In Shock

I just found out that my very best friend from Africa is going through a terrible tragedy...her baby boy lived four days and then died, complications of T13.

My friend is from Canada, she married late in life, and they suddenly found out they were having a "surprize" baby. I don't even know if she was comfortable yet with being a mom, and now, her son's been taken away from her.

Again? Really? Another godly friend going through unspeakable heartache? Another friend saying goodbye to their child?

Picky Picky

Do you have a picky eater? I sure do! My firstborn is the pickiest (or is it pickyest?) kid I have ever met. His meal repetoir consists of only a few things. It makes for packing his lunch very difficult. I mean, it's better that he eats SOMETHING rather than nothing, right?
I know, I've read Dobson and Kevin Lehman...put the food in front of him and let him decide when he wants to eat. Eventually he will get hungry enough that he'll eat what's offered. Well, I don't think they've ever met my son. He would rather starve than have a grape touch his mouth. (I know, what kid doesn't like grapes? MINE!)

Here is a list of what is currently considered acceptable food:
**applesauce (but only the pre-packaged kind. If it comes from a jar that you have to put into its own bowl...no!)
**Cheerios (we only eat the Multi-Grain kind, so at least that's something?)
**yogurt (but only the Yoplait Thick and Creamy, Orange)
**pretzels
**hot dogs (with a bun, ketchup)
**french fries( but only the fast food kind, not the kind I make at home, either from scratch or frozen)
**waffles (I buy the low fat/ whole grain)
**pancakes (the kind daddy makes)
**bread (no butter or any other kind of spread, oh, unless it's ketchup)
**bananas (only if there's no brown spots, or strings)
**any kind of junk food (cake, cookies, ice cream, chips, fast food chicken nuggets)
The kid does drink a TON of millk, so that's something.
Ok, that's really about it.
Would you like to know what my crazy kid will not eat (besides grapes)?
mac and cheese
pizza
cheese sticks
peanut butter and jelly
honey

Crazy, I know!

The Trouble With Little Boys...

Josh is in the midst of potty-training. (I HATE potty-training!) He's learned to recognize the urge when he has to go #2. A couple of times I've seen him get a book and go behind the couch (with a pull-up on) to relieve himself. He also likes to spend a good part of the day without pants on, often without underwear too. His favorite thing to do is trun on a movie, sit on his potty and order me to get his milk and a cheese stick.

I have often found Benjamin sitting on the couch watching tv in his underwear with his hands down his pants.

The trouble with little boys is that they grow up to be men!

In the NAME of Jesus

Since Rachel's turned a year old, I get a lot of questions whether she is walking or not. Afterall, it would be a normal milestone for her to be in the beginning stages of learning to walk. But, Rachel is no normal kid; she is EXTRA-special.
I have been thinking a lot about what we need to do to get her to walk; that is our goal. As I was thinking about this, I was lead to a story in the Bible, the book of Acts to be correct.
Read it for yourself and tell me if anything sounds familiar. (I've added BOLD ITALICS in a few areas.)

One day at three o'clock in the afternoon, Peter and John were on their way into the Temple for prayer meeting. At the same time there was a man crippled from birth being carried up. Every day he was set down at the Temple gate, the one named Beautiful, to beg from those going into the Temple. When he saw Peter and John about to enter the Temple, he asked for a handout. Peter, with John at his side, looked him straight in the eye and said, "Look here." He looked up, expecting to get something from them.
Peter said, "I don't have a nickel to my name, but what I do have, I give you: In the name of Jesus Christ of Nazareth, walk!" He grabbed him by the right hand and pulled him up. In an instant his feet and ankles became firm. He jumped to his feet and walked.
The man went into the Temple with them, walking back and forth, dancing and praising God. Everybody there saw him walking around and praising God. They recognized him as the one who sat begging at the Temple's Gate Beautiful and rubbed their eyes, astonished, scarcely believing what they were seeing.
The man threw his arms around Peter and John, ecstatic. All the people ran up to where they were at Solomon's Porch to see it for themselves.

Faith in Jesus' name put this man, whose condition you know so well, on his feet—yes, faith and nothing but faith put this man healed and whole right before your eyes. (from The Message, Acts 3:1-11, 16)


I believe that Rachel will walk. You know where my faith is...

Spring...

God's Grandeur (Gerard Manley Hopkins)

The world is charged with the grandeur of God
It will flame out, like shining from shook foil;
It gathers to a greatness, like the ooze of oil
Crushed. Why do men then now not reck his rod?
Generations have trod, have trod, have trod;
And all is seared with trade; bleared, smeared with toil:
And wears man’s smudge and shares man’s smell: the soil
Is bare now, nor can foot feel, being shod.

And for all this, nature is never spent;

There lives the dearest freshness deep down things;
And though the last lights off the black West went
Oh, morning, at the brown brink eastward, springs—
Because the Holy Ghost over the bent
World broods with warm breast and with ah! bright wings.

(I think my favorite poem of all time.)

Dear Rachel

Dear Rachel,

Today we celebrate your first birthday, a wonderful milestone for any child but especially poignant because of the start you got: we were told that you would not live, that we would have to consider termination, that we'd have to think about organ donation. Terrible news, yet from the very beginning you continued to defy everyone.

You did not die: you lived and have done it so well.



This past year has been emotionally turbulent. There's been lots of crying but none from you. You have remained ever graceful and elegant. Though your little body has been scarred, you have not complained. Though you have been prodded and examined and tested and Xrayed and scanned, you have never been disagreeable. You have endured it all with a smile on your face. You are amazing.



I often think about how our life would be different if you didn't have Spina Bifida. Easier, yes, but would we be as grateful? No. Would we know in a very real and personal sense how God walks with us through heartache? No. Would we know and have experienced a miracle? No.



Daddy and I have been over and over how this happened, what we could have done differently to spare you this. The only way I can explain it is this: Remember that day Joshy was trying so hard to fit his Spiderman on the John Deere tractor? He worked and worked and asked me to help. I worked and worked, but no matter what I did, it just didn't fit. I said to him that Spiderman just wasn't made to go on the tractor. No matter how hard I tried, it would not work.



In the same way, we were not made for this world. Sure, there is a lot of joy to be had in this world, but Darling, you were not made for this world. This world is broken, and in one way or another, everyone discovers that, whether it's their body that doesn't work as it should (as in your case) or relationships, or heartache.

It SUCKS that your toes and ankles don't work and that you will forever be dealing with that. I am sorry! I wish I could do anything to change that, but I know that "this" is not as good as it gets. I KNOW that we were not made for this. That's where my hope lies: you WILL walk unassisted someday. You WILL feel the sand between your toes, just not in this lifetime.

(I also know this, that the day Jesus takes Spina Bifida by its scrawny little neck and kicks it's butt into nothingness, you and I will be standing right by his side!)



Rachel, you will have many needs throughout your life, but remember that everyone does: we can just see yours. I pray that you keep the sweet disposition you have now. I pray that you bring joy to those around you. I pray that people are kind and enlightened about SB from knowing you. And Daddy (and I) pray that you will dance. We want you to worship the amazing God that loves you and made you. Your feet don't work, but you are sweet and gentle and cute (sorry, but it's true. In this society we live in, good looks can get you farther than working feet.) I know a lot of people whose feet work but are pretty miserable! We are working really hard to get you to dance in in life and through life.



You are forever my amazing miracle girl! I am so grateful to God for you. I know that you will continue to defy the doctors, amaze everyone.

Rachel, you are beautiful (as your name means). Elianna, God has answered my prayer (also as your name means).

All my love, Mommy

Rachel's Team

These are some of the amazing people who have been working with Rachel for the last year. We see these people weekly, monthly...let's just say that we spend A LOT of time with them! :)There are several I have not gotten a picture of yet but will!

Marcia, nurse who did my weekly "non-stress" tests

Laura, sono technician who did the weekly sonograms

Peggy, midwife who delivered the initial news

Sue, Spina Bifida nurse at Shriners

Dr. Schrantz, Orthopedic doctor at Shriners

Theresa and Janet, Rachel's Physical Therapists at Shriners

Pamela, Spina Bifida nurse at CHoP

Jen, nurse at Dr. Stark's office

Dr. Stark, Family Physician

Dr. Russell, doctor of Physical Medicine at CHoP

Dr. Giles, doctor who diagnosed and delivered Rachel

Alan, Physical Therapist with Early Intervention

It's All About Jesus...

Happy "Devastating Friday"

I often wonder what the followers of Jesus thought as they watched Jesus die. On that devastating Friday so many years ago, they watched the one in whom they placed all their hope perish. I wonder how they could not help but feel all of their hopes perish with him?
See, we know the end of the story. We know about Sunday and the indescribable elation that they would feel. But, they had no idea that Sunday was coming.
In a very real sense, John and I can relate. On a Monday morning, all of our hope was destroyed when we were told that the baby I was carrying, Rachel, would not live. We were told that there was no hope.
Three days later, we went to Pittsburgh and the news we "dared not hope" was given to us. Rachel would live!! (And this precious miracle-girl is celebrating her first birthday next week!)
I cannot even begin to explain to you the elation we felt! I wanted to shout it to everyone I came across. "MY BABY WILL LIVE!"

My favorite part of the story (as of this past year) is imagining Jesus' friends coming to the tomb very early in the morning to perform some of the death rituals and finding, instead of a dead friend, a risen Savior, the very last thing they could have possibly imagined.

Friday was a devastating day for all involved, but without a devastating Friday, there can be no miraculous Sunday.

Rachel will have many needs throughout her life, but her greatest need has already been taken care of at the Cross, as has yours! Happy Easter!!

A Quiet Country Road

I did something today that I desperately needed to do: I took a long walk on our quiet country road.
It's been quite a week: today I met a lady with Spina Bifida. I really think she was trying to encourage me, but it had to opposite effect. I was so discouraged for Rachel after talking with her. Then there was the moron yesterday that almost ran over Josh. Or how about the old lady that completely cut me in line and then took forever to pay with a check. Or how about trying to go to the Y today, the first time in forever, and getting paged to babysitting after 30 minutes. (One hour, is that too much to ask, kids!!) Or how about the "kid" who spilled his juice all over my new shoes. Did I mention that it was red juice? UGH!!
So trying to capture the beauty and peace of today and life in the country, I took the kids on a long walk down our road. There's a gorgeous waterfall on our walk, and thanks to the recent rainfall, made for a flowing falls. Part of the walk took us through trees, and we heard the sounds of nothing but birds singing. Ahh, perfection.
I hear the baby crying now instead of taking her nap: maybe I'll have to go on another walk!