Wednesday July 30, 2008

Today was the first time that I heard from the neurologist.

I met some teacher friends at Melissa's house for a lunch catching up with some awesome mentors and great friends I have met while teaching at Apollo. Again, I mention Melissa, because we really don't socialize on a casual basis, however she is a fine Christian woman who always seems to be there in very important times in my life.

For some reason I find that ironic. I am unsure why i feel that's ironic, or why she has been there at the most trying times of my life. Maybe because of her great Christian faith and I know she is praying for our peace and for Jake's recovery.

Anyway, we were all sitting at the table enjoying a yummy meal and the phone rang. How rude of me to have the phone at the table,but I knew I was expecting this call.

It still seems so weird to hear the words that came out of my mouth, but I excused myself by saying, "sorry, Jake started having seizures, so hopefully this is his neurologist."

What? Did I just say that? my son just started having seizures?

I remember the wide eyed looks at the table, as if I just said my mom died. When I came back to the table, i felt as if surely there was an elephant in the room.

However, I dismissed Jake's seizures as nothing at the time, so the elephant really didn't bother me one bit. He and Addison were at school, so Jennie and I went to catch up some more.

We got an appointment set up for Monday August 4th...almost a week away.


God Bless~Christine

if today....

was a year ago, I would be rushing Jake into the pediatricians office.

I described on the phone what I was worried about and they thankfully got me in in a matter of hours.

The ped. was concerned enough, to have her office call and try get Jake a nuero appt. ASAP.

ASAP, apparently meant whenever they got a chance to look at the books.

It was several days before I heard anything about an appt.

This should have been my first sign!

God Bless~ Christine

soo annoyed?

I had no other title for this, other than I bet you are all so annoyed that the previous titles have to do with a year ago.

this one does too.

Sooo...a year ago today my sister in law and I , took my mother out for her birthday to see Mama Mia and then to Neiman's for their awesome food, specifically their popovers! yummo!. While there we saw an amazing woman that I shared a classroom with my first year of teaching, have come to be great friends with and even randomly saw her at a friends funeral the the other day. I think Melissa was placed in my world for a reason. I am not quite sure yet exactly why, other than her being an amazing person, but the way I run into her in random parts of my life and met her is astounding!

Her and her husband write amazing books by the way. I give them for most baby and wedding showers...check them out!
http://www.amazon.com/s/?ie=UTF8&keywords=harry+h+harrison&tag=googhydr-20&index=stripbooks&hvadid=1149735341&ref=pd_sl_8598lr5wl2_b
(I apologize for putting the amazon site up, but thats I really all I know how to do. you will not be disappointed if you buy these books either!)

Anyway, so we go see mama mia, have an awesome meal at neimans.
I go out to my car and notice a flat tire. Not the kind of flat like I can drive, but really flat, like I need help pronto!

is this a sign?

So I rescue Matt from the twerps, as I believe, he had a golf date, and my wonderful father goes with me to fix the car, as my mom watches Addi and Jake.

All this time, I am feeling uneasy.

Besides the fact I never get flat tires, and Jake has had weird "episodes" the past few days...I feel a "storm coming on." I don't know how to explain it, but I really did.

We got the car fixed. Picked up the kids and went back home.
I tell Matt, please rock Jake and let me know if you see anything strange.
He rocks , maybe 2 minutes and I hear "Christine, come here!"

"yes?" while running into Jake's "cowboy room."

"he did it!"

"he did what?"

"what are you talking about"

"he totally straightened up, was stiff and shook"

This was only a few seconds, but completely foreshadowed our life to come in the next week or two, if not the next year.

Wait on the LORD: be of good courage, and he shall strengthen thine heart: wait, I say, on the LORD.(Psalm 27:14)

God Bless~ Christine

There really is a reason for the car story, Melissa and Mama Mia.....more to come;)

board games

A year ago yesterday, I noticed Jake's second seizure.

Matt was out of town. The kids and I spent a full day swimming, so we decided to have a nice relaxing evening playing some board games and watching movies.

Addison and I were on the floor, when Jake got up to do a "happy dance," or something of that sort for making a winning move in the game.

As he stood up he almost immediately fell tummy down on the board game, flopped for a brief second and then was up.

Again, my first reaction was to get angry with him for ruining our game setup.

I , again, started to interrogate Jake about his actions....

That's when i saw "it."

That look in his eyes.
He had no clue what had just happened and he was just as confused and dumbfounded as me.

This time, however, I did find it strange enough to call my mom and see what her thoughts were.

Since Matt was coming home the next day I didn't call him, but just decided to watch Jake and monitor him for anymore strange events.

A year ago today....

Jake had his first bloody lip from the BEAST.

He was sitting at the kitchen table eating a happy meal from "Uncle Donalds."

I was right next to him, probably swiping some fries, when it happened.

In a quick instant his head jerked straight forward into the table.

When he looked at me with accusing eyes, as if I had slammed his tiny face into the furniture, his poor little nose and lips were covered in blood.

This was the first of many bloody events caused by this damn beast. If I only knew then would would transpire over the next year.

For a righteous man falls seven times, and rises again. [Proverbs 24:16].

God bless~ Christine

a year ago..

today, is the day I noticed Jake's first seizure. Hindsight, I believe he had some before this day, but today was the first time I saw one staring me right in the eyes.

I took the kids to Costco, to find some retreat from the Texas summer heat. We did this about once a week. Most of the time we would not even buy anything, just take in the awesome things they had to offer and maybe even snack on all the samples for lunch.

Jake and Addison had just received an orange smoothie sample. We then made our way to the book aisle so the twerps could look at all the wonderful reads out there.

Right as we pulled next to the first selection, it happened.

Jake's arms flew back and his smoothie went flying.

It was certainly a brief second in time. A brief second that would transform the way we live and most certainly the way we interpret life.

My first instinct was to get angry at Jake for flinging his smoothie and almost hitting the pristine books waiting to be purchased.

Then I saw the look in his eyes.

I interrogated him for awhile.

I asked him "what happened?"

"Jake, did you do that on purpose?"

"why would you do that, that's naughty."

The kid was dumbfounded and his eyes told me the truth.

He had no clue what had just happened!

I quickly took the kids home and didn't tell anyone what happened, not even Matt. I dismissed it as nothing.

Nothing, however that "nothing" set a bad taste in my mouth for Costco and I believe it was not until maybe 3 months ago that I got the courage up to set foot back in that mega supermarket!

Hindsight, i think there was another incident a couple days earlier.

I was at Lifetime, getting my workout on with Abrea and Ms. Sarah. Then it came.

The dreaded teenager entered the studio. Dreaded, because everyone in the room knew somet unexpecting parent was going to have to cut their workout short, as their child either needed a diaper change, is crying, or got hurt.

It had been almost 2 years since I was the victim of the "call" and had to make the trip down the stairs to pick up my child, so I was smiling to myself waiting to see the poor soul who had to miss burning those extra calories.

Here she came...headed straight to me!
NOOOO... I only need about 15 more minutes!

I get down to the childcare center and there is Jake full of blood.
I ask another teen, what could have happened and I saw it.

That teens eyes were as big as saucers. Just like I would see in Jake a couple days later.

It did not hit me until mid September or November that this incident was most likely a drop seizure.

I will never forget the look in that lads eyes. The same exact look Jake gave me in Costco.

I still have yet to be back to the gym.

The Lord is my rock, and my fortress, and my deliverer; my God, my strength, in whom I will trust; my buckler, and the horn of my salvation, and my high tower. (Psalm 18:1)

God Bless~ Christine

tears

I laid down with sweet Jake tonight and this is what he said to me , as he wrapped his small arms around me:

"Mommy, I prayed real hard tonight. I prayed that these stupid seizures would leave my head."

"I asked him for no more pokes, and no more rides in the ambulance."

"I don't like to see you cry mommy, why can't these seizures leave me alone."

"I don't want to go to the hospital again, mommy...will I have to go again?"

As a mother this is heartbreaking! Why can't I help my son ?

I fear "they " are coming back.

I have been extra anal asking Matt and my mom what they notice in Jake. They reassure me, he still seems great. I am not so sure. His words tonight make me feel as if he feels something coming on.

God Bless~ Christine

wow!

I can't believe where we have been and where we are now! the following pictures don't even slightly capture the extreme, as this has all happened in the past couple months. And this is when it, the seizures, haves been "good."

This is Jake before steroids and during over a week hospital stay. Approx. a week before his 4th his birthday.

Jake on steroids.
and Jake now.

Wow, it is amazing how life changes right before your eyes and you don't even notice, as you are too caught up in "everything else" that is not as important as the things that really matter!

God Bless~Christine

It has been over 20 years

...that I have been attending Kaboom Town in Addison on the 3rd of July. When we moved here almost 26 years ago, my family and I always headed down the road a stretch to watch the magnificent show. Then as we grew older, we would go with our friends. Matt and I started going together when we began courting over 15 years ago.

We have now made the tradition of taking our new family.

Addison, Jake, Matt and I usually head over with a picnic dinner and save many spots while we wait for friends and family to join us. It is always a great time and through the years our "camp site" is ever expanding.

Then August 1st happened of last year. Many things have changed since then. One of them being the limits we are willing to push Jake to.

The Texas heat is well above 100 lately. Heat is a trigger for Jake.

Jake has been going to bed around 7:30 or 8:00, right after he has his medicines.

Fireworks don't start until 9:30.

Matt I and thought it was in Jake's best interest to sit this year out of the Kaboom Town festivities.

Papa came and got Addison so she wouldn't have to miss the wonders in the sky. They arranged to meet up with the usual crowd that greets us there and Papa would deliver her back afterwards.

Meanwhile, Matt and I hit the fireworks stand for Jakers. He knew it was that time of year to honor our soldiers fighting for our freedom, parades, swimming, food and fireworks.

We loaded Jake up with "poppers", food, and fun.

And just as expected, the kid hit the hay before 8:00.

Although, this year was a change, change is not always bad. Jake had a great time with us and we felt much less anxiety than we would have, having him push his limits in the Texas heat and long night.

We surely would have loved to have Addi with us as well, but are very fortunate to be blessed with a close knit group of family of friends that also take into consideration her need for normalcy.

Here are some pictures of our much fun filled July 4th weekend.

I do wish things could have been different and more like they were last year.

However viewing these pictures today and staring at the screen expecting the blue helmet to be back on his head, I am Thankful.

I am thankful that blue helmet is tucked away inside his closet, at least for now.

I am so thankful for how far we have come.

I am so thankful for our support system.

And I am so thankful for the many "good things" that this beast has brought us!

It has brought us an understanding, a thankfulness for each day, and a MUCH better appreciation of what is important in day to day life!

"If you concentrate on finding whatever is good in every situation, you will discover that your life will suddenly be filled with gratitude, a feeling that nurtures the soul."~ Rabbi Harold Kushner ~

God Bless~ Christine

By the way don't forget about Erin Leyden at the AllStar game tonight!

http://www.suntimes.com/lifestyles/health/1663008,CST-NWS-epilepsy13.article

Wish?

I am awful and have the best intentions to blog our life happenings more often. I certainly thought summer was going to give me more time, apparently that proves very wrong.

We recently went on a short trip to Hot Springs, Arkansas. It was fantastic. It was busy. It was non-stop. And it was too short. It was GREAT times!


My good friend and her dear husband asked us to join them for a Lake weekend at Lake Hamilton. It is such a gorgeous place. We had NO idea a lake could be such a beautiful community.

This weekend was truly therapy. Joanna and Morgan were the most awesome host and hostess. There was never a dull moment. My checks and stomach truly hurt still from all the laughter that was had during this weekend.

We swam, we skied, we talked, we cried, we laughed and we RELAXED. I tell you, therapy.

Jake and Addison loved going tubing. They begged Morgan to take them again and again and he so graciously obliged. The kids even went water skiing!

Yes, our 5 year old and 4 year old went water skiing!!

Addison went the first day and got up like a champ. However, her mother, holding the other end of the rope, panicked and let go before she could have a good ride.

Joanna, had the honors of holding the rope for Jake. The stud got up and went almost 200 yards on his first try!!

The kiddos got to drive a boat.

and definitely wore themselves out!

Although the weekend was outstanding, there were also setbacks. Some I can not mention, but continue to pray about. Others for Jake.

Jake did have several tc's this weekend. It is hard to tell why, as he did get regular sleep and we did make sure he was in a cozy bed for all his naps. It was hard, sad, and discouraging. However, seeing that little boy, who a couple months ago could not hold his head up, walk a straight line, talk without slurring his speech, water ski...was nothing less than amazing!! he even had an audience on the lake watching jr. attack the wake!

Our kids rock and give us motivation to conquer each day.

We are sooo grateful and thankful for this weekend. Words can never explain to Joanna and Morgan what it meant to us. This was truly our wish come true.

Monday morning, recovering from the fully eventful, non-stop weekend, my cell phone rang pretty early. This is strange, as everyone knows I love my peaceful coffee time in the morn, while the kids either sleep or watch cartoons.

Hesitantly, I answer the call. The voice on the other end informed me that they were from the "Make a Wish" foundation.

Jake is going to be granted a wish!

I swear the Lake Hamilton weekend, to us, was a dream or wish come true, and to hear the words coming on the other end of the receiver that Jake was to be granted a wish were truly outstanding.

It is ridiculous, embarrassing, and amazing that this call even came to us.

Who in their life, would ever think their kid would ever qualify for make a Wish, much less be granted a wish.

Nothing ever happens "to you." That's what I have always thought. It's always "someone else" or a friend of a friend. I honestly still can't believe I write a blog about my son. It's not supposed to happen to "you."

We are better people for what we were given. It is not easy. However, we see the joy in the little things, that we used to not even merely see.

Thank you Butler's for an amazing weekend.

Thank you Make a wish for making Jake's dreams come true!

God is amazing!

rooted and built up in him, strengthened in faith as you were taught, and overflowing with thankfulness.

Colossians 2:7

God Bless~ Christine