abigal stood there for the first fifteen minutes watching everyone else. After that she decided she would try stuff. She did a few moves with her arms, and tried galloping and a spin even. Super cute. She was definately the youngest girl there, and seemed to do a little more than a few of the threes. So I felt really good. It was fun, it was cute, and she was smart enough to get it. When we got in the car she asked to do it again. :)
*Abigail pulling her skirt up around her chest...not wwhat she was supposed to be doing.*
*Abigail pulling on her hair...again now what she was supposed to be doing.*
*Attempting a ballet move with the teacher and other girls.*
*Doing the arm move that the teacher is.*
So last night we went on a picnic to a local park. We ate lots of fresh veggies from our garden, played on the playground, and feed the ducks. And it was that moment where we were reminded that our girly has some large motor skill issues. She would just rather not play on the playground because the steps are a lot of work, and trying to climb from level to level is impossible without help. So sure it looks like fun to slide down, but it's too hard to climb up to slide down. And as a parent it's just one of those moments where you feel sad. She loved feeding the ducks. And we swung from a really joyful morning to an afternoon where we were reminded that our two year old doesn't quite function the same as others her age. And it's fine, she will get there with time, but for now I guess we will stick to feeding the ducks.
*Feeding the ducks. *
I'll leave you with the video of Abigal attempting to gallop with her teacher. Miss Lisa said that she seemed to get the rythm of the music. We just thought it was great that she wasn't pulling her skirt all the way up anymore. :)

video

Tuesday, August 3, 2010

Reminiscing

The other night after I put sheets on Abigail's bed I sat in the rocking chair and closed my eyes. There were a few tears, but mostly just remembering. I remembered how it felt to sit in that room before Abigail. I remember reading, and re-reading cards and letters people had given us to encourage our hearts as we waited, laying on the floor and sobbing listening to the same song over and over again, praying that God would bring our baby girl to us. I remember Jason coming in after I had cried for a while holding me, and reminding me that God would bring her in His timing.
I remember the three months between her birth mother choosing us and her being born. I folded, reorganized, put things away, moved them, listened to baby music, and just sat and imagined what it would be like. Nothing I imagined came close to how wonderful it is.
I remember sleepless nights with a little girl nursing all warm against my skin. I remember rocking a little one when she had a restless night. I remember a few week time period where she had trouble napping and we would both cry as I rocked her and nothing would soothe her. I remember tip toeing in to see that sleeping baby with her butt up in the air and her right thumb in her mouth...snuggled in and looking innocent and perfect.
I remember sleepless nights after the diagnoses wondering if she was in pain, and what the future would hold. I remember nights of breathing treatments every few hours because she was having asthma attacks.

And now, well now she climbs up in the chair to rock by herself. She gets down and walks over and lays down on her bed. She is a "gigirl" who didn't stay a baby as long as I thought she might. And although I love our toddler, sometimes I miss that sweet little round baby that would snuggle in and suck her thumb while I rocked her.

And down the road I have some pictures of what that room will hold. I can see a dancing little girl twirling about her room, more tea parties, playing house, slumber parties with little girls giggling all night and not getting sleep, crying over things that are hard in junior high and high school. Late nights sitting up and talking, just her and I, about life, Jesus, being a girl, and so many other things.

That room is such a special and wonderful place. Stepping into it causes a flood of memories of our lives over the past five years. And really, it has all gone by too quickly. I love the age she is and try to drink in every moment with her. The way she covers her mouth and does a fake giggle. How she flails her arms while she is babbling nonsense and then waits for you to respond. The moments when she kisses and hugs me just because she loves me. The way her face lights up when papa gets home from work. The little words she says that nobody else understand, and that will some day come out correctly. There are so many things about being a parent that are so very wonderful. And yes it is hard. But really I can't think of anything that is beautiful and wonderful that isn't hard. It feels a bit like someone tugging on my soul a little at a time. Sometimes I am so full of love and pride I feel like I could explode. And sometimes I am frustrated and wish that she could understand how much pain she could forgo if she would only obey. And then there are times when I am just scared for her and what her future holds. Although her diagnoses plays into this, I'm pretty certain I felt this way before we knew anything. But I wouldn't trade a moment of our lives away. I don't care if she is special needs, if she doesn't look like us, or if she isn't perfect. Her little giggles make the world a better place. And our lives have been forever changed by a round faced, curly headed, beauty!
Loving it,

Sunday, August 1, 2010

Thankful Sunday

All right I'm doing another thankful Sunday. But really, don't expect it all the time. I just had already decided that I needed to share how blessed we feel right now...and it happens to be a Sunday.
First of all the group I mentioned before that has adopted our family and brings gifts to our girly and us just dropped off another gift this past week. They have given us money before, and we put it in an envelope and marked it "Riley" so we have it for the parking garage and meals (although we use it at her Indianapolis appointments that aren't at Riley as well). Anyway, we had our oil changed last week and asked the guy to check our brakes. The verdict was they needed changed. We are blessed that we have a friend who owns a mobile mechanic service. So he could do it and it is not as expensive as most places. We still weren't sure how soon we would be able to come up with the money. However, true to His nature, God showed up to meet our need. The group (actually a family that is part of the group) showed up with presents for Abigail and a card with cash for Jason and I. Now if I'm honest I would have much rather done a date night with Jason, but we decided that the timing was such that perhaps it should be used for new brakes. And so it will be.
I mentioned in our last post that we had signed Abigail up for ballet. To be honest, we weren't sure how we were going to pull off the finances for it every month. We knew it would be good for Abigail, and decided that we would do what we had to so it would work. I offered my domestic services (cleaning, sewing, crocheting) to anyone who might have something that needed done. Jason talked about delivering newspapers. We chose to give up our occasional (probably too occasional) sodas from McDonald's that make us feel happy some days. We were going to buckle down because this would be great for Abigail. And we have been buckling. And a wonderful friend gave us money this morning that will finance quite a few months of ballet.
We have been blessed with quite a few gifts over the past few months. We are mostly fine with our lives being what most would consider simple. We are fine with meals at home, one car, and no cable. We enjoy the freedom of being cell phone free. I love saving money through clipping coupons, shopping at different stores for different things, and finding free events to attend. But sometimes it does feel extra nice when someone gives us a gift certificate or money and says "go out to eat." Or even "go out on a date."
And at the end of the day as I sit on the couch I feel undeserving. We have not always been great with finances, but have gotten better with each passing year. We live simply, budget hard, and know that had we done better early on we wouldn't be here now. We are making our way slowly towards financial freedom and have eliminated all of our credit card debt. We have only a car, two student loans, and a house left to pay off. But sometimes the debt accompanied with things like needing new brakes, or front steps, starts to feel overwhelming. We wonder if we will ever be out from under the hold of other companies and banks. And then God reminds us that money is nothing to Him. That He will provide for our needs. And then He shows up even greater and provides for things like a meal out as a family, and our sweet little girl being able to take ballet. So to our friends, and the wonderful group who has blessed us, thank you. And to a God who cares about all things, thank you for always providing. We pray that someday our finances will look much different so we can bless others as much as we have been.