Wednesday, December 29, 2010

Complaining and Contentment.


I haven't posted any pictures for a few post, and I have lots, but they are for a different day. So here's a little peek: Abigail and Papa at her ballet performance.

Notice the date on this post is a few days ago. The thing is, I have started this post a few times, and then when I come back to reread it, it's just fussy. There have been some frustrating things in the past few weeks with doctors and prescriptions. And perhaps some would say that I have a right to be fussy about it.
The truth of the matter is that if I start fussing and complaining, the next thing I know I'm in the desert cursing the provisions of bread and meat, and clothing that doesn't wear out. And all of that just leads to more and more whining and complaining and leaves me in the desert even longer.
I often hear people say that it's fine to complain about things or to vent. I can't find anything in the Bible where that is the case. I only find things about rejoicing in the day the Lord has made, and rejoicing in the Lord always.
Please don't read that as saying if you are in a painful circumstance that you must just be happy. There is a huge difference between sorrow, righteous anger, and complaining. King David never complained about his circumstances when he was hiding from King Saul. He did cry out to the Lord, ask questions, and lament about the situation.
Complaining and fussing often stem from a false sense of justice, and are things that often could be changed by your own doing. Let's take gas prices for example. Everyone complains about how much gas cost. Most people would tell you that they can't do anything about it. You can. Drive less. Choose a gas efficient car. Go grocery shopping with a friend to cut gas in half. In technicality those things don't change the gas prices, they do however change the amount you spend on gas.
I made a conscious choice a while ago to do my best not to complain. I have found that since I stopped complaining about things I don't like about myself, I have stopped finding as many flaws, not only in my, but in others. I have even started to find the things I like about me and be able to tell other people what I like about them. This holds true for things like not complaining about my husband, my daughter, our finances, our house, and so on. If I choose to see the good in my husband, my daughter, and my life, I find myself enjoying a place of contentment.
I hope you noticed the beginning of this being about how I was writing things that were fussy. This post was mostly a reminder for me about why it's important to CHOOSE contentment over complaining, venting, and being fussy. I can always find a valid reason to complain. Finding a way to be content requires so much more of my sinful heart being transformed.

"I am not saying this because I am in need, for I have learned to be content whatever the circumstances. I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do all this through Him who gives me strength." Philippians 4:11-13



Still learning to be content in all things,

Monday, December 27, 2010

Another little one.

I have always had some sort of heavy draw towards people with special needs. I am not certain that I can even trace back how old I was when it started. I remember playing with the boy in my first grade class that was in a wheelchair. He could whip me at basketball. And as I got older I remembered being drawn to try to befriend the other kids who got made fun of for being in remedial classes, getting extra help, and so on.
I spent seven years from junior high until I graduated volunteering in the special education classrooms during my study hall. I also had a cousin who had Down's syndrome that I adored. She was just a bright, funny, happy, and stubborn girl who loved country music and people.
Nobody was surprised when I chose special education as my major in college. However, I quickly realized that although I enjoyed working with people with special needs, I had no desire to teach.
Since that time I have done respite care for families of children with special needs, had a nephew born with cerebral palsy, and am now walking the road of a child with special needs myself.
And as Jason and I find ourselves discussing kiddo number two, whether to pursue another child with NF, adopt domestically, older child or infant again and so on and so on; I have had one thought alone.
When we found out about Abigail and how old her birth parents were I was prepared for a little girl with Down's syndrome. I was almost shocked when the ultrasound didn't show it. We knew she still might have some other issues, but were a little unprepared for how things have unfolded. Don't get me wrong, had we known about the NF before she was born we would have only gone into the situation with more knowledge about NF. Abigail would still be where she is right now.
Since that time though I have learned a lot of new things about Down's children and have been more and more drawn to adopting a child with it.
We are told in Matthew 25:40, "Whatever you did for one of the least of these brothers and sisters of mine, you did for me." And hearing that in America, 90% of pregnancies where the child is found to have down's syndrome end in abortion, tugged on my heart making me feel like this is one of the least of these. Then I read how in other countries children born with down syndrome are put into orphanages. If they aren't adopted by the age of 5 they are then sent to mental institutions where a large percentage of them die in the first few years from neglect. And those that don't will live their lives hidden from the public. Societies, ours included, are throwing these children away. These children are the least of these.
So with each new thing I read and think about my heart feels like it's being drawn more and more to adopting one of these precious little ones. Jason and I have talked about it quite a bit. Much like I did with Abigail, I feel very much like we are "expecting." Don't get to crazy when you read that. We were expecting Abigail for three years. :) We haven't even so much as begun the home study process. We are at the very beginning where we are praying about the child God has for us.
I often wonder if I could handle two children with special needs. More doctors appointments, more therapies, so on and so on. Every time I think this though, I hear, "My grace is sufficient for you, for my power is made perfect in weakness." I know that to be true. With infertility, waiting on a baby, and hearing a diagnoses for Abigail, God's grace and mercy has grown with our need for it. And I know that if we add another child with special needs that His grace will continue to grow.
And as always our God likes to give us little presents, things that help us to know that we are hearing from Him, even if everyone around us might think we are crazy. So I will end with a little story that made my heart flutter and my eyes well up with tears.

On Thursday we had to stop by one of Abigail's doctors offices in Indianapolis on the way out of town. I ran in to pick up what we needed. As I am stepping on the elevator, a father and his daughter step in as well. His daughter has Down's syndrome. I smiled at them and said hello. The little girl (probably around 5) walked over stood next to me and grabbed my hand. She held it the rest of the ride up and as we walked through the hospital she talked to me. Her dad was slightly embarrassed, but I reassured him that it was fine. When I finally had to let go to part directions I could feel God impressing on my heart that He had planned that moment.

We would love if you would all join us in prayer as we await the amazing story that God will weave for our second child,

Monday, December 20, 2010

Never a dull moment.

I often try to count my blessings, naming them one by one. I have a lot you know. Sometimes though, my counting of blessings come in the form of being thankful for what we aren't dealing with. The thought will go through my head of, 'wow that would be really hard, I'm glad we aren't dealing with that.'
One of the specific things I have said that about if food allergies. Although we had a few iffy moments, at this point she technically only had a peanut sensitivity. We avoided soy because it can exacerbate tumor growth in NF (it's somewhat technical so you will have to trust me). But I didn't have to read labels, or stress out in restaurants about cross-contamination. We have a friend who has a daughter with quite a few food allergies, and I know it's not easy.
It seems though that I now must laugh. That's right, I just cleared our cabinets of anything containing or processed in a factory with tree nuts. Abigail ate her first cashew on Friday night. As she began to eat a second she started raking at her tongue and gagging. I knew almost immediately that she was having a reaction. She (very fortunately) then puked it all back up. I gave her benedryl and she was fine. So I talked to her allergist today and was told it most definitely was an allergic reaction.
I spent the last few days reading about cashew allergies. Apparently although they aren't as common as peanut and other tree nuts they can be more severe. They are also in the same family as pistachios, mangoes, poison ivy and sumac. And as a result she will be at risk for more severe reactions to poison ivy and sumac.
I also read and re-read the directions for our epi-pen so that I could make certain I am 100% certain if I ever have to use it. And I will be making certain anyone she stays with knows how to use it as well.
We are still very blessed. Our lives just never lack excitement I guess. :)

Friday, December 17, 2010

Papa

"Learn to do right; seek justice.
Defend the oppressed.
Take up the cause of the fatherless;
plead the case of the widow."
Isaiah 1:17


I have always found it interesting that the Bible specifically refers to the fatherless. Sometimes the word orphan is used, but often it is the word fatherless. It seems there must be something special about fathers.
One could argue that during this time period being a woman with children and no husband to provide meant certain poverty, and that things are different today. I could agree with part of that. But in reality somewhere around 60% of children who are being raised by single parents live at or below poverty. There are tons of other statistics that go with this that I could throw at you, but the reality is that even today a woman with children and no husband to help provide does not generally fare well.
Where am I going with all of this? For two and a half weeks (minus the weekends) my husband worked two shifts. He would go to work from 11:30 at night until 7:30 in the morning, go to his next job from 8 in the morning until 4 in the afternoon, and then come home and sleep. We saw him a little bit, but all of the parenting and household chores fell to me. Now I will not claim for one minute that I knew what it felt like to be a single parent because Jason was the one providing for us still. I did not have to go to work.
I did realize quickly how important it is for Papa to be around. I was a very wore out Mama. I was short with Abigail much more often than normal, I didn't want to play with her or read books. I wanted some interaction with other adults, and a break from my sweet girl.
This though was nothing to the difference I saw in Abigail. Our girly is generally a mild mannered easy going toddler with her moments of two year old behavior being few and far between. But these two and a half weeks were wrought with fits, crying, hitting, whining, and asking for Papa over and over again. It was really hard on her. I couldn't believe the changes in her and how quickly they came on while Jason was away. He finished two days ago, and we are still working the kinks out of her behavior issues.
I'm sure I could come up with lots of theories as to why we saw such a huge change in her. I believe though that what it all comes down to is that children do better if they have both parents. I can't imagine my life long term without my husband being around. I also can't imagine my little girl long term if she didn't have her Papa.
So if you are a single Mama (or Papa); way to go. Seriously, your job is not one I envy in any way. And to my amazing husband, thank you for working hard to bring in extra money before Christmas, but more importantly thanks for providing for you girls in ways beyond a monetary income!


video

Tuesday, December 14, 2010

"Tis the season.

As I was sitting at church on Sunday my mind drifted to Abigail, and where we are right now in life with her. It seems overwhelming at times, but I couldn't feel anything but hopeful. It's a season wrought with hope. And quickly I was reminded of where I was three years ago.
It was the worst Christmas I can remember. I was extremely depressed, and was begging God for a baby. I specifically asked God to bring me a Christmas miracle. When January rolled around and we hadn't gotten that phone call yet I sunk even lower. I was at the point where I was trying hard to let the desire to be a mama just die. But March came, and with the melting of the snow my heart seemed to soften a little too. And in April I sat praying one afternoon and heard God tell me to pray that our Abigail would come now. So I prayed, and called and asked others to do the same. The rest of the story is that in May we were chosen by Abigail's birth mom, and in September she was born.
However it wasn't lost on me that in December, when I was praying for my Christmas miracle, Abigail was being conceived. What I thought would be a miracle, and what it actually ended up being, were different, but beautiful none the less.
And so as I sit here during this season of advent, "expectation" I find myself unable to do anything but hope. I feel the hope that was born over 2000 years ago. I hope for the return of my Savior. And I hope for another miracle for my little girl.
The official update is that we went to the neurologist this morning and all signs point to a plexiform neurofibroma (although the doctor couldn't technically diagnose it because the MRI didn't make it clear). These specific type of tumors are much harder to deal with than regular neurofibromas. So for this reason we will be consulting with a surgeon to see if we can have it removed early. We also will have the added weight of having to cover whatever cost of this procedure and appointments ourselves. Our insurance will not pay for it because it is out of state and considered elective. However the doctor we are seeing is the best of the best and world renown for removing plexis. So we will figure out the finances for it.

Leaving you with the theme of the last six years of our lives, hope,

Saturday, December 11, 2010

Hey jealousy...

...not the Gin Blossom's song. This morning we took Abigail to practice for "The Nutcracker" ballet performance coming up. I was sitting next to two moms of other girls in Abigail's class. Abigail is the youngest girl in her class, but I think both of these girls are around 3.5.
Anyway, as it always is with parenting, the subject of sleeping came up. There was discussion of the woes of kids who won't go to bed early, and who get up way too early. We don't really have this issue with Abigail so when it came to my "turn" to complain I just smiled and told them how Abigail is a great sleeper.
And then came the normal responses, "You are so lucky," and "It will be over soon." I took a deep breath and laughed a little like I knew. But that's not how I wanted to respond.
I wanted to tell both of them that although Abigail is a great sleeper, if she has a rough night it's because she's in pain. I wanted to tell them that after four MRI's and more doctor's appointments than I can count at this point that it seems like I could use something like a good sleeper to balance it all out.
I wanted to say lots of things, but I didn't. I am very aware (and often told) how easy Abigail is. I know that she has a layed back personality, is a great sleeper, was easy to potty train, and so on. I also know that none of those things are what truly make a parent's life easy or hard.
Most of the things parent lament are phases. Lots of them are hard phases, but still things that kids will outgrow.
But I promise you that I have gotten up with Abigail well before 6:30...to take her to appointments. I have watched her fight sleep...with an anesthesiologist holding a mask over her face. I have listened to Abigail throw a fit...as the doctor pokes her to take blood.
So remember when you are comparing your child to someone else's who is "easy" that you may not know what is going on behind the scene. I wouldn't want to trade any part of our life with someone else's. I just want people to remember that things aren't always what they seem.

One of my favorite high school teachers used to say this to us all the time, "Be kind, for everyone you meet is fighting a battle." Remember that next time you get ready to tell someone how lucky they are and how hard you have it.

Thursday, December 9, 2010

On beads and things.

I know I did a post before about doing Abigail's hair. It is something I love. I often find myself feeling grateful and proud at the same time for the amount of time and effort I put into learning about her hair.
Today though as I sat and braided and beaded for probably close to five hours I couldn't believe how long my little girl's hair had gotten. So I decided to post some pictures from over the last couple of years to remind me of the progress and to show you how beautiful she always has been. :) Enjoy!
Abigail at one day old. The tube is an NG tube, it wasn't in long. But I already had a bow in her hair. Her birth mother thought it was hilarious that I was already loving it.
Abigail at a few weeks old with two bows in her hair; pigtails if you will. She is also showing us her early favor of that right thumby!
Abigail at a few months old. I always thought those headbands things were silly and I wouldn't put them in my kids hair. One of my friends and I joked about it. And then I put one in and it looked SO stinking cute on her (my friend said she was the only baby she had seen who could pull it off)!
Abigail's first set of beads around her first birthday. The top of her head was about the only place where she hadn't lost most of her hair. But it grew back quickly.
And tonight before bed, she was laughing really hard as she fell back on the couch and made all of her beads "click clack."
Enjoy the progression of her hair, and her beauty. :)

Monday, December 6, 2010

I'm doing okay.

Really I am. And by okay I mean I haven't fallen apart, despite the fact that I probably have the right to. And I'm fine. By fine I mean that I have held it together when people have said trite things that make me want to punch them and tell them to come back and talk to me when they have experienced something outside of a "healthy child." And the stomach flu doesn't count.
Perhaps it's because we had Abigail's IFSP today. Perhaps it's because I STILL haven't heard back from the doctor and am beginning to get pissed about it. And then just maybe it's because I feel like the world is completely outside of anything I can control, but I'm having a rough night.
I looked at my daughter tonight and wondered what kind of battle was waging inside her sweet little body that I couldn't see. I seem to swing between peaceful and scared to the core of what might happen over her lifetime...whatever the length of that might be.
There are some probably "little" things that have followed the large blow I felt when I stood listening to the nurse read the MRI report to me. Emotionally I felt like it was a blow that just immediately leaves you lying on the ground unsure if you really want to get back up again or just try to do life from the fetal position you are in.
And then as you are lying there, trying not to think of the pain you move the wrong way and it send that surge through your body. There was first the realization that even though Abigail loves to dance and play basketball, neither of those things will be long term options for her. And then came the moment that I was told that Abigail would qualify for a Make-a-Wish trip one day. It's one of those charities everyone knows about, and has an immediate reaction when they think about kids who get to go on those trips. Not a bad or good reaction, just a reaction. And it's not one where you think, "I hope my kid gets a trip like that someday."
But really as I sit here tonight I want to scream the pain out. I want to yell at the top of my lungs "Go to hell NF. I hate you and everything you do to people. I hate the pain, the uncertainty, and the havoc you reek on children, adults, families, and lives." But NF can't hear me, and I don't want to wake up my sleeping husband and daughter. So instead I sit hear with a heavy heart wondering if the pain will ever decrease. I have my doubts.
I will leave you with a few thoughts. I love the story of Shadrack, Meshach, and Abednego (it's in the book of Daniel 3 if you want to check it out) and the words these men speak as they are getting ready to be destroyed. I know people often have questions along the lines of how do you continue with a faith that "allows" something like this to happen. And it might be easy to walk away, and to put my hope and faith in doctors, medical research, and a cure. None of those three things are bad. They just aren't where my hope comes from, and if I begin to put it there then I am bowing down to something other than my God. So here are the words of these three men:
"If we are thrown into the blazing furnace, the God we serve is able to deliver us from it, and He will deliver us from Your Majesty's hand. But even if He does not, we want you to know, Your Majesty, that we will not serve your gods or worship the image of gold you have set up." Daniel 3:17-18

I'm certain I have said this before, but no matter what happens with Abigail's NF, I will not bow down to anything other than the One who can save her. Because even if He doesn't save her from the NF here on earth, she will experience life without pain, tumors, or any of the other labels doctors have given her. She will one day be able to run, jump, dance, and walk with no struggles. She will some day be free.

Leaving you with this song to go and listen to. It goes hand and hand with the verses above in my heart (it's on youtube so I'm not endorsing the video in any way).

Friday, December 3, 2010

Praying for monkey.

The other day I heard Abigail coming down the steps. The next thing I knew it was quiet. I peaked around the corner and she was sitting on the step rocking her baby and patting her back.

I have an incredibly compassionate daughter. I am often blown away at how sweet she is with her baby dolls and stuffed animals. She sometimes even hugs and kisses inanimate objects (like our blue car). She is a little girl with a very big heart.
She also has begun to pretend all the time. She cooks when we cook. She likes to dress up, wear a purse, go shopping, drive her car, and about a million other things. It's fun to get to see your kids act things out. It gives you a small glimpse of how they view life. Sometimes I see things that make me realize I might be doing okay as a mama. Sometimes I get a reality check and realize I have some things I need to do differently.
In general Abigail is just becoming more aware of things. She is interacting more, and remembering (and retelling) more. This past week she was sitting on the potty and looked down and saw a few of her cafe au lait spots. She asked, "that?" I told her it was called a cafe au lait spot, but we just call them her chocolate chips and pretended to eat one. She later showed her papa and told him it was her "chochit chip." There is both joy and sorrow in having her realize she has spots on her. She is not self-conscious yet, so it's nice to tell her about the spots before she is old enough to experience the teasing from them. It's sad to know it is something that she may not always be comfortable with. I hope and pray that we tell her how beautiful she is enough that these spots won't matter some day.
A few weeks ago we got a hand me down cozy coupe car from her cousins. She LOVES it. However when she got in it the first time and told me she was going to the doctor I felt a small sting of pain. She is really good at pretending with her doctor kit. She knows what everything in it is for. It's pretty cute most of the time (although if you are her patient it's a bit more like getting beat up). I just can't help but think at the same time that if it wasn't for the combination of asthma, NF, and the incredible amount of time she spent with "common illnesses" the first two years (it seems to have slowed down) she would not be as great at it. I mean really, what two year old knows what a blood pressure cuff is, and that it squeezes your arm. But she is pretending what she knows. Driving to the doctor, and getting checked out.
But probably the biggest blow has come this past week. As we continue to wait (impatiently) to find out more from the doctor about the tumor in her leg, she continues to have a little bit of pain and an inordinate amount of itching (very common with NF, and NF tumors). She has started telling me that her stuffed animals and baby dolls have boo-boos on their leg or that they itch. It is such a "normal" part of her life that it is acted out in her pretend play. There is nothing that tugs at a parents heart like seeing their child act out their medical issues.
Like I mentioned above though, there are moments in her pretending that I think we might be doing okay as parents. And even though their is sorrow in watching her pretend her monkey has a boo-boo on his leg, I can't help but overflow when I watch the scene unfold:
Abigail, "Muhnee boo-boo, leg. Swatch."
Mama, "Monkey has a boo-boo on his leg and it itches."
A, "Uh-huh. (Hugs monkey to her) Sowwee muhnee boo-boo. (Kisses him) Pway. Jeyuh, boo-boo, swatch, amen."
Sometimes she asks me to pray for her animal, but most of the time she does. And whenever she is in pain or extremely itchy she asks Jason or I to pray.
So even if I mess up lots as a parent (and I do), I am so glad that the thing she has picked up on is that we can always go to Jesus. He is the author and perfecter of my faith, and He is using a sweet two year old to grow it in ways I never would have imagined.

Thankful for the trials of life that draw me closer to Him,