Wednesday, October 27, 2010

Of Paperwork and Doctors

Doctors require a great deal of paperwork. I try to download what I can and fill it out at home before getting to the office just to save time and because there are usually enough pages to give a person a hand-cramp before they are finished.

But, there is always that chance that you walk into a doctor you have seen a several times in the last year, and after they photocopy your insurance card and driver's license again, they hand you a stack of papers to fill out that look incredibly similar to the "new patient forms" you filled out prior to the first visit. Only these forms are to update your record. I think what they don't want to tell you is that someone accidentally spilled their coffee on your file, and they can't read your address in order to send you the bill. So, they have you fill out all three or four pages while you wait and before you are allowed to see the doctor, so they will have your billing address...and a LOT of other stuff.

Is all that information really necessary? I understand needing the social security number and address of the patient and the person responsible for the bill. They need those to file with insurance, and in case you renig on the bill, and they file it on your credit. But, they also want the social security numbers, addresses, cell phone and work phone of every other person in your life. Is that really necessary?

And, they want your driver's license number and every piece of information printed on your insurance card. Didn't they just copy both of those? Maybe, it's like an open book test to check your eye sight.

But I can understand the information from the insurance card. What if the same person spilled coffee on the photocopy of the insurance card? They have a back-up of your handwritten insurance card.

Some questions make sense. It makes sense that they need to know if anyone had certain illnesses in your family. But, is it really necessary to know how many pets you have or what kind they are? And do you need four lines to answer those questions? I suppose if you were going to the vet, but not for a gastroenterologist.

Some questions apply to adults such as workplace and occupation. But, when you are filling it out for a child what do you put?

Workplace: Home
Work Address: See above address listed three times
Occupation: Playing...and chasing the three cats, riding the two dogs, antagonizing the guinea pig, and trashing mom's house faster than she can clean it.

And, how many emergency contacts does one person need? And they want the person's name, address, cell phone, and work phone. For this reason, I am having my husband's name, address, cell phone, and work phone tattooed on my arm where they check my pulse. And, should I have a heart attack, and they are checking the records for my contact info, it will read, "check pulse."
It just saves everyone time.

But, they also want "an emergency contact who does not live in the home and you are not related to." Really?

Well, since this is all about being thorough:

If I trip and break a bone, call my, address, phone number.
If I have an allergic reaction, call my doctor (that's not you), address, phone number.
If I become locked in the bathroom and the door is jammed, call my handyman....
If I am accosted by ghosts, call Jason and Grant of Ghosthunters...
If I am accosted by evil spirits, call a priest, any priest with a REALLY big cross...
If I am robbed at gun point, or at any point for that matter, call the police....

I am nothing, if not thorough.

Tuesday, October 26, 2010

The Quest for Encouragement: Are you in the airport or not?

A friend read Amsterdam International and asked what she could do or say to support and encourage those of us with neuro-atypical children (my word not hers, but about that in another post). I was so touched by her question. The simple desire to encourage me means more than any words she could ever utter.

Yet so often I don't even admit that I am in Amsterdam International, let alone admit that there are no windows to even view the tulips and windmills. When asked the age old question, "How are you?" I give the age old answer, "Fine." Besides, there is no way to answer that question when the airport feels like it is closing in on you.

So, using Dana's analogy of the airport and tulips, I have devised a coded question for friends and family to ask the parents of neuro-atypical children....

Are you in the airport or not?

You see some days you are in the airport. You might be near a window with at least a view of the tulips, but other days you might be smack-dab in the middle with no sight of an exit, a plane, or a tulip. All you see is the concession stand and its day-old sandwiches.

Then there are other days, when you escape the confines of the airport to see Amsterdam. You might not see the tulips, but you are at least breathing fresh air. But, other days, you might actually be seeing the tulips.

Each day is different. For those of us who have children with health problems, we cannot begin to explain those problems in the few minutes allowed for the "How are you answer?"

But, if we ask, "Are you in the airport or NOT?" A quick answer tells all and means the world to us moms. Just knowing that someone is interested...Just knowing that there is no judgment in how we truly feel, reminds us that even when we feel we are alone, we aren't. We have friends, who if they cannot even begin to understand what it is like to prep a two-year old for a colonoscopy, they can accept where we are and how we feel.

No matter the issue of the day or the view in Amsterdam, we just need a caring heart and sometimes someone to listen to us. We realize not everyone wants to know all the details. All we want to know is that someone cares enough to ask..."Are you in the airport or not?"

Quest for a New Word

With all due respect to those who believe there is no such thing as a normal child, I do believe there is a "normal." AND that my Snugglebug does not fit in that category.

A normal child goes to the park, Snugglebug goes to Specialists (6 to be exact).
A normal child goes on playdates, Snugglebug goes to therapy (3 hours a week to be exact).

A normal child does not have to be prodded to move forward in development. It just happens.

So, while the word normal is not the best word to use, I am at a loss for what to use to describe our situation. A Dup Group parent suggested the terms neuro-typical and neuro-atypical to describe their two different developing children, one of whom has 7q11.23 duplication and one who does not. I like the terms. They seem to fit the definition.

So, until I find a better way to describe sweet babies who need extra love, extra help, and extra supervision, I'll be using neur-atypical.

I'm open for suggestions.

Monday, October 25, 2010

Amsterdam International

The article below was written by Dana Nieder, the mother of a special needs child. This article speaks to every crevice of my heart. It is hard to explain what it is like to be a parent on this journey of life with a neuro-atypical child, but she does.

The poem below, Welcome to Holland, is written by Emily Perl Kingsley, a writer for Sesame Street and the mother of a child with Down Syndrome.

Dana uses the poem as a basis for her article, which is why I included Welcome to Holland here. Dana includes a link to the poem in her article.

I would love to hear comments from you, my readers.



Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.


Amsterdam International
Written by Dana Nieder

To fully get this post, please read (or re-read) Welcome to Holland before starting. Thanks.

In the special needs world, there is a poem (essay? whatever.) called "Welcome to Holland." It is supposed to explain what it's like to have a child with special needs. It's short and sweet.

It skips everything.

While "Welcome to Holland" has a place, I used to hate it. It skipped over all of the agony of having a child with special needs and went right to the happy ending.

The raw, painful, confusing entry into Holland was just glossed over. And considering the fact that this little poem is so often passed along to new-moms-of-kids-with-special-needs, it seems unfair to just hand them a little story about getting new guidebooks and windmills and tulips.

If I had written "Welcome to Holland", I would have included the terrible entry time. And it would sound like this:

Amsterdam International

Parents of “normal” kids who are friends with parents of kids with special needs often say things like “Wow! How do you do it? I wouldn’t be able to handle everything---you guys are amazing!” (Well, thank you very much.) But there’s no special manual, no magical positive attitude serum, no guide to embodying strength and serenity . . . people just do what they have to do. You rise to the occasion, and embrace your sense of humor (or grow a new one). You come to love your life, and it’s hard to imagine it a different way (although when you try, it may sting a little). But things weren’t always like this . . . at first, you ricocheted around the stages of grief, and it was hard to see the sun through the clouds. And forget the damn tulips or windmills. In the beginning you’re stuck in Amsterdam International Airport. And no one ever talks about how much it sucks.

You briskly walk off of the plane into the airport thinking “There-must-be-a-way-to-fix-this-please-please-don’t-make-me-have-to-stay-here-THIS-ISN’T-WHAT-I-WANTED-please-just-take-it-back”. The airport is covered with signs in Dutch that don’t help, and several well-meaning airport professionals try to calm you into realizing that you are here (oh, and since they’re shutting down the airport today, you can never leave. Never never. This is your new reality.). Their tone and smiles are reassuring, and for a moment you feel a little bit more calm . . . but the pit in your stomach doesn’t leave and a new wave of panic isn’t far off.

(Although you don’t know it yet, this will become a pattern. You will often come to a place of almost acceptance, only to quickly re-become devastated or infuriated about this goddamned unfair deviation to Holland. At first this will happen several times a day, but it will taper to several times a week, and then only occasionally.)

A flash of realization---your family and friends are waiting. Some in Italy, some back home . . . all wanting to hear about your arrival in Rome. Now what is there to say? And how do you say it? You settle on leaving an outgoing voicemail that says “We’ve arrived, the flight was fine, more news to come” because really, what else can you say? You’re not even sure what to tell yourself about Holland, let alone your loved ones.

(Although you don’t know it yet, this will become a pattern. How can you talk to people about Holland? If they sweetly offer reassurances, it’s hard to find comfort in them . . . they’ve never been to Holland, after all.

And their attempts at sympathy? While genuine, you don’t need their pity . . . their pity says “Wow, things must really suck for you” . . . and when you’re just trying to hold yourself together, that doesn’t help. When you hear someone else say that things are bad, it’s hard to maintain your denial, to keep up your everything-is-just-fine-thank-you-very-much outer shell. Pity hits too close to home, and you can’t admit to yourself how terrible it feels to be stuck in Holland, because then you will undoubtedly collapse into a pile of raw, wailing agony. So you have to deflect and hold yourself together . . . deflect and hold yourself together.)

You sneak sideways glances at your travel companion, who also was ready for Italy. You have no idea how (s)he’s handling this massive change in plans, and can’t bring yourself to ask. You think “Please, please don’t leave me here. Stay with me. We can find the right things to say to each other, I think. Maybe we can have a good life here.” But the terror of a mutual breakdown, of admitting that you’re deep in a pit of raw misery, of saying it out loud and thereby making it reality, is too strong. So you say nothing.

(Although you don’t know it yet, this may become a pattern. It will get easier with practice, but it will always be difficult to talk with your partner about your residency in Holland. Your emotions won’t often line up---you’ll be accepting things and trying to build a home just as he starts clamoring for appointments with more diplomats who may be able to “fix” it all. And then you’ll switch, you moving into anger and him into acceptance. You will be afraid of sharing your depression, because it might be contagious---how can you share all of the things you hate about Holland without worrying that you’re just showing your partner all of the reasons that he should sink into depression, too?)

And what you keep thinking but can’t bring yourself to say aloud is that you would give anything to go back in time a few months. You wish you never bought the tickets. It seems that no traveler is ever supposed to say “I wish I never even got on the plane. I just want to be back at home.” But it’s true, and it makes you feel terrible about yourself, which is just fantastic . . . a giant dose of guilt is just what a terrified lonely lost tourist needs.

Although you don’t know it yet, this is the part that will fade. After you’re ready, and get out of the airport, you will get to know Holland and you won’t regret the fact that you have traveled. Oh, you will long for Italy from time to time, and want to rage against the unfairness from time to time, but you will get past the little voice that once said “Take this back from me. I don’t want this trip at all.”

Each traveler has to find their own way out of the airport. Some people navigate through the corridors in a pretty direct path (the corridors can lead right in a row: Denial to Anger to Bargaining to Depression to Acceptance). More commonly, you shuffle and wind around . . . leaving the Depression hallway to find yourself somehow back in Anger again. You may be here for months.

But you will leave the airport. You will.

And as you learn more about Holland, and see how much it has to offer, you will grow to love it.

And it will change who you are, for the better.

© Dana Nieder 10/2010

Please feel free to forward this, blog about it, post it places, etc. My intent in writing it was to reach families in the early stages of processing having a child with special needs and to let them know that they are not alone. If you do blog about it, post it on a website, forward it, etc, please link back to this blog (or cite my name, Dana Nieder) and include my email address ( so that I could be contacted if anyone wants to reach out.

Also, if you blog about it or post to a website, please email me to let me know, because I think that's pretty cool :)

Thanks for reading :)
Posted by Dana at 10/05/2010 10:05:00 PM

Saturday, October 23, 2010

Play Ball!!

It's a great day to be a Texas Rangers fan!

Last night, I sat in utter astonishment as the team that I have routed for my entire life won the American League Championship Series. This nn contrast to their win for the American League Division Series where I was jumping up and down, dancing, and doing this internal squeal because the rest of my family was sound asleep. For the ALCS win, I was elated to the point of not really believing it. It took all of five minutes for it to set in, and then, I jumped in my car, drove fifteen minutes to the nearest big city to purchase one of the last ALCS Championship t-shirts. At 10:35 p.m., they were sold out. I was lucky to get what I did. Granted, I could wait till Tuesday when they have a million shirts, but for someone who has attended Ranger games, listened to them on the radio and watched them on TV, and memorized the roster year after year, I had to show my respect by a late-night drive to purchase a t-shirt.

My husband has been giving me grief about my division championship t-shirts. I bought two! I wear one, then wash it the next day, while wearing the second. On the off chance that I don't have time to do laundry that day, I also bought a Hamilton jersey t-shirt to wear in between the division championship t-shirts. Alas, I have thoroughly enjoyed seeing my team do so well this season.

All of this is my dad's fault. Yes, I blame him for my baseball enthusiasm. It started on a beautiful Sunday afternoon when he rounded up my sisters and I and took us into the backyard. He presented each of us with these large, uncomfortable, plastic gloves and showed us this large, bright orange softball. While it may have been a softball, the game he taught us was clearly referred to as baseball.

That day he taught us the fundamentals of a game that we would all fall in love with. It was the beginning of many a Sunday afternoon spent playing our four-person version of baseball.

Near the beginning of baseball season, we would rent every baseball movie the library had in stock. Our favorite was The Sandlot. It's still a favorite to this day. Then, baseball season would begin. We didn't watch every single game on tv, but we watched quite a few. We attended at least one game a season, a tradition that I continued through college and until I married and moved to far from the stadium to make attendance easy.

We are passing on the tradition to our own Snugglebug. We introduced him to baseball while on vacation this summer via The Little League World Series! Another family staple around here is the LLWS. We don't miss it!

Each night in our hotel room, we would snuggle down under the covers and watch the boys play ball. Even two-year old Snugglebug watched all six innings. Who would have ever guessed that a little one would sit still that long?

When we got home, we purchased him a t-ball set and started our lessons of baseball. When the Rangers' games start, he gets out his t-ball set and bats when they bat. If he isn't batting, he is sitting next to his daddy, watching the game. We let him stay up a little past his bedtime, so he can watch part of the game with us.

For you football fans, you shouldn't worry. We are great believers in a well-rounded education and his daddy is teaching him the ins and outs of football and even tosses a small, plastic football with him in the backyard. But, this post is about baseball and the glory of what is OCTOBER and the WORLD SERIES!!


Thursday, October 21, 2010

Book Review: Out Live Your Life by Max Lucado

If you enjoy Max Lucado books, then you will enjoy this one. In his traditional, easy to read style, Lucado inspires the reader to move forward in his or her Christian life. While the book is not full of fascinating ideas to out live your life, it is a gentle reminder that God places moments within each day when we can make a difference in someone else's life. Lucado sites lots of scripture and compares today's church to the early church in the book of Acts. He reminds the reader of what we are supposed to do as a church and as Christians and encourages us to do just that.

This book is not overwhelming. Unlike, A Hole in Our Gospel, it does not leave you in tears with each chapter and when you close the book you are not spurred to pack your bags and become a missionary. But, it does remind us that we have a great job to share God's love and grace with others.

As with most of Lucado's books, this one also comes as a small group or individual Bible study. I read this book in three days and wouldn't necessarily say it would make a great Bible study.

Hanging Out at the Pumpkin Patch

Another fall tradition is a visit to a pumpkin patch. Thus far we have not visited the same one twice which adds to the fun. There are so many different pumpkin patches in the area. This year we went to the Dallas Arboretum. It is a bit of a drive for us and in Dallas traffic no less. But, we made it and it was well worth the trip.

Snugglebug enjoyed the pumpkins immensely. He has been learning the word pumpkin in sign language and by the time we went to the pumpkin patch, he was signing it quite well. He was almost chanting in sign language, "pumpkin, pumpkin, pumpkin."

The hay maze was a favorite of Snugglebug. He ran through the maze and then climbed on the hay bales. This was his first attempt at climbin

Climbing on the hay bales is a big deal for this texture sensitive child. The first time he touched the hay he drew back his hands and rubbed them on his shirt. The second time he tried just touching the hay with his knuckles. Still not good. He gave up and continued running through the maze but the desire to climb overcame his texture issues, and he succeeded in climbing the hay bale. That was only the beginning. There wasn't a hay bale that he didn't climb after that.

There were hay bales everywhere with pumpkins of all sizes piled on them and around them. The kids could climb all over the hay and the pumpkins. No rules about looking but not touching.
My favorite pic of the day. He chose this pose himself.
"I'll have pumpkin, please." Sitting in the chair was his idea, but he wanted the chair the girl in pink was sitting in.

My sweet baby boy and I.

Tuesday, October 19, 2010

On Adoption

From Max Lucado's Outlive Your Life, 2010: Thomas Nelson Publishers: p. 6

And we have enough bedrooms to house the orphans. Here's the math. There are 145 million orphans worldwide. Nearly 236 million people in the United States call themselves Christians. From a purely statistical standpoint, American Christians by themselves have the wherewithal to house every orphan in the world.

Of course, many people are not in a position to do so. They are elderly, infirm, unemployed, or simply feel no call to adopt. Yet what if a small percentage of them did? Hmmmm, let's say 6 percent. If so, we could provide loving homes for more than 14.1 million children in sub-Saharan Africa who have been orphaned by the AIDS epidemic. Among the noble causes of the church, how does this one sound? "American Christians Stand Up for AIDS Orphans." Wouldn't that headline be a welcome one?

I don't mean to oversimplify these terribly complicated questions. We can't just snap our fingers and expect the grain to flow across borders or governments to permit foreign adoptions. Policies stalemate the best of efforts. International relations are strained. Corrupt officials snag the systems. I get that.

But, this
much is clear: the storehouse is stocked. The problem is not in the supply; the problem is in the distribution. God has given this generation, our generation, everything we need to alter the course of human suffering.

Cynda Here:

For most of you, if not all of you, reading this blog, you fall into a category known as Gentiles. We aren't born of God's biological family known as the Israelites or Jews. Yet, God saw fit to adopt us idol worshiping gentiles, love us as his own children, and give us part of their inheritance. He didn't have to. He had his own children already. Brought out of Egypt by His hand, led to the promised land by His leaders. He has an entire nation. Yet, he chose to adopt us because of his immense love for all of us regardless of nation or skin color.

Without God's love, we didn't stand a chance. We were lost, hungry, and lonely. But, he took us in, made us his own, and gave us an inheritance.

There is no greater way to share the love God has so freely given us than to follow his example and adopt a child that is not our own, that does not share our genes or biology, and maybe not even our skin color.

In Texas alone, there are 3500 children ready and waiting to be adopted. I don't know what percentage of households in Texas would fall into the same 6% as described by Lucado above, but I am guessing that there are more than 3500 households in Texas who could adopt these children.

These children and others world-wide don't stand a chance without us. They will die hungry, lost, and alone, if someone isn't willing to share God's love and grace with them.

Book Review: The Grace of God by Andy Stanley

The Grace of God by Andy Stanley is by far the most enlightening book that I have read this year. Stanley explains grace in a way that I've never heard before.
I read this book in three days and turned it around to start over again. I couldn't put it down, but there was just too much information to digest the first time around.

I would highly recommend this book to anyone anywhere. It would make a great book for new Christians as well as experienced ones. It would also make a great Bible study for a small group. With 13 chapters and tons of scripture references, a small group could read a chapter or two a week and discuss it. I can imagine no greater faith builder than discussing the meaning of the Grace of God.

I've sat under many preachers and never heard them explain grace in this way. Stanley illustrates his point with scriptures and stories from the Old Testament to the New Testament.

He begins with creation, explaining that the very act of creating the world and eventually man is an act of God's grace. He continues with Adam and Eve and the first sin and their need for grace. He follows the same train of thought through the Old Testament and into the New Testament. Using historical background that is not included in the scriptures, Stanley throws light on the reason why it was so important for Jesus to speak to the Samaritan woman at the well. Stanley highlights the historical significance of Pharisees, Sadducees, and Tax Collectors so that we might better understand the incredible amount of Grace Jesus shared throughout his ministry.

But, Stanley doesn't end with Christ's death. He continues through church history showing how the church deviated from the gospel and surmising why grace was not enough for their religion. He ends with today's church and asks some poignant questions about today's churches and today's religion. He explains the meaning of graceless religion in a way that will forever stick in my mind.

Stanley gave me new understand of God's grace, my faith, and the need for trust in God. It was as though he provided a key to understanding every story in the Bible not to mention the true meaning of "by grace we are saved."

Sunday, October 17, 2010

State Fair of Texas

I love this man!! We go to the State Fair of Texas every year. I can probably count on one hand the years I have missed the fair since I was about 12 or 13 years old. We missed the fair last year due to the weather interfering but this year the weather was perfect and so were the people who went with us.

BIG TEX: The Voice of the State Fair welcomes each person with a Texas sized "Howdy"

Our Crew: Derek, Mei Mei (5 y/o), Jennifer, Kenny (11 y/o), and Snugglebug (2 y/o).
Derek is one of our "adopted" kids. Jennifer is his fiance'. Mei Mei is Jennifer's guest and her "adopted" sister for the day. Kenny is Jennifer's little brother. As you can see, we have a lot of "adopted" kids with us. They aren't adopted in the traditional sense and the story is far more complicated than I can explain. Suffice to say that they spend a lot of time with us (minus Mei Mei who we met for the first time this trip). They three younger ones added so much joy to the day. We experienced the fair in a brand new light thanks to them.

Our happy group meandering to our next destination. We are experienced fair-goers and don't need to stop and look at every little thing. We map out our route with specific things in mind and head out. Snugglebug walked almost the entire day. He refused to ride in the stroller, which gave us a lot of room to carry stuff.

I'm still amazed to see him walk. You would think I would get over it by now. He's been walking for a year and I still find myself in complete awe of the fact that we actually made it! He looks so big walking through the fair grounds.

The highlight for the kids were very expensive bubbles and an equally expensive inflatable ball. They played with those all day. You can't see the bubbles too well in the picture but you can clearly see them jumping up and down to pop them. Well, whatever it takes to keep them happy. Derek and Jennifer were thrilled that the bubble gun ran out of bubbles just before we left the fair.

Everyone goes to the fair for a different reason. Some for the food, some for the rides, some for the ferris wheel, but we go for the side shows. The side shows aren't what they used to be with rare and odd people and animals like the wolfman. Today they are talented people and animals showing off their skills. One of our favorites are the African Acrobats. These men are at the fair every year and amaze me with their acrobatic skills.

There are other attractions as well. This year, new to the fair was a giant sandbox. It was indoors so by the afternoon we were ready to take a break and enjoy some A/C. Kenny was a character and posed for the camera. Mei Mei made a sand castle, and Snugglebug just buried his toes in the sand and watched everyone else.

Probably one of the longest running shows at the fair is Billy Roy's One Man Band. Strike the image of the man from America's Got Talent. This man really does have talent. He took a few years off and I realized the first year that we didn't see him that he is without a doubt my favorite act at the fair. He plays ten different instruments and sings (he doesn't count his voice as an instrument.) He's a delight to watch. He has more coordination in his pinky than I have in my entire clumsy body.

Other side shows included: The Bird's of the World (an awesome display of the biggest and most exquisite birds flying from the ferris wheel into an amphitheater), A High Dive act based on Pirates of the Caribbean (more than a little cheesy), a dog diving act, and pig races.

The Butter Sculpture: Another favorite and a must-see. Yes, it is ALL butter. I'm not sure who came up with the idea. It started 5 or 6 years ago and we're still amazed. The sculpture is in a refigerated case and is entirely of butter. Shhh, don't tell Paula Deene what they've done with the wonderful stuff.

The kids using up the last of the bubbles while we eat.

Our final and most important fair tradition is a family photo. In years past these photos have ended up taped to our mirror, framed on the wall, and tucked in our wallets. It's not so much that we look so great in these photos. We always take them at the end of the day, and we look hot and sunburned. It's that the photos show the thrills of the day. We can look back and see all the memories we made on that day. No make-up needed to make a perfectly memorable photo.

Back Row: (l to r) Jennifer, My sweet hubby, Snugglebug, Derek
Front Row: (l to r) Mei Mei, Kenny

Friday, October 15, 2010

Snugglebug's Big Boy Haircut

Snugglebug actually requested a hair cut. We were headed out of the mall, and he was pulling at his hair and pointing at the barber shop where we usual take him and his daddy for a hair cut. He was quite adamant that he be taken to the barber. When we went inside, we had to tell him multiple times that he couldn't walk right in. He had to wait his turn. When his turn finally came, he walked right in. The barber set the cushions in the seat and Snugglebug sat quite willingly. This is the very first time for him to sit alone in the chair. Add to that, he sat very still, never complaining, just gently brushing the hair from the arms of the chair ever so often. The barber commented that he sat more still than some adults. Everyone watching was amazed, including us. It's always a surprise when your little one suddenly grows up right before your eyes.

Snugglebug's haircut. No more mullet. You can't see my face behind the camera but I am grinning ear to ear. The length of Snugglebug's hair has been an ongoing argument since his first haircut. But, Snugglebug made the decision this time. And he loves it! He looks like a big boy!!

Tuesday, October 5, 2010

7q11.23 Duplication: A Mom's View

My sweet Snugglebug has been babbling away and is now starting to say little words like "Hi" and "Bye." It is very quiet, almost a whisper and either before the person is in view or after they have left. It's hard to explain the excitement of a whispered "bye". It is hard to explain anything regarding my child. On the outside, he looks perfectly fine. Many just assume he is quiet or extremely shy. He really isn't either. I just nod and agree because there is no way to explain it.

I'll never forget one day in the grocery store; someone else's kids were running a muck through the store, screaming, yelling, etc. Snugglebug sat quietly in the cart, helping as he always does. A very nice senior lady approached us and said, "I'm glad your child isn't like those others." I just answered simply, "thank you."

But, I digress. Life with a child with a rare genetic syndrome is interesting. Everything you had planned before the baby was born is completely negated. The adventures to the zoo, the friends in mom's groups, the swim lessons, and yes, the Spanish lessons. I'm an ultra-planner and had it all planned out.

Now, we are approaching three-years old and having to consider pre-school, which oddly enough was the original plan. But, there is a difference when you are home everyday and considering two-day a week pre-school. You're ready to get rid of them for a few hours a week. We are already on the road at least two-days a week and turning loose of him for two more is a daunting thought. We have so little time to be mom-and-son on an adventure called childhood. Our childhood adventure has been shortened by two years because of his genetic disorder and the delays that go with it. While he is progressing, he has a long way to go before he is ready for kindergarten.

Another Dup Group (our support group for 7q11.23 duplication) mom said it best when she said that our kids just need more education than the average child. We have to think about schools earlier and have to think about summer schools when they are older.

It is impossible to explain the emotions connected to sending him to pre-school. They are confusing even to me and I'm the one feeling them. I want my little boy to have a great educational experience which means giving him the head start that he needs, but selfishly I want to experience all those mommy-adventures with him and there are so many we haven't had yet.

When I voice my feelings, I am always reminded by the listener that it could be worse. I realize that and don't forget that I am blessed to have a child as healthy as he is, but it does not negate the emotions that I feel.

I cannot express the emotions when he speaks a word; I cannot express the emotions when we have to skip a playdate because of therapy or a doctor's appointment; I cannot express the emotions of sending my child to school at three when he shouldn't be leaving the house till he is five; I cannot express the emotions when I realize that his annual expenses are the equivalent to my sister's three kids all total.

So many emotions from a mom with one child; All of them churned up by the thought of sending him to preschool. We are off to therapy in a few minutes and during those two hours of therapy and the hour and a half round trip to and from, I'll try to squelch the emotions because one cannot function with such emotions. One must push them aside and focus on the moment at hand.

For me two-years, one month, and two weeks seems just like that. It hasn't flown by. To live in the moment is the only way to savor each moment, no matter how few they may be. They don't grow up near as fast as you think they do when you are experiencing every single moment. Yet, it is still never enough.

Saturday, October 2, 2010

I Samuel 14--My Commentary

I am half-way through my 3-year trek through the Bible. I am now in I Samuel and have read every chapter more than once, thus the reason that my trek is 3-years instead of 1-year. I want to absorb the scripture.

Chapter 14:6-13 has really struck a cord with me.

In chapter 14, Saul is once again battling the Philistines. This time they are winning and the Israelite troops have scattered and are hiding in caves. Saul and his advisers are pondering what to do next. Jonathan, Saul's son, decides to take matters in his own hands.

v.6: Jonathan said to his young armor-bearer, "Come, let's go over to the outpost of those uncircumcised fellows. Perhaps the Lord will act in our behalf. Nothing can hinder the Lord from saving, whether by many or by few."

Jonathan was not convinced that the Lord had left them. His faith was not shaken. While the other troops were hiding, he was pushing forward by himself. He did not wait for the leader or anyone else to start thinking the way he did. He just took up his armor and went to do the job he felt God had called him to do.

v.7-"Do all that you have in mind," his armor-bearer said. "Go ahead; I am with you heart and soul."
v.8-Jonathan said, "Come, then; we will cross over toward the men and let them see us.
v.9-If they say to us, 'Wait there until we come to you,' we will stay where we are and not go up to them.
v.10-But if they say, 'Come up to us,' we will climb up, because that will be our sign that the Lord has given them into our hands."
v.11-So both of them showed themselves to the Philistine outpost. "Look!" said the Philistines. "The Hebrews are crawling out of the holes they were hiding in."
v.12-The men of the outpost shouted to Jonathan and his armor-bearer, "Come up to us and we'll teach you a lesson." So Jonathan said to his armor-bearer, "Climb up after me; the Lord has given them into the hand of Israel."

Jonathan did not wait for a priest to tell him what to do. He laid the possibilities before himself, his armor bearer, and God. If they were to ask him to "Come" then he would know God is on their side, and they should proceed.

The Philistines did call Jonathan to come. The answer was clear. The way for them to proceed was clear. And it was all because Jonathan's faith in God was not shaken and his courage to proceed was not limited to the number of people with him.

I asked my dad, who has been studying the Bible for more years than I've been alive, why situations can't be so obvious now. Why can't we say to God if this is "a" then we will proceed?" My Dad explained that "God speaks to people where they are." He meets you. You do not have to rise to His level in order to follow him. And, yes, those situations do happen today.

Later, I realized that at times the situation is as obvious as Jonathan's. The path that seems impossible is laid out before us. The answer is clear. The way to proceed is clear. But, for it all to be clear to us, we must have an unshakable faith and the courage to step forward whether we have anyone with us or not. If we only have our armor bearer with us, we must have the courage to move forward and follow God.

Who knew faith and courage went hand-in-hand? Who knew that the son of Saul could teach us so much about following God?

Book Review: The Treasure of God's Word: Celebrating 400 Years of the King Jamaes Bible

I was looking forward to reviewing this book for Thomas Nelson and was profoundly disappointed. I expected a book with an indepth history of the King James Bible as well as examples of how the language, punctuation, and spelling have changed over the centuries. What I found is that the book is your typical topical gift edition. Choose a topic ranging from God's Love to Our Servanthood and you have a half dozen scriptures from the King James related to that topic. Interspersed is a brief history of the King James. The book is 164 pages and 16 of those pages are dedicated to the history of the beloved book. The history given can be found in a quick internet search and ten minutes of reading Wikipedia. They even mention that "pages 20 and 56 are adapted from"

The book itself has a beautiful leather cover and gilded pages. The pages have a wonderful slick feel to them giving you the feeling of having a very expensive book. At $16.99, I would say this is an expensive book for what you get. This would make a nice gift for a new baptismal candidate or perhaps a newly ordained pastor. Outside of giving it as a gift to someone, I would not voluntarily purchase this.

If this book is a celebration of 400 years of the most popular and widely read version of a Bible, it is the equivalent to a 40th birthday party being held at Chuck E. Cheese. Instead of serving Champagne at the celebration they served a light beer. It does not celebrate the 400 years of the King James Bible and is not a beneficial resource.