The Angel, Part 1

Fourteen years ago November 24th, I gave birth to Gabriel via emergency C-section following nearly 48 hours of labor. It wasn't a miserable screaming 48 hours. The first 36 hours were spent at home. The next 12 hours were at the hospital resting comfortably, including the final 6 hours being tame enough to allow me to sleep, save for the occasional interruption by nurses checking my progress.

It just so happened that the day of Gabe's birth was also Thanksgiving. When the nurses changed shifts at 7am, my new nurse was concerned that Gabe's heart rate was decelerating frequently, so she paged my doctor who immediately ordered an ultrasound and called for the Cesarean. When Gabe was born at 9am that day, the doctor discovered the reason for the heart decel - the cord was wrapped very tightly around Gabe's neck several times. Dr. T told us that Gabe would have never survived natural childbirth. I spent that Thanksgiving under the influence of narcotics instead of tryptophan, being ever so grateful for a wise physician.

Following his birth, he seemed perfectly healthy. Other than frequent projectile vomiting after eating, it didn't appear that he was anything other than a typical infant boy. As time progressed, though, we began to notice that he might not be reaching his developmental milestones as quickly as our first two boys had reached theirs. Gabe was not feeding himself. He was not sitting up alone. He was not standing alone. He was not holding toys well. He was not talking at all. He was content to lay on the floor or be held. And he was always happy. Always smiling and laughing. A very happy little boy. By the time Gabe was nine or ten months old, it was obvious that he wasn't progressing at the rate he should have been, so our family doctor referred him to a child neurologist.

We had absolutely no clue just how much maturity we would experience during the next few years!

We visited doctors in Toledo, Ann Arbor and Cleveland. We scheduled appointments for therapies and early intervention. We became proficient at rattling off medical terms and diagnostic tests. We formed friendships with hospital personnel while they explained Durable Medical Equipment and insurance policies.

While the demands of Gabe's schedule were sometimes stressful, we felt like we were in pretty good control of our situation. That changed when he was two and a half. Two weeks before I gave birth to Savannah, Gabe began having seizures. These were no minor little things - it meant ambulance rides, calls from our doctors to bigger hospitals discussing possibilities of Life Flight, massive amounts of anti-convulsants being pumped into his uncontrollable body, and panic. The first night in the hospital, his seizures were so bad and his heart was working so hard that the doctor called for the crash cart to be brought into the room. We were scared to death that we would lose Gabe.

That first episode of seizure activity finally resolved, and after several days, Gabe was released from the hospital with a new diagnosis - Epilepsy. We still had no idea WHY he had epilepsy. It would be another 9 months before there was even a small clue about what was going on with him.

Over the next several months, Gabe became a regular at our local hospital. Every pediatric and ER nurse knew Gabe well. They knew what his favorite blankie looked like. They knew what he liked to eat. Every time he'd catch a cold, we'd worry that his fever would send him back to the hospital with seizures. Often, it did. We learned all kinds of interesting facts about anti-convulsant therapy. We religiously stuck to his medicine schedule. We read books and researched on the Internet. We suggested different drug possibilities to the doctors, and presented questions about symptoms of various diseases he could have. We knew which lab technicians were skilled. We spent a lot of time looking at hospital linen and sleeping in uncomfortable recliners.

When Gabe was three and a half, his Cleveland doctors decided to try to videotape him for 48 hours with EEG monitors on his head, so they could get a clearer picture of what type of seizures he was having. They said that a possible diet change might help control his seizures. So off we went to the Clinic, to try and keep Gabe occupied for two straight days of wires all over his body. As a precaution, they said, there was some blood work they wanted to perform to "rule out" any metabolic disorders that could worsen if they tried this diet routine we'd been discussing.

A few days after being discharged, (with no noticeable seizure activity during the stay, I should point out!) the phone rang with the news that doing this precautionary lab work proved to be very helpful, as it looked like Gabe might actually HAVE a metabolic disorder! Of course these results meant the diet changes we had been pondering would have to be nixed, but with other diet changes, IF these results were correct, Gabe might actually be able to have a normal life. We had to go back to the Clinic for further testing.

While the tests showed the doctors many different metabolic disorders that Gabe DIDN'T have, they could not pinpoint exactly which one he DID have. They decided to have us start him on the modified diet anyway, and see how it went. After consulting with the nutritionist, we began feeding Gabe a strict regimen of fruits, vegetables and very limited protein, with absolutely no meats.

Within 5 days, his seizures STOPPED completely! For several months, he was seizure free. We began to think that maybe he'd be able to stop his medications. We had tried many different combinations of drugs, and nothing had controlled the seizures nearly as good as the diet was doing.

Over the next couple of years, Gabe made lots of progress in his gross motor skills. We had to keep him on medication, because when he would be sick for any reason, he would have breakthrough seizures. By the time he was six, we had found the right medications in the right combinations that worked quite well.

Shortly after he turned six, we were visiting the Clinic for a regular followup. His neurologist happened to have hired a new nurse. Upon seeing Gabe for the first time, her reaction was to say "Has he ever been tested for Angelman Syndrome?"

Apparently not - we'd never heard of it. We consented to having more blood drawn, and went home full of questions. We knew it would be a few weeks before we heard of the results, so we had plenty of time to do our own research.

After reading just the basics of what Angelman Syndrome is, we knew what the phone call was going to tell us. We were not surprised in the least when the nurse said "The tests came back positive. Gabe does have Angelman Syndrome."

As Gabe's mom, this changed my outlook. When I thought Gabe just had a metabolic disorder, my hope was that he would "catch up" and "be normal". He could someday play ball with his brothers. He would ride a bike. He would drive a car. He would get married and have children.

Facing the information I had about what Angelman Syndrome involves, I knew the likelihood of most of those things ever happening is pretty slim. Naturally, the first thing I wondered was "will this affect his lifespan"? I was relieved to see that he would probably live a typical lifespan, and that his condition wouldn't deteriorate. But beyond that, what?

That "what" is always changing. I have accepted that my son will always need care and supervision. I have learned to ask for help. I have admitted that I just can't do everything for him. I have agreed to let others offer their expertise. I have allowed others to learn about him. I have realized that other people can love my son unconditionally. I have fought for him to be educated well. I have witnessed my other children show compassion and protectiveness. I have discovered friendships in hidden places because my son is an Angel.

I can not know what Gabe's future holds. I can not predict what might happen. I can not control the uncontrollable. I can not list what Gabe will someday accomplish.

I do know that Gabe is smart. I do know that he's creative. I do know that he's loved. I do know that he knows more than we think he knows...

How Much for Just a Small Bottle?

Today over at one of my favorite spots for clearing my arteries...



Does this potion make the waiting time seem shorter?

Noon. This Saturday. ABC. Be There!

I told you I was thinking about it. I did it. I waited until after the obnoxious lying political ads ceased, and I made the call.



I kindly explained that I wanted the cheapest, most basic of packages available. For a mere measly 15 bucks a month, we now have Time Warner Cable. Gabe can now enjoy quality commercials like Party in My Tummy and other motivationally-intended nonsense.



Savannah has been a bit under the weather over the past few days, so the Cable Guy showed up just in time to keep her mind from being completely bored out of it's skull while she convalesces.




We all know why the cable was really installed!




Never let it be said that people in this family can't multi-task while watching the Buckeyes!




Yes, Gabe - as a matter of fact, we DID kick Illinois' butt!




Ah, Uncle Jim! So good to see you again, even with the black smudge across the screen. I've missed you!




We teach our children at home. The important stuff, naturally!




Straight home from work, pick up the baby, plunk onto a chair - no rabbit ears required. Maybe now the neighbors can return to their delusions that we're normal.

Probably not - one of Bucky's friends told us last weekend that his mother had said to him earlier in the week..."You should tell them to take down that Ron Paul stuff from their yard."



"No, they won't. It's their revolt against the election results."

She still let him spend the weekend with us, though.

And for a fitting ending...




Bring.It.On.





(sports images courtesy of google images)

My Pinocchio Aspirations

So lately I've been thinking that I'm kinda stuck in the house a little more than I actually like. I like my family, and wouldn't trade any of them for the world. (The jury is still out on the Stupid Dog, though...)

BUT...

Every once in a while, a mother starts to wonder when she's gonna have 2 minutes alone in the bathroom. Apparently, I'm not the only mother that feels this way! A mom in THIS group used Tim Horton's restroom to confirm that she'll have even less alone time in her own!

The fact that we choose to homeschool doesn't mean we think we're superheros. Quite the contrary - some days, I think I'm a supergoof! Why would any sane mother choose to keep her teenage boys at home with her when she could send them off to have Nutritionally Balanced Meals, Positive Uplifting Morality Lessons, and Quality Social Skills-Building Time all while she relaxes peacefully at home eating bon-bons and catching up on As The Stomach Churns?

There was, and probably still is, a "Mom's Night Out" group in our area, but for various reasons, I've never been involved. I don't know many of the moms in that group, but while our children were involved in the local co-op a couple years ago (which has since been revamped and downsized considerably) I met a few of my fellow homeschooling mothers...

I. Do. Not. Fit. In.

Granted, I'm bettin' there's some other moms out there that let their kids read Harry Potter and wouldn't think I was goin' to Hell In A Handbasket if they saw the empty Corona bottle in my recycling bin, but the SuperChristianWomen with EVERY Joel and Joyce book ever written resting comfortably in their Crossings Book Club Bookbag next to their Vera Bradley-inspired Quilt-covered Bible kinda overpower reality, and it just isn't a battle I wanna pick!

One of the very first Fridays we went to co-op, I was discussing with a particular lady the fact that our two teenage boys don't share a drumset, they each have their own. She agreed I might be crazy. I mentioned that we had allowed this scenario because it would give the boys another way to irritate our very nasty neighbors, if we let them play their drums outside on our deck. This woman, having never worked at developing a mentoring relationship with me so as to be able to correct me with love while understanding that we all need to grow spiritually because this was the first time she had ever actually spoken with me!!, said "Now, Now...would Jesus act like that?"

Oh good grief!!!! Get a grip!

Does nothing ever irritate these women? I didn't say I would LET the boys do that. But trust me - I sure enough have thought about it! I've considered throwing rotten tomatoes and spoiled eggs at these neighbors myself! Doesn't mean I'd do it! I mean, we do have decency standards, not to mention noise pollution laws in our little town! I sometimes manage to control myself, if only from the sheer terror of having to spend a night in lockdown at the county jail which is located all too close to my backdoor! I can fit into polite society when forced!!

But...(and that's a bigger But than I can even begin to describe....)

Newsflash - I am a real person! I get angry! I am sarcastic! I don't always hold my tongue. (see nochurchsignsallowed dot blogspot dot com if that is in question) I just don't think I could sit through 2 hours of Which Curriculum Worked Best for Johnny and Susie, when what I want to do is confer with real women who have entertained the thought of using toilet paper in ways not intended, or real women who's children have heard them cuss (once...) because they're so mad at the world right now they could take Chuck Norris out with one hand tied behind their back, or real women who haven't Scrubbed Their Baseboards Behind the Dryer for the Glory of God in decades, or real women who can say the word "sex" without looking over their shoulder to be sure their children aren't listening, or real women who stuff themselves with brownies and don't feel one bit guilty about it, or real women who...

I am nothing if not real...

I really love Jesus -
I really like being at home with my family -
I really believe that homeschooling is what's best for my kids -
I really have really bad days sometimes that make me wonder if I have a brain at all -
I really detest when people make comments about "I just don't know how you do it!" and then don't offer help when they can see the dark circles under my eyes!
I really would like a group of friends that I fit in with, that appreciate my lifestyle enough to not say things like "I just don't know how you do it!"

Is that asking too much???

I really am a real person!

Delete This!

Why are all my blogger-related emails going to my SPAM folder?

It's irritating me! It means I actually have to glance at my SPAM folder before I delete the crappy stuff sitting there.

Mrs. Rebecca Williams is still trying to say hello - I wonder if she wants to show me pictures or send me money from her Pakistani relatives who were loaded with cash when they died recently?

eBay is still asking if I'm dumb and poor. No, and Poor Is A Frame of Mind.

I'd be in luck if I was looking for Singles. Although there haven't been offers for Church Singles lately...which leads me to wonder how those preachers are fitting all those weddings into their schedules.

My credit score changes daily, apparently. Why can't they make a non-traceable mistake and fill my checking account with a few extra thousand dollars AND improve my score?

My aspirations of being a Crime Scene Investigator must remain on hold, despite the offers for College Scholarships. Thank you, but mothering 6 children takes up the majority of my time. Any free time is spent with my husband, discussing how to escape to a private sandy white beach where children aren't allowed.

Not It!

I got tagged by Shelly.

Cool!

In elementary, I was never the first person picked for kickball, unless my best friend was a team captain. I was generally never the very last pick, which was the ultimate scourge. I was mostly somewhere in the last 1/4 of people chosen. Why? I wasn't overly athletic, at least for organized team sporting events. I'm not a competetive person, surprisingly enough - given my mouthy personality and all.

When it came time to play tag, I was nearly always the first one caught, because I didn't run fast. Besides, it was just so sweet to be caught by the boy I had a crush on. He'd buy me pixie sticks and jaw breakers - I HAD to let him catch me!

I hated being "IT". It took forever to catch anybody!

Now if I tag someone, they don't even have to run if they don't want to!

My choice:

Grandy - She's quite funny - even without her recent drug use. And she just so happens to be blogging every day this month. I can't commit like that!

Half Full

Things that make me not happy tonight -

The goats dried up. Now I have to pay 14 bucks a gallon at a store, for goat milk for the baby, instead of 5 bucks a gallon at a farm. Anybody know a goat farmer?

Grr.

Someone I know passed away this weekend. I don't like funerals.

Grr.

It's cold, and my furnace is running.

Grr.

-----------

The bright side -

At least I found out there's an alternative to baby formula!

Yeah!

At least he's not sick anymore.

Yeah!

At least we're blessed with a job so we can pay our gas bill, so the furnace can keep running.

Yeah!