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,

Tuesday, November 30, 2010

and again why we pray.

Okay first of all if you haven't yet please read "Why we Pray." It proceeds this post and will help you follow the whole story a wee bit better. I'll wait here until you get back.
Welcome back. So the rest of the story goes something like this. We first found out about NF in May of '09. Abigail was mostly diagnosed (this is a little complicated to explain) in October of the same year. I'm not sure how long it lasted, but I spent many months...probably close to a year in a sort of fog. Every new spot, cry, and bump on her skin sent my head into a spin. I sat worrying about all of the worst things that could happen. I'm sure it didn't help that in that time period she was also diagnosed with asthma and tested for leukemia. None the less, I felt like someone had screwed up my whole world. And like the Israelites, even after seeing God touch my daughter's body, I still wavered crying out to God, "Where are you? Did you bring me into parenthood only to take the little girl you blessed me with in the first place?"
But somewhere in there I began to not just speak it, but really believe that God was still who He said He was. He was still good. He didn't give this to my daughter. It happened simply because of the sin that is in our world. When man fell in the garden, death, disease, pain, and suffering were introduced into being. Fast forward quite a bit and you can look around and see the effects of sin coming into the world. One of those effects is the disorder neurofibromatosis.
Somehow though, almost miraculously, over the last six months I have found peace. I have begun living again, and even with lots of crazy things still happening, new little things coming up, and three MRI's since June, I have been fine.
The honest truth is that it's still painful. Not knowing how much suffering my child will endure, but knowing that she will most likely experience pain is grueling. But over the last year and a half God has strengthened me. I feel like I can endure whatever comes because I know He is there.

"The Lord gives strength to his people: the Lord blesses his people with peace." Psalm 29:11

He also does all things at just the right time. If they had found any tumors in the beginning of our journey I would have possibly had a mental breakdown. That is not an exaggeration. But on Wednesday when we got the preliminary results of Abigail's MRI and found out that she has a tumor I felt strangely peaceful.
I have spent time grieving. It is sad to me that the pain she is experiencing in her leg (and most likely her back from compensating) is because of something being in her leg that shouldn't be. The incredible itching she has in her leg is also from it. But I have not for one moment questioned God. My faith has not wavered.
We still do not have a more precise statement from the doctor yet. But it is most likely that the tumor is congenital. It has always been there. It has been the reason for lots of little things going on with her.
I have sat over the past week of knowing and wondered if we hadn't prayed if she would have ever walked. I don't believe Abigail's healing rest on my shoulders, and hope that it doesn't depend upon my faith (or she is in trouble). I do believe that our God is good and wants to hear from us. He wants us to pray, ask, talk, and cry out. He doesn't always answer the way we had hoped. But He does always answer. And for that reason we will continue to pray.

*Just so you all know we have waited to share so we had time to process before going completely out there with all of it. We still do not have all of the information yet, and will not share things until we are ready.*

Please join us on our knees for our daughter,

Friday, November 26, 2010

Why we pray.

At nine months old Abigail couldn't/wouldn't put weight on her legs. If you held her up to a standing type position she would stick her feet straight out. If you put her in the exersaucer they sort of just dangled. We had just found out that she had NF1. I had known for a while she wasn't putting her legs down like most babies did, but kept it stored away for "just in case." So I mentioned it at her nine month check up. The doctor thought it constituted further investigation, and ordered an MRI. Insurance denied it.
So at this point we were stuck trying to figure out what to do. Our pcp could appeal to our insurance company. We didn't have an appointment with the NF clinic until October (this was July). Or we could apply for a state insurance specifically for children with special needs that MIGHT cover it. I felt so helpless to figure out what was going on with our baby.
I was reading in James one night and had to stop at this part:
"Is any one of you in trouble? He should pray. Is anyone happy? Let him sing songs of praise. Is any one of you sick? He should call the elders of the church to pray over him and anoint him with oil in the name of the Lord. And the prayer offered in faith will make the sick person well; the Lord will raise him up." -James 5:13-14
I immediately felt like God was asking me to be obedient to His word. I didn't feel like He would or wouldn't heal her. Just that His word said to have the elders pray. So we did. And a few night later our pastor and his wife and children, as well as two of the elders and their families came and layed hands on Abigail, anointed her with oil and prayed. I could feel God moving. I didn't know what He was doing, but knew that He wanted to show Himself.
Before they all left our pastor's wife held Abigail up and she put weight on her legs. I was astonished, and wasn't certain if I believed it. I couldn't get her to do it again and thought it was probably just a fluke.
The next day we were playing at a friends house whom I had told all of the previous too. I was showing her how Abigail couldn't put weight on her legs, but instead all she kept doing was standing on her legs. I was nearly in tears as I watched it happen.
Over the next few months Abigail began to crawl finally, pull herself up, and eventually walk. With each new milestone I never forgot that God healed her. We didn't know if there was a tumor somewhere He had healed, if the leg issues were from her low muscle tone, or if we would ever know what He had healed. We simply rejoiced at our God's ability to perform miracles. And I still look at her sometimes, standing, dancing, jumping, and (making an attempt at) running and know that God did something, and has something awesome planned for her life.
There is more to this story....so you will have to stay tuned.

Tuesday, November 23, 2010

What do you ask for?

As I sat reading in Psalms this afternoon I could feel my heart stirring. I love the way David writes so truthfully; how his emotions are so much like mine floating up and down with each new twist and turn of events. I also relate because I express my thoughts and emotions much better by writing them down.
After I layed the Bible down I sat there thinking and trying to pray. I say trying because with each fleeting thought all I could come back to was 'I don't know what to pray.' I don't know what to ask for on behalf of my sweet girl going into tomorrow. Peace, comfort, and mercy are almost always at the front of it. But beyond that what else do I ask for.
I can pray that they don't find anything, but in reality they might. I can pray that if they find something God is able to be glorified by our response as well as Abigail's response throughout her lifetime. I can pray for answers.
I then sat and thought about what do I ask for my friend's children with special needs? I generally pray whatever it is they ask for; healing, comfort, peace, and so on. But what if I ask for the wrong thing for my baby. What if I should be asking only for the strength to walk through, but I am asking for answers. And certainly there are no "wrong" prayers. God wants us to ask for things.
As I sat there thinking though, the sweet little prayers that Abigail prays flowed through my mind. They are often something like this, "Jeyah, Guy, boo-boo, help. Sarah, boo, ahhh! Mamal atar, cupcake. Noo noo ding ding. Amen."
I doubt very much of that made sense to any of you. But as her parent, I know what she is trying to say. I know what she is asking for, and I love that she just tells Jesus things. Sometimes her prayers are even more simple than that. I was then reminded of yesterday morning. We woke up to rain. Abigail loves to go outside when it's raining. By the time we ran our errand yesterday morning it had stopped. She asked me if I could make it rain and thunder. I responded by telling her that mama couldn't do it, but she could ask Jesus. She stopped as we were walking into the store and said, "Jeyah, rain, thunder. Amen." Last night as I was sitting on the couch and it began raining Jason looked at me and said, "Is that thunder?" I couldn't help but find the beauty in it. My sweet little girl asked Jesus to make it rain and thunder during a time of year where we are often seeing snow. And it did just that.
So after thinking all of this through I decided to try to pray more like my daughter. My prayer going into tomorrow is simply this, "Jesus, Abigail. Amen."

What do you pray for you children?

Monday, November 22, 2010

As the day draws near...

I've been trying to write a post all day. But all my thoughts just keep getting jumbled together and not making sense. So I erase it all and start over, only to find myself not being able to say what I'm trying to say. So here's the fifth try today.
I am starting to feel the "just before MRI" nerves kick in. They make me want to call and cancel the MRI. They also make me want to demand that they give me the results that day. I got "the" phone call today where they go over the list of Abigail's diagnoses and special needs, arrival time, and when she can no longer have food and drink beforehand.
It feels MUCH scarier this time. Because before we didn't know about the possibility of mastocytosis; and she may not have had it then. And now, the whole time she is having the MRI I'm going to be wondering if she is having a reaction, going into anaphylaxis, and if we will end up in the hospital for Thanksgiving.
I think I asked the lady three times if they were doing things differently because of it. She assured me that she was the first appointment of the day so they could do something (I can't remember what it's called) to take the extra precautions. But really is that supposed to make me feel better. So you guys are ready should she go into anaphylaxis, but can't we just avoid that.
But Wednesday I will get up and drive to Riley, do the procedure, and we will go to McDonald's afterward. She will be her almost normal self by the afternoon. I will feel relieved it's over, and anxious to get the results. And of course I will most likely have to wait until Friday because of Thanksgiving.
And from there I don't know where we will go. Because I've never had anything but good results. And I don't know what to expect this time. I don't know how to react if they find something. I think I know where we will go from there based on my countless time spent researching, but in reality how do you decide between a risky surgery, chemo, or "wait and see" for your child; knowing that all three hold huge risk. And if she doesn't have one, how do you rejoice when your other NF friends are dealing with optic gliomas, plexis, and migraines in their children.
It's pretty incredible how sitting in the doctor's office on May 6 of 2009 totally changed my life. I have amazing friends I would never have known. Thank you Tara, Cindy, Bridget and Vicki. I have learned so much. During Abigail's re-evaluation the other day I answered a question they asked and the woman looked up at me and told me I sounded like a doctor. Yes, I am becoming a wealth of knowledge about many things medical.
And some days a small part of me wishes we weren't here. It wishes that when Abigail is pretending she wasn't so good with her doctor kit. It wishes that our money and time could be spent on driving to Indy for fun things like the Children's Museum, and Connor Prairie.
But then Abigail wouldn't be Abigail; and that thought makes me sad. I wouldn't have met the woman I mentioned above; and that thought makes me sad. Yes it is both the beauty and pain of living in Holland that I am feeling right now.
You can of course feel free to pray that I sleep well the next few nights, that the doctors extra precautions are the correct ones for keeping Abigail from having any sort of reaction, that results come quickly, and that we continue to find peace that surpasses all understanding.

Taking deep breaths,

Tuesday, November 16, 2010

A lot of things jumbled in one post.

It's been a week filled with middle of the night nebulizer treatments, phone calls to figure out appointments, and the dreaded re-evaluation by early intervention (called first steps in Indiana). It's also been a week where I have spent much time thinking, thinking, thinking....because that's what I do.
Why is her asthma so bad? Is there something going on we can't see? Why is it only at night time? Am I ever going to sleep through the night again? And the inevitable call to the pulmanologist I have waited too long to make only because I don't want to have to increase her medicine, or make another Riley trip since we have three in the next three weeks. But after the emergency room trip earlier this week for it, and the lying awake for an hour after her treatment last night...waiting for another attack, I decided for both of our sakes I should call.
I also tried to be "smart" and make same day appointments a few months ago. Turns out that despite the fact that I checked (TWICE) the dermatologist appointment is not at the same facility as the follow-up with the speech and language pathologist; and of course there isn't enough time to drive from one place to the next...so two trips it is.
And lastly our re-evaluation. It's such a bittersweet things. I'm not certain if all states are like this right now, but ours is really cutting back on services for children with special needs. We know that Abigail's diagnoses qualify her for services automatically. That doesn't mean that first steps will willingly give them to us. By the standards of the state Abigail has never technically qualified. If the standard says children should walk by x age, and the child is walking by dragging one foot behind them, they still are considered as walking. Yeap. Pretty ridiculous, but that's the way they roll. So the two incredibly kind ladies who have evaluated her before, came and did so today. And for the first time ever: she qualified, based on her lackings in areas. It's great that I didn't have to call doctors to get orders written so that she would get what she needs. It sucks that her lacking is becoming more evident. I do have to counter my "damn the man" speech here with the fact that the providers (her therapist) are not the issue. They are phenomenal. The bureaucracy part is where it gets messy.
So this afternoon I sit. Waiting. Waiting on doctors to return phone calls. Waiting for Abigail to wake up from nap. Waiting for her MRI next week. Waiting for results. Waiting to find out if she has mastocytosis. Waiting for my head to stop spinning so I can send out e-mails to her providers. Waiting to hear when we get to add occupational therapy to our mix. Waiting on life to return to normal...and by normal I mean?

Taking some me time,

Monday, November 15, 2010

Earthquakes

Imagine if you will what it would be like to be in an earthquake. The whole world moving, things falling and crumbling around you. There is fear, confusion, uncertainty. Even after the earthquake stops, you don't feel safe or secure. You know about the aftershocks. You know that earthquakes set off things like volcanoes and tsunamis. The whole world has just shifted, and all you can do is wait for what will come next. Now imagine if you will that you are the only person feeling this earthquake. Nobody else even knows it's happening. You try telling them, but they just don't seem to understand. A few people might be able to look and see that you are in one, but they still don't feel the effects like you do.
It sounds like some weird sci-fi movie. But it's reality for me, and a lot of other parents out there. It's what it felt like to hear a label for the first time. Those aftershocks are every little thing along the way after those words are first spoken; all of the "your child will probably never", and "will have trouble with..." Yes I feel like I live in a world of earthquakes. And like people who live near fault lines sometimes I find peace. Every now and then there is enough of a break between the quaking for me to think things are okay, but then my world gets rocked a little bit.
After a while you learn how to stand, walk, and even thrive while the ground is moving beneath you. You have days that you forget what life was like when things stood still. You aren't even certain how you would survive in that world anymore.
And there are days when you try to explain to everyone else that you are shaking because of world around you moving. But they just shake their heads and walk away. They can't see it moving, they don't want to see it moving. Because if your ground can shake, then that might mean there's could too. So instead they ignore you. They look away and pretend not to notice.
And then there are times when you look up and notice that other woman who also is shaking like you are. You see her immediately at a playground, doctors office, or grocery store. And from the depths of your spirit you cry out to her. You smile at each other and talk about this earthquake world. You walk away knowing that someone else out there understands you.
Some days you curse the quaking wishing it would have never come. You cry and you scream knowing that it won't change anything. And then you pick yourself up and move on. Because although there are lots of really horrible things about not being able to get great footing, there are also lots of really great things about how it has changed your perspective on life.

Hoping the aftershocks are small,

Thursday, November 11, 2010

Two men I love.

This week holds the birthday of two men who have shaped my life. I thought I would share a little about both of them.
Yesterday marked the 87th birthday of my papal. The story is told that when he was born a tea cup would fit over his head. He only went to school through the third grade. Him and my grandmother were married for nearly fifty years before cancer took her. I have never seen a man more devoted. He was by her side caring for her, loving her, and being strong through tears until she took her last breath. There was something so moving to me about the tears that flowed freely as he stood by her casket and talked to people at her visitation and funeral. He didn't hide how sad he was. He didn't apologize for being sad. Instead he talked about the amazing woman he was married to, and how "if she didn't go to heaven ain't nobody going."
If you met him you might describe him as a man of few words. But his heart more than makes up for it. He loves Andy Griffith, and the movie The Fox and The Hound. He likes to eat cornbread and milk. He believes Sundays are for rest. After smoking for probably around 40-50 years he stopped cold turkey. He would give you the shirt off of his back if you needed it. He is the father of six, grandfather of 18, great-grandfather of 25, and great-great grandfather of one (if all my math is correct). One of the coolest things about him, he still works; 5-1/2 days a week. I had the amazing blessing of being able to live with him for a small chunk of time, and I knew that if I grew up and married someone half as amazing as him I would be okay.

My papal, Abigail, and I at her first Christmas.

Jason got to meet my papal the summer before we started dating. I wouldn't realize until a little while later that their birthday fell just two days apart. Tomorrow I will celebrate my husband turning 31. I can say that I married a man whom I think runs a pretty close race with how great my papal is.
Jason provides for our family because it is important to him (and me) that I get to be at home with our daughter. He doesn't just provide by having a job, he pours over our finances to figure out where to allocate each dollar to so that we are making the wisest choices. He walks to work everyday so that we only need one car. He comes home at night and helps with dishes, housework, and gives me nights out. He does an amazing job loving and caring for both Abigail and me.
I don't know if I could ever put into words how much he means to me. My life is full of laughter, wisdom, and the best friend anyone could ask for all because he is in it. I hope that we will get to celebrate our 50th anniversary together in 44 years, and that his grandchildren will say of him the same things that I say of my papal.
The hottie I get to spend the rest of my life with.
Happy birthday to two of my favorite men,





Sunday, November 7, 2010

The valley of the shadow...

I think everyone knows the verses from Psalms that my title refers to. They are read at funerals. They were even referenced in a nineties rap song. Jason and I both cringe when they are read at funerals. Neither of us want them read at ours. However they are some interesting verses. And in reality they don't only refer to dying, or being on the brink of death. There is a lot in those six verses.

"The Lord is my shepherd, I shall not be in want. He makes me lie down in green pastures, he leads me besides quiet waters, he restores my soul. He guides me in paths of righteousness for his name's sake. Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me. You prepare a table before me in the presence of my enemies. You anoint my head with oil; my cup overflows. Surely goodness and love will follow me all the days of my life, and I will dwell in the house of the Lord forever." Psalm 23


Despite the reputation for being a funeral passage I actually feel like it describes our lives pretty well. My personal journey with Christ began my senior year of high school, and Jason's his junior year of college. And for many years it felt like we lived in green pastures beside quiet waters. God spent numerous years building us up with great things. It's not that there weren't any bad things in those years. They just didn't really make us question anything we believed in.
And although the wait for a baby was hard, it was not a valley of the shadow of death. I know people who live in that valley; but for us we are just in close proximity.
For the first nine months or so after Abigail's diagnoses, that's where it felt like I lived; in almost constant fear that my baby would be taken from me. And as I move further away from the diagnoses the thing I have been able to look back and see is that God never changed. I did. A whole bunch. I will continue to change. Through the times I wondered what He was doing, and why; He gently comforted me with His rod and His staff. He also prepared a table for me before my enemy; the enemy who enjoys telling me all the things that could happen, and why this might be happening to my baby. As I sit at that table and supp, none of those things from the enemy can even be heard above my heart crying out in praise.
I really do feel anointed in this situation. I feel the grace and mercy of the Lord washing over me, and I see it pouring over my daughter. I watch my little girl and know that my cup runeth over. As I hold her, play with her, sing, dance, laugh, and cry I could not contain another ounce or moment of the greatness the Lord has brought to me. I know that His goodness and love will follow me forever, and some day my husband, daughter, and I will dwell in the house of the Lord forever.
I don't want this to sound cliche. It's not something I'm supposed to say because I'm a Christian. When we first found out about Abigail's NF I felt like someone had rocked my whole world. I imagine that if I could see things the way God did during that time there was a large shadow over me.
The thing about all of it is that I really can look backward, at now, and forward, and see that God didn't change, isn't changing, and will not change. His world was not rocked by my daughter's diagnoses. He knew when He knit her together in her mother's womb that there was a chromosomal mutation. He knew when and where she would get tumors. He knew that Jason and I would be her parents. He knows the number of her days, the time of her last breath, and the way to cure anything she may ever face.
Over the last few weeks as I have begun to try to prepare myself for another MRI and what may come of it, I have been shocked at how peaceful I feel. I have even been able to look at pictures of what might lie ahead for Abigail if she does have a tumor on her leg, and have been fine. It's not that I'm not saddened by the possibility. It's that it doesn't actually change who Abigail is, who I am, or who God is.
Knowing who I am in Christ, who my daughter is, and who Christ is means that even when things look and feel shaky, I will not be moved. My life, my hope, my joy, my peace, my everything comes from a foundation that is solid. Had I not walked into this with that foundation, the months of grieving I encountered would have taken me to the pit of despair and left me there. But as I stand, I can face tomorrow knowing that my God is good. And that is all I need to get me through anything that NF can bring our way.

Enjoying the green pastures and quiet waters,

Wednesday, November 3, 2010

Pink boots.


Every girl needs a pair of pink cowgirl boots. They go with everything. They make fun noises when you walk. And, they never go out of style. Who doesn't look good in a pair of pink cowgirl boots. However when your little girl is limited to one pair of shoes because of afo's and de-rotation straps you strictly ban people from buying things like this. They just remind you that she can't wear them. But somehow that slipped by one person. And so Abigail is now the proud owner of a pair. I must hide them because she can't wear them all the time. An occasional romp in them is okay, but they definitely do not help her walking issues.
So Sunday morning we got ready for church and put them on (along with her new hilarious "happy face"). She loved them. She told everyone "boots." It was fun to get to see her be excited and just be a girly girl. And so I vowed that night to hide them.
Monday came and she had therapy so I put her afo's and tennis shoes on. That afternoon we just hung out at home, played, and enjoyed the day.
Tuesday morning Abigail tells me she needs to wear a skirt, so she can dance (because we all know you can't dance in jeans). So we put on the skirt grandma just sent and came downstairs. And lo and behold mama had apparently forgotten to make her boots disappear. I turned around and she was holding them telling me boots. So I put them on knowing I wouldn't forget last night.

Because two days of wearing them wouldn't hurt her. We would go back to her tennis shoes today. And besides that she can't wear her straps because they are irritating one of her legs. So we will give her one more day.
And I bet you can guess what I did after Abigail was in bed last night. I sat on the couch with my husband and completely forgot about the boots again. So this morning when we were getting ready to put shoes on for library time I looked down and realized it was too late. She was already holding her boots and asking to wear them. And in case you didn't notice from the pictures above, she is really cute. It's hard to say no to such a simple and easy request that will make her happy. So pink cowboy boots it was.
But right now she's napping (okay she's really talking in her bed, but she's supposed to be going to sleep), and so I'm going to go put her pink boots away. I think if I wait much longer we will have a full out battle on our hands. But probably not one I would fight very hard. Even though I know it's good for her to wear her afo's and straps, I also know that she has a lifetime of hard things and it's okay to let her be who she wants to be sometimes. Pink boots aren't worth the battle.

Going to hide some really cute little boots,


UPDATE: I hid them yesterday, I swear I did. And this morning she brought them to me again and said, "boots please." And sure they look a little ridiculous with footie pajamas, but they can be worn with anything.


Wednesday, October 27, 2010

Ten things not to say.

I am the mother of a child with special needs. I talk to other parents of children with special needs. There seems to be an epidemic of sorts. A worldwide issue of things being said to parents about their special needs children; and not just general things. Things that should not be asked or said; especially in the presence of their child.
I will start with a few small lessons. When you meet a family, and they have a special needs child, assume the child can understand everything you are saying. Address the child if you want to know how they are. Think about what you are saying about them, and in front of them. Chances are, even if you think a child appears to have a profound disability and can't understand you, that they can.
Secondly do not refer to them as retarded. Never ever. Don't joke about someone being retarded, something being retarded and so forth. The word is hurtful, especially when it has, or will be used as a word to make fun of the child. And with that remember from this post that it is best received to use people first language. They are a person with a disability; not a disabled person.
With all of that layed out there this list below was a collaboration of my friend over at The MacDonald Family and I. They have a beautiful little girl with a disorder called Rett syndrome. I have enjoyed reading about her perspective, seeing her incredible faith, and the kind and encouraging words she has spoken to a mama who still feels a bit like a rookie wading through some of the special needs stuff.

Ten things NOT to say to a parent of a special needs child.


1."What is her life expectancy? Is she going to die from it? What is the prognosis?"
This question is one that is hurtful. Even parents who have a child with a fatal disorder aren't usually up for discussing their child's looming death with complete strangers. It also takes away the joy that we work each day to find in our lives.

2. "What's wrong with her?"
Perhaps this is more semantics, but I can think of about one hundred other things you could say that would feel kinder. Whether a child has something obvious like down syndrome, or just some devices that you've never seen before and are curious about, find another way to phrase your question. What does that device help with? What is his diagnoses? Can I ask about your child's special needs? Because, as a mama I don't feel like anything is "wrong" with my daughter. She is a normal child who just deals with things that aren't typical.

3. "If you had known would you have had an abortion/adopted her?"
I feel like this one is painfully obvious. But is has been asked of me (I wrote about it here in my what not to say to adopted parents post). And yes, my friends with biological children with special needs have been asked if they would have aborted. Don't say this. It's rude, unkind, and unthoughtful. It doesn't matter what the choice would have been, because our child is here with us now and we believe their life has value.

4. "I knew someone else who had that, and they were severely disfigured/died from it."
I have NO idea why our society is obsessed with horror stories. Someone is about to get married, have a baby, adopt a baby, buy a car, whatever; so people surround them with stories of the worst things that could ever happen. It's NOT HELPFUL. As a mother, I have gone through every worst case scenario there is. So if you want to tell me an encouraging story about it, or say something kind and uplifting, by all means. I don't need help worrying about my child's future.

5. "God only gives those children to special people."
This goes against what I feel like is the character of God (i.e. He did not want my child to have a genetic disorder). It's also untrue. In the child welfare system in the united states 30-60% of children have been estimated to have chronic health conditions. When you add in behavioral, emotional, and developmental issues, the number increases to 80%. The estimation for the general population of children with special needs is 12.8%. (Source.) Some of this is because dealing with special needs can be financially, physically, and emotionally draining. It could easily cause people to lash out at their children, especially those who are higher need. However it does also show that not all parents who have children with special needs are great at it.

6. "Whispering, Staring, Shushing, and quickly moving away."
These things are hurtful. Although I am writing a list of things I don't want you to say, I am okay with questions. Especially from children. That's how they learn. When you shush them or move them away you teach them to be uncomfortable with people who are different than they are. And when you do these things, you show me that you are uncomfortable with my child. My child is like yours in lots of ways. She is not scary. Treat her the same way you would a typical child.

7. "Those kids are always so...(happy, fun, compassionate)."
Maybe living a life surrounded by therapist, doctors appointments, and procedures makes children with special needs more compassionate. But not every child with down syndrome is always happy. Not every childhood cancer survivor grows up being empathetic. My child's diagnoses does not define personality. It's similar to believing all men, all women, or all of a specific ethnic, religious group, and so on, are the same. They aren't. My child's personality is unique. So are all of the other people who I have met with NF.

8. "I know all about ____ and here is what I know."
When my nephew was diagnosed with cerebral palsy a woman I worked with told me that if I had children they could have it too. When I politely stated it wasn't genetic, she argued with me. I walked away knowing that cerebral palsy is brain damage that can result from numerous different things. It is not genetic. It's nice to meet people who know about the disorder your child has; especially if it is something rare. However, don't ever argue with a parent about their child's disorder. I guarantee you they have spent weeks of their lives researching, reading, talking to doctors, and sharing with other parents. They know more about it than you do. And even if you are right, it's okay to give that parent a break from all of the know-it-alls in the world.

9. "You know what you should do..."
I can not count the number of people who have boldly stated the way to cure my child. Natural this that and the other, surgery, drinking so much water every day. Really, because of the eight specialist we see, none of them seem to know the cure. But average Joe out on the street has the cure that the doctors have yet to discover.
I will agree that there are often natural things that can help situations; foods to avoid, foods to eat, vitamins, and other things. I have a feeling though that if I did what everyone told me, I could end up losing custody of my child for neglecting her health needs.

10. "She looks normal. You can't even really tell there's anything wrong with her."
This one makes me want to respond with, "And you seem intelligent." I don't know if people are trying to make me feel better. Of course my child looks normal. Of course my child is beautiful. You don't have to convince me of that. But you telling me that you can't look at her and tell anything feels sort of like a trite answer of "Well at least you have that going for you. She can pass as normal." That doesn't help me to feel better, even if it makes you feel better.


This is the list for you. There are other things more specific to each child that people say as well. So please try to think before you speak. Think about how you would feel if that was your child. Think about whether you are close enough to the person for that to be an appropriate question. There are a few things on this list that our closest friends have asked, and know the answers to. They also know when all of our appointments are, how we are doing emotionally, and not to say things in front of our daughter.
And lastly, I have never begged for more readership before. But PLEASE share this. Post it on facebook, send it by e-mail. Post a link from your blog. Contribute your questions you don't like asked in the comments. Just do whatever you can so that as many people as possible can read this and become better informed.

Excited to see what you have to say,

Tuesday, October 26, 2010

Blessings abound.

Very recently someone asked Jason and I how we were doing. Not just a hey how's it going, but an actual I want to know how you two are. We both had to laugh. It had not even been twenty four hours since we had an intense conversation where we talked about what all was going on with Abigail, how we were doing, and what our thoughts were on all of it. We don't grieve the same. We don't think the same. We don't deal the same. Sometimes it causes tension, but slowly we are learning to be accepting of each other's way of dealing with things.
Really we both had to say we are doing well. This may be the first time that, even with lots of craziness and things in the air, I truly feel emotionally fine. I am overwhelmed by a lot of it. It takes it's toll on me. But I'm not crying all the time (crying is fine) or losing sleep over all of it. I have learned that it's okay for me to take a few days to process things instead of trying really hard to be fine.
Beyond that though I think it has gotten to a point where, although the ache for my daughter to not have all of these health things in her life is there, it is masked some by the feelings of how truly blessed we are. I watch her laugh, dance, jump, paint, color, sing, and read. And for that I am thankful. She snuggles in against me and sucks her thumb asking to "wock" and I do because there is no greater joy for me than to hold my baby and feel the weight of the blessing in my arms.
Abigail tells me the color of everything, the shape, she points out letters, and counts things. And for her incredible intelligence I am thankful. This is something specifically that I feel like God has showed me His mercy with. I have wondered what (if any) issues we would be facing down the road, and tried to prepare myself. It could be physical, but it also could be intelligence. And I planned to be proactive. But then my plan to teach her a color or shape every week until the new year went out the window when she learned them all in a week. My goal to work on numbers for the first few months of 2011 has been surpassed, and if she continues at the rate she's going she will know all of her letters by the new year. It feels as if God has exuberantly showed me that He is holding all things in His hands. Because in reality, she has three strikes against her as far as being at high risk for low i.q. or learning disabilities. But God doesn't care about statistics.
We have a home, that despite it's flaws, and mice, is home. It's warm. It's safe. It's cozy to be in. We love the hardwood floors, and space that abounds. We love that the mortgage payment is less than our rent for our 400 square foot apartment we used to live in (and it includes taxes and insurance). We feel blessed to have enough land outside to plant a garden, draw with sidewalk chalk, and let Abigail swing and slide. For all of these things we are thankful.
We feel beyond worthy of the amount of money people have shared with us, and how much it has helped with gas, meals, and parking prices for our trips to Riley. We feel blessed that my full time job is caring for Abigail, figuring out appointments, therapies, and traveling with her when I need to. I can't think of any job that would have been flexible enough to work with all of the appointments we have been to in the past 17 months. We are thankful that Jason's job is close enough he can walk so we only need one car. We are thankful that his hours are somewhat flexible, and that his boss loves Jesus, and is understanding of all that our lives hold. We are thankful that even if we don't make much, and some might affix the word "poor" to our livelihood, that we always are able to pay our bills, and buy food.
We are also thankful for the way God provides so abundantly for our physical needs. Since Abigail's water must now be thickened with applesauce I had been trying to find someone with apple or pear trees so I could make some. Meijer had apples on sale so a friend picked some up for us and I made some apple sauce. Pears were on sale as well so I made just a little bit of pear sauce. And then Sunday some friend's parent's showed up at church with two bags full of pears. I took them all. I spent last night making pear sauce. I don't know if we have enough to make it all the way through the six months of thickening, but we will have to buy much less at the very least. It was wonderful for me to see how God heard my want (maybe it was a need?) and orchestrated parents from a few hours away coming to visit and bringing more pears than any one person could eat. For this we are thankful. I had also hoped to not have to buy any more straw cups. We had a few and only needed a couple more to be able to get us through this time. And a friend had two extra she let us have. Abigail thinks they are pretty special too...every time she drinks from them she tells me "Gus."
As you can see, I'm sure, it's hard to stay focused on the bad when there is so much to be thankful for. Our lives are full of wonderful things to celebrate. So we will take time to grieve, be sad, and even angry when we need too. But we won't stay there because we have too many blessings to stay focused on the bad.

Thankful,

P.S. We are looking for a cheap (and by cheap I mean free) place to try to get away for a weekend. Just Jason and I. If you know of anywhere in the Indianapolis area (or not too far driving distance) let us know be e-mailing the address on the side. We love people, but don't want to hang out with anyone. We want a weekend with just the two of us. :)

Sunday, October 24, 2010

Happy adoption day!


This is our sweet baby bug exactly two years ago today. She was seven weeks old, and the sweetest thing we had ever met!


Mama, Papa, Abigail, and Judge Feick after everything was made official. She was now our Abigail Tohelet. The judge also shared that enjoyed doing adoptions because he deals with so much bad stuff that the adoptions help balance it some. We sent him a thank you and copy of this picture. I hope when we adopt again he does the next one.
Celebrating adoption day a year ago with her monkey we got her. Crazy to think she wasn't walking yet!

Reading "Family Ever After" the adoption story book we made for Abigail on picaboo. Would highly recommend the sight, and making a book if you have an adopted one.
Abigail wearing her backpack and slippers she got for adoption day today.
Happy adoption day to a little girl who has blessed our lives, brought us unspeakable joy, showed us grace, and taught us how to laugh more than we ever have before. We are thankful for you in ways we could never put into words. Never stop being who you are and showing us that happy face of yours. We love you baby bug!
Thankful for adoption,

Thursday, October 21, 2010

I might be a superhero

I have never considered myself smart. I get by just fine. I'm not dumb. But when it comes to things like math, and correct grammar and the like I don't always know the answers, and definitely care even less. My husband is very intelligent. Did honors everything his whole life. He gets frustrated at the two things that I do well and he can't (play the piano and read very quickly). I like having a few wins.
I have realised, not just from what we are going through, but from talking with so many other parents out there that have children with special needs, that I know more big words than any other American out there. Okay that's an exaggeration, but I will explain.
Up until May of 2009 I knew enough about the basics of child rearing to be able to say things like, "I think she has an ear infection." I knew signs and symptoms for run of the mill childhood illnesses. I knew a little about cerebral palsy because of my nephew and a little about downs syndrome because for some reason I thought we would have a child with it.
However in the past seventeen months since I was first introduced to the huge word "neurofibromatosis" my vocabulary, as well as my understanding of genetics and anatomy, have increased exponentially.
Someone asked me what NF was one time. I explained that it was a chromosomal mutation on the 17th chromosome that could ....I looked up to a distorted face. Oh yeah, he probably just wants to know the basics, not everything I have ever learned. But the definition is hard and it took me months to understand the basics. But now I know the difference between cutaneous, subcutaneous, and plexiform neurofibromas. I know what a glioma is, a pheocromocytoma, sphenoid dysplasia, and tibial dysplasia. I know what a cafe au lait spot is and what lisch nodules are. I know about avisol, photodynamic therapy, gleevec, and tumor debulking, as well as who the best doctors are, and where the drug trials are taking place for each.
I also have learned a secret language full of letters. I know about things like p.t., o.t., and s.t. I know what an IFSP is as well as an IEP. And more specifically I know whether appointments we are going to are at the ROC. I know the difference between an EEG, EKG, MRI, CAT, PET, and x-ray. I even know things that are more common with NF like JMML and JXG.
I have learned enough that sometimes I doubt my choice to not be part of the medical field. All joking aside, I am at a place where not only do I learn everything I can about NF, it spills over into helping me understand other disorders. And I never thought I would be thankful for this sort of knowledge, but I am.
Sometimes it just feels like I'm part of a secret club of moms with superpowers that have to do with hiring and firing a large entourage of people to care for their children. But most of the time it makes me feel like my daughter will get the best care. I will know everything I can so that I can be proactive, and most of the other parents I know are the same way.
So to all of you other mothers and fathers out there taking care of your kiddos with special needs, what is your secret language? Does it ever make you feel alone when you have to explain all the letters, and words to friends, family, therapist, and sometimes uninformed doctors? Do you wear a cape under your clothes to hide the fact that you have to be a superhero for your child; you are the only one who can fill that job description? Tell me your thoughts!

Hiding my cape,

P.S. When I hit spellcheck every word that had to do with NF and every letter combination was highlighted. Not even the computer can decipher my superhuman code.

Wednesday, October 20, 2010

#4 on it's way

The chaos of life seems to just be trading one thing for another right now. Once something seems to be on the upswing we have a new thing to deal with making me have to laugh at the ridiculous amount of crazy we have going on. I might just be laughing to keep from crying, but I'm laughing none the less.
We are still working on getting Abigail to enjoy her thickened liquids. Since her water has applesauce in it we call it juice. And although she has been drinking it, she still ask for water about ten times a day. And the milk transition has been horrible. We are on a new attempt after backing up and thickening a little at a time instead of all at once. Nap time got a few swallows and no tears so we are hoping this time it will work.
Beyond that she has had two darkened areas on her leg we have been keeping an eye on. One of them recently started to feel like it had a little knot under it so I called the neurologist. They suggested I take her to our family doctor to make sure it wasn't anything else. I put it off because even if it is a tumor, there isn't a whole lot they can do, and I didn't want to do another MRI yet. So yesterday Abigail told me she had a boo boo. I asked her where and she pointed to the spot with the knot under it and said hurt. So I decided to take her to the doctor. And now we have another MRI at the end of November. *Sigh*
Other than that our world has been filled with smaller ups and downs like a broken furnace that is now fixed and a friend who has struggled with addictions, and been clean for a while, was missing for a few days, but has called and all is fine. Our lives are never boring if nothing else.
On a much happier end of things we had a routine dentist visit today. Abigail has cried through her others, but has always still let them do what they needed to (just with big sad tears running down her cheeks). Today my two year old was a rock star. She got her pouty lip out a few times, but not one tear. I would have been proud of her even if she had cried, but the dentist and hygienist were very impressed at what a big girl she was. And to tell you the truth I was too.
There are times in my life where my biggest lessons have come from the tiny one God has entrusted to me. The days I feel overwhelmed with all of the appointments, poking, prodding, and driving; I can look down and see a toddler overjoyed to be playing with different toys, seeing the nesquick bunny when we drive by the factory, or getting to watch the television on the ceiling at the dentist office. I mean if the sweet little one who is receiving all of the pokes and prods from strangers can take it I should probably act a little more like my two year old. She makes our lives of chaos seem like a walk in the park.
The pictures below are from the night Jason decided he would swaddle Abigail to be silly. We haven't done this since she was about two or three months old. Now she ask to be swaddled and rocked at least once every evening. And who am I to say no to a request that allows me to hold on to my toddler being a baby for just a little longer. :)

Living the life,

Friday, October 15, 2010

Emotional Friday

It's been an emotional day. It always takes some processing after appointments to know how exactly I feel, and that was true of today with a bonus added in at the end.
So I'll start with Abigail's swallow study. The study itself went great. Abigail was cooperative and enjoyed the barium powder added to each thing so much that she was licking it off. That's our goofy girl.
The results were that she had deep penetration of liquids in her bronchial tube 20% of the time. In more general English that means that she didn't aspirate during the study but is most likely aspirating some of the time.
We then spent the next hour with the speech therapist going over the swallow study as well as watching her eat other things, and discussing her oral motor skills. It was a bit disheartening. I wasn't that surprised by the swallow study, it was more of the other things that took me off guard a bit.
Her eating technique/skills were assessed at 10-12 months. I did not see that coming at all. So from here we are doing a few different exercises to help her eat better, stuff her mouth less, take bites, and so on. We will also be thickening all of her liquids.
The liquid thing was a bit overwhelming, but also sad. Our daughter is a champion water drinker, and we are supposed to add apple sauce to her water. So really she will be getting a more juice flavored drink than plain water. And tonight I added some rice cereal to her milk. She took one sip, sat up, and said all done as the tears rolled down her cheeks. Oh how I wished I could just give her the "nu" she wanted and make it all better. Instead she went to bed without the milk that she loves so much. I hope it gets easier as we try a few other things that we can add to her milk. She does tend to adapt well to change.
However, it has also added to my head that we keep racking up things that are going to make people not want to babysit because it's too much stuff. She could have an asthma attack, and here is what you would need to do. (With the new possibility of mastocytosis) We now have to let anyone know that it's possible she could go into anaphylaxis at any time for no apparent reason, and then give them a lesson on an epi-pen. So today we added that she can't drink anything you might be having because it has to be thickened with this or this, and here is the amount to add to each thing.
But to top the day off Jason had some blood work done earlier this week. He is having a sleep study done for possible sleep apnea, and they wanted to check on a few other things. We have sort of assumed, due to some symptoms, that Jason had some low hormone levels and that was the reason we couldn't get pregnant. And so we had expected that to come back and to have to decide from there what we wanted to do.
So today when we got the phone call that everything was normal I was excited, but also at a loss. I doubt we will do any more investigation into why we aren't getting pregnant. It was just that for the first time in years, I had a small hope that we could decide if we wanted to try for a biological child or choose to continue to adopt. And that small hope was quickly squelched. So as we have officially passed the five year mark of not getting pregnant, it feels even more final.
As I sit here writing this I truly do just feel like I am being given a little too much all at the same time. I know we have more upcoming appointments and test so I won't be able to spend much time dwelling on the here and now before I have to pick my self up and move forward again.
This post feels depressing so I will end it by bragging again about how smart Abigail is.
Abigail is extremely inquisitive wanting to know what signs are, what a letter or number is and so on. I posted a small blurp before, but she knows all of her shapes and colors, a stop sign, a Do Not Enter sign, a railroad crossing sign, at least the letters A,B,E,H,and M, and can identify at least 3,5,8,10 (the letters and numbers have been what she has pointed out and told so she may know more?) and can count from 1-10. She blows my mind with how quickly she picks up on new things.
We also watched as she walked up four steps without holding on, and has made two, two-word phrase on her own. These feel like huge wins since they are areas that she is behind in!

Feel free to pray for all of the chaos, but please also take time to rejoice with us at how great life is as well!

Ready for tomorrow,

Tuesday, October 12, 2010

I don't know how to be still.

I can't begin to describe how overwhelmed I feel. I have had a few really hard days over the past couple of weeks. My two hardest days have been accompanied by a phone call from a friend to let me know she had been thinking of me and praying. My second one was met by an e-mail saying the same. And although both made me feel a little better, I still felt like it is all just too much.
So this afternoon I layed Abigail down for a nap and started cleaning, picking up, and just doing everything I could to not let myself think too much about all of the upcoming things. I turned on some pandora and refused to be still.
And then "Come and Listen" by David Crowder came on and I could hear the whisper of God telling me to come and listen. I tried to ignore it. I didn't want to listen, I didn't want to think, I wanted to keep moving.
But I gave in. I sat down and picked up the Bible and opened to Psalms. I find myself doing this a lot lately. I don't care which one I read, just something to speak to me. And this is what I read:
"God is our refuge and strength, an ever-present help in trouble. Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea, though its waters roar and foam and the mountains quake with their surging." Psalm 46 1-3
And I immediately thought how parenting a child with the medical possibilities Abigail has feels like the earth is giving way, and the mountains are falling into the heart of the sea. It feels like everything around you is getting ready to fall apart. Things are not following their natural order and all hell could break lose at any moment. And sometimes it does.
However that is not the end of the verse. I continued reading and the end of it was what I needed reminded of.
"Be still and know that I am God; I will be exalted among the nations, I will be exalted in the earth." Psalm 46:10
When I read this there was the reminder of realizing that I need to keep in mind that I don't know what God is doing. And whatever is happening, and will happen with Abigail He will be able to use to be exalted. So instead of letting the turmoil overtake me I need to be still. I need to sit and listen because the whispers of the Lord are always full of sweet things that I need to hear.
So I prayed and told God I had no idea how to be still in this. I don't know how to even let go of the fear, pain, and ache in my heart that have come with all of the unknowns. And I felt that relief of just being honest. I felt the whisper of how aching for my daughter is okay, and normal. And the questions, and things I don't understand are things I need to wrestle with, and be honest about. So I thought I would share a few things that I have trouble understanding.
*Why does the Bible say by His wounds we ARE healed. Not that we will be someday, but that we already are?
*Why are we told that whatever we ask for in His name we will be given?
*Why are we told to call on the elders and have them pray and the prayers of the righteous will bring healing?
I don't know that I even need answers, just to wrestle through what each thing means to me; to figure out what to do with the things in the word that don't always make sense to me.
I'm thankful I serve a God who allows me to wrestle through these sort of things because I know in the end it will draw me closer to Him, and that His love for me does not change when I am full of questions without answers.

Still learning,

Friday, October 8, 2010

About that word hope again.

It was almost a year ago that we sat in a neurologist office with Abigail for the first time to find out she unofficially met the diagnostic criteria for NF. It was also a year ago she was diagnosed with asthma. I had recently started to feel like I was closer to the side of sanity again. I had stopped fearing every new doctor's appointment as the next horrible thing that would happen. I wasn't freaking out about every new bump or spot on Abigail, certain it was her first tumor. I was starting to feel almost like the NF was just a part of our lives.
And just like the first time we heard about NF, I took Abigail to the doctor for something completely unrelated, and got sucker punched with something new. So now I am in the waiting mode to see if she has mastocytosis. At this point if she has it I am certain it is mild. The thing is though, it's definition is like that of NF...most cases are mild, some are not. We don't have any way of predicting what will happen.
I feel like I'm caught in some sort of weird parent nightmare. Because it seems unlikely to have a child with a disorder (NF is not technically rare) that nobody has heard of, and then to also most likely have a second rare disorder. I mean does that really happen? And if it does it doesn't happen to us...right?
I am overwhelmed with it all right now. I want to know something now (our appointment for the masto is at the end of November). I want to find someone to blame. I want to fix this all. It feels so surreal to be in the same spot emotionally a year later with something different.
As I write about all of this I also feel torn. I feel SO fortunate with Abigail because of things we have already bypassed with the NF. I feel fortunate that although both of these disorders leave her at higher risk for being on the autism spectrum, we see no signs of that. I feel fortunate that I watch Abigail learn new things, say new words, walk, talk, laugh, eat, play, and everything else a typical two year old does. I am very aware of how easy we have it, even with all of the medical stuff.
But honestly, the craziest part of all of this to me is the word that God has whispered since before Abigail came....hope...I need to learn to hope. And not just hope that everything turns out okay, or that she outgrows the masto and never has the bad stuff from NF, but hoping in the one who can save her; the one who knows the cure to all things.
While we waited on a baby God told us to hope in Him and what He could do. And the story he spun into motion with our little girl could not be more beautiful. The things He is still writing and doing, have spurred me on to hoping for more than just a little girl for us, but hoping for the lives of her birth family to be changed by her presence in the world. And then learning about the NF all we could do was hope in Him. There isn't a doctor out there with the answers for this disorder. Nobody can tell you what the future holds. So I slowly remembered what it was like to live in hope; how it feels to be held up by the one who hung the stars and moon. And for whatever reason God gently nudged me over the summer to hang the word hope over all of the windows in our house. To remember to look at the world outside with hope in my eyes; because I know the one who can do all things.
And here I am again, losing hope. Feeling like I'm unable to swallow this, and trying hard to read what I can, talk to people, do whatever is in my power to figure out what the future holds. I don't believe that God has caused any of this suffering. I do believe that He refuses to waste it. And so with each new thing that comes into our lives it seems to all point back to that one word. The one thing that can lift me up and keep me moving forward when all I really feel like doing is laying down and waiving my white flag. But I can't give up. I can't back down after getting a taste of the things God does when we put our hope in Him.

"And after you have suffered a little while, the God of all grace, who has called you to his eternal glory in Christ will himself restore, confirm, strengthen, and establish you." 1Peter 5:10

Ready to be restored, confirmed, strengthened, and established by Christ,