Now this is a seriously good story . . .

I think that going to the doctor during even a normal pregnancy can involve a certain amount of joy mixed with trepidation. Naturally, even more so with a higher-risk pregnancy.

We have heard so many good things about our new doctor that we were really looking forward to this appointment. We were also eager to get another look at Annabelle.

On the other hand, the last two times we had been to the doctor (Dr. Doom) they had ended with bad news and us sitting in the parking lot crying . . . so there is that . . .

So. About or appointment with the new medical team:

The sonographer was great. Instead of working in silence and only speaking up when something was wrong, she talked the entire time, "Now we are looking at the top of the head . . . . Now I am checking her lips . . . .Ooooh, how cute!"

Another great thing about her bedside manner was that she told us everything that was "right". "Now I am measuring the right arm which looks normal . . . . now I am looking for the left hand - all five fingers . . ." etc.

She did confirm the "lemon sign" concerning the head. She also confirmed that both feet are turned inward or "club feet". One bit of new info was that she said it looked like little Annie's' legs are bent inward at the knee as well - giving her bowed legs. My understanding is that this is correctable with braces, therapy and surgery if necessary. Not the end of the world but not good news either.

The sonographer confirmed a curvature of the spine and the presence of an opening in the spine (Spina Bifida).

Another condition she noticed is that not only does Annabelle have an opening in her spine, but she has an opening in her skin as well. This is also a symptom of Spina Bifida. It makes sense. If the area down the middle of your back is not developing properly, it could effect not only your spine but the skin that covers it. It sounds pretty gruesome but, once again, it is correctable with surgery. Again, not the end of the world but not good news either.

One a lighter note, she asked if we had done an AFP blood work test at our other doctors and I was johnny-on-the-spot with my magical black binder.

"Why yes, doctor. I just happen to have a copy here . . ." Anal-retentive peoples of the world, rejoice!

The doctor came in and he was warm and kind. "Tell me what you know . . ." is how he began.

Then he took over the ultrasound and showed us something that I thought very interesting. We took a top-down view (cross-section) of each vertebrae in the spine starting from the top and working our way down.

If you touch your thumbs together and forefingers together to make a circle, that's sort of what a top-view of a link in your spine looks like.

As a baby develops, it's spine is not a closed circle to begin with. To get the basic idea, pull your forefingers apart about three inches and slowly bring them together. That's what the developmental process looks like.

In Annie's case, the upper vertebrae have developed normally (thumbs and forefingers touching). But as you progress down the spine, a gap begins to develop (pull your forefingers apart one inch).

With each successive vertebrae, the gap gets wider and wider (pull your fingers slowly apart until they are 6 inches or so apart).

Naturally, it's not good news but it is not new news either as we had already been told there was an opening. Its just helpful to have a visual now.

Though Dr. Doom thought that the opening in the spine occurred at T4 or T5 (around the middle of the upper back) Dr. Cousins (aka "Dr. Hope") thought the opening in the spine started lower - around upper lower back (T7 or T8). This is good news as the lower the point of "splaying", the fewer problems the patient will have (this is still very bad and the standard prognosis is life in a wheelchair but we are continuing to pray for a miracle and lean on hope).

The diagnostic part being over, the doctor recommend we get out of the exam room and sit in an office where we could talk more comfortably.

Not knowing us, or what we had been through with Dr. Doom, he began very cautiously . . .

"Now, has there been any discussion of whether you want to continue on with this pregnancy . . .?"

We assured him that we were committed to little Annabelle and there was no chance of us changing our minds.

A big smile crossed his face and he clapped his hands together, "Good!" he exclaimed.

Now that's what I am talking about - that's the type of doc for Bella.

We talked some more and not only did he answer all our questions but he volunteered an overview of what we can expect.

We are in our 23rd week right now. In about 7 or 8 weeks, we will have a consult with the neurosurgeon who will be operating on Annie shortly she is born.

About 8 weeks later (38-39 weeks along) we will deliver the baby via C-section.

So that's the news. Although it is no fun to have Dr. Hope confirm much of what we were told by Dr. Doom, at least we feel like the doctor is on our side and we had a much better experience.

We are very glad that we made the switch to a new doctor and we want to thank all those of you who worked so hard to help us track him down.

As we stood waiting for the elevator to take us to the ground floor, the wife and I quietly discussed the appointment we had just been through.

"Why did Dr. Doom think it was T4 when Dr. Cousins said it was T7 or 8?" My wife wondered aloud.

I leaned right in close to Holly's face, looked in her eyes and said with conviction, "Because Annabelle is fixing herself."

It may have been my imagination but it looked like I saw the fierce fire that only a mother's eyes can contain leap up . . . , "THATS RIGHT" she responded.

Your prayers are appreciated more than you know . . .

I had to head right back to the office after our appointment and I am trying to get caught up.

I know some people are eager for an update so here is the short version (long version to follow ASAP)

- The Sonographer was good at what she does and pleasant to boot

- We both agreed that the doctor was great and very informative, helpful and compassionate

- They basically confirmed what we have already been told about Annie's condition but with more details and a couple of variations - one sort of worse and one sort of better (I think - I need to look something up)

Summary? Good experience - right decision to switch doctors - more details to follow . . .

Thank you for your continued prayers!

This morning at 8:30am we will have our first Doctor's appointment with the new Doc.

We are looking forward to meeting him after all the referrals that pointed his way and most of all we are looking forward to seeing little Bella on the Ultrasound!

I have learned that there is definitely an art to getting a good ultrasound image so we are praying that the sonographer is able to really get a clear picture of all that is going on.

I have my black binder full of questions and we will update everyone as soon as we get back.

Thank you for your prayers.

From What to Expect:

At eight inches and slightly over a pound, your baby is the size and shape of a small doll. (But then, you already knew that you were carrying a living doll, didn't you?) This week marks the beginning of some serious weight gain. Your baby's weight in the next four weeks alone should double (and you may feel as though yours is too).
You have probably heard your baby's heartbeat through a Doppler a number of times already (though you never get tired of hearing it), but by now you can also hear it through a standard stethoscope. What a heart throb!

Your baby's skin is reddish in color now because of the developing blood vessels underneath (remember, the skin is very thin still). It also hangs loosely from his or her little body at this point. That's because the skin grows faster than the fat develops. But don't worry. By the time your baby is born, he or she will be pleasantly plump and filled out - from chubby cheeks to chubby toes.

This is from an e-mail we received yesterday:

Hi there,

I just wanted to share with you how wide spread the prayers and thoughts are for you both and Annabelle.

My niece's daughter walked in the March of Dimes walkathon yesterday and her goal was to raise $170. Well, the little 6 yr old raised $370 and was so excited to walk to help sick babies. I had asked them all to pray for Annabelle a few weeks ago, and donated towards this in her name.

I recieved an update today of how much fun she had and how much she raised and some pictures. I have to tell you that I had no idea that they were going to do this and I cried when I saw it. I hope you enjoy the pictures and feel the love for you all when you see these.

Thank you so much

I mentioned yesterday that the wife was concerned she hadn't felt Annabelle move yet (in fact, she woke me up in the middle of the night Wednesday night to let me know).

A number of people have e-mailed in to say they are praying that Annabelle would move in an unmistakable way.

Today Holly called to say she felt an unmistakable "Hmmm. . . I think I will roll over and give the side of your uterus a good PUNCH!"

Amazing.

Thank you so much to those of you who have been praying with us. It means so much and it is a powerful reminder that prayer really does matter.

Keep hoping, keep wishing, but most of all, keep praying!

We are so lucky to have you on our side . . .

From an e-mail we received yesterday (Kathryn is 7 years old):

Kathryn's bedtime prayer from earlier this week:

"Dear God, please help Matt and Holly. And please put a bubble around that part of Annabelle's back. And I really hope that you and Annabelle don't think it's really weird, but I really love her already even though I haven't seen her face yet. Amen."

The kindness of friends.

Thank you.

From Dad Labs:

One of the nerve-wracking things about the first 1/2 of a pregnancy is that fact that you can't really feel the baby move.

When we had our first ultrasound at 11 weeks, we saw little Annabelle waving her arms around and doing somersaults.

On our next visit, we didn't do a visual ultrasound but we got an audio ultrasound. We could hear her heart and hear her moving around - but Holly still couldn't "feel" it.

On our third ultrasound, Annie seemed to be sleeping but we could see her moving her head and arms from time to time.

On our last ultrasound we could see her flailing her arms around as well. But Holly still can't "feel" the baby move.

Given our situation, the level of anxiety associated with desperately wanting to feel the baby move is probably higher than it is for most people.

Along with that higher level of anxiety comes all sorts of thoughts and worries concerning what is going on in there.

Our next doctor appointment is Tuesday and that seems like a looong way off right now.

Please pray for Holly - that God would calm her head and her heart and give her a measure of reassurance. Praying for a good kick or punch from the wee-one might not be a bad idea either . . .

- That Annabelle's nervous system develops normally

- That there is not any scarring of the spinal cord

- That Annie's doctors perform above and beyond their abilities

- That Holly and I have the wisdom and guidance to make the best decisions

- Reassurance for Holly that not feeling the baby move at this point is not necessarily indicative of any problems

- That Annabelle would give Holly and good kick or punch to let Holly know that things are okay.

By Amy Grant

Thy word is a lamp unto my feet
And a light unto my path.
Thy word is a lamp unto my feet
And a light unto my path.

When I feel afraid,
And think Ive lost my way.
Still, youre there right beside me.
Nothing will I fear
As long as you are near;
Please be near me to the end.

Thy word is a lamp unto my feet
And a light unto my path.
Thy word is a lamp unto my feet
And a light unto my path.

I will not forget
Your love for me and yet,
My heart forever is wandering.
Jesus by my guide,
And hold me to your side,
And I will love you to the end.

Nothing will I fear
As long as you are near;
Please be near me to the end.

Thy word is a lamp unto my feet
And a light unto my path.
Thy word is a lamp unto my feet
And a light unto my path.
And a light unto my path.
Youre the light unto my path.

When the wife and I bought our home a few years ago, we were looking for a house that we could entertain in. We have always admired how our friends (Team Kess) have used their home as a ministry and we wanted to do the same. We were willing to settle for a diamond in the rough if the spaces were right.

We found a house that was built in 1947. It's not big - 1275 sq. ft - but it has 3 bedrooms, one bath, living room, dining room and a walk-thru kitchen. The clincher was the 1 1/2 car garage that had been converted into a family room. But it was most certainly a diamond in the rough (emphasis on ROUGH).

We figured we would fix up the house over a period of a couple of years and then have children.

Well, the best laid plans . . .

After we purchased the house, the wife and I both had a measure of employment turmoil. I ended up working 60 and 70-hour weeks and the wife changed jobs. I eventually changed jobs as well but the 60-70 hour weeks continued. There was simply no time to work on the house.

Add to that the fact that I work in the real estate industry and my income has dropped 50% and now we are out of both time and money to work on the house. Naturally, that's when we got pregnant.

Looking around our house, this is most definitely NOT a place you would want your child to grow up in. And I don't mean "I wish the kitchen counters weren't that color" (although that is true as well). I mean the house is actually a physically dangerous place to raise a child.

The family room has been gutted to the studs with exposed wiring, structural portions of the house have been eaten away by termites, sections of the wood floor were damaged beyond repair and replaced with pieces of regular old lumber screwed into place by the former owners. The front yard is nothing but dirt.

Of course, none of this deterred us when bought the house and were working normal hours and making decent money. But now . . . with Annabelle on the way and things being what they are, we look around the house and despair for answers.

Well leave it to our friends to volunteer a solution.

We are struck dumb by such an outpouring of generosity.

Normally we would probably beg off such a generous offer but the truth is, Holly and I are at a point where . . . . I don't know how to say it . . . . let's just say, we are accepting all offers. We don't have the strength to do otherwise right now.

If you would like to get involved, click on over to Annabelle's Circle. Even if you aren't prompted to get involved but would like to see what true love and friendship looks like - spend some time there.

It's amazing. Its a miracle. Its unbelievable.

Thank you, my friends.

Keep praying.

From an e-mail I received this morning:

A baby asked God, "They tell me you are sending me to earth tomorrow, but how am I going to live there being so small and helpless?"

God said, "Your angel will be waiting for you and will take care of you."

The child further inquired, "But tell me, here in heaven I don't have to do anything but sing and smile to be happy."

God said, "Your angel will sing for you and will also smile for you. And you will feel your angel's love and be very happy."

Again the child asked, "And how am I going to be able to understand when people talk to me if I don't know the language?"

God said, "Your angel will tell you the most beautiful and sweet words you will ever hear, and with much patience and care, your angel will teach you how to speak."

"And what am I going to do when I want to talk to you?"

God said, "Your angel will place your hands together and will teach you how to pray."

"Who will protect me?"

God said, "Your angel will defend you even if it means risking its life."

"But I will always be sad because I will not see you anymore."

God said, "Your angel will always talk to you about Me and will teach you the way to come back to Me, even though I will always be next to you."

At that moment there was much peace in Heaven, but voices from Earth could be heard and the child hurriedly asked, "God, if I am to leave now, please tell me my angel's name."

God said, "You will simply call her, "Mom."

From an e-mail we received yesterday:

"Don't know how you feel about "Saints" (If it's weird, just disregard it-we Catholics have Patron Saints for almost anything), but this is a prayer I like. (St. Anne, the grandmother of Jesus & patron saint of expectant mothers.)

"PRAYER FOR EXPECTANT MOTHERS
O Good Saint Anne, who had the incomparable privilege of bringing into the world Her who was to become the Mother of God, I come to place myself under your special care. I confide myself to you, together with the child I am carrying.
Thousands of children owe you, Glorious Mother of Mary, the life of the body and grace of baptism. Hence I wish, in my turn, to place my whole confidence in you. Make me keep in mind the precautions I need to take so as not to endanger in any way the health, good qualities or the eternal salvation of the child whose very existence God has placed in my care.

"Obtain for me the virtues you did teach Her who was to be the Mother of God, so that I may afterwards instill and develop them in the heart of my child.
O Good Saint Anne, protect me today and forever. I know that you will not refuse your intercession to a mother who invokes you with confidence.
Amen."

Good one.

By Horatio G. Spafford, 1873
Arrangement by Audio Adrenaline

When peace like a river attendeth my way
When sorrows like sea billows roll
Whatever my lot Thou hast taught me to say
It is well, it is well with my soul

It is well (it is well)
With my soul (with my soul)
It is well, it is well with my soul

My sin O the joy of this glorious thought
My sin not in part but the whole
Is nailed to the cross and
I bear it no more paraise the Lord, praise the Lord,
O my soul

And Lord haste the day
When my faith shall be sight
The clouds be rolled back as a scroll
The trump shall resound and
The Lord shall descend
Even so it is well with my soul

From DadLabs (Tips from Dads on Parenting):

A number of churches have something called a "prayer quilt" ministry.

Ladies in the church make quilts with a bunch of loose threads attached and then when someone in the church is in need of prayer a quilt is placed down front and those who wish to can pray and then tie a knot in one of the loose strings symbolizing their prayer.

Much like the taking meals to people going through a difficult time, I always thought this was sort of odd. "The guy was in a car wreck - he needs disability insurance - not a blanket", was again my approximate response.

Once again, boy was I wrong.

A friend asked me if Holly and I would like a prayer quilt for Annabelle and of course I said, "Yes". My first inkling that there was more to this than I knew was when I received the following e-mail from our friend:

"I also have a question about the quilt. I picked one out for Holly yesterday. My friend from bible study showed them to me and encouraged me to pray before selecting one. She was confident that God had already chosen a quilt for Holly and Annabelle, and if I asked him…he would lead me to the right one. Cheryl and I both prayed in the little storage hallway for you, Holly and Annabelle. There must have been close to 100 quilts folded on shelves in two large cabinets. She told me to pick our four and she would unfold them for me to get a better look. I picked four and the first one she unfolded was THE ONE. No doubt about it!!! I can’t wait for you guys to see it.

"The women in the prayer quilt ministry prayed for your family’s needs on Wednesday. Your prayer request will also be shared with the entire congregation at Pt Loma Pres on Sunday. Then the congregation will have an opportunity to pray for you guys and tie knots on the quilt in between services. You are invited to attend Sunday services and be present for the prayer and knot tying. . . ."

We got to church yesterday morning just after the first service had let out and the wife and I walked into a mostly empty sanctuary.

Down in front were about six different quilts and each one had a plexi-glass frame telling the story of each family in need. Here is our "announcement":

The wife and I sat down three pews from the front and watched in amazement as people of all ages would come by. read our story and then tie a knot while praying. There were Jr. Highers on up through ancient saints of the church who had to momentarily let go of their walkers to fumble with the knots.

Keep in mind that these are total strangers - we do not attend this church and they have no idea who we are - they just know a little bit about our story and they know that we need prayer.

Miracles.

One of the highlights was when a lady who appeared to be in her sixties bent over our quilt and read our story through her bifocals. Standing there at the front of the church, shaking her head, she swore under her breath "Dammit" and then proceeded to pray and tie a knot in our quilt.

Yes, "Damn It" indeed.

It was a wonderful service and afterwards the wife and I stayed and watched more people tie more knots. It was truly amazing.

Finding newcomers in an all but empty sanctuary after the service, the pastor introduced himself and chatted with us about our situation. When the people around us discovered that the quilt was ours, they all gathered around and prayed for us.

Strangers to us in any other setting - here we were brothers and sisters in Christ, the family of God, fellow travellers in need of aid.

Our friend has requested that we "loan" our quilt to her so that her bible study can pray and tie more knots as well.

The quilt now sits in Annabelle's room awaiting her arrival. Just like meals provided by a friend, the prayer quilt is a tangible reminder that people are praying and it feels so good to wrap the prayer quilt around you and know that you are being covered in prayer.

Since I seem to be praying dozens of times a day right know, I suppose I could knot up every last loose end all on my own but I want to leave some for others. I am going to limit myself to one good knot every morning.

A good, solid square knot that will never come loose.

I can't wait to wrap Annie in it and then one day, when she is able to understand, tell her the story of the hundreds of knots in the strings . . .

Meals Matter. Prayers Matter. Prayer Quilts Matter.

Thank you for continuing to pray.

UPDATE:

Annabelle's nursery still has the guest bed in it and the quilt is draped over that. I find myself kneeling by the bed in the mornings and laying my whole upper body on the quilt as I pray - in a weird sort of way, it makes me feel sort of close to Bella.

Maybe I will allow myself two knots a day - one in the morning and one in the evening . . .

by Coldplay

When you try your best, but you don't succeed
When you get what you want, but not what you need
When you feel so tired, but you can't sleep
Stuck in reverse

And the tears come streaming down your face
When you lose something you can't replace
When you love someone, but it goes to waste
Could it be worse?

Lights will guide you home
And ignite your bones
And I will try to fix you

And high up above or down below
When you're too in love to let it go
But if you never try you'll never know
Just what you're worth

Lights will guide you home
And ignite your bones
And I will try to fix you

Tears stream down your face
When you lose something you cannot replace
Tears stream down your face
And I...

Tears stream down on your face
I promise you I will learn from my mistakes
Tears stream down your face
And I...

Lights will guide you home
And ignite your bones
And I will try to fix you

I received this e-mail at 4:55 this morning . . .

"Good morning, my dear friend.

"Just wanted to shoot you a note of love and encouragement this Monday morning. Even now, at this ungodly hour, you are not alone. Someone is praying for you and loves you very, very much.

"I pray that your week is a much more peaceful one"

Thank you for all your prayers.

The wife and I cancelled our next appointment with "Dr. Doom" and made a new appointment with Dr. Cousins whom we have been referred to by just about everyone in the know.

Our next appointment is April 29th and we are scheduled for another ultrasound.

April 29th seems like a long way off but at the same time, there isn't really much to be done except to watch, wait and pray.

As I understand it (for lack of better terms) Dr. Cousins serves as the General contractor while the Geneticist, Orthopedic Dr. and Neuro Surgeons all serve as sub-contractors.

We already have all our "subs" picked out so the plan is to consult with Dr. Cousins on April 29th on our next move.

by Jeremy Camp

Scattered words and empty thoughts
Seem to pour from my heart
I've never felt so torn before
Seems I don't know where to start
But its now that I feel your grace fall like rain
From every fingertip washing away my pain

I still believe in your faithfulness
I still believe in your truth
I still believe in your holy word
Even when I don't see, I still believe

Though the questions still fog up my mind
With promises I still seem to bear
Even when answers slowly unwind
It's my heart I see you prepare
But its now, that I feel, your grace fall like rain
From every fingertip washing away my pain

I still believe in your faithfulness
I still believe in your truth
I still believe in your holy word
Even when I don't see, I still believe

Well the only place I can go is into your arms
Where I throw to you my feeble prayers well in brokenness
I can see that this was your will for me
Help me to know that you are near

I still believe in your faithfulness
I still believe in your truth
I still believe in your holy word
Even when I don't see, I still believe

I still believe

Ohhh, I still believe, I still believe

Now this is a good post.

Duet by Tony Bennett and KD Lang

Keep the faith, Baby
That's what the man said
Keep the faith Baby

I ain't down
Ain't down
I ain't down
Not me Not yet,

I ain't down
Ain't down
I ain't down
Not yet you bet

Keep the faith, Baby
Keep the faith
Don't forget

I'm still up(Good)
I'm still up
I'm still up and life's OK
I'm still up
I'm still up
I mean to stay that way
So Keep the faith, keep the faith Baby
Thats what I say

I'll go on
I'll go on
I'll go on and do my best

I'll go on
I'll go on
I'll go on and never rest
I'm still laughin'
I'm still laughin'
I mean to stay that way
So keep the faith
Keep the faith, Baby
That's what I say

I'll go on
I'll go on
I'll go on
Go on
I'll go on
And do my best

I'll go on
I'll go on
I'll go on and never rest

Keep the faith
Keep the faith (I will)
Keep the faith, Baby
Oh yeah

Yes, yes, oh yes
Keep the faith
Keep the faith, Tony
Keep the faith
Oh yes

Good KD
That's what the man said
Keep the faith, KD

Thank you Deron!

"Then Jesus went with his disciples to a place called Gethsemane, and he said to them, "Sit here while I go over there and pray." He took Peter and the two sons of Zebedee along with him, and he began to be sorrowful and troubled. Then he said to them, "My soul is overwhelmed with sorrow to the point of death. Stay here and keep watch with me."

"Going a little farther, he fell with his face to the ground and prayed, "My Father, if it is possible, may this cup be taken from me. Yet not as I will, but as you will."

- Matthew 26:36-39

If you believe the Bible story (and I do) - you have to wonder, why is Jesus, the son of God, "Overwhelmed with sorrow to the point of death"?

Yes, it is Thursday and he knows the pain of Good Friday is coming. But he also knows that the Easter miracle is just around the corner. He knows that victory is at hand and he knows he has what it takes to get there.

So why all the sorrow?

In my thinking about my own personal "Black Tuesday" the thought occurred to me - it's the pain. Not just the physical pain he was facing but the mental and emotional pain. The pain of the hatred he would see in people's eyes, the pain of lies and betrayals that would mark the next 24 or so hours.

Maybe his heart was breaking not because he was fearful of the ultimate outcome but because of the pain of the situation, the pain of the process.

No compassionate person goes to war with a smile - even if they know they are going to be victorious.

So maybe that is it. I am hopeful and optimistic and prayerful about Annie's situation. But that doesn't mean there isn't pain too.

A weeping person is not necessarily a defeated person. They may be weeping because they are preparing for battle.

Keep us in your prayers.

I have hesitated posting about this. I want to share with friends and family openly and honestly but I also don't want the blog to turn into a daily emotional car wreck either.

After thinking it through a little I figured I have made some small sense of it and I figure friends and family would want to know anyhow so here goes . . .

As I mentioned before, I found it hard to be alone while the wife was in New York this past week.

Thursday to Saturday was fine but by Sunday I really had probably been away from the wife and child too long and I was having a pretty rough time. Sure, I could have surrounded myself with friends but it was my pregnant wife I wanted to see.

Monday morning, a friend called me at the office to say he would be in the area and did I want to meet up at my house for lunch?

I said "Sure" and made a mental note to get home early enough to pick up the place.

He got there first. He knows where the hide-a-key is.

I walked in and he was standing in the kitchen - surrounded by 5 days of dirty dishes, pizza boxes, trash and one or two too many empty beer bottles left haphazardly on any flat surface that would hold them.

I grimaced, "This looks bad . . . huh?"

"Yeah", he said painfully, "It looks pretty bad".

And it was.

Tuesday it all came to a head. I was looking forward to the wife coming home that evening and I knew I had to clean up the place before she got home. But when I got up I just felt bad.

As I walked to the car, I could feel it in the pit of my stomach. As I pulled onto the street the tears started to come. By the time I hit the highway I was really coming apart. Sobbing with my right hand on the wheel, my head in my left hand.

All I could do was stare at the left-hand line of my lane and focus on keeping just to the right of it.

By the time I got to my off ramp, I realized I had been going 40 mph on the highway (at least I was in the right-hand lane).

I pulled into the parking lot of my office and sat with my head in my hands weeping.

I got myself together and went into the office but I was not right. My heart was racing, my vision was blurry, my hands were shaking and I had a hard time operating the mouse on the computer.

At one point I found myself gripping the edges of the keyboard.

"Type", I told myself.

"I can't".

"Why?"

"I can't let go of the keyboard and the keys are too heavy anyway"

???

This had to be some sort of panic attack or something.

I turned to my assistant and said, "I don't feel well. My heart is racing and my hands are shaking." I said holding up one trembling hand.

"Dude, you drink too much coffee", she replied.

Which is true - but I had only had Decaf that morning.

By the afternoon I was nauseous.

I made it through the day, got the house cleaned up and have never been more happy to have my wife return home.

We slept with our arms around each other all night.

So there is that - two melt-downs in two weeks. I will leave theories on the hows and whys for another post.

From an e-mail we received:

When I was pregnant I used to visualize a protective bubble around the opening in Luke's spine, keeping those vulnerable nerves as safe as possible. When he was born, there was indeed a protective sac around that opening. The whole area was surrounded by a birthmark, which I like to think of as kisses from the angels, doing their best to heal him. It's still there, and reminds me every day of what a miracle he is. I'm thinking those same thoughts for Annabelle.

Judson W. Van DeVenter - 1896
Arrangement by The Newsboys

I surrender all
To the promises you made
And I will give it all
To the maker of the day

No one knows your heart
And no one knows your fears
When no one solves the mysteries
Or even wipes away the tears

I surrender all
To the promises you made
And I will give it all
To the maker of the day

Can you hear the sound of laughter
From the other side of life?
There are days when I feel like a stranger sometimes
Tell me, are there any other fools like me?

I surrender all
To the promises you made
And I will give it all
To the maker of the day

This reliance on another world
Has a great effect on this world
This conscience of another world
Has a great effect on
Grace recollection

He doesn't love us 'cause of who we are
He only loves us 'cause of who he is
He doesn't love us 'cause of who we are
He only loves us 'cause of who he is

I surrender all
(he doesn't love us 'cause of who we are)
To the promises you made
(he only loves 'cause of who he is)
And I will give it all
(he doesn't love us 'cause of who we are)
To the maker of the day

by Enya

My life goes on in endless song
Above earth's lamentations,
I hear the real, though far-off hymn
That hails a new creation.

Through all the tumult and the strife
I hear it's music ringing,
It sounds an echo in my soul.
How can I keep from singing?

While though the tempest loudly roars,
I hear the truth, it liveth.
And though the darkness 'round me close,
Songs in the night it giveth.

No storm can shake my inmost calm,
While to that rock I'm clinging.
Since love is lord of heaven and earth
How can I keep from singing?

When tyrants tremble in their fear
And hear their death knell ringing,
When friends rejoice both far and near
How can I keep from singing?

In prison cell and dungeon vile
Our thoughts to them are winging,
When friends by shame are undefiled
How can I keep from singing?

My wife has been out of town for five days (she returns today).

Things are not going well.

Having my wife and daughter near helps me. Not just for the love and companionship but because it is easier for me to pray. Every time one of us shifts or moves in bed - the dozen or so times that I wake up in the night - I throw an arm around them and pray.

Having the wife around also gives me someone to be strong for. Without her around . . . well . . . I am not doing so well.

Yesterday a dear friend called and we were talking about other problems and I made a ham-handed remark.

I was trying to explain how I felt about a situation and I was trying to accurately sum up life from my perspective at that moment.

I said something to the effect, "You want to know how I feel? Imagine if I came over to your house and took your daughters legs away . . ."

Oh God what a terrible thing to say.

I am so so sorry my dear friend. I should have never said that and I am so so sorry.

Life is good - life is sweet - but there are times when it feels like we are all walking barefoot down a broken glass highway and in an effort to steady ourselves, we hurt those nearest to us.

I am so grateful for my friends and family.

I am not doing well - but my girls are coming home today . . .

This is the hard one.

I cannot tell you how much this blog has helped me. We have so many dear friends and friends of friends and prayer groups that are pulling for Annabelle that the blog is really the only way to keep everyone in the know.

Knowing that there are people who want news and updates causes me to think a little more about what we are going through and how we are feeling etc.

A week or so ago I stopped to consider that miracles were already happening.

I also could not avoid thinking about the "what ifs" and what miracles in that situation would look like.

Today is for hopes and dreams. Today's post is the one that made me well up with tears over beers with a friend this past weekend just thinking about it.

Today we beg for mercy. Today is hard one.

I believe that one of God's favorites tricks is to take the bad stuff and use it for good. We have acknowledged that God is already using this situation for good in the lives of so many. We have even acknowledged that God can use disabilities for miracles in the world as well.

But that is not the heart of a father.

I want to see my daughter crawl.

I want to see her standing in her crib in the morning calling for the family dawg.

I want to sit in wonder as she takes her first tentative steps.

I want to see her run out the front door squealing "Daddee!" when I come home from work.

I want to see her trudge off to her first day of school with new shoes and an over sized backpack.

I want to she her run and play with friends.

I want to come home some afternoon to find the music blaring and my wife and gawky braced-faced daughter dancing like dervishes, eating peanut butter out of the jar with their fingers and laughing.

I want my daughter to experience the thrill of getting her driver's license.

I want to see Annie walk down the red carpet to accept her diploma.

I want to walk her down the aisle and hand her off the man her heart longs for.

I covet a miracle for my daughter.

Please keep praying.

by Natalie Merchant

Doctors have come from distant cities
Just to see me
Stand over my bed
Disbelieving what they're seeing

They say I must be one of the wonders
Of god's own creation
And as far as they can see they can offer
No explanation

Newspapers ask intimate questions
Want confessions
They reach into my head
To steal the glory of my story

They say I must be one of the wonders
Of god's own creation
And as far as they can see they can offer
No explanation

O, I believe
Fate smiled and destiny
Laughed as she came to my cradle
Know this child will be able
Laughed as my body she lifted
Know this child will be gifted
With love, with patience and with faith
She'll make her way

People see me
I'm a challenge to your balance
I'm over your heads
How I confound you and astound you
To know I must be one of the wonders
Of god's own creation
And as far as you can see you can offer me
No explanation

O, I believe
Fate smiled and destiny
Laughed as she came to my cradle
Know this child will be able
Laughed as she came to my mother
Know this child will not suffer
Laughed as my body she lifted
Know this child will be gifted
With love, with patience and with faith
She'll make her way

From What to Expect:

At about seven inches in length and almost 11 ounces in weight, your baby is about the size of a large banana.

By now, your baby swallows at least several ounces of amniotic fluid each day - not only for hydration and nutrition, but also to practice swallowing and digesting - skills your baby will need as soon as he or she arrives in your arms. And keep this in mind: The taste of the amniotic fluid differs from day to day depending on what you've eaten (spicy enchilada one day, sweet carrots another). And that smorgasbord of tastes won't be lost on your baby. That's because your little one has very developed taste buds already. In fact, researchers have noted that babies who were exposed to certain tastes in utero via the amniotic fluid were more eager to eat foods with that same taste after birth. Want your baby to eat his or her broccoli later? Eat yours now!

Your baby still has a great deal of room in your womb - though like anyone who lives in one space for a long time, this tenant will soon begin to feel cramped. Until those uterine walls start closing in, however, there's plenty of space for twisting, turning, and even an occasional somersault (so that's what you were feeling last night!).

With all that belly dancing going on, it's hard to believe your baby gets any sleep at all. But believe it or not, your fetus sleeps as much as a newborn, perhaps 12 to 14 hours per day! (Now if only you could get some sleep!)

"I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world."

It could be worse.

We are all familiar with the ancient sea-faring maps that charted the known world. In the margins, where knowledge ended fear began they would write "Thar be dragons".

Well, this whole situation has pushed the wife and I off the map. And there are most definitely dragons. Big ones. The kind that come after your only child . . .

But it could be worse.

Saturday, a buddy and I drove up to a small mountain town called Idllywild. We had a great lunch at an outside table with the dawg nearby. Halfway through our lunch, a band set up right next to our table essentially making us the front row. Everyone at the restaurant had to look past us to see the band.

As my friend and I talked over a couple of beers the tears just started flowing. It has been two weeks and my heart is still breaking.

I wonder what the other people at the restaurant thought of a grown man at a table with his friend crying over beers . . . It would be embarrassing except for the fact that I love Annie so much.

But it could be worse.

My buddy told me that he had been scouring the Internet for information on Bella's condition and found himself on a bunch of pro-life websites. Turns out that Spina Bifida is something of a rallying point.

Most children born with spina bifida are perfectly normal kids. They are smart, funny, go through life as anybody else would - only they do it sitting down.

Most of them are aborted.

It could be worse.

So many children and so many families have it worse than us - seriously debilitating conditions - lack of food, medicine, clean water . . .

We live in AMERICA. We have access to clean water. We have the best medicine in the world. We have a home and a couple of cars and a kitchen full of healthy food.

It could be worse. And that is good perspective.

But perspective is not the same as love.

Perspective rejoices that things are not as bad as they could be - love aches that things are not as good as they can be.

Perspective takes comfort that some have it worse. Love crys for all.

You will understand if I do not take comfort in the fact that somewhere in the world a daughter, a mother and a father are suffering more than us.

That may be perspective but is most certainly not love.

I want the best for Annie. I don't want her life to be "relatively" good. I want her life to be absolutely, unequivocally beautiful.

Yes, it could be worse.

But what kind of father would I be if that was good enough?

Last week, I wrote about Miracles to Claim.

I have been thinking a lot about this post - miracles to consider - and it is not an easy one to write. But I feel like it is something that needs to be said so here goes . . .

Let's just stop and consider what life would be like for Annabelle if she is in a wheelchair for life . . .

No. I am not losing hope.

No. I am not losing faith.

Yes. I am praying for and believing in a miracle.

No. I do not believe that discussing this somehow "jinxes" me or unwinds the countless hours of prayer that we are all praying. I do not believe that the God of the universe can be reduced to a superstitious magic trick.

I am saying there is an elephant in the room so let's take a good hard look so we can all move past it.

As I have said more than once, God's miracles take all forms - so let's consider another type of miracle. . .

Regardless of whether she walks or not, I want our daughter to be a light in this world. I want her to be the cute, down-to-earth girl who is a friend to everyone. The girl her friends turn to when life sets them back.

I want my friends' children to be better people for having known and played with and grown up with Annie.

Being in a wheelchair would mean a life lived on stage.

There are many people who pass us by everyday whom we never notice. But a beautiful girl in a wheelchair with a bright smile and heart filled with hope? Now that is a person you would remember.

Picture your typical children's Christmas program. Picture a cute little girl standing at the microphone singing silent night. Cute right?

Now picture that cute little girl singing silent night from a wheelchair. Well. That would be something.

To be in a wheelchair is to have a different set of opportunities and responsibilities.

I want my daughter to be a miracle.

To be someone who inspires and uplifts.

The girl who gets elected Student Body President on a write-in campaign because she is too humble to actually run for office.

The girl whom they beg to be a cheerleader but who turns them down because she is already too busy with music lessons and school and family and anyway, she doesn't feel like wheeling around on a football field at night.

The girl who is asked to prom by three boys - two of whom get their hearts broken.

I want my daughter to be the young woman who pursues the job of her dreams and when people tell her that she has been an inspiration to them, she cocks her head and wonders what the big deal is.

I want my daughter to be the type of person who makes the world a better place - an inspiration - a miracle.

And I want those miracles regardless of whether she is standing up or sitting down . . .

by Phil Keaggy

She's a dancer, she loves to dance,
She's a singer, she loves to sing,
She's a lady, walking 'round in Mama's shoes.

She's amazing, she loves to amaze,
She is waiting, she don't care to wait
In a hurry, walking 'round in Mama's shoes,
Standing tall in Mama's shoes.

Growing up to discover
The things in life that ring true,
You share the name of your grandmother,
And she'll be proud to see
All the things you can do.
As you reach for the sky, love,
And pirouette 'cross the room,
Just remember that you are my love,
And no other can replace the face of you.

She's my baby, and she'll always be
With every heartbeat, such a part of me,
And she's a lady,
Walking 'round in Mama's shoes,
Standing tall in Mama's shoes.

Growing up to discover
The things in life that ring true,
You share the name of your grandmother,
And she'll be proud to see
All the things you can do.
As you reach for the sky, love,
And pirouette 'cross the room,
Just remember that you are my love,
And no other can replace the face of you.

Great is your Lord, and great is your reward,
As you grow up to face the world,
You are blessed, be a blessing my little girl.
Walking round in Mama's shoes,
Standing tall in Mama's shoes.

A friend sent ths one to me:

From: All For the Love of You

That night Sara called me. In the course of our conversation, she asked if I knew about Annabelle. I said yes and she told me she’s been reading Matt’s blog (http://thedawgrun.blogspot.com/). I asked her to send me the url.

Today I read all the posts about Annabelle, starting just before the diagnosis. The tone of the post in which Matt mentions a “a slight elevation in some chemical or other that has to do with neural-tube disorders” reminded me of my nonchalance before June’s heart appointment. Like me, he was pretty sure there was nothing to worry about. Unlike me, he was wrong.

Sometimes it seems like parents live under continuous sniper fire. Mostly we dodge the bullets, so often that we become desensitized to them and fail to worry about every possible thing, but sometimes the bullet hits.

It’s not fair.

All we can do is brace for the shock, and if it comes, take what comfort we can from our team, those who are pulling for us. Holly and Matt have received tremendous support on and off the blog and they seem up to the tremendous challenge they are facing. I haven’t seen Holly since my sister’s wedding ten years ago and I’ve only met Matt once, so anything I say or do is just a small part of that support, but for what it’s worth, I’m pulling for Annabelle, too.

- Thank you, Steph - your prayers are appreciated

This week's reading plan:

Monday, April 14, 2008 --- Psalm 7 - Psalm 27 - Psalm 31 - Psalm 34 - Psalm 52
Tuesday, April 15, 2008 --- Psalm 56 - Psalm 120 - Psalm 140-142
Wednesday, April 16, 2008 --- 1 Samuel 25-27
Thursday, April 17, 2008 --- Psalm 17 - Psalm 35 - Psalm 54 - Psalm 63
Friday, April 18, 2008 --- Psalm 18 - 1 Samuel 28-31
Saturday, April 19, 2008 --- Psalm 121 - Psalm 123-125 - Psalm 128-130
Sunday, April 20, 2008 --- 2 Samuel 1-4

My job requires my to be on the phone most of the day. When I am not on the phone, I am returning the approximately 100 work e-mails I get each day. When I am not doing either of those things, I am conferring with my assistant who I share an office with. I am SURROUNDED BY PEOPLE.

My commute is only 10 minutes and the evenings are spent with the wife. I am rarely ever alone.

As hard as it is, getting up at 4am everyday seems to help. I sit in the quiet and read or write, pay bills etc.

The wife is currently in Manhattan for five days at a work convention and I have the weekend to myself.

Although the house is a filthy wreck, I decided to give myself a mini vacation. Thursday night I ordered a pizza and watched back episodes of Lost.

Friday morning I got up and did nothing but drink coffee and watch the news before work.

Last night I came home and cooked one the frozen meals that a friend had delivered and watched movies.

Today is road trip day. The dawg and I are going to take a two-hour drive to Idyllwild - a little mountain town Northeast of San Diego.

The wife wants to go on a "babymoon" before Bella arrives and I thought this might be a good (read: inexpensive) option - but I need to check it out first. And I need to get out of town and clear my head.

My plan was to spend the weekend in quiet and easy isolation. All social invitations were to summarily rejected.

And then a friend called.

We are blessed with so many caring friends and Annie's situation is breaking more hearts than just the wife's and mine. It occurred to me as I was on the phone that as much as I want some alone time this weekend, I might actually need some social time as well.

Not only that, but some of our friends need to talk about this for their own healing. They need us to be available to them as much as we need them to be available to us.

So a buddy of mine is going to join the dawg and I on the road trip today.

Tomorrow, I am meeting up with friends at a dawg beach to cook weeners and watch the Sea World Fireworks.

I feel like these trying times in life cause us to build walls around ourselves for protection the question is, are you going to be the only person inside your protective ramparts?

If ramparts need to be built, so be it - but I want my friends on the inside (plus they can pull their weight and help with the building).

Many churches have them and they go by different names: "Meals on Wheels", "The Chicken Soup Brigade", "The Hot-dish Militia" (okay, I made that last one up).

They are the ladies of the church (usually older) who rush to the rescue when someone is going through a difficult time. The phone call goes out, and the hot-dishes begin to arrive . . .

I have always thought this is strange.

"He just found out he has cancer. He hasn't misplaced his refrigerator" was my approximate reaction.

I just figured that the ladies were loving and kind and they loved people the way they knew how - by feeding them.

Boy, was I wrong.

The day we were first alerted to the concerns about Annabelle, we went home shell-shocked. "Do you just want to order a pizza?" my wife asked.

"No. I want to make grilled cedar-plank salmon."

"How are you going to cook at a time like this?"

"I need to stay busy right now" was my reply.

I actually really enjoy cooking. Especially when the kitchen is clean, the setting sun can be seen through the kitchen window, good music is on the stereo and I have a nice glass of wine at the ready.

That night two weeks ago was the last time I have felt like cooking.

Friends of ours went out to our favorite restaurant that evening and left the food on our doorstep and although we didn't eat it that night, it fed us for a couple of days.

On my next grocery trip, I bought all heat-and-eat stuff. Lasagne etc. I am just not into cooking right now.

Later that week a friend went to the best BBQ place in town and brought over food.

A couple of days ago, I came home to a box on my doorstep. Friends who don't live in San Diego had gone to Home Bistro.com and had meals delivered. Everything comes frozen in plastic bags, you boil water, dump the bags in and in 10 minutes your food is ready.

What a blessing. Meals matter.

I can't really explain it very well. My wife and I have always joked that the best tasting sandwich in the world is the one that someone else makes for you. It is even more so when you are going through a difficult time and someone drops off a meal.

When someone drops off a meal you get this overwhelming sense that someone really cares. Its such a tangible thing and it brings a measure of comfort when you eat it. That is all to say nothing of the fact that you don't have the hassle of cooking.

This, of course, is not a plea for people to send the wife and I food.

I just wanted to let people know who may not understand the importance of providing a meal to others.

The next time life takes a swing at someone you know and knocks them to the ground, drop off some food.

They will appreciate it more than you know.

Meals Matter.

By Kirk Franklin

You don't have to worry
And don't you be afraid
Joy comes in the morning
Troubles they don't last always
For there's a friend in Jesus
Who will wipe your tears away
And if your heart is broken
Just lift your hands and say

Oh
I know that I can make it
I know that I can stand
No matter what may come my way
My life is in your hands

With Jesus I can take it
With Him I know I can stand
No matter what may come my way
My life is in your hands

So when your tests and trials
They seem to get you down
And all your friends and loved ones
Are nowhere to be found
Remember there's a friend in Jesus
Who will wipe your tears away
And if you heart is broken
Just lift your hands and say

Oh
I know that I can make it
I know that I can stand
No matter what may come my way
My life is in your hands

With Jesus I can take it
With Him I know I can stand
No matter what may come my way
My life is in your hands

Yesterday morning I was mad. Really mad.

I wanted to take someone apart - not physically but verbally. I just wanted to verbally dismantle someone - someone who had done something bad. No one in particular.

I just wanted to find someone who had done something bad and really let them have it - zero in on their vulnerability and squeeze the rhetorical trigger. Nail them in such a way that the words ring in their ears for the rest of their life forcing them to forever question their own morality and self-worth.

I wanted to be the great deliverer of justice.

And I felt ashamed that I longed to be so cruel.

When I used to run church youth camps there would oftentimes be an altar-call.

The speaker would deliver an inspirational message - God would move in the hearts of the campers and the teens would come down to the altar in front to kneel, pray, get "right" with God, make decisions and commitments etc. Often all of this was accompanied by tears. Sometimes LOTS of tears.

Seeing their campers seemingly so "distraught", counselors would rush forward to console and pray with their teens.

I used to try and prepare camp counselors for these occurrences. My theory, such as it was, was that with all the physical, hormonal, social, mental and emotional changes that teens go through, they pretty much want to cry everyday.

The trouble is, they never really get the opportunity.

Then you take them to a mountain camp for a week with friends where they share and they feel safe and are willing to be a little more vulnerable. When an inspirational speaker gets up and God moves in the heart of a teen, the camper may well be moved to tears. Once they get started though, some kids just decide to "let it all hang out".

"They aren't necessarily crying because they are distraught", I would tell my counselors, "They might just be crying because they are teenagers".

"So why are you so angry this morning?", I asked myself. "And what's with all this 'deliverer of justice' stuff?"

And then it occurred to me: I think I am really angry about this situation with Annabelle and I want someone to pay.

Having done some counseling, I am familiar with the various stages of grief: denial, anger, despair etc. and it seems like I have been cycling through them in no particular order every few minutes or so. But anger was a new one.

And I am most definitely angry . . .

Just like a teenager at youth camp, I am looking for a reason and opportunity to express it.

Maybe I should go for a run . . .

Brick walls are there for a reason. They are not there to keep us out. The brick walls are there to give us a chance to show how badly we want something. The brick walls are there to stop people who don't want it badly enough.

– Randy Pausch

by Aaron Schroeder

The real world isn’t real enough for you
The tall trees are not tall enough for you
Heartstrings are not tight enough
And love songs, they ain’t love enough
The real world isn’t real enough for you

Sunshine isn’t bright enough for you
Bright eyes just aren’t light enough for you
The desert isn’t sand enough
And the ocean isn’t land enough
Well, the real world isn’t real enough for you

And the sun goes down
On the world that spins around
Casting shadows on this town
But try not to be sad
‘Cause baby what we got, it ain’t that bad

Freight trains don’t move fast enough for you
Seasons they don’t last enough for you
Bed sheets are not soft enough
An’ nowhere isn’t lost enough
The real world isn’t real enough for you

And the sun goes down
Like the soil, like the ground
You are lost when you are found
Like a melody unwound
Baby what we got, it ain’t that...

And the sun goes down
On the world that we found
And the clocks are all wound
For a lifetime that we have
Baby what we got, it ain’t that bad
Said baby what we got, it ain’t that bad
Baby what we got, it ain’t that bad

As he went along, he saw a man blind from birth. His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?"

"Neither this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life. . .

Having said this, he spit on the ground, made some mud with the saliva, and put it on the man's eyes. "Go," he told him, "wash in the Pool of Siloam" (this word means Sent). So the man went and washed, and came home seeing.

John 9:1-3, 6-7

Design for Mankind was kind enough to spotlight my wife's artwork.

Thank you so much!

"When life bucks you completely off.. at least try to stick the landing."

By Paul Simon

If you leap awake
In the mirror of a bad dream
And for a fraction of a second
You can't remember where you are
Just open your window
And follow your memory upstream
To the meadow in the mountain
Where we counted every falling star

I believe the light that shines on you
Will shine on you forever
And though I can't guarantee
There's nothing scary hiding under your bed
I'm gonna stand guard like a postcard
Of a Golden Retriever
And never leave till I leave you
With a sweet dream in your head

I'm gonna watch you shine
Gonna watch you grow
Gonna paint a sign
So you'll always know
As long as one and one is two whooo hooo
There could never be a father who loved
His daughter more than I love you

Trust your intuition
It's just like goin fishin'
You cast your line and hope you get a bite
You don't need to waste your time
Worryin' about the market place
Trying to help the human race
Strugglin to survive its harshest hour

I'm gonna watch you shine
Gonna watch you grow
Gonna paint a sign
So you'll always know
As long as one and one is two whooo hooo
There could never be a father who loved
His daughter more than I love you

I'm gonna watch you shine
Gonna watch you grow
Gonna paint a sign
So you'll always know
As long as one and one is two whooo hooo
There could never be a father who loved
His daughter more than I love you

I mentioned in an earlier post that I had gone to Staples to get a three-ring binder in a pathetic attempt to DO SOMETHING.

In my defence, there is a lot of info to keep track of and this is all new and confusing to me.

That being said, ask just about anyone who knows me and they will tell you that I can't get dressed in the morning without creating an Excel spreadsheet about it.

I walked the aisles of Staples telling myself, "What are you doing? You are just doing this because you feel helpless and this is a pathetic attempt to stay busy. What are going to do with this "folder"? Carry it around with you? Take it to Doctor's appointments and thoughtfully stroke your chin as you take notes? You don't think you are actually going to whip out your little binder and contradict the doctor are you?"

I pictured the doctor rolling his eyes as I consult my magical binder . . .

Well.

A friend who deals with children with disabilities e-mailed me a link to THIS.

Her website is here.

It is a ready-made health binder for parents with special needs children.

I'm not pathetic! I'm brilliant!

I haven't gone through all the forms yet but I plan on printing them and using the ones that apply in Annabelle's binder.

Only now I have to go back and get a bigger binder . . . .

The Winston Churchill quote from the other day ("When you find yourself going through hell, keep going.") prompted my brother to send a link to this video yesterday.

Country isn't really my thing but I appreciate the sentiment.

By Horatio G. Spafford, 1873

When peace, like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou has taught me to say,
It is well, it is well, with my soul.

It is well, with my soul,
It is well, with my soul,
It is well, it is well, with my soul.

One of the reasons I love marathon running is because I believe that it is an activity that is analogous to life. In a marathon there can be tough inclines and rough terrain and times when you don't think you'll be able to go any further. However, with some determination and a little help from the aid stations along the way, you can cross that finish line and realize your goal.

The same can be said for life, which has both its extraordinary peaks and intense valleys. Regardless of one's situations, I believe that with some inner strength, courage and encouragement from those whom you love, I believe people can achieve anything.

- A.J.

(Click to enlarge)

Yesterday, one of the VP's from Children's hospital called the wife to give us referrals to Geneticists and Orthopedic Docs. - Thanks Heather!

The neurosurgeon in LA called as well and spent a good amount of time on the phone with me explaining the situation and answering my questions - Thanks Solmaz!

I also put together my Annabelle binder with different sections for Diagnosis, Genetics, Neurology, OB/ GYN, Orthopedics, Perinatology, Insurance, Resources and last but not least, Bills (we received our first bill yesterday).

When I opened the envelope and discovered that we had received our first bill it felt like seeing the very first snowflake of the storm of the century.

So based on my discussion with the neurosurgeon and all the reading I have been doing, here is the situation as I understand it in simple terms:

Your brain and your spinal cord are encased in a thin layer of insulation - like the plastic around an electrical wire. Outside that insulation, they float in spinal fluid that is produced by the brain and which fills both your skull and your spine. After the fluid is the bone - your skull and spinal column ending in your tail bone.

Each link of your spinal column is made up of two pieces of bone fused together: The front part, facing your organs, is smooth and round. The back part is bumpy which gives you the bumps down the middle of your back. It is through openings in the bumpy back part of your spine that nerves run throughout your body to control all your muscles.

In Annie's case, the back part of her spine is either not forming properly or not forming at all beginning somewhere in her upper back and extending down from there (T4 or T5).

What this means is that some or all of the nerves of the spinal cord are not encased in bone and spinal fluid like they were designed to be.

When the nerves of the spinal cord are exposed like that, the fluids that they come in contact with can cause them to scar and be damaged.

There is basically nothing that can be done from a treatment standpoint until the baby is born. What can be done is the assembling of the team of doctors who are going to treat the baby once it is born.

Babies in this situation are born via cesarean and typically undergo surgery to close the spinal column within 48 hours of being born. On a scale of 1 to 10, with 10 being a very difficult surgery, I am told that this proceedure is about a 6. A little harder than average.

Another surgery that is very common in these cases is the placing of a tube that runs from the brain to the abdomen to drain excess spinal fluid. That surgery usually occurs in the first week after birth as well.

The big question is, how well developed is the nervous system below the site of exposure and how damaged is the spinal cord? Remember, the nerves in the spinal cord do have a protective coating - it just wasn't designed for this type of exposure.

Typically in cases like Annie's, where the exposure is so high up in the back, the child does not have any bowel or bladder control and the child usually cannot walk and is confined to a wheelchair for life.

There is usually no effect on the brain and children born with this condition function normally and go to school, college etc.

All that being said, each child is different and you just don't know what the situation really is until birth.

It is maddening to know that something is wrong but nothing can be done from a medical treatment standpoint for another 4 1/2 months.

There is a medical study called "MOMS" that is doing in-utero surgery but only half of those selected for the study get the surgery. If you do get the surgery, you are required to move to a treatment center for about 15 weeks, the surgery is risky and there is no conclusive evidence so far that the baby does any better than those who get the surgery afterwards.

So there it is.

We will continue to do research and meet with doctors and push them for every scrap of info and every possible treatment solution. We will keep you posted every step of the way.

I feel like my little daughter is all alone in the fight of her life and it is hard to just standby knowing it is happening.

What can we do? WE CAN PRAY.

Pray that Bella's spinal cord is not damaged by the exposure.

Pray that her nervous system continues to develop normally.

Pray for the doctors who are treating her.

Pray that Holly and I are guided through all the decisions that come our way.

Pray for our finances. I have heard from my friends with children that having a baby is expensive. Hmmmm, yeah . . . .

Your prayer, love and support over the next 4 1/2 months are so very much needed and so very much appreciated. Thank you for walking this road with us.

(Click to enlarge)

Yesterday, I traded vm with the neurosurgeon in LA. He was in and out of surgery all day but was very gracious in his voice mail and offered to be a resource for us and to help us walk through the process.

I called the medical group that we have had so many referrals to and they assured me that our insurance would work. Unfortunately, they said they needed a referral from our primary care group. After that, they would contact us within 24-48 hours to set up the appointment.

The wife called the primary medical group but it was already too late in the day and everyone but the receptionist had gone home.

The wife is going to call them again this morning to get that ball rolling.

More importantly, I went to Staples and bought a three ring binder!

Pathetic.

There is seemingly so little you can do that you start to grasp at anything.

I bought a three-ring binder with tabs so that I could start building a file of info, correspondence, records, etc.

You do what you can . . .

"See, I have refined you, though not as silver;
I have tested you in the furnace of affliction."

- Isaiah 48:10

This morning I sat down and wrote a big long post about pain and how it makes you see life differently and how we all need to cut each other some slack . . . blah . . blah . . .blah . . .

When I was all done I read it through one last time.

Drivel - pure drivel . . . I realized I didn't even believe half the stuff I was spewing forth.

So I erased it all.

Yesterday morning on my way to work, a car cut me off on the freeway. "As if I don't have enough to put up with", I found myself saying.

The other day a client called to complain about this, that and the other. "You think you have problems!?" I wanted to shout into the phone . . . "You don't know what problems are!!"

This has the potential to be a dangerous time .

Sure, the wife and I are in need of an extra measure of grace right now . . . but I think we should also fight the urge to feel entitled to an extra measure of grace . . . Lord help us if we start demanding it . . .

Rather than feeling entitled to or demanding slack from others, I would hope that this experience teaches us that everyone needs an extra measure of grace from time to time . . .

As I have said before, God's miracles come in many forms and physical healing is just one of them. If God does not give us the miracle of complete physical healing that we are begging for, well, that will be difficult.

If our little Bella is placed into the arms of two parents who have been made bitter and resentful by the process - that would be truly tragic.

Prayer of Saint Francis of Assisi

Lord, make me an instrument of your peace.
Where there is hatred, let me sow love;
where there is injury,pardon;
where there is doubt, faith;
where there is despair, hope;
where there is darkness, light;
and where there is sadness, joy.

O Divine Master, grant that I may not so much seek
to be consoled as to console;
to be understood as to understand;
to be loved as to love.
For it is in giving that we receive;
it is in pardoning that we are pardoned;
and it is in dying that we are born to eternal life. Amen

It is not about how hard you hit, but it is more about your getting up after being hit so hard.

- Rocky Balboa

by Otis Redding

If I was the sun way up there
I'd go with love most everywhere
I'll be the moon when the sun goes down
Just to let you know that I'm still around

That's how strong my love is, oh
That's how strong my love is,
That's how strong my love is, baby, baby,
That's how strong my love is.

I'll be the weeping willow drowning in my tears
You can go swimming when you're here
I'll be the rainbow when the sun is gone
Wrap you in my colors and keep you warm

That's how strong my love is, darling,
That's how strong my love is, baby,
That's how strong my love is, oooh,
That's how strong my love is.

I'll be the ocean so deep and wide
I'll get out the tears whenever you cry,
I'll be the breeze after the storm is gone
To dry your eyes and love you warm

That's how strong my love is, baby,
That's how strong my love is,
That's how strong my love is, darling,
That's how strong my love is,

That's how strong my love is, so deep in,
Well, that's how strong my love is
So much love, yes so much love, oohh,
Yes so much love, yes so much love . . .

(From today's reading: Deuteronomy 11-16)

You are the children of the Lord your God

- Deuteronomy 14:1a

“The greatest pleasure in life, is doing the things people say we cannot do.”

- Walter Bagehot

My brother sent this.



Cheering Works.

Going into this weekend I knew that one of my goals was to get the whole new doctor thing sorted out so that we could get moving on that front this week.

But sorting out doctors and information for a serious medical condition you have never heard of before is like ordering off a menu written in Cantonese. You are pretty sure it is all food of some sort but you know that half of it is bad, half of it is good and there is really only one or two entrees that are really good. It's one of those two you need to pick . . .

Its overwhelming.

Where to begin?

And then my e-mail box started filling up and friends started calling . . .

A friend called to say that she bumped into and old friend she hadn't seen in over a decade. He happens to be a neurosurgeon who works with one of the best pediatric neurosurgeons in America. The practice is in LA.

Miracles.

I spoke with another friend who, through her connections in California State Government, actually has one of the VPs for the San Diego Children's Hospital and UCSD Medical Center hunting down a referral for us.

Miracles.

Many of our friends and family members have been scouring the Internet for help and have come up with the following resources for us:

Children's Hospital
Spina Defects Clinic
3020 Children's Way
San Diego, CA 92123
Phone: 858-576-1700 Ext.4641

March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains, NY 10605
(888) 663-4637 or (914) 428-7100

National Information Center for Children and Youth with Disabilities
P.O. Box 1492
Washington, DC 20013-1492
(800) 695-0285 or (202) 884-8200

Spina Bifida Association of America
4590 MacArthur Blvd NW, Suite 250
Washington DC 20007-4226
(800) 621-3141 or (202) 944-3285

First study results in on fetal surgery pioneered at VUMC

More miracles.

All that is before even mentioning that many of our friends have been asking their pediatricians for referrals. One friend, because of her profession, was actually in a position to take a survey of the actual nurses themselves at the San Diego Children's hospital!

Unbelievable.

Almost without exception, all the referrals we have received point to the same medical group at Children's and three doctors within that group in particular.

Miracles.

It's surreal.

We are connected with one of the best pediatric neuro surgeons in the country - I have VP's at the hospital hunting down referrals - someone actually surveyed the nurses of all things! - all referrals are pointing in the same direction.

And I didn't do anything.

It was all from the love and support of our friends and family.

I cannot tell you how grateful I am to be surrounded by such a wonderful family of friends.

We truly are each other's blessing.

So. The Plan.

The plan for today is to decided on a doctor and make an appointment.

Your prayers for wisdom and guidence are appreciated.