Tuesday, March 30, 2010

"And I wonder what it is about different that makes us think it's not perfect?"

Okay first I need to start by telling you the title is a quote from Kelle Hamptom. She has a blog, but I have no idea how to link you to it. Plus she's a photographer and her blog is way cooler than mine so I don't know if I want to link you to it.

We got Abigail's orthotics yesterday. They are cute, and she likes her new butterfly shoe's. But, they will make her different (not that she isn't already). They aren't extremely noticeable inside of her tennis shoes. However as she wears tennis shoes all summer long, and with dresses, they will stand out a little more.


Abigail in her orthotics.

As I've mentioned before this makes me a little sad. I think one of the things I keep thinking about is Easter. I love getting her an Easter dress, and having her all dressed up. And this year her Easter dress won't be accompanied by her sweet brown mary janes, but by her white tennis shoes with the pink Nike emblem. And by some blue orthotics with butterflies that rise slightly above the shoes on the side. I have been a little sad about this for a while. I haven't dwelled on it much, but have just had the passing thoughts of her sticking out on Sunday morning while all the other little girls wear cute little dress shoes.


A closer view.

On top of this yesterday was a hard day. A friend e-mailed to let me know that when they went for her twelve week pregnancy check-up that they found out the baby had passed away. It was heartbreaking to me. Her and her husband came over last night to get out of the house for a while. We went for a walk, laughed at Abigail, and spent time talking about lots of things.

At the end of the night the house was a mess. Everything from dinner was still on the table. Abigail's toys were laying around, there were toothbrushes and hairbrushes laying out in the bathroom. I sat down at the computer and saw that Kelle had posted a new blog.
Kelle has a daughter with down syndrome. As I read her post last night it resonated with my soul. The quote in the title "what is it about different that makes us think it's not perfect?" made tears come to my eyes. Yesterday felt like a day of "different."
But at the end of the day Abigail will look perfect on Sunday morning. She will be happy to wear her new dress. She won't know that her shoes don't exactly go with her outfit. She like her tennis shoes because we put bells on them to keep the strings tied.
And my house. It felt way less than perfect. But yesterday went a little "different" than I could have planned for. And the fact that I went to bed with an incredibly messy house is perfect because I spent time grieving with our friends who are grieving. That is much more important than supper dishes.

So one other quote from Kelle's blog that went along with this: "And so we strive not for perfection (although our imperfection is what is so perfectly perfect to me), but for color." I want my life to be full of color. Full of Abigail's giggles, dancing, and doing the hokey poky to worship music at church. I want it to be full of friends who know that we will drop everything to come alongside them if they need us. I want it to be full of both laughter and tears. That is the only thing that brings color to life, and makes us different, and it's perfect.

Sunday, March 28, 2010

Ready for Easter


Abigail's beads for Easter!
This post will be short, and I will probably post again in the next couple of days, because we pick up Abigail's orthotics tomorrow.
One of the most intimidating things to me when adopting Abigail was her hair. I was told over and over how hard it would be. However I don't find it to be that hard. It is much different than mine. However I love sitting and braiding her hair, how cute she looks with her afro, of just pigtails.
Tonight I finished Abigail's hair for Easter. Her beads match her dress. This may be one of my favorite things about her hair is being able to do it and still have it look great in two weeks. Next Sunday morning we will get up, and all I will have to do is put her dress on her and she will look stunningly beautiful as always. So I celebrate her kinky hair that is so wonderful!
video

Saturday, March 27, 2010

Pain and Joy


Abigail just a few days old sleeping while papa held her.

I posted a song a few blogs back by J.J. Heller that means a lot to me. I was listening to it today and thinking about the line "I have asked a thousand ways, that You would take my pain away." I wonder what exactly that even looks like.
I don't feel sorry for Jason and I. There was a time when we were waiting on a baby that I remember starting down the road of "it's not fair" and "why do bad people, who suck as parents, get babies." I quickly backed off though. First of all it's completely not productive. It leads to bitterness, and the feeling that I for some reason "deserve" something that other people don't. And secondly there is no answer aside from the fact that we live in a fallen world.


One of Abigail's first smiles. :)

However I can't remember one time since finding out Abigail has NF where I sat and said "it's not fair." I have thought lots of things like I wish my daughter didn't have this, I don't want her to suffer, I pray that God keeps it mild or heals her.
So while singing this line today and thinking about what it would look like for God to take my pain away, all I could think of was a life where Abigail wasn't in it.
In order for me to not feel this pain, I would have to not be Abigail's mama. That is a somewhat harsh reality. Is the joy of being mama to a little girl worth the pain of not knowing what life will bring.


The last time Abigail slept on me. I was hot, she was heavy, and I loved it!

Let me answer with a definitive, no hesitation, no doubt, YES!!! Even if we had known about the NF before hand we would not have hesitated to be her parents. We were open to a child with special needs, and although I thought it would be something I was familiar with, like Down Syndrome, or cerebral palsy, I still wouldn't have hesitated. It's not easier because we were open, but it was less surprising, since we had asked God before hand to bring us the baby He had for us.


Abigail at Riley Children's hospital. Stressful day for mama and papa, and a fun day for Abigail. They have a McDonald's and a fountain with water that flows through the atrium.

So let me end with the things that make it worth while. A little girl nursing in the middle of the night, sleepily getting nourishment from her mama. A sweet naked baby after bath time...there's something about baby buns, and bellies, legs, and arms, that make life feel wonderful. The first time she rolled over. Sneaking in while she is sleeping to see her sucking her thumb. The first time she smiled. Watching her watch me as I moved around a room. The first time she laughed out loud. Big slobbery smooches. The day God healed her legs and she put weight on them for the first time. Watching her feed the ducks with her papa, then chasing them afterwards. Crawling for the first time. All of her signs that only we can fully understand. Lots of teeny little ruffly clothes. Sitting with her between my legs and braiding her hair. Watching her "click, clack" her beads. Hearing her say "mama." Watching her squeal in delight as she sees papa walking up after work. Seeing her doing things like eating and drinking by herself, that just a year ago I had to do for her. Having her snuggle up and suck her thumb on me when she's sleepy. When she gets really silly and starts belly laughing. Watching her tackle her papa. Seeing her learn something new. Her love for trains and sirens. Unprompted hugs. Pretending to talk on the phone. Watching her love her baby doll. Her very cute little wave. Hearing her talking gibberish when she first wakes up. Watching her do the motions to itsy bitsy spider, hokey poky, peace like a river, and twinkle twinkle. Making everyone within her sight join her in the motions to whatever song she is singing. When we pray for her and thank God for the joy she brings and she immediately does the motion for fountain (from I've got joy like a fountain). She does bring a fountain of joy into our lives.
And for these reasons and hundreds more, I will take the pain. I will smile and thank God for it. I don't like the pain, but it's worth it for the unending joy.


Abigail tackling and smooching papa.

Children are a gift from the Lord; they are a reward from Him. Psalm 127:3

Thursday, March 25, 2010

Our newest parenting journey!

We have some changes coming in our life. I hesitate to write about this because people have such differing opinions about when and how this should take place. However Jason and I have read some, talked, and even prayed about it and decided to embark on the journey of teaching Abigail to use the potty. I have read statistics that say starting early means more accidents, starting late means more bed wetting, and a million other things. Every book, website, and parent gave me statistics to back what they believed. So as always, statistics lie.
We are not using a method of any sort (or at least I don't think so). Abigail is running around in a t-shirt, baby legs, and socks. It's really cute because it makes her naked buns look like she's a cowboy with chaps over the pants....except she forgot her pants. :)
We are doing fairly well. Abigail love sitting on the potty, she has peed in it numerous times, and pooped in it this morning. She is a kid who will do just about anything for praise. So we aren't rewarding with food, or stickers yet. We clap, dance around, yell, call papa, call grandma, and whatever other silly things we can do to show her how proud we are of her. She loves it. So although we most likely have a long way to go before we are only using the potty, it is a beginning.
It has been interesting to me how nervous I was about doing this. I have trained probably 50 kids or more. But like everything so far, it's different when it's your own kid. I don't have a parent showing up saying, here's what we are doing, here's how and have at it. Instead I have to come up with the ideas and talk with Jason who often says "sounds good" to whatever I choose.
Parenting is so overwhelming sometimes. At least for me. It's not debilitating, just a lot of work. I have days where I think to heck with being consist ant. I want to go sit on the couch, eat french fries, and not care that Abigail is banging on the television with a phone. However I want to teach Abigail that obeying brings about good things for her. I want her to know that we have rules because we love her. So I press on. I attempt to do what I think is best for my little girl. I take into account what the Bible says about parenting, what I believe is the goal in parenting, and Abigail's personality.
So if you have kind encouraging words about training children feel free to leave them. If you have a different opinion it's okay. We can parent differently and both still be "right." And if you think I'm an idiot keep it to yourself. As I said above parenting is already overwhelming sometimes, and I don't need any help doubting myself. I am doing my best!

Trying to train my daughter in lots of things,

Tuesday, March 23, 2010

It's almost April...

...and that means a month of slight craziness...again. I am hopeful that it will prove less crazy than the five months that were October through February. I can't imagine having to go to the doctor with our girly that much ever again.
However last week we got casted for our orthotics. We are waiting on the phone call for the appointment to pick them up. I'm thinking it should be this week, but they have to wait on the approval from insurance. So it's a big circle of waiting right now.
We also had our 18 month well check on Friday. Over all it went well. Abigail is a fairly healthy and normal kiddo. She got her last scheduled shot until pre-kindergarten! WOO HOO! The only thing we are watching is a crazy weight gain pattern over the last few months. She did grow in height which is fantastic. However over the last few months her weight has gone up and down, up and down, and is now only slightly up. She went from the 75% a year ago to the 36% on Friday. So she's a bit of a skinny bug (although because of her muscle tone issues she walks with her belly sticking out so you can't tell). We will go back in three months for a weight check.
But April are our bigger appointments...again. On the sixth we have her pulmanologist appointment. We had hoped that the winter months would be uneventful. We were told if they were we may be able to stop doing pulmicort everyday. But they weren't. They can reduce her dosage though so I'm still holding out for that to be a possibility!
On the 20th we go to the neurologist for the NF. So far I haven't gotten too crazy about this appointment. It's nice to have one under our belt so that I know what to expect. I still wonder as we get closer if I'll become a slightly crazy woman again. I have already started to wonder if they will order another MRI, or if we will be referred to any more doctors. I also wonder if they will find anything new or scary.
And our last appointment is on the 28th. It's just a dental check up. Nothing crazy out of the ordinary. Abigail doesn't love when they clean her teeth (she has some issues with build up, as well as the iron she takes staining them). However they shower her with cool gifts afterwards and tell her how cute and wonderful she is. So she quickly forgets. Such is the joy of a pediatric dentist I guess. I only get a toothbrush, toothpaste and floss when I go.

I do have a small confession. Perhaps some of you other NF parents who follow can tell me if you ever do this. I was thinking about Abigail the other day and all of her spots and freckling. I was thinking about how there are a couple of things that are nearly guaranteed to happen at some point in her life. And I didn't realize I thought this (some weird subconscious thing) but I thought "she won't have any of those, she doesn't even really have NF." I don't think I'm in denial. Or perhaps that is the stage of grieving I am going through right now. But apparently I am somewhat convinced she doesn't have this.
Don't get me wrong. I don't really believe this. I accepted she has it much before Jason. He even denied it when she started getting the freckling. I just kept telling him over and over that he needed to be prepared because she would be diagnosed. And she was. But somehow I find myself not convinced? Our crazy minds I guess.

If you think about it as you are going through April you can be praying for Abigail and I (and Jason).



Abigail bowling for the first time. She rolls it...



...and watches it knock down the pins. She also clapped every time. :)

Peace out,

Friday, March 19, 2010

The Land of Happy

Have you been to The Land of Happy,
Where everyone's happy all day,
Where they joke and they sing
Of the happiest things,
And everything's jolly and gay?
There's no one unhappy in Happy,
There's laughter and smiles galore.
I have been to The Land of Happy-
What a bore!

-Shel Silverstein



I say cheese as soon as I see the camera!



I put my shirt on by myself, loudly proclaiming "han" when it came out the neck hole!



Dressing up in my pretty bracelets.



Sitting on the steps and talking to papa.

I am thankful that we don't live in the land of happy. I am thankful that God loved us enough to bless us with a little girl, even if life is not easy and perfect. I would much rather have my giggle bug for one day, than to ever live in the land of happy.

Thankful for our little girly,

Thursday, March 18, 2010

Helping

I think we are in the "helping" stage with Abigail. She has had the sign for "help please" for quite some time. And most of the time when she wanted help she would say it. However this sign has taken on a new meaning. It now means I would like to help you. She has become fixated on helping with whatever mama or papa are doing. I remember reading some time ago about how important chores are for children. They do not just teach them responsibility; they also let that child know that without her our family would not function as well. The table wouldn't get set, the napkins wouldn't get thrown away, and as she gets older things like, the trash wouldn't get taken out. All though these things would still be done, letting her know that our family works better because she is part of it is still a great thing to do. I am amazed at how true this is. Abigail is so excited when I ask her to help set and clear the table, and often times she asks to do it now before I even mention it. She loves throwing things away for me, handing me clothes to hang out on the line, carrying in the mail, and a million other things. I can see it on her face. She feels like she is part of the adult family action, and loves it. I know that some day she may not love her chores, or may complain. However she will still have them, because our lives and family would not be the same without her. Even if right now her help often means whatever I'm doing is going slower, it's worth watching her face beam with pride as she carries her plate and "poon" to the table. The video is our little one helping mama make banana nut bread last night.
video

Saturday, March 13, 2010

Epiphany

I believed when I was younger that part of being an adult was being confident. I thought I would no longer struggle with who I am. But I find myself growing close to my 28th birthday, and still not knowing a whole lot more than I did back then. I even remember having a conversation with a woman in her 50's who admitted the same struggle. It was almost heart breaking to me to know that it would probably be something that I would always wrestle with. Who am I?
So the last few weeks at church all these new opportunities have opened up. I have listened to each one and prayed. God is this what you have for me? Is this something you want me to do? And I have heard a resounding nothing. No yes, you should do this, or no, this is for someone else. So I have continued to pray hoping that my big opportunity doesn't pass me by while I'm waiting on an answer.
Then last Sunday as I continued to face the direction of uncertainty, God showed me Himself picking me up and completely turning me around and spoke to my heart "I have called you to be a mama." Okay I already knew this. So I start telling Him all of the people I know who are mama's and do other things at which point He says to me, "I don't care about them, I have called you to be a mama."
It was freeing. I'm not certain that the struggle of who I am is over. But it was so great to hear that I am on track. I don't need to be running around volunteering for everything and filling up my time. I can spend my time at home reading stories, getting tackled, and braiding hair without the guilt that I'm not doing enough.
And then my God who always does things abundantly made sure I got the point. Lots of my friends do really cool things like community gardens, and teaching a group of at risk kiddos, and leading youth group. The list goes on. I think they are amazing. And lots of them have ended up in the paper for what they are doing. There rolls are more in the spotlight and get attention from people who see what they are filling their time with. Being a mama doesn't get that. I am fine with that. I don't really love being the center of attention anyway.
So on Wednesday I was outside enjoying the wonderful spring weather with my daughter. I was pushing her on a little ride on toy, and giggling with her when a man walked up and said, "excuse me." I looked up to see a man with a camera. He told me he was from the paper and saw us outside and wanted to know if he could take our picture. So I continued to play and he took a picture of us. I was in the paper for doing something that doesn't seem "great" to me, or most people. But it's what God has called me too. Hopefully the next time I feel restless I can pull out this picture and be reminded that I am right where God has called me to be; at home with a wonderful little girl.



Enjoying my newest epiphany,

Thursday, March 11, 2010

When do the two's start?


Abigail playing at her friend's birthday party.

Okay so we have had the official "toddler" status for about three months now. However some time in the last few weeks Abigail's personality has switched to that of a toddler. Now let me start by adding if you have a strong willed child, you may want to bypass the next part. You will not have any sympathy and may decide to leave me nasty responses. I know that Abigail is still easy.
So Abigail has started throwing fits. I wish I could get one on video. It may be one of the funniest things I have ever seen. Ever. When Abigail is frustrated about something she gently lays herself down on the floor and rolls back and forth a few times. She doesn't kick, cry, or make a single noise. Anywhere from ten seconds to two minutes later she gets up and walks off to whatever her next activity is. Jason and I have to leave the room every time because it's so funny. It's almost like she innately knows she is supposed to throw fits, but also knows that it won't get her anything, so she doesn't give it too much effort.
However she also has been whining. A LOT! It may be one of the most tiring things ever for me. It is a noise I ignore, but in case you didn't know this, ignoring whining does not mean you can't hear it. So I am still irritated and annoyed by it. And she is still whining. However I have to admit that even this aspect of her is sort of funny.
Abigail is not strong willed. I would say her personality is more one where she lets you know what she does and does not like. So lets say she wants a banana, and I tell her she must first eat some of her veggies. She will eat the veggies, whining the whole time. So she isn't being "willful." She is just letting us know that she is not happy about not getting exactly what she wanted. Oh silly girl. Although it's funny to talk about, it is not enjoyable during the duration of it.

The other thing I was going to share was our newest journey we are beginning. Abigail will be getting orthotics (braces) for her feet sometime over the next few weeks. Her physical therapist thought we should try them to see if they help at all with any of the issues she has with walking. In the grand scheme of things, they once again, are not that big of a deal. However Jason and I are both a bit sad about it.
Like all parents we want our child to be healthy and not stick out. We want her to have great self esteem, knowing that she is beautiful, wonderful, and exactly who God created her to be. I have talked before about my worries with her cafe au lait spots as well as possible tumors. I feel like although we think she looks really stinking cute in the glasses it adds another element of worrying about her feeling different and getting made fun of. But the orthotics seem to take it to a new level. Maybe we are being somewhat vain. Either way, it's just another outward sign that Abigail has something going on below the surface.
I don't want to answer questions like "what's wrong with her" from strangers. She already has trouble running, and trying to walk on uneven surfaces. She does not have the gross motor skills of a child her age. So although the orthotics will help her walk "correctly" I also wonder if they will make things more tedious for her. Sometime early next week, they will be casting her feet for a mold to make the orthotics from, and then they will make them. So I will post pictures when we get them, and let you know how she's doing with them.

Moving forward as always,

Monday, March 8, 2010

NF facts



Two of Abigail's more prominent cafe au lait spots.




1.NF has been classified into three distinct types; NF1, NF2 and Schwannomatosis. They are caused by different genes, located on different chromosomes.

2.Abigail has NF1, located on her 17th chromosome.

3.NF1 is not a rare disorder, it is the most common neurological disorder caused by a single gene.

4.NF1 is the more common form of NF, occurring in 1:3,000 births throughout the world.

5.This means in the city we live in with approximately 60,000 people, there are 20 people with this disorder.

6.The Neurofibromatoses are genetically-determined disorders which affect more than 100,000 Americans.

7.NF is more prevalent than Cystic Fibrosis, hereditary Muscular Dystrophy, Huntington's Disease and Tay Sachs combined.

8.I find this statistic amazing, due to the fact that nobody has heard of NF, and everyone has heard of the other disorders listed.

9.All forms of NF are autosomal dominant genetic disorders which can be inherited from a parent who has NF or may be the result of a new or "spontaneous mutation" (change) in the sperm or egg cell.

10.Each child of an affected parent has a 50% chance of inheriting the gene and developing NF. The type of NF inherited by the child is always the same as that of the affected parent, although the severity of the manifestations may differ from person to person within a family.

11.This means we will some day have to explain to Abigail the "risk" involved in her choosing to have biological children.

12.NF is worldwide in distribution and affects both sexes equally and has no particular racial, geographic or ethnic distribution. Therefore, NF can appear in any family.

13.Although most cases of NF1 are mild to moderate, NF1 can lead to disfigurement; blindness; skeletal abnormalities; dermal, brain and spinal tumors; loss of limbs; malignancies; and learning disabilities.

14.NF1 also has a connection to developmental problems, especially learning disabilities, which are five times more common in the NF1 population than in the general population.

15.NF is not the "Elephant Man's Disease," although it was at one time believed to be. Scientists now believe that John Merrick, the so-called "Elephant Man," had Proteus Syndrome, an entirely different disorder.

16.You must have two of the following criterea to be diagnosed (without genetic testing).1.Family history of NF1 2.6 or more light brown ("cafe-au-lait") spots on the skin 3.Presence of pea-sized bumps (neurofibromas) on the skin 4.Larger areas on the skin that look swollen (plexiform neurofibromas) 5.Freckling under the arms or in the groin area 6.Pigmented bumps on the eye's iris (Lisch nodules) 7.Skeletal abnormalities such as tibial dysplasia (bowing of the legs), or thinning of the shin bone 8.Tumor on the optic nerve that may interfere with vision .

17.As of right now Abigail has way more than 6 cafe au lait spots, and freckling. She has been officailly diagnosed.

18.Some other things that can be more common in NF: disfigurement(from tumors), scoliosis, learning disabilities, macrocephaly(large head)that may or may not be due to hydrocephalus, optic gliomas(tumors), congenital defects of bones, high blood pressure, early or late puberty, problems with growth (too short or too tall), mental retardation, epilepsy, higher risk for certain rare malignancies in tumors, brain tumors, stroke, itching of skin, hormonal effects, and a rare childhood lukemia called jmml. (This list in nowhere near exhaustive.)

19.Nobody has all of these effects. Most of them are rare, but still possibilities.

20.From that list Abigail has macrocephaly, and problems with growth.

21.Not on that list that Abigail also has are noonan syndrome facial features, and low muscle tone.

22.NF1 is considered progressive. This does not mean it will one day kill people who have it. It means, in general, that more symptoms show up over time. So even people who have a mild case at 40 most likely have more symptoms than they did at 5.

24.NF can kill you.

25.There is no treatment or cure for NF.

26.There are some treatments for the tumors, scoliosis, etc. that occur with NF.

27.NF tumors are not the same as those in the general population, and require different treatments. Things like radiation can cause them to grow.

28.NF has no indicators of how bad it will be. It must be taken one day at a time and dealt with as things come up. You can never rest in the fact that things are stable or will only get better from here.

29.Our daughter having NF has affected Jason and I in very different ways.

30.No matter what the future holds, God knows, and that's what we must learn to rest in.

I really wanted to get more facts out there because so many people ask so many questions. All of the information was taken from www.ctf.org. Families affected by NF seem to be the only ones who know much about it. Even the medical community, outside of doctors who treat specific aspects of it, seem not well informed, or misinformed. You will come across a doctor here and there who knows about it, or who is willing to research it. You will also come across doctors in the e.r. who ask you where the tumors are, or the one who said about my daughter "don't you wish it was like a puppy you could give back." It's important for these reasons for us to know the facts, and to know who God is.

Hoping you are feeling a little more educated,

Saturday, March 6, 2010

Our toddler :)

I thought I would share a video of our very active 18 month old....being herself. Enjoy!
video

Loving having an active girly,

Wednesday, March 3, 2010

I feel good


One of the millions of reasons we should try to find a cure for Neurofibromatosis.


This isn't meant to be boastful. I am doing much less than others. However, ever since this NF thing has come into our lives I have wanted to do something, anything to be proactive. I have spent time talking to other parents, other patients of NF, researching NF, and the list goes on. I have tried to think of what I could do to make this "better."
In the grand scheme of things there is nothing I can do. However there are a couple of organizations that do research to find treatments and hopefully some day a cure for NF. I have gone back and forth with wanting to do a fundraiser of some sort. I have decided to go for it. If I raise one hundred dollars and it helps to fund a very small amount of research, it will be worth it. I need to do something so that I feel hopeful about the future for my daughter.
So today I took my first step. I live in the same town that Garfield was started in. Jim Davis has a studio here. So in learning that www.NFinc.org has what's called National Doodle Day I decided I would do something. I called and asked if they could send a drawing. The drawings are auctioned on e-bay in May (national NF awareness month) and the money is used to fund research. Okay this was a small step since all I had to do was make a phone call and send a few e-mails. However it feels good. I want to help.
I don't know tons of famous people who can send drawings, but I have other things I can do. I am hoping to do some much bigger fundraisers here locally. I am hoping to make this disorder known in my town, county, and even state.
So for anyone reading this who knows someone famous or is interested in bidding on a drawing of a famous person you can check out http://www.doodledayusa.org/index.php .
Also if you are interested in donating money to one of the organizations anonymously or in honor of Abigail you can go to http://www.nfinc.org/ or http://www.ctf.org/.


Thanks for once again reading my rambling thoughts for the moment,