Tuesday, September 29, 2009

righteous anger

It's been a long day. Abigail started running a fever last Wendesday. It seemed to be low enough to accompany teething or be a result of shots she had gotten. She never got any other symptoms so I never got worried. Then on Sunday afternoon she woke up from nap with a temperature of nearly 104. It has never been this high so we decided to take her to the walk in pediatric clinic. That is something I will regret for quite some time.

I know these clinics see tons of people over silly things when they were designed for urgent care needs when the doctors office is closed. However my daughter having a high fever with NO other symptoms seems just enough off that it needed immediate attention. The doctor started her exam, someone opened the door she walked out and called back "I'll be back." After a minute she came back and finished. They did a flu swab, and put a catheder in to see if she had an urinary tract infection. I asked for a strep test when the others came back negative. Abigail was a traumatized mess when we left.

So Tuesday morning (today) she still has a fever. I take her to our doctor. She has an ear infection. The doctor from the clinic missed it because this is the part of the exam she left during. So at our doctors office for the first time ever she is screaming and clinging to me because of the events from Sundays exam. I am pissed beyond words. Had the doctor done her job Abigail would not have had to have any of the test.

Before the end of the year we have six more doctors visits. Those are only the scheduled ones if she doesn't get sick again...and now she's afraid of doctors offices. Fantastic. I am praying that she will quickly forget the horrible experience so that I don't hold a screaming baby who's trying to climb up me every time we are at the doctor. Usually doctor visits feel scary and stressful enough to me without adding trying to calm a one year old.

We are grateful for our amazing doctor, but every time I have a bad experience I am made even more grateful. We love our family doctor, and appreciate how much she cares about us and our baby bug. Hopefully as Abigail gets older we will continue to find doctors, who take care of each of her needs, that are great. We so far have found a great family doctor and e.n.t. Now for dentist (I've heard great things about the one she is going to), audiologist, pediatric neurologist and ophthalmologist. Then possibly a geneticist and oncologist. Here's hoping to a forgetful little girl and meeting some more great doctors.

Thursday, September 24, 2009

those things that bring us comfort

Abigail sucks her thumb. She does it when she is sleepy, or upset after a fall. She likes to hold onto a blanket as well although she doesn't have any specific one she is attached to. These are things that bring her comfort. I like to watch it. She will rub the blanket on her cheek and put her thumb in her mouth. If I'm holding her she will lay her head on my shoulder.

We have heard all of the warnings why thumb sucking is bad. However we came to the conclusion that nobody we know has gone to college sucking their thumb, nor has it been linked to an increase in illegal behavior. So we feel pretty safe with our decision. There has been research that children who have a comfort object or "lovey" are more compassionate and empathetic. I like it. Abigail already hugs everything (and I do mean everything); so apparently for all of you nay-sayers out there, we have caused our daughter to be more kind and caring.

As an adult it's not quite as normal to have an object of comfort. We often turn to favorite foods, television shows, or people. Although we have heard that children feel more secure in a home where the parents love each other it has been amazing to watch. I turn to Jason when I need comfort, and he turns to me. Either way anytime that Abigail sees us hugging each other, or snuggling on the couch she will look at us, smile, and say awawawawawawaw. This is the same noise that she makes when she is giving someone or something love. She is comforted by the thing that also brings Jason and I comfort. This is truly phenomenon to me. Our God made us creatures that somehow know from a young age that our parents are supposed to display affection with each other. Freud might have been wrong in all of his theories. Abigail is not trying to compete. She is comforted by our love for each other.

We love family life,

Monday, September 21, 2009

i will rejoice and be glad in it...

Okay this one is another semi-mushy mom blog...so you have been warned and should not read it if you don't like them.

I have never once felt the guilt of "worthless" feeling that a lot of stay at home moms struggle with. I did not give up a career I love, social status, or lots of money to stay at home. We did have to scale back in some areas with money, but nothing that wasn't more than worth it to both Jason and I. I also have a husband who truly values the choice we made. He tells me so often how thankful he is that I stay home with our baby, and take care of the house (mostly). So between those two areas I haven't ever once looked back and wondered how our lives would be different.

I don't really respond to people who tell me I have it so easy, or that think that working outside the home and having children makes them more super-human than me. Both things are hard, and each has it's good points. However the idea that I sit at home and watch television, read gossip magazines, and talk on the phone all day is not true.

My job is the most emotionally demanding job I have ever had. I have one person who I am attempting to grow into an independent, functioning adult. This task is not easy. I spend my day repeating the same things over and over and over and over....and over. I talk in toddler talk all day long "Do you see the doggy? What does a doggy say. Be gentle, good job, pet gentle." Sometimes when Jason comes home he has to say to me "I'm not a child so please don't talk to me like that." I'm not trying to patronize him, it just always comes out that way.

Today though (as happens most days) I feel like my heart could explode. Watching this small being crawl after me and giggle, play peek, and lay her head on my shoulder to hug me makes me feel so full I could burst. In the back of my mind is this voice reminding me "She won't stay like this forever. Capture every moment, and hold onto it." It makes me sad, but at the same time spurs me on to be on the floor more, read the same book ten times before I say all done, and to have a giggle time with her everyday.

I feel so incredibly blessed to have this little girl who adores me. I struggle (as well as most parents I know) with feeling like I am messing up so much. However her grace has to be close to that of the Lords because she always forgives and seems to not remember that I just did something stupid. I like this quality in her, and hope that it will rub off on me :)

It's so amazing to me how much she has changed me. I love Jason more than I could ever put into words. I don't love Abigail more, but differently. My love for her has made me feel things more deeply. This was the realization that came to me because I kept crying about nf stuff. I have never been someone who is prone to large emotional outburst, but some days I just start crying and have to spend a few minutes sitting there until I am under control again. I cry at commercials and television shows. I cry after we put her to bed because I can't do anything to help her with what lies ahead. All because having a daughter opened up this well of emotion in me that I never knew was there. I like it too. I am glad that I have found this part of me that is passionate about my family. It makes me a better wife and mother.

I am truly thankful for each day that the Lord has made, and given me to spend with Jason and Abigail. I am also thankful for each day the Lord has given me to do laundry, dishes, clean, vacuum, and dust. Life is full and wonderful because I stay at home.

Seizing the day,

Thursday, September 17, 2009

Joy and Hope

I'm feeling that funk. I hate it. It's that feeling of having a good day and coming home to something that reminds me.
I spent a small amount of time with a few friends this morning. Their kiddos and Abigail played while we talked, and monitored interactions. It was nice. It has been a great week of getting out some and enjoying fresh air and time with people I love.
Then I got the mail. There was that envelope with the IU in the corner letting me know it was from Riley. They have sent us stuff before, but this envelope was for her nf appointment. And for some reason sent me spiraling into this funk. It doesn't even have nf on the paperwork anywhere. It was paperwork to fill out and bring with us to the appointment.
But as I'm filling it out I'm becoming more and more frustrated with stupid questions I can't answer. "Do any of your child's blood relatives have this condition." I don't know. Fill in these lines about medical conditions that the mother, father, granparents, and siblings have. I DON'T KNOW!! So I think it just left me feeling doubly helpless between the nf stuff and her being adopted, making it hard to find out her family history.

This evening though she was crawling around and came over to the couch to play peek-a-boo with me. Every time I peak she screams in excitement. Then I decided to really get her at which point we were both laying on the floor giggling together. Oh that beautiful giggle. She then crawls on top of me lays her head on me and says "awawawawaw," and sits up and smooches my mouth over and over like those little birds that you can make drink water.
We are her family! Genetically it may not be helpful in knowing things, but I love her more than I knew was possible. Momma and Papa aren't neccessarily those that were there for her conception. I carried Abigail in my heart for three years. That's a long time, and a lot of aching along the way. And oh the joy that our daughter brings. Not our adopted child, or the baby we ended up with; our daughter.

Abigail Tohelet...it means "father's joy" "hope." She brings joy always, and reminds me to hope when I feel like things are bleak. Although there are still times when all I can do is sit on the floor and cry, when I see her I remember the story of how she came to us. Her whole life and coming to be our child embodies hope, and that's all I can do now as we prepare for more appointments. Hope.

Filled with joy and hope,

Tuesday, September 15, 2009

meaningless meaningless...

For those of you who don't know this is how the book of Ecclesiastes starts. It goes on to talk about how life is meaningless. It's a pretty depressing book written by king Solomon. I wouldn't recomend reading it if you are in a bad place for any sort of reason. He talks about all the of the things he has accumulated being nothing really. They don't matter. This is sort of how I feel right now. What's the point. We are all going to die anyway...it's all meaningless. I'm not depressed, just feeling ecclesiastical.

It's interesting because usually out of Jason and I, I am the one who can bring in hope. I can see the good in things while Jason tends to be a pessimist (realist in his words). I am still clear headed enough to realize this is just part of the proccess of dealing with life right now, and is an acceptable way to feel. I don't need people to write me with the lines about "let go and let God" or any of the other things that are said to people during hard times. Although these are supposed to be helpful they generally make me feel like vomiting, or punching someone. I know what the Bible says, and who God is has not changed.

Our pastor talked about Hebrews 12 on Sunday, and how as Christians we are promised hardships. It's not something included in the lines that people give when trying to lead others to Christ. Hey Jesus died for you and if you accept Him and live for Him things won't be easy. If someone had said this to me I doubt I would have asked where to sign up. I would have said no thanks life is hard enough without that gaurantee of struggles.

Here I am though. As a result of living my life for Christ my relationship with my family has changed. I have lost friends. I live in an area that some people avoid driving through. My husband works for a company that is about people's lives instead of just being a job therefore he doesn't make as much money as he "could."

However, as a result of accepting Christ I feel a peace that I didn't know before. I have some amazing friends whom we share life with that are there for us in everything! Although we may not have a lot of "stuff" we are taken care of always with enough to eat, being able to pay our bills, and saving for the just incase moments. We have an awesome marriage. We are attempting to be great parents (and doing okay I think). So while I am here on earth for a small amount of time, even if it is all meaningless, there are lots of things I can enjoy. Just look at the pictures of this beautiful little girl. How could I not enjoy it.
Hoping to find enjoyment in this meaningless life,

Tuesday, September 8, 2009

and so what we have learned...

okay, this may not actaully be what we have learned, but hopefully you all have the veggie tales song in your head now!

The three day weekend was GREAT!! We got to do fun stuff as a family, spend time talking, laughing, and crying. We went to the farmer's market, hung out with friends, played at a park, and went hiking. It might not get much better than this. I was pretty sad Jason had to go back to work.

We did spend time talking about nf and what is coming. I think we both have accepted that she has it. It makes us both very sad. I will not go into all of the things we talked about and what things mean now because there are some things we aren't ready to share with everyone yet. However the biggest thing we talked about was mortality. Now the tumors she has are most likely benign. It is very rare for them to be malignant.

Most people realize at some point that they are going to die. We all will. However very few people think about the fact that their children will some day die. The natural order of things is that they out live us. This is the reason that when people lose children it seems so much harder than losing a parent or spouse. Even though these others are hard, it is something lots of people go through and can relate to.

However, as we are learning more, and trying hard to face things realistically I can't help but think that there is a real possibility I will out live my baby. This isn't saying anything definitive, just that it is a possibility. Every time I think this though it is accompanied by that still small voice reminding me that His grace is sufficientfor me.

Right now we are on a list for Abigail's appointment to be moved up if there are any cancellations. So we are praying for one. Usually children with nf don't even have anything beyond the cal spots until between four and eight I think, and tumors are rare before puberty. So we aren't sure why things seem to be showing up all of a sudden, but think that it warrants investigation!

We are feeling the peace that comes with all of your prayers. As we come to the Lord over and over on behalf of our little girl it is great to know there are others at His feet asking for the same things we are.

"The Lord your God is with you,

He is mighty to save.

He will take great delight in you,

He will quiet you with His love,

He will rejoice over you with singing."

Zepheniah 3:17

Glad that this who our God is,

Friday, September 4, 2009

the world of nf

Abigail taking her last bottle...

Another day, another thing to worry about!! That is how everything feels with nf. I have been trying to research a lot lately so that when we go for Abigail's appointment at the nf clinic I am not taken by suprise. I want to make sure I know as much as possible so that I don't feel like I did in May; because I don't remember much of what the doctor told us. So if I go in knowing as much as I can I won't be thrown off, and hopefully will better be able to deal with whatever the doctor tells us.

In all of the research I feel like I have learned things that have calmed me some, and things that scare the hell out of me. Although I know that nf varies from being nothing to killing people I hadn't let myself go quite that far in the things that could happen thoughts. So last week I was looking online and found a blog about a little girl with nf. After I read about three entries I realized she had died from it. In the third entry there was an eulogy from the funeral of a little boy who had also died from complications with nf. However the eulogy did a great job summing up what I have not been great at putting into words yet.

So now I will start with my thoughts on nf and God. I DO NOT believe that God gave my baby nf. I do not believe he is "testing" Jason or I in any way by giving us a child with nf. I do not believe we or anyone around us has sinned in a way that we are being punished for. I believe that Abigail has nf because there is sin in the world. When sin entered the world, so did sickness and death. That's it. There are tons of questions that can be asked after that, but I don't need to ask them yet. It's fine to ask why, how, and a myriad of other things, but we haven't needed to yet.

I do believe He can heal Abigail if He chooses. I also believe that whether nothing else ever happens with nf, or whether we lose our baby bug way too early, He is God and He is good. Although our lives have been rocked with this new buzz word, God is the same as He was before we knew about it, and will be the same forever. The best example of this I can think of is still the story of the three men in the fiery furnace. They were going to be thrown in if they did not bow down to something else. There response was beautiful (this is a paraphrase); we believe our God can save us, but even if He doesn't, we will still not bow down to your idols. We believe our God can heal/save Abigail, but even if He doesn't we will not bow down to anything else ever.

So I'll end with the hard part of our Friday. I made a doctors appointment for today with our family doctor. She looked at the two spots we had noticed on Abigail. She confirmed what we already had discussed (and maybe somewhere in our heads knew). They appear to be neurofibromas. Tumors. Makes for a rough Friday. Sometime next week we should be figuring out how to move her nf appointment up.

So Jason and I will spend the evening, and three day weekend, hanging out with our daughter and talking. We aren't up for talking with everyone else about it right now. We are in need of prayers. We are doing "okay" but are both sad for what may lie ahead for our daughter. Thanks for all of your love and support.

Enjoying our daughter,

Wednesday, September 2, 2009

Happy Birthday Baby Bug...

Abigail before her party...in the shirt mama made...

It's official...Abigail is one today! We had her family party Saturday. It was great to have everyone here to celebrate, and we were thankful for the toys, books, and clothes she got. She is enjoying all of the new items as well. It was also nice for our families who both live at least a few hours away each to see some of her new talents, and to be with her in a familiar setting. She was very much herself for the party. She is often a bit shy around people, but thankfully being at home helped that to not be an issue.

Abigail eating her cupcake...she prefered the blueberries though!

Abigail opening presents...with a bag on her head...silly papa!
We celebrated today by giving her a book we made on picaboo called "Family Ever After" which is Abigail's adoption story with our pictures in it. We are excited about it, and it is really good quality so it will last the rest of her life! We also had ice cream with friends at the local place called Sally's. That was nice too because they were all people who waited with us for Abigail...some for the three years, and some just for the last part. So overall it was a pretty great birthday, and she is sleeping soundly now!! This post will mostly just be lots of pictures....enjoy!

Abigail and mama reading her adoption story book after she opened it...

Parents of a one year old,