Incoherant Ramblings from a First-Time Father of an Extraordinary Daughter, along with Musings on Life, Food, Books, Entertainment, Running and Poetry all with a Lousy Dawg
In September of 2005, a good friend came over and helped me rip all the drywall out of the family room so that we could re-do it. And it remained that way for the next 3 years . . . . just studs . . . no insulation against heat or cold . . . . the whole room crammed with the refuse of "I have no where else to put this so chuck it in there . . ." The wife refused to call it the "family room" anymore and started to refer to it as the "Gonzo" and less PC terms . . . ending with the word "hole" . . .
Lately, we have been noticing that Annabelle has a bony bump just below the mid-point on her spine. We are concerned about all sorts of things this may mean and so we had the pediatrician take a look. He made an appointment for us with the ortho doc who did the initial operation on Annie's spine the day after she was born. We were able to make an appointment with the doc the same day as our appointment with the club foot folks this past Tuesday.
After the club-foot appointment, I sped back to work and left wife and child at the hospital to wait for the next appointment.
The wife called me around 3:30 to say that they were being called in - what a blessing to work 10 min away from one of the best children's hospitals in the country!
If you recall, Annabelle was born with T5-level Spina Bifida (SB) - which is pretty high. When she was born, her back was actually open from her neck to her tail-bone.
Her little spine curved outward, so in order to do the closure surgery, they actually had to shave down a portion of the protruding bony structure in order to sew her up.
The Ortho doc explained to us that there are two basic scenarios when this happens:
1) The vertebrae that the docs work on fuze together. This would give Annabelle's spine some structural rigidity, which is good. However, whatever vertebrae fuzed would not grow which would mean that Annie would basically be unnaturally short - which can present all sorts of problems for internal organ development etc etc. - This is not the case with Annie-Lu.
2) The vertebrae that the docs work on do not fuze together. This means that Annie will continue on a more typical growth pattern (which is very good). The downside is that she loses the benefit of the structural rigidity that the fuzed vertebrae would provide.
This is my interpretation of what the ortho doc explained . . . .:
Your spine is like a guitar with the strings running along the back. The "strings" are ligaments and tendons that provide the necessary tension for you to sit/stand upright. Annie does not have all the structural "strings" that typical children have so she is slumping forward. The point at which the slump is most pronounced is around the section of her spine that the doc worked on.
There is nothing to be done.
The spine is one of those areas of the body that docs do not want to mess with unless absolutely necessary as any procedures can have all sorts of ramifications. Currently, Bella's condition does not warrant invasive procedure.
What the doc did suggest is that we have Annie cast for a thoracic brace (I am not sure if that is the correct term). Basically, it is a plastic shell that straps around her mid-section. It will give her the support she needs to continue growing in the right direction. Once Anna-ba-lu is done growing, we can consider permanent solutions to her posture.
The news was neutral as far as I was concerned - just one of those "next step" sorts of things . . . but it hit the wife pretty hard. After seeing Annie's feet in the morning and hearing that Annabelle has trouble supporting herself later that same day, well, it was more than any mother should be asked to handle . . .
After explaining the whole situation to Annie's "Aunt" Wendy, the wife received the following e-mail . . . (get the tissues):
The Armor of God
10Finally, be strong in the Lord and in his mighty power. 11Put on the full armor of God so that you can take your stand against the devil's schemes. 12For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms. 13Therefore put on the full armor of God, so that when the day of evil comes, you may be able to stand your ground, and after you have done everything, to stand. 14Stand firm then, with the belt of truth buckled around your waist, with the breastplate of righteousness in place, 15and with your feet fitted with the readiness that comes from the gospel of peace. 16In addition to all this, take up the shield of faith, with which you can extinguish all the flaming arrows of the evil one. 17Take the helmet of salvation and the sword of the Spirit, which is the word of God. 18And pray in the Spirit on all occasions with all kinds of prayers and requests. With this in mind, be alert and always keep on praying for all the saints.
Dearest Holly,
I read this passage of scripture on Tuesday morning as a part of a devotional on prayer. As I prayed for Annie a short while later, I asked God for a passage of scripture to share with you when you dropped off Buckley. This passage of scripture came to mind, but I didn't think it was a word from the Lord because in my lame opinion it didn't really fit the circumstances of your day. I figured that it just came to my mind because it was what I had read as a part of my morning devotional. When Matt described how your day had gone, and the next course of treatments for Annie I realized how wrong I had been. I wanted to share this with you this afternoon on the phone, but I didn't want to start talking about this only to get interrupted by the boys. I decided to wait to share my thoughts on this with you when I was sure that I could complete them!
I love v.14 of this passage, and I think it describes your little Belle perfectly! "Stand firm then, with the belt of truth buckled around your waist, with the breastplate of righteousness in place, 15and with your feet fitted with the readiness that comes from the gospel of peace." Every time I see Miss Annabelle with a brace around her torso and braces on her feet, I will think of this verse. The hand and protection of God have so clearly been upon this precious girl since the moment her life first came into being. He has indeed put his belt of truth around her waist and placed his breastplate of righteousness over her heart. And he has fitted her feet with readiness for everything he will call her to do as she is continually filled with His gospel of peace. And now there will be a visible reminders of this truth.
My heart aches for the past, present, and future difficulties that Annabelle, and you and Matt will have to journey through together. But as I have said before, I never doubt whether or not any of you will "Stand firm". I am just saddened by the pain that cannot be separated from an undoubtedly triumphant journey. Annie IS so special. People are drawn to her because the light and love of Jesus just pours out from her. She is one of his armor bearers, and everyone who is near her is blessed because the presence of the Lord just surrounds her. It is truly amazing!
I will continue to pray for you "in the Spirit on all occasions with all kinds of prayers and requests. With this in mind, be alert and always keep on praying for all the saints.' (v. 18)
With thoughts of great love,
Wendy
Thank you for your continued prayers and support . . .
The Internet has been down at the house and I have been working 13-15 hours a day which leaves little time for anything else - but enough about me (he blogged)!
We went into the club foot clinic Tuesday morning. They cut Annabelle's casts off and we were eager to get our first post-surgery look at her feet.
My thinking was: "Major surgery followed by casts for 6 weeks could = nasty"
I suppose the wife and I should have consulted on this point. I was preparing for weak-in-the-knees nasty and she was preparing for something considerably less troubling.
As they cut the casts off, I could see the stained gauze around Annie's ankles and I thought, "Yep". Once the casts and padding were off, the tech began pulling the gauze off and stopped. "Let me get the doctor", he said - and stepped out of the room. The wife shot me a worried glance.
The doc came in, finished removing the gauze and said . . . "Well, we don't like to see this but we see it all the time . . ."
He went on to explain that when you make such a drastic change of position in one procedure, the skin does funny things. It bunches up in some places and stretches in others. In Annie's case, her skin was stretched around her heels (right where they did the incision for the operation).
Her right foot looked pretty good but her left foot was not-so-good. The dissolving sutures were gone but the skin had failed to heal together. There is about a 1/4 inch gap in her skin running from her arch, around her heel and midway down the outside of her foot. It was about 1/8 of an inch deep and pretty nasty looking.
The doc assured us that it would all heal but that it would take some time.
He wrapped her feet in gauze so that we could have her cast for orthodics.
The gal from the orthodics company came in and wrapped Annie's legs in fiberglass to make molds for her AFO's (Ankle-foot-orthodics). The process was pretty aggressive and after seeing what we had just seen, pretty difficult to watch.
The AFO's are basically little plastic boots with the front missing so that you can see your shin and the top of your foot. You slip right into them since they are molded to your body and they are secured with a couple of Velcro straps. Annabelle is supposed to be in them pretty much all the time but we can take them off for baths etc . . . and it sure will beat being in casts!
Once the molding was done, the tech packed Annie-Lu's feet in antibiotic gauze etc and then put her back in double-leg casts. We chose pink again. So funny, we have never been "Girls get pink and boys get blue" sort of people but how can you argue with THIS????
The only reason Bella is in casts now is to keep her feet properly positioned until the AFO's are ready (about 2 weeks).
At that time they will call us in to have the casts REMOVED. They will bandage her feet as necessary and put on the AFO's.
By the time Annie gets her AFO's she will have spent half her life in double leg casts and we are very much looking forward to having that episode behind us.
Having seen her feet, I am also eager to have her out of casts so that she will heal faster.
Thank you for all your prayers and support - spinal update to follow . . .
Hey Sweet Annie Don't take it so bad You know the summer's coming soon Though the interstate is choking under salt and dirty sand And it seems the sun is hiding from the moon
Your daddy told you When you were a girl The kind of things that come to those who wait So give it a rest girl Take a deep breath girl And meet me at the Bay State tonight
And the snow is coming down On our New England town And it's been falling all day long What else is new What could I do I wrote a valley winter song To play for you
And late December Can drag a man down You feel it deep in your gut Short days and afternoons spent puttering around In a dark house with the windows painted shut
Remember New York Staring outside As reckless winter made its way From Staton Island to the Upper West Side Whiting out our streets along the way
And the snow is coming down On our New England town And it's been falling all day long What else is new What can I do But sing this valley winter song I wrote for you
Four years ago today, the wife and I woke up as homeowners for the first time ever.
Our new home was in pretty rough shape but we thought the spaces were right and we were willing to put some sweat equity into it.
This is what the back deck looked like when we made the offer . . .
Once our offer was accepted and we were "in escrow" the wife wanted to go out and buy something for the house - "What do you think is the first thing we should get?" She asked.
"Tiki torches", was my reply. "No matter how bad a place looks, when you light Tiki torches at night, the whole place looks better . . .". We have the same Costco tiki torches still . . .
Just last month, we had some friends over to celebrate the wife's B-day. Our friend Deron is really into his new camera and he took some great shots of the evening so this seemed like a perfect opportunity to post some before and after photos of the ol' homestead
Here is a shot of the yard - looking south (before)
(After)
Back Yard looking North (before):
(After)
Da Shed (before)
(After)
Looking from the family room through the dining room into the living room (before):
(After): 1947 built-ins in the hallway to the bedrooms (before):
(After): Living room (before): (After: This is the wall where we hang artwork done by the children in our lives)
The wife hates the sight of this thermostat in the living room so she made a frame for it - if you can't hide it, accent it!
"Tangy marinated chicken and mushrooms, wrapped in bacon and skewered. Excellent for entertaining and trying something new! These are a must try! (They can also be broiled instead of grilled if low on time.)"
The pursuit of gardening is really no pursuit at all. It's like chasing a driverless car, parked on the side of the road. You're standing there, waiting for something. Is it that the car has yet to leave the curb? Or were you plotting a chase where there was never one to be had? Eventually the flower blooms, whithers, and dies, all in the span of a week or so, and it is as if God, Himself, has emerged from the house, waved to you as he got in the car, and then has driven off, leaving you standing there on the curb, awestruck. Dumbstruck. And forgetting the chase entirely.
Grilled cheese is pretty much the best thing since sliced bread. After all, it is sliced bread--with the added awesomeness of cheese and butter. Can it really get any better?
After being hit with what can only be described as a stroke of pure genius, I can definitively say yes. It can get better.
I have actually been in the White House and I didn't know it had a basketball court, pool and tennis court (next time I will know to bring my swimsuit)!
A week or so ago I noticed that there was a bump just below Annie's sternum that seemed to bulge whenever she flexed her abdominals in order to sit up. My immediate thought was "hernia".
We have also noticed that Annie is developing a bony bump on her spine right where they shaved it down just after she was born. (For those who don't know, Annabelle's spine curved outward just below the middle of her back - the docs had to shave down the bony protrusion to close the tissue and skin over it).
Well now, it looks like that spot on her back is growing outward and there are the beginnings of what look like a sore developing on her skin.
The wife took her in to the Pediatrician to have her checked out. Naturally, the bump in her belly is gone or moved or shifted so the doc said not to worry. He is concerned about her back though.
He put a small bandage over the spot and gave us orders not to remove it. He gave us the referral to the Ortho doc and we plan on seeing him on Tuesday next week.
After work yesterday I ran all over town to find foam so I could customize some padding for Annie's bed that would not put so much pressure on that portion of her back.
I cannot tell you how much I DO NOT want this to result in another spinal surgery for the little one.
The whole thing just sort of hit the wife and I like a lead weight to the gut. It is all just so wearying right now. We just want little Annie to be out of casts and with a surgery-free calendar.
The best way I can describe it is the way you feel at the end of a really long run . . . its funny, but after you have run to your limit, little things like running up and over a curb become causes of great concern. You don't want to stop running because you are afraid you won't be able to start up again and yet, the sight of a curb, that normally does not even rate as worth your attention, creates a small amount of panic . . . "don't fall, don't fall, don't fall . . ."
We are just sort of stumbling along right now - all our adrenalin spent . . .
Thank you for your prayers and support - we will keep everyone posted . . .
There was an adorable family that attended our church in Idaho. The mother was beautiful, the father was handsome and both their daughters we as cute as could be. You never saw any of them without a smile.
One day, the eldest daughter came to me and said she was sometimes saddened by her parent's relationship. This came as a total surprise to me since I had always thought of them as having a very healthy relationship.
As it turns out, her mother and father were divorced. Her dad had moved out for a year or so and then her parents had started dating each other again. They fell in love all over.
When the father needed a place to stay, the mother asked him to move back in . . . they never did remarry but were now happier than they had ever been.
I listened to a recent podcast of This American Life and thought it was fantastic. Especially the first story:
Teaser:
The story of an Iranian couple who were unhappily married for 27 years. He had a temper. She never really loved him. So they split up, got divorced. And then, two years after that, to every body's surprise—especially their grown-up children—they fell in love and married each other again. And this time, everything was different. One of their daughters, Nazanin Rafsanjani, tells the story
We had been discussing getting a dawg - nothing serious - just a sort of, "If we were ready to have a dawg, what sort of dawg would we want?" sort of conversations.
I said that I always thought it would be great to have a Golden Retriever / Labrador retriever mix and the wife agreed.
To our surprise, one of Holly's co-workers announced a few months later that someone had given them an 8-week old retriever/ lab mix that they could not keep.
It took us 3 days to decide we would take him - sight-unseen.
I knew the moment I saw him that THIS was not a retriever/lab mix:
But he sure was cute!
We took him home and have never regretted it.
I will come out and say it - he is a striking animal. Tall, long, muscular and the sweetest face ever to grace a canine. BUT WHAT IS HE?
Literally EVERY TIME we are in public we get stopped by someone who wants to know what type of dawg he is. When we respond "He's a lousy mutt" or lately, "Mongrel" people are astonished. "Oh mutts are the best kinds", they say . . . and then follow up with, "But still, I expected him to be some rare exotic breed . . ."
Well. I can't stand it anymore.
There are dawggie DNA tests that you can order (some pricier than others). I found an inexpensive one on the Internet and ordered it.
You swab the inside of your dawg's cheek for cells, drop the swab in an envelope and mail it off to the lab. In 3 weeks or so, you get the results detailing all the various breeds that went into the making of your particular mongrel. (I was tempted to swab the inside of Annie's cheek but the wife wouldn't allow it . . )
So let's make a contest out of it!
Guess the top four breeds in this mangy mutt of ours and you will win a dawggie-graphed 8x10 of the beezer - the world's best dawg.
Submit your guesses in the comments section or email them to matthew.m.linden@gmail.com.
You are only allowed one guess but you can change your guess upon further reflection . . .
Here are a few more photos for research purposes (BTW - he is now 2 1/2 years old and 80 lbs . . )
Let's figure out what's in this puppy once and for all!
Here is a another clip form the Muppets just because they are so awesome:
When I was in elementary school, I typed my reports on an Underwood manual typewriter.
When I was in Jr. High school only girls took typing class because it was thought that unless you planned on being a secretary, what was the point? (my Jr. High had electric typewriters).
There were no cell phones, no VCRs, no DVDs, no CDs, no computers.
If you wanted to make a phone call, you had better have a dime to plunk into the phone booth. If you missed your show on TV, THAT WAS IT - you missed it.
Ray believes that we will conquer death in the next 50 years. His theory is called "Singularity" where man merges with machine. Computers that used to take up entire rooms now fit in our pockets - Ray says those same computers will fit into our bloodstream in the future.
Here is an interesting video clip:
I don't really have any opinions about the whole merge-with-machine-conquer-death scenarios. I figure we will burn that bridge when we get to it.
Ahhhh . . . but advances in medicine . . . . that gets me interested . . . .
My hope is that modern medicine figures out a way to give Annabelle the opportunity to walk in her lifetime. I don't think it is a totally unreasonable expectation.
My prayer is that if medicine doesn't, God does.
And yet . . . we need to get on with the here and now . . . I am making plans on where to put the ramps in our house and it occurred to me the other day that our next car purchase may very well be a van with a wheelchair lift . . .
This past weekend, we were out at one of our new favorite restaurants . . . sitting on the deck under a sunset sky. The dawg was dozing at my side . . . I was finishing my dinner (I am a slow eater) while the wife had already headed to the car to nurse the wee-one.
We are quite a spectacle when the whole family heads out. The wife is beautiful, of course. The child is about as cute and cheerful as can be. The dawg is enormous, and handsome, and well-mannered. And then there is me - adding contrast to the other three.
I would imagine that the casual passerby looks at our little real-life tableau and thinks, "There is an ideal all-American family."
Once the wife and child headed to the car, a women dining alone at the next table struck up a conversation with me . . . were we from around here? How about this weather? Nice dawg you have, what is he? How old is your daughter etc . . .
The woman asked about the casts on Annie-Lu's legs and I assured her that things were going reasonably well.
"So will she . . . is she going to be . . . will she walk okay and everything?" the nice lady stammered.
And now comes the moment that replays week after week in our lives . . . the moment where I gently shatter a kind stranger's perception of this perfect little family . . . "No", I said as I smile and shake my head . . "Annie doesn't move her legs and the doctors say she will be in a wheelchair for life . . ."
I watch as the kind stranger's smile fades, the brow furrows in incomprehension, and then sadness fills her eyes . . . just as it has with a dozen other kind passersbys over the past months . . .
"But . . . but . . ." (I can almost hear the voices in her head screaming "this cannot be!") "Medicine is doing amazing things these days . . . " she fumbles . . .
And now comes the time for me to add comfort and support to someone I don't even know who is struggling with my daughter's situation . . .
"There has never been a better time in all of human history to be born with Spina Bifida", I reassure her.
"We are hoping that medicine figures out a cure in her lifetime . . . we are praying to God for healing . . . in the meantime, we are getting on with it and trying to teach our daughter that life is beautiful anyhow . . ."
And now I am the hero. The brave and strong and optimistic father. I can see the sadness in the stranger's eyes replaced by hope and inspiration and admiration and just "How great" our little family is . . . the all-American tableau has been restored for this passing friend - only better and stronger than it was before for having met adversity head-on and overcome it all . . .
The funny thing is, our family was not as perfect as she thought in the beginning . . . and our situation isn't as devoid of hope and happiness as she may have thought in the middle . . . and I am not as brave and strong and inspirational as she may have thought at the end . . .
The lady leaves inspired and I sit, exhausted as always, and try to enjoy 2 minutes of quiet before heading to the car. I'm not a hero. I'm just a dad - doing what dad's do - their level-headed best.
I pray that God touches our little one with healing.
I am hopeful that medicine finds a cure in her lifetime.
And I would trade all the utterly ridiculous Iphones and Facebooks and MaySpaces and Blogs and whizbangs and gizmos in the world for one solid breakthrough in the neuro-sciences . . . It may take some time for me to find that old Underwood but I will manage . . .
In the meantime, we are going to get on with it - because life is just too beautiful to waste.
I set my empty glass down, the dawg perks up his ears . . I sign the bill . .
"Let's go lousy dawg . . ." and we are on our way to the car for the long drive home . . .
Thanks man!
