Full Circle...

Sometimes when I take a moment to stop and think about how far we have come in the past year it is so very hard to believe. Last August, we were a week out from Gabe's drain trial. Those were really dark months. Literally and figuratively. Gabe's intracranial pressure was so high that he could not stand light. We could not go out side, we could not have the curtains open down stairs for any length of time. The TV had to be on low, and the girls had to be quite because any increase in noise put Gabe over the top with pain. I am not sure how many time I called Rachel to just talk me off the ledge. Rachel was just under 2 years out from Decompression and Shunt surgeries. Everyone else I had spoke to had older children and it was good to talk to someone who had a younger child go through this.

I remember when I emailed/text messaged Rachel and told her that they wanted to do a drain trial and what the hell did that entail she responded, "Oh, this is a phone call". LOL She called me and we talked. She talked me through the entire process and while it helped to know what was going to happen, I was just in a bad place. I do not know how to describe it. It would be a cross between being in a horror movie, riding a horrible roller coaster and being so depressed that you just want to lie in bed and never get up. That might just scratch the surface. It was really hard to even cope with the days. Everyone else was getting their 5 year olds ready for school and I am getting my child ready for ANOTHER surgery. My friends were discussing football, soccer and all types of sports that Gabe could no longer play. I had nothing to offer. A little piece of me was dying inside knowing that Gabe could never do those things again. I got so tired of explaining what was going on with Gabe, no one could seem to grasp the complexity of the nature of his issues or that surgery or a shunt were not complete fixes.

Every morning I would wake up (after my brief amount of sleep since Gabe did not sleep) and I would be full of hope that that morning the Diamox would miraculously work and he would not need the drain trial or shunt. Now that feeling was shot down within the first 60 minutes that Gabe was up, and I would crash. Every time I would crash and realize that we needed the drain trial and we were going to need a shunt it was further and further down into the darkness.

The day of the drain trial was rock bottom. I cannot even begin to put into words how badly I felt, how scared I was , how mad that was, how absolutely terrified I was. If the windows in the hallway outside of the surgery waiting room opened, I honestly probably would have flung myself out the window onto Maryland Ave. S.E.R.I.O.U.S.L.Y.

I can say that I am not the only person that the drain trial caused to push over the edge. During Riley's drain trial he ended up developing a potential infection in his CSF. (Staph in the CFS=Nasty Meningitis) He was leaking and Rachel had to lie in that bed with him. The resident tried 3 times to "seal" his leak but it did not work then the resident stopped answering his pages. Finally by morning with a little guy who did not sleep due to everything going on, a new resident came in to do rounds and Rachel lost it with him. He finally looked at her and said, "Mrs. J, I think that you need to take a vacation to the RMH." Now I know that will get some up in arms, but to know the resident who said that makes me laugh hysterically and to know that the resident was able to identify that Mom needed a break was a good thing. (On a side note Riley did not have an infection =) )So it is something about the drain trial that causes mom's to go crazy. LOL

In February I met an awesome mom (Kristen) who was just starting this journey with her son (Nic). They traveled all the way from Oklahoma to see the Great and Powerful Frim. I also met a mom (Cindy) whose daughter (Riley C) was post decompression staying at the RMH until her post op clearing her to drive back to Wisconsin (The Mosquito State-and yes Cindy can appreciate that as she was at camp). They had the unfortunate experience of meeting another veteran mom who likes people to feel that her child is the most sick and complex patient that The Great and Powerful has. I am not sure how many times I said, "Gabe and XXXX are not the norms."

The next morning Kristen and Nic had to be at the hospital early for his MRI and I had to go later. Since when we left they were not back at the house I stopped in Radiology to see how they were doing. Kristen was sitting there, thumbing through a magazine looking quite worried. I remember thinking do I look like that when Gabe has procedures? So I sat with her and killed time until they called her back since Nic was in recovery and I had to go to the OR holding with Gabe.

I was able to meet up with Kristen and Nic a few more times and we developed a friendship. During Nic's recovery he developed issues and they told her they wanted to do an MRI and LP when she came for her post op visit. They thought he had high pressure. I was honest with Kristen and told her I would be surprised if they told her he did NOT have high pressure based on his symptoms. The day he had his MRI and LP she called me. I remember the urgency and fear in her voice. "His pressure is 31.5" It was a cross between a statement and a question.

While she has tried the meds, I have text messaged her or emailed her. I have called her. The other day she text messaged me and said they wanted to schedule Nic for a drain trial. What was that going to entail. I text messaged her back, "That is a phone call. I will sprain my thumbs text messaging all that".

That is when it hit. We have come full circle. We are no longer the new parents on the block. Our "block" has a new family. I am so sad that Kristen, Nic and the family are part of this "fun and exciting group of kids" but I am grateful that I got to meet them. Please keep Kristen and Nic in your thoughts and prayers as they plan for their trip to Chicago for the Drain Trial on Sept 3.

Kristen, I know where you are now and I promise you that you will eventually look back and it won't be quite so bad as where you are now. Many hugs my friend!

HWKM.......

Let me preface this by saying that Tuesday sometime around 3am our house was hit by lightening. Our irrigation system control panel was completely fried and burnt inside. The power cord was blown apart, the GFCI that it was plugged into was burned, our garage door opener was fried, our house alarm was fried, a ceiling fan, 8 light bulbs blown, our cable line was melted into the port and barely attached to the house, the splitter attached to the main cable line was blown and we think that was it. So we have been replacing things out of our pocket as it will be less than paying our deductible and turning it into our home owners. We are slightly concerned that since my insurance company just settled with a girl who was suing me due to an accident that I was sort of in (LONG STORY) we are afraid that we might be canceled. I will say this much about the accident. My car never touched theirs. She was the passenger and she sued ME and not the driver of the other car. (STUPID)

However, since my ceiling fan in my bedroom was already messed up we decided to go ahead and replace that one while replacing the one in the living room. Of course we have 2 in our living room and if you replace one you have to replace the other. So, we purchased 3 ceiling fans w/ light kits.

He who knows more than everyone else starts taking down the old fan, and starts assembling the new one. I say, "Honey do you think that you should read the directions?" He who knows more says, "Nope, I got it under control." I just shake my head and walk away to start dinner. The directions says 2 hours to assemble.

He gets the fan to be mounted to the ceiling and realizes that the old mounting thing wont work so he has to UNWIRE everything and take it down to replace the black mounting thing. So, he replaced the black thingy, rewires the fan, mounts it to the ceiling. By this time he only has to attach the fan blades. However, HE WHO KNOWS MORE had already installed the light kit. So HE WHO KNOWS MORE has to remove the light kit and attach the fan blades and re install the light kit. By now, SHE WHO TOLD HIM TO READ THE DIRECTIONS was PISSED and decided to start dinner with out him. What SHOULD have taken HE WHO KNOWS MORE 90 minutes took just a smidge UNDER 180 minutes.

However I love my new fan and lights.

Today, HE WHO KNOWS MORE was mowing the grass before work when the mower ran out of gas. HE WHO KNOWS MORE needed to go get gasoline. So he goes. He comes back and tells me, "The mower won't start I have the battery attached to the charger". Me "Okay". He decided to go work on the pool. Because of all this rain we needed to drain the pool since the water was up to the edge of the liner. So, HE WHO KNOWS MORE works on the pool. My mom stops by and we have lunch. I am telling my mom (aka 20+ years of hardware store knowledge) that the mower is not working no matter how long we have it attached to charger. I then bruide HE WHO KNOWS MORE ego when I ask him, "Do we know for a fact that the outlet you have it plugged into did not sustain damage during the storm". HE WHO KNOWS MORE has to be snippy and say, "Well YEAH! You touch the 2 things together and they spark". WHOA OKAY BUDDY...JUST TROUBLE SHOOTING. So, I tell HE WHO KNOWS MORE to take the battery out and I will go buy a new one since our yard looks like an over grown field. So HE WHO KNOWS MORE goes out side and I can hear him taking everything apart and then I hear "DAMMIT!!!" Well HE WHO KNOWS MORE left the friggin' mower deck in ENGAGE. HENCE WHY the mower WILL NOT START. So HE WHO KNOWS MORE put everything back and now gets to go to work while *I* mow.

Love you Buddy,
Remember all those nice things I said about you the other day???

I.TAKE.THEM.BACK! ;)

SURPRISE!!!!!

My Sister, Becca, turned 31 this year. For YEARS (and I AM NOT exaggerating) we have heard all about her "GOLDEN BIRTHDAY". You know the year you turn the same age as your date of birth. This year Becca turned 31.

Her husband, Tom, asked my mom and I to organize a surprise party for her. So we picked the date and we ran with it. Tom only got information on a Need to Know basis as he has a hard time keeping a secret.

It is no secret in the family, my sister is a baker. I have relinquisted control at birthdays and have allowed her to make the cakes for my kids birthdays. Becca HATES store bought cake and I was starting to get a little stressed about the thought of making her cake. You know, my ego was on the line here because if the little shit made one comment about my cake I would probably throw her ass into my mother's pool.

While I was telling Darren my concerns he said to me, "Why don't you order a cake from her?" I thought for a bit...I could make this work. I decided to ring my sister and the conversation went like this.

Me: Hi Becca! What are you going Saturday?

Becca: Nothing

Me: Can you make a cake for my friend Brandi?

Becca: Sure! Let me get my notebook.

Me: She want enough cake to feed 75-80 people. Banana and white cake. (Banana is Becca's favorite cake) Frosted in plain white with gold ribbon around the edge. She has an image and decorations that she is going to put on it so there is no need to write anything on the cake.

Becca: Are you sure?

Me: I am very sure.

And that was the start of the deception. I called my mom and told her what I did and we LAUGHED our asses off. The next morning Becca calls me...

Becca: Do you think that Brandi would want 1/2 banana sheet cake and the rest as cup cakes?

Me: I dunno. Let me call her and get back to you.

I hang up with Becca and call my mom. Tell her what is going on and we decide on Banana cake and cup cakes. I call Becca back.

Me: Hi Hon! The banana cake and white cup cakes are a great idea. Brandi said she has hard sugar candies that she will put on them.

Becca: What is the theme?

Me: Oh Mickey Mouse.

Becca: Are you sure that I can't....

Me: No Becca. Brandi has control issues like us. She was a kindy teacher.

Becca: Okay that is easy enough. When will she drop off the cake.

Me: She is going to drive down on Saturday afternoon to pick up the cake. So if you can have it at my house by 3 that would be great.

And that is the way it started. Now it was a great source of amusement because it was really irritating to my sister to have to decorate a pretty plain cake and she much have complained to my mom 10 times about this "boring and plain" cake. My mom (surprisingly enough) was able to keep a straight face about the cake and just let her vent while almost pissing her pants in hysterical laughter AFTER my sister left.

Saturday Becca dropped off the cake and it had gold edible sprinkles on it and the cup cakes, ect. She did not linger. THANK GOD since I had a ton of work to do and she went on her Merry way. I finished decorating her cake and headed over to my moms house to set up.

After she and Tom arrived she was SURPRISED. She was quite surprised when she looked at Tom and said, "OH MY GOD! Did that Bitch have me make my own cake??!!!" Tom could not lie and told her yes! It was PRICELESS!!!

So Becca...Happy GOLDEN BIRTHDAY Lil' Sis! I hope you enjoyed your party and I hope you liked your cake. I heard the lady who baked it for you is a real perfectionist. I love you!!!!

The Brickyard 2008

Gas to fill up the truck to go to the Brickyard $105.00

Parking at the Brickyard
$20.00

Entrance to Chevy Day
$30.00

Your Son's face when he meets Jeff Burton....

PRICELESS!!!!