Wednesday, October 27, 2010

Much needed updates!

A week and a half ago I posted about the Spina Bifida Worldwide Day of Prayer, and I haven't updated because there was news I wanted to share but didn't have permission yet. The day of prayer started in response to one woman who is pregnant with a baby who has Spina Bifida, and she was considering terminating the pregnancy. Last Wednesday was her first appointment with a pediatric neurosurgeon (and I have to say, most people who terminate do not go through with this step, and it's very important), so that was the significance of making that the day of prayer. We prayed for her to have an open heart and mind and for the doctor to give accurate and hopeful news.

What an amazing day that was. There was so much excitement and anticipation leading up to it, as we (other SB moms and I) spread the word on our blogs, through emails, to our church groups, and on Facebook. On Facebook alone, there were THREE THOUSAND people who committed to praying at the same time! And that does not even count the numerous prayer chains, prayer groups, family members, coworkers, and strangers who were not on facebook but heard about it anyway. And let me tell you, it was powerful, and it felt great. I knew that, no matter what this one mother decided, there were thousands of people with their eyes toward heaven praying for the futures of babies with Spina Bifida, and nothing bad could ever come from that. It was a rush.

That night, I kept checking my email for an update from the mom about her visit with the neurosurgeon. I finally went to bed and was reading, but all of a sudden I decided to come back downstairs and check my email again. And there was her update. The neurosurgeon told her the baby's lesion was low and small, the baby was moving its legs and looked great, and it has no signs of hydrocephalus. What does that mean? Pretty much best case scenario. She said she and her husband felt hope for the first time in weeks. They decided to keep the baby.

Praise God!!!!! How amazing is that? I still haven't gotten over it.

And yet, even after seeing the amazing power of prayer, I sometimes still have trouble practicing it in my own life. Just this weekend, I realized how terribly worried I have been about Nate. Not just about one thing, but many areas.

1. His school. Yes, I know he's just in preschool! A couple weeks ago I went to his parent-teacher conference, and his teacher mentioned that there is a man coming to observe Nate for a program for children with physical limitations to see if he qualifies, and he will be at the meeting where we discuss Nate's transition to Kindergarten. First--whoa--I have to start thinking about Kindergarten already?! And hold up! A special program?! Still, I'm getting anxious just typing this. I wasn't expecting that. I just thought he'd go to the same school he's in now, with an IEP. I asked, aren't there other kids with physical issues at this school? She couldn't think of any. Really? So I've been doing a little research about it, and maybe it will be a good thing. He would be in a regular classroom all day--they'd just maybe have an aid or co-teacher in the class to help Nate (and others) when needed. Then there's the whole issue of which school Nate should go to next year, and we're looking up test scores and ratings. Then there's an issue with the playground at school--there is just nothing on it that Nate is able to do. I hate saying that because I am definitely NOT one of those moms who says such things in front of my son or announces what my kid can't do, but the reality is he can't do anything on this playground. It's not at all accessible, and it's hard. They won't even let the preschoolers on parts of it because it's dangerous. So Nate is just running around by himself or getting in trouble for throwing mulch--well, what do you expect him to do? The PT's answer to this was to bring a tricycle for him to ride. Um, that would be great, except he'd have to be 100 feet away from all the other kids to ride the trike on the concrete pad, and he already has trouble engaging with the other kids--that's even an IEP goal! I'm just confused and not happy, and I'm calling an IEP meeting, dangit!

2. Nate has some major sensory stuff going on right now. For about a month, he has been putting his fingers in his mouth. Why? I have no idea. Apparently he needs "oral sensory input." But, it's cold and flu season, and that's just not sanitary. So I bought him this chewy necklace that's specifically made for this purpose, and we're encouraging him to chew on that instead of his fingers until this passes. Now he's getting in trouble at church and at home for swinging this necklace around and hitting others. Sigh.

3. His seizure meds come in sprinkle caplets, and twice a day we have to mix them in pudding or yogurt or something. And twice a day it's a battle. So at our last visit to the neurologist, we asked if there was a liquid version--yes! The way it's mixed, it only lasts two weeks, so we have to refill twice as often, but it was so worth it when for two weeks, we could give him his medicine twice a day with no fight. The second time we picked it up, the pharmacy said that Medicaid is now refusing to pay for it. Medicaid has never refused to pay for anything. So after our primary insurance, it was going to be $45. Twice a month. No, we aren't going to do that. So now we're appealing it and back to the sprinkle caps and hating it. I know this sounds like a very minor thing, and it is, but it's discouraging when it was just so easy for two weeks, and pretty much nothing is easy with Nate.

4. Potty training is stalled. I don't even really want to go into it--exhausting.

This has been all that Blake and I have talked about. What do we do, what are we doing wrong, how do we fix this, why is this happening. On Sunday I realized--I haven't prayed about this stuff. Well, that's not technically true, since all of these overarching issues are ones we've been dealing with for awhile, and I finally get to the point where I just give it all over to God. But then I take it back without really realizing I'm doing it. So that's what I'm doing again. I don't know the future, and I often don't understand Nate. I have no idea what school he should go to or if it even matters! I don't understand sensory issues, and I have no idea what to do to make it better. But I'm very glad that God knows the future and will lead me in the right direction if I trust Him too. And I'm very glad that the God who knit Nate together in my womb knows him inside and out and understands all of his quirks. It's going to be okay.

Even though I worry about him, Nate makes me smile more than anything. :) Yesterday he told me, "I like trains. Trains are awesome! Click on over to I love toy trains dot com!" What? Where does he come up with this stuff? I did look for that web site and was relieved that it doesn't exist, because I would have wondered about Nate sneaking on my laptop when I'm not around! Tonight we had cheese canneloni for dinner, and he was very cute trying to pronounce it. A few minutes later, out of the blue, he said, "This is great pasta." Ha! And tonight he and Georgia were chasing each other around the living room, and he said to her, "Come on, little fella!" It's just fun to sit down and have a conversation with him.

Georgia is apparently going through a growth spurt, because all she's doing is eating and sleeping. She often eats more than Nate does, and she is always ready for her next snooze. She's now in that phase where she says, "Uh oh" and THEN drops her cup in the floor! Stinker! She is saying more words every day and can almost hold a little conversation with you. A few days ago, Alisa said Georgia pointed at her banana. Alisa said, "Oh, do you want some of my banana?" Georgia said, "Yis." Alisa said, "Yeah, how does that sound?" Georgia said, "Good." And then she ate the whole thing! She will be 15 months in 4 days.

The weekend before last we went to the Halloween party at the zoo, where the kids got to wear their costumes for the first time. Nate was in a really foul mood until he got to eat some candy. All the way home he repeated, "That was so much fun." We have a big upcoming weekend planned: A pumpkin-carving SBAK playgroup Saturday afternoon, then the kids and I will go to Aunt Mindy's house for trick or treat night in Berea, then on Sunday we'll head back home for trick or treating here! Oh, the candy.

Monday, October 18, 2010

Let's Pray!

Do you ever get a little scared when you have an idea and then it actually takes off? That's what I'm feeling like now! It is really humbling (like in a scary sort of way) when hundreds, possibly thousands of people are reading something I wrote and didn't even really proofread, lol! I feel like I am leading a lot of people in prayer, and I am really scared of leading people in prayer!

But then I remember who is behind all of this. It is not me. It's all God--all by Him, all for Him.

If you are now thoroughly confused, let me explain. Many of my SB moms and I are all fired up this month about Spina Bifida Awareness Month, and especially about giving expectant moms hope that their babies are perfect gifts from God and they do not need to terminate their pregnancies. We want to DO SOMETHING. But we all keep coming back to "But all we can do is pray."

So, what if we all pray about it. And we do it at the same time. And we invite our friends and families and churches and strangers to pray about it with us. Imagine what could happen.

So I created a Facebook event called the "Spina Bifida Kids Worldwide Day of Prayer." We will pray this Wednesday, Oct. 20, at noon EST. As of right now, more than ONE THOUSAND people have committed to pray. And I won't be surprised if the ground shakes a little bit.

Below is what I wrote for the Facebook event, and it lists our specific prayer requests. If you have a facebook account, follow this link to say you're attending. If you're not on facebook, just let me know if you are participating.

***
October is Spina Bifida Awareness Month, and we SB moms have on our minds, more than anything, the precious unborn babies who are so often terminated before they even have a chance to prove their lives have meaning and value to the world. To say that 50% of all Spina Bifida affected pregnancies are terminated is a conservative estimate. But we SB moms know there is no reason to terminate a baby because of SB. Our children are be...autiful and intelligent gifts from God who have every opportunity to live full, productive, and totally normal yet extraordinary lives.
So we proclaim Wednesday, October 20 as the Spina Bifida Kids Worldwide Day of Prayer. We believe in the power of prayer, and we are excited at the prospect of many people praying at the same time for these unborn babies. We moms can make a difference individually and collectively, but that is nothing compared to the change that can come if we have God on our side.
We will begin at noon EST. Pray for as long as you feel led. Pray individually or with another person or group. On your knees, at your desk, while driving your car … the logistics do not matter.
Here are a few things you can pray about specifically:

1. There is one woman in particular who is on our hearts. God knows who she is. She is expecting a child with Spina Bifida, and she is afraid and considering termination. Today (Wednesday) is her appointment with a pediatric neurosurgeon to find out the severity of her baby’s case and to learn more about the diagnosis. Please pray that she will go to this appointment with an open heart and mind, that the doctor will give her a prognosis that is realistic and hopeful (we believe these adjectives are not mutually exclusive when talking about SB), and that most of all, God will give this woman a peace beyond understanding and a clear indication that she should keep her baby or give it up for adoption. There are many mothers willing to adopt this baby.
2. Obstetricians are usually the doctors who first diagnose Spina Bifida based on a prenatal ultrasound. Unfortunately, most know very little about SB except for what to look for on the ultrasound. Many of us were told by our OBs very scary and inaccurate information, such as “Your baby will likely not survive,” “She will be a vegetable,” “Terminating is the most loving thing you can do for this baby.” If this is the first time you’ve really even heard of SB, and a doctor you trust tells you this, you’re probably going to believe it. Please pray that these doctors will be educated about the SB prognosis so that they can give the diagnosis accurately and compassionately.
3. We SB moms will always remember the day we received the diagnosis as one of the most terrifying days of our lives. An initial grief response is denial, which often presents as “Please make this problem go away.” Termination is offered quickly. Please pray for these mothers and fathers, that they will first and foremost trust God to get them through this scary and uncertain time instead of letting fear guide their decisions. That God will draw near to them and make His presence known, as He did for so many of us. That these parents will be so filled with His peace about the future and love for their child that they will consider carrying the baby to term the easiest choice.
4. These precious babies are absolutely innocent and helpless. They are being thrown away because they are not “perfect.” Not one of us is perfect. Please pray for the lives of these babies to be spared. That each movement and kick will remind the mother that God knit that baby in her womb exactly as he or she should be. That their lives will bring glory to our Father.
5. Many of us SB parents cite the support of our family members and friends as the biggest comfort during the time right after receiving the diagnosis. But there are also families and friends who are unsupportive and even encouraging of termination. Please pray for these family members and friends, that God will use them to minister healing to the parents’ breaking hearts. That they will be wholly supportive, not hurtful, and they will lift up and help these parents as their raise their child.
Feel free to add other suggestions for what we should pray. And please pass this on to friends, family, church prayer groups, prayer warriors, pastors, and strangers.
“Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my Father in heaven. For where two or three come together in my name, there am I with them.” Matthew 18:19-20 (NIV)

Wednesday, October 13, 2010

Things overheard at the Payne house

Nate:
My feet are soooo hungry. They're ready for a snack!

My daddy is a giant.

(After tasting his green grapes) Hmmm. These taste like grass and my potty.
(Note: He has never tasted his potty, that I know of. It just happens to be green like grapes and grass.)

My wheels are tired.

That train is in my heart. And that train is in my heart. And that train is in my heart too.


(Flipping through a parenting magazine over and over until he finds an ad with a little boy in it.)
"There you are! I was looking for you everywhere in this!"

Georgia:
Puts pair of pants on her head and LAUGHS and laughs and laughs. Then takes them off. Then puts them back on her head and LAUGHS and laughs and laughs.

Kittens:
We wake up in the middle of the night to THUMP! KATHUMP! THUMP! The kittens take run and go's and hurl themselves up agains our bedroom door over and over again, until they bust it open.

Mama and Nate:

Mama: Nate, guess what! Memaw and GrandBob are coming on Thursday to stay with you and Georgia for a couple days while mama and daddy go to Las Vegas!
 
Nate: Begas? But I will miss you!
 
Mama: I'll miss you too, but you're going to have so much fun playing with Memaw and GrandBob.
 
Nate: But they don't live here.
 
Mama: They'll live here for a couple of days while we're gone. I bet Memaw will teach you new songs and play games ...
 
Nate: And maybe she'll play trains with me? (big smile)
 
Mama: Absolutely.
 
Nate: Is it Thursday yet?
 
*********
Okay, we're leaving in the morning for our trip to Las Vegas!!!! The company that Blake works for offers a Vegas trip as an incentive every year. Last year Blake went by himself and I stayed home because Georgia was only 3 weeks old. This year, we're leaving the kids at home! We've only spent the night away from Nate twice in his whole life, and both times were this year. I spent one night away from Georgia back in August, but Blake was here with the kids. So three days and two nights with both of us away ... I'm a little nervous! Nate will miss us, but he'll be fine. Georgia on the other hand ... I'm not so sure! I just hope she sleeps for Janie. She will probably surprise us all.
 
Even though I'm nervous about leaving the kids, I'm also really excited! I've never been to Las Vegas, and Blake and I haven't been on a trip by ourselves since our honeymoon 7 years ago! It's about time!

Saturday, October 9, 2010

My Spina Bifida Awareness Month Post

For the last week, I've been thinking I need to write something about October being Spina Bifida Awareness Month, but I've just been mulling this around in my head. I'm always asking myself and others "What's the point?" What is the goal of this SBAK class we're doing? What do we want to accomplish with this mailing? What outcomes do we want to see from this event? And that's what I've been struggling with:

What's the point of Spina Bifida Awareness month?

I've never completely understood awareness ribbons. Breast cancer awareness--Who is NOT aware that breast cancer exists now? What's the real purpose? To me, it seems the purpose is to make us women aware that we need to do self breast exams and get checked out by our docs from time to time. Okay, that's a worthy goal, but is that the clear message we hear this month? And Autism ... well, the awareness campaigns have been pretty successful, I guess. Every time I see one of those puzzle clings on someone's car, I see another person affected. But again, what is the point of this awareness?

Every now and then I see a Spina Bifida Awareness ribbon or car cling, and I've actually never been a fan. To me, that just says, "Hey! Look at me! My kid has Spina Bifida!" So? Is that what I want everyone who passes my car to know about me and my kid? How does that help anything? (To be fair, probably the only reason I don't have one of those ribbons on my car is because they're not easy to find. I wouldn't go online looking for one to order, but if someone was selling them in front of me, I'm sure I'd buy one.) I have bought a bracelet that says "Spina Bifida Awareness--Hope." And I've just bought some awesome T-shirts that say "Redefining Spina Bifida." Those are clearer messages to me. (Okay, it's totally becoming apparent that I was a communications major.)

So tonight I finally sorted it out in my head. For me, there are two great things that can come from Spina Bifida Awareness Month. For others there might be other goals, such as advocacy for their children. But these are the two that stand out to me:

1. To make all women of childbearing age *aware* that they need to be taking their vitamins BEFORE getting pregnant. And since about half of all pregnancies are unplanned (60% in Kentucky, fyi), that means all of us should be taking a multivitamin or prenatal to help prevent birth defects by up to 70%. (Preaching to myself here too.)

Some people say they eat a healthy diet, so that's good enough. Uh-uh. Did you know you'd have to eat 14 cups of broccoli, or drink 8 cups of orange juice, or eat 200 medium red apples EVERY DAY to get enough folic acid? Honey, just take the pill and get it over with.

I'm going to be honest, I know this is an important goal simply because most people really are unaware, but this has never been my fire. I do work health fairs and explain all this to women, but it's sort of beside the point for me. And I know it's because I was taking 1mg of folic acid 4 months prior to getting pregnant, and it still happened. I also know it happened for a reason.

2. The other goal I see as important for SB Awareness Month is to let women know that if they find out their unborn baby has Spina Bifida, there is no reason to terminate that pregnancy. This is my fire.

I totally understand that overwhelming fear, because I was there too. I also wished the "problem" would just go away. I also got bad news ... The most severe form of Spina Bifida. L2--higher than average. Arnold Chiari Malformation and hydrocephalus. It was terrifying.

I chose to trust God. I knew He doesn't make mistakes, and if He gave this child to me, He was going to help me raise him. And I don't want to sound like a crazy person, but He told me so. I heard Him. Not audibly, but very clearly.

And this is what I got:

handsome! ...

 silly ...

train-loving ... 

outgoing ... 

stubborn ...

Did I mention train-loving? He really, really loves trains ...

brave ... 

HAPPY! ...

running! ...

fun-loving ...

 
Daddy's boy ... 

totally adored ... 

musically gifted (That's right, I said it! He's gifted!) ... 

hard-working ...

Superman!

Does that look like a boy who has a poor quality of life to you? Does he look sad, or sick, or disabled?

Some might say, "Well, sure, but he's an exception." No, not really. It's true--Nate does not have a whole lot of medical issues. I know some kids who have fewer issues than Nate, and some who have more. But you know what? I think all of us think our kid is the exception. We all consider our kids miracles, and they ARE because we gave them the chance to be. Not because we're any braver or stronger or more patient or better parents than anyone else, but only by the grace of God.

Tuesday, October 5, 2010

Pumpkin Patch Pictures

On Saturday, Mindy and I headed out to Huber Farm to do a little pumpkin picking with the kids. It was a beautiful sunny day--warm in the sun but a little chilly in the shade. The perfect fall day.

We started out with a little shopping.

I got two little ornamental pumpkins for the kids and two pie pumpkins for me and Blake. Later, I drew faces on each of them to represent our family. Georgia's has a pacifier, Blake's has a goatee and glasses, and mine and Nate's have freckles. :) 

Anyway, we ate and wandered around for awhile.


By this time it was getting pretty cool, and I had to find a jacket of Nate's in the truck for Georgia to wear.

Then we took a ride out to the pumpkin patch. This was Nate and Georgia's favorite part of the whole day. Georgia clapped all the way out.

Once we got out there, the kids raced around while we looked for the perfect pumpkin for carving.




By the way, this looks just like a picture of Nate from two years ago, but I can't find it right now to compare the two.



Then it started raining. Bummer. We headed back in and listened to some music for awhile under a tree.

Here are a couple of really funny videos of Nate and Georgia dancing.



But pretty soon Georgia was shivering, so we left. On the way home, the road was so wet I actually lost control of the truck! Everyone was okay, but I was shaken up. Nate laughed.

So we have our pumpkins and our apple pie and our pictures. I guess that will do until we try it again next year!