Praying For My Children

WOW! It has been a long time since I have posted! We're just really busy, I guess. A little update on Rachel: she gets her casts off this Thursday! She is so excited and lists all the things she'll do when the casts come off: walk, march, dance, run, use the potty... For a two year old, that girl has BIG plans!!

(Now onto the post...)
I was reminded at church last night about prayer. We have been going through the Lord's Prayer, found in Matthew 6.

I have prayed and continue to pray, first of all, for my children's salvation. I want them to know and have a personal relationship with Jesus. That is the most important thing.

Secondly, I pray for their safety: physically, emotionally, spiritually. I know that the Bible says that the Angel of the Lord encamps around those who fear him (Psalm 34). You better believe that I welcome that angel!! I also pray for a hedge of protection around them. I pray that they would be kept from evil (intentional) and harm (accidental). I also pray that Satan would be blinded where they are concerned.

I pray for my children's future spouses. I pray that God would save them at a young age, that they would love and serve God. I pray that God would keep them from so much of the garbage in this world. I pray for their protection as well.

These are the main ways I pray for my kids. I mention their names often to God.

A Portrait of Grace

Since our life was completely turned around, since Rachel's diagnosis and treatment, we have received so much grace, so many kind words and a few extra-ordinary acts of kindness. We really have not asked for anything, other than thoughts and prayers, but a few people have really gone out of their way to show kindness to us in tangible form: gift cards, flowers, homemade goodies.

Many of those friend have been fellow believers. And by believers, I mean, people who believe, as we do, that Jesus is the Son of God and that it is through Him alone that salvation is found. Some of you believe with us; some of you don't. Either way, we are honored that you are here, following this journey with us. Well, as believers in Jesus, we are called to be like-Jesus, so in one sense, extra-kindness (or grace)is expected.

I think that what has been so amazing to me is that a lot of the grace that we have been given in this difficult road we are walking, is given by non-believers, people that are not necessarily called to the standard of grace-giving that believers in Jesus are held to...
I have thought about that often...that some of the kindest people I know are not believers...

And when I think back on my life, I think about some of the people that I have hurt the most and the amazing grace and forgiveness that they have shown to me...high school friends I was more interested in gossiping about than protecting their proivacy...Africa friends that I left in the lurch...people I have been condescending to or just plain unkind...

And then I think about the beautiful gift that I have been given: a second chance, forgiveness, grace...and I want to be a person full of grace. I want to be a person that looks at the good in people. When people say something stupid or off-handed about Rachel and her condition, I want to be grateful that they are curious about her and thankful that they are concerned, though they may not express it in the most tactful way. Instead of being a complainer, I want to be grateful for what I have.

I am a broken person; I am a believer in Jesus. The two are not mutually exlusive. I am trying to live authentically and honestly. I have been given so much grace in my life: I want it to pour out in my dealings with others.

Life As We Know It

Things here have been busy! The three older kids have been starting back to school: Ben is in 2nd! Rebekah is in 1st and Josh is in MWF preschool.
Our house is still under construction! The cement for our new garage was poured this week! How do we live in the snow belt of the snow belt and NOT have a garage?!?! I am just not sure that it will be ready before the now flies here, which, by the way it looks outside now, could be any day! (Our weather, literally, went from 90 degrees to 50 degrees overnight!)
And little Miss Rachel: she is recovering so well from her surgery. It's been about a week and a half since Rach got her "NEW FEET"!!! She came out of sedation very well and was able to go home the following day. I tell everyone that Rachel is SUCH a trooper! She is the EASIEST baby I have had...so far! I do think that once her feet heal and she gets some stability under her, she is going to give me a run for my money! Which is great with me! I want that kid to be on the move! She tells me that she is going to "Walk, walk, walk! March, march, march! and Dance, dance, dance!" (By the way, John has always prayed over each kid: Ben- a kind heart. Rebekah - to have joy. Josh- to have courage. and Rachel - that she would dance before the Lord in worship...and her day is coming!!!)

So, everyone here is doing well! Thanks for checking in! (By the way, I am still having trouble uploading pictures, thus no current ones!)

"F" Day for Rachel

Well, this morning is "F" day for Rachel: Feet Day, that is. I would be lying if I didn't say that this momma is a little nervous. We would appreciate all of your prayers!!

Have a great day, everyone, and remember little Rachel today!!
(GRRR!!! Darn technology again: I could not upload a picture of Rachel this morning!)

Hello???

Hello? Anyone still out there? I know it's been a long time, but we have been BUSY!!! I won't even begin to tell you everything we have been up to this summer.

Lately though, we have a lot going on:
On Monday, August 30th, Rachel is having surgery on her feet.

On Monday, August 30th, Ben and Rebekah are starting school.

And we are currently in the middle of a major house renovation.

Not like I don't have a lot going on, eh? Well, if you think of it, please be praying for us! I will update on everything when I get the time...or not!

By the way, I HATE technology! I have had a lot of issues with my connection, loading pictures, uploading pictures, etc LIke, right now I am trying to upload some pictures, but it won't let me. GRRRRRR!!!!

Update on Rachel

I know...It has been a LONG time!! I got out of the habit of blogging and then it just seemed too much to get back in...
I will just pick up here...

Rachel is scheduled for surgery on her feet on August 30th. She will be having an Osteotomy and work on her feet. We are not sure what all will need to be done to her feet yet...

Most Spina Bifida kids do not have a lot of control from their hips down, so to wait until they are three is no big deal. Rachel has great control/ function to her knees. From her knees up, she is like a normal two year old...below her knees are different story. So, it will benefit Rachel to have her surgery sooner rather than later.
At her doctor appointment back in February, they wanted to do it at the beginning of Spring (May?) and then she would be in a cast for around 6 weeks. Here in NW PA, we have terrible weather for 9 months of the year and then great weather for only a few in the summer. I really did not want Rachel to be in casts while the other kids were playing outside, going to the beach, swimming...you get the idea. Plus, we can get really humid weather here too, and we do not have air conditioning...It just didn't seem fair to Rachel. So, I asked if we could push her surgery out until the fall. We got a preliminary pre-op date (for testing, X-rays, things like that) in late August. Well, the last time we saw her team, they really felt the surgery needed to be done sooner rather than later. With Spina Bifida, there is no easy fix. So, although Rachel is wearing bracing to help keep her feet straight, those braces are also causing skin irritation and bruising.
Well, her team at Shriner's here in Erie also has concern that her feet problem is not being caused by a tethered cord (Hard to explain, but picture it with me: Her spinal cord -where her defect is- flying around and attaching to something in the column. Surgery would be needed to correct this.
So, we are going to Pittsburgh a little early to get the tethered cord ruled out.

Ugh! This is not the most eloquent post I have ever written, but hopefully you get the idea of where we are right now.
Two prayer concerns (three):
1. Rachel does not have a tethered cord...that the problems in her feet are only caused by her growth.
2. Rachel's surgery: that it goes REALLY well and that the date gets changed to an earlier date. August 30th is the kids' first day of school, and I hate the thought of not being here to get them ready and on the bus, getting the pictures and all of that. The surgery schedule was full: it was Aug 30th (which was a cancellation) or wait until November...:)

The Stuff True Love Is Made Of...

Yesterday I came across my first crush on the Internet. Ok, it was on Facebook. I know a lot of people have gotten themselves into trouble through the Internet, but let me tell my story.

When I was in 4th grade, I was IN LOVE with a kid named Chris. He was SO CUTE, but more than that, he was nice. It was a crush. Fast forward 30 (give or take) years...

A friend had him as a friend on Facebook. I looked at his (locked) profile and all I could see was his picture. He is still just as adorable as ever. Can you really call an almost-40-year-old "adorable"? Well, if you can, Chris fits the description.

When I saw his picture, all those 4th grade butterflies came back. "Oh, he's so dreamy!"

I logged off the computer and went right upstairs. The first thing I did, was tell my husband...EVERYTHING. I don't have plans to cheat or leave my husband, but it always starts with a little something left out. So, I always make it a point to have full disclosure with John when I see and old boyfriend or have a dream about someone...just to be SAFE.

Here's the point:

As I was going to sleep, I started to think about Chris, and believe me, all I have to go on is a picture. I have no idea where he is, what he does, if he has kids, if he is a believer, if he beats his wife. But as I was going to sleep, I was wondering these things, and found it VERY easy to imagine him happy, in a great job, and still just as nice a guy as he was in 4th grade.

I started thinking that it would be very easy to walk away from my life and step into his.

But here's the thing, Chris hasn't seen me and my bed head, or when I've not showered in days, or when I am *super* cranky. He wasn't there and held my hand as my daughter went through surgery. He didn't hold me as I wept when I found out my daughter's feet don't work. He doesn't really have a history with me. He doesn't know me, and I don't know him.

This past Valentines Day, I was up at 3am cleaning up puke. Guess who was right beside me cleaning up the puke? Not Chris. It was my husband, John.

Yes, this life I have is full of a lot of stress and strain, but it's the life I have, the life I have **CHOSEN** to walk...with John.

Cleaning up puke at 3 am is not glamorous, but it is the stuff true love is made of.

Things I've Learned from Spina Bifida

As I was putting Rachel down to bed last night, I realized that her AFO's needed some adjustments. The velcro was coming off; the moleskin was wearing thin; the straps needed some trimming. So, I sat down to do the work of refurbishing an AFO, and I realized, this is something I couldn't do "before".

In many ways, my life has been sliced right down the middle, now marked by "before" and "after".

Now, I can refurbish an AFO. I ever KNOW what an AFO is and does.

Now, I can tell you what "Myelomeningocele" means. Heck, I can even spell it without looking it up.

Now, I can insert a cath, at least for a little girl.

Now, I can rearrange my schedule to fit in four therapy sessions week.

Now, I can fully explain Hydrocephelus, a VP shunt and tell you the signs to look for a malfunction.

Now, I do a butt-flap.

Now, I can get in three massages on little toes that don't wiggle.

Now, I think ahead and make sure there will be a cart (store) or take my stroller.

Now, I know that sneakers are really the only shoe option for my little girl. No cute little sandals or little ballet flats.

I know to find shoes that fit well over her AFO's.

Now, I can put on a rhino brace for the hips. (And by the way, wouldn't it make more sense to call it a "hippo brace"?)

Now, I can laugh.

Now, I can be thankful for life.

Now, I can praise God for everyday gifts.

Now, I can find beauty in the malformed.

Now, I know that life is more than feet that work.

Happy 4th Birthday J-MAN!!!!

Dear Joshy,

Today you are four years old! Where has the time gone? Is seems like just yesterday that you were a sleepy little baby, and now, you are a "Star Wars boy", always saying something to make me laugh or smile!! I love you!!!

January Blah's!!!

These are a few of my favorite things (that help me get through this dreary time):

Rachel's Latest Appointment

Yesterday (Monday, January 11), Rachel had a "routine" appointment with Children's Hospital of Pittsburgh. About every 4-6 months, we take her to the Spina Bifida clinic down there. If Rachel needs any testing done, it occurs in the morning, and then all afternoon, we sit in one room and her many doctors visit her to see how she is progressing.

A year ago, Rachel underwent all of her Urology testing. Everything seems to be working well, but we need to check just to be sure. That is not something that we want to miss. So, in the morning, she had a renal sonogram, an X-ray of her bladder/ kidney area, and then some blood work done.

Even though we have no reason to doubt and Rachel has not had any urological problems, I always get a bit nervous. There certainly COULD be a problem. But, thank God, all of her tests came back clear, and we don not need to see Urology until next January.

All of her other appointments went well; Neurosurgery and Physical Medicine do not want to see her for another six months.

And, we got in and out (including the tests in the morning) in about 4 hours. That's NEVER happened! Usually we are there about 8 hours.

Thanks God for a great day!!!

God's Grandeaur

(view from my front door)

It's very easy for me to see the glory of God through nature in the Spring, Summer and Fall, but I struggle with Winter. I HATE snow! I hate to be cold! I hate to go out in it, to be bundled up and rush from one warm enclosure to another.

I know, I know, I know...I live in the SNOW BELT! In fact, I live in the snow belt of the snow belt! We get so much snow, it is sickening! When the national news covers the bad weather areas of the country, it is ALWAYS my neck of the woods here featured. It often starts snowing here in October, and we don't see green ground until May. (This is beside the point I am trying to make, but each year my undiagnosed SAD (Seasonal Affect Disorder) seems to get worse and worse. Right after Christmas (like the day after) I get in a funk and can't shake it until sometime around May, April if I am lucky.)

So, my first point is...I hate snow! My second point is, I am struggling to see God's Glory in it all. I know that creation screams his presence and his praise...but really...through snow?

Those of you not afflicted to live in a "tundra" may think, "It's so pretty. It's so white and pure." Well, you spend some 6 months seeing only "white" and then let's talk! I feel so far from God, lost in this "Narnia"... I really wish we humans could just hibernate like the animals; it might even help my figure!

As I drove home today, I was thinking that I won't have warm weather until probably June. Truly folk, I cannot plant my garden until AFTER Memorial Day...

So, I was driving home, thinking about how long until it's all gone, then I had another thought...FROSTING!!! The snow/ ice looks as if everything is frosted (as in, the kind you can eat). Now, I LOVE my sugar, namely frosting. That is my number one weakness. Ice Cream for my husband, chocolate for my kids, frosting for me...

As I started to look at it all through fresh eyes...God loves his frosting too. And I guess he must REALLY love us here in NW PA, since He's given us an extra portion! Crazy thought, I know, but it keeps me going...Whatever works, right?

New

It's a new year, a new decade, a new day...so many unspoken possibilities...

I think about what my life was like a decade ago. I was a single, lonely girl with no husband-prospects, thinking I was destined to live my life alone when all I really wanted was a husband and children.

Here I am ten years later with my cup so full, it splashes over. This has been the BEST decade of my life. Period. Spina Bifida and all. There have been some things that have knocked the wind out of me, sending me to my knees but nothing that has felled me.

Why? you may ask? You were given some horrible news this past decade, things people never should hear. You are still dealing with the aftermath of that disaster and, unfortunately, will be for the rest of this earthly life...and your daughter will too...

(Here's my response...)

Therefor, we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary trouble (yes, even Spina Bifida!) is achieving for us an eternal glory that far outweighs them all. So, we fix our eyes, not on what is seen but on what is unseen. For what is seen is temporary, but what is unseen is eternal. (II Cor 4:16-18)

Life stinks, for all of us...I am not ignorant of that fact.

BUT, I also am very cognizant of the fact that there is a God who passionately loves me.

I find that I get the most depressed about Rachel's condition when I start thinking about it, when I focus on how tired I am, how much works it is for her, how far behind she is, how much my back aches when carrying her...when I focus on all that, I am overwhelmed.

But when I fix my eyes on Jesus, and think that we all CAN endure this for a little while, and I think about all she will be able to do in Heaven, I can go on, and yes, I may even have some joy.

**By the way, I am convinced that God has the biggest and the best playground reserved in Heaven for kids like my daughter, kids who are never going to fully use the playgrounds here on earth. Heaven's playground has the tallest slide, that reaches waaaayyyyy up into the sky, and the longest monkey bars...

My hope is in the fact that *this* is not as good as it gets, that there is a God who walks with us here and gives us hope for tomorrow through the person of Jesus Christ....

See, we forget one of God's specialties...He makes it all new!!!!