Just a few funnies.....

These graphics are for Andrea as I couldnt post them in the comments of her blog. I will try to be back later though and blog more.

First one Andrea, this one is the shirt I went out in and couldnt figure out why everyone was staring at me!




**for those of you that can't quite see the shirt it reads:

"Mr. Potato Head picks his nose."

for those that know us personally, Allen stole this shirt from the INSANE T.J. I went to Walmart in this shirt at midnight one night not realizing I was wearing it. I just couldnt quite figure out why everyone was staring at me.

And my all time favorite graphic that TOTALLY describes your "worst pic ever" pic



Those of you that want to know the story behind these pics....see Andrea's blog entitled:

"What the chub part two"

Change

I have been thinking so much about all the changes that have happened in my life since Makily was born. I had no idea the ways in which my life would change that Thursday night when I laid in bed laboring and trying to give birth to this kid.

My baby girl is starting Developmental Pre-K on Wednesday.

There have been many times in the past three years of my life that I NEVER thought we would make it here. I recall the awful four weeks Makily and I spent in Shands when she was six months old. That was one of the worst times of my life and I hated every moment of living in that nightmare day in and day out. It seemed like each day was worse than the last and I thought we would never leave that place. I could tell story after story of all the terrible things that went on in that hospital for us during that time. I will spare you with just this one. Basically to add some humor to this particular entry.

So during our long four weeks stay (and while I realize that four weeks to some ISN'T that long, IT IS considering all she went in for was a leaking G-tube) we were moved around from room to room to room. Sometimes in the middle of the night. One of our moves was particularly strange. Makily was kind of in the "step down" phase...not PICU worthy but also not stable enough to just be in "no man's land"....errrr uhmmmmm I mean the regular Peds floor. So we were put in "special care step down". It's a large room with TINY cubbies for each patient. When I say tiny I MEAN TINY. There literally was enough room for Makily's crib and my sleep chair butted RIGHT UP next to it. I called it our "hole". For some strange unknown reason they had a 23 year old woman in the bed next to us. She was a psych patient. I told you we had great luck. She talked CONSTANTLY. Most of what she said I could not understand, it was alot of gibberish most times. The nurse in there apologized to me almost hourly, which was a change because usually when there were mistakes made or inconveniences you were looked at as though you were a bother....ya know "how dare you complain that your six month old is in with a 23 year old crazy lady". We couldn't sleep, I couldn't think straight. I decided one night to get a audio tape of this woman. I couldn't resist and I knew no one would ever believe me that we were SERIOUSLY put in with a 23 year old psych patient. I mean we were on the PEDIATRIC SPECIAL CARE FLOOR.

Listen closely to the chatting in the background, remember this was ALL DAY every day!



Now on the other hand there were more days there that were not humorous in any way, although I tried desperately to find humor...somewhere. So many days I sat in the PICU with Makily, tubes down her throat, in her stomach and up her nose. I can still smell the hospital tape that was all over her, the soap I used every day and the sour smell of her little hand when her IV would blow and they would unwrap it and place another. I remember vividly the frustration of trying to hold a hypotonic baby with tubes, wires, and bandages all over her without pulling anything or hurting her. It just all seemed so unreal. I kept thinking "This only happens to other people........I guess I am one of them now".



Some memories just never seem to fade to gray, these memories for me are as vivid as the day they happened.

I remember this time because it was one of my darkest with Makily. It also a huge bonding period for her and I. My motherly instincts had FINALLY seemed to kick in the night they were letting her WRITHE in pain in the bed and did nothing. I felt like a part of me had awoken and that even though I didn't know what the future was going to be like for her or I, that I would be damned if they were gonna let my baby lie in bed in agony because they were too busy or simply didn't give a darn.

So I look back at where we started, where we have been and where we are going and I am in awe.

In awe of Makily.

She is not the child I dreamed of having,
in fact she isn't even the child I wanted when she was born.

She is the child I NEEDED, the child I was destined by God to have and the child that has changed me in ways I never imagined a child could.

She is the child that has taught me how to love UNCONDITIONALLY, to look past disabilities, to see that every special needs child is truly a miracle. It's all I can do NOT to approach a mother in the store pushing her child's wheelchair. I immediately feel a connection there, an unspoken one that you can truly only know if you walk that road.

I see kids with trach's, g tubes, feeding pumps, tight muscles, scars and oxygen and I am in awe of them too. These children have a gift of showing other's what is TRULY important in life without using the spoken word. What's sad is that so many people (me included at least the "me" before Makily) can't look beyond all the medical equipment, disabilities and struggles and see what is behind all of that.



These children have the strength of Goliath and the patience of Job. I know some adults would be frustrated with the day in and day out therapies and treatments. Many would just give up. Not these children, they continue to fight to survive because to many of them, it's all they have ever known. Makily does not know that eating is supposed to be easy for her. She doesn't realize that walking should have been something she started doing EASILY over two years ago. So she continues to work hard during therapy, standing on her two now chunky legs until they begin to shake because she is trying so damn hard.

I am in awe that after all she has struggled and suffered through that she still manages to laugh and giggle at the small things. That she can go from hysterically crying from a terribly painful procedure one minute to hugging and snuggling me while smiling the next. That she wants NOTHING from ANYONE except to be loved. That's all, she just wants to be loved.

I am not sure how much more perfect her spirit could be.

Money and material things will never matter to her, she won't complain to me when she is older that she MUST have the newest Polly Pocket or that she hates me because I won't get her the cell phone she is demanding. She will always be my baby.

Although her worldly body has failed her time and time again...and most likely will continue to, Makily will always be a perfect, innocent soul. What God has given her this world cannot ruin.

And for that, I am forever grateful.

Our luck just never runs out.

*****UPDATED AT THE END WITH ANOTHER VIDEO 8-17-07 AT 6.55PM!*****

So as promised here is the entire story with names, VIDEO and details. I intend on sharing this EVERYWHERE on the internet that I can find, emailing and calling the Orlando Sentinal and Ocala Star Banner and also contacting channel 2 news. But you can read it here first blog friends.

Here is there contact information and address!
(407) 872-8559
906 W Michigan St
Orlando, FL 32805
Email: skylinemotorsgtr@yahoo.com
The owner's name is Mohammed


We needed a van.

Why?

Makily is BIG now and we had a two door Ford Explorer. It was getting harder and harder to get her in and out of the truck. Due to Allen's job he is only here a few days a week which means I do the majority of getting her in and out. We have a pediatric wheelchair and stroller, we like to bring both to use according to where or what we are doing. As many of you know we are going to start fostering soon. We are in the middle of the licensing process and so we just needed something bigger and with more doors.

We sold the Explorer for $3500. We could not afford to spend much more than that.

Allen and I didn't need anything brand new. Just something that we could get around in with lots of room, working air conditioning and that was safe and reliable.

We looked in Ocala and the only things we found were either way too high in mileage (meaning 150K or more) or totally out of our price range. We cannot afford a car payment. As long as poor Allen is working like a dog and I am staying home to care for Makily I refuse to add more pressure or work on him to afford a car payment just so I can drive something newer or better.

I was driving our Cavalier while we were looking for a van. Makily does not do well in the Cavalier because the windows are NOT tinted and the a/c ONLY works on low. It is hot here and she actually retched a few times from getting too hot in the Cavalier. We were told last year when she had that NASTY seizure that we should not let Makily get too hot, it could trigger a seizure.

I look on Autotrader.com and found a pretty good deal, it was listed with "McCoy Auto" in Orlando. It was a Pontiac Montana with about 100k miles. It was $3495. We could afford this. Makily had a neuro appt the next day and so we figured we would look at it then.

When we went to see the van I explained to the salesman that we were buying a van because we have a daughter with a wheelchair and we are going to start fostering. We needed something reliable with air. He knew our situation... very well. Allen test drove it. We liked it BUT the power locks and power windows were not working right. I was concerned about the locks for child safety reasons. There were other very minor things and when I mentioned them the salesman IMMEDIATELY said "We can fix that". So with the agreement in writing that those things would be fixed we gave the guy our $3500. He said we could pick it up in 2-3 days.

He called me a few days later and said it would be TWO weeks as they were waiting on parts. This didn't sit well with me. I had other things to worry about though, Makily's heart catheterization was coming up and so I just said fine.

My sister and I went to pick up the van on June 30, 2007. When I got there the power locks were not working. The other minor things were done but I was still upset about the locks, as it was in the contract that they would fix it. The van smelled funny too and I had been told they were going to detail and shampoo it so I wasn't happy about that. I called Allen and he said "Just take the van, we will take care of the locks later, we need to get it so you have something that isn't so hot for Makily to ride in".

I was not shy about showing that I was angry. They said that I could get the locks fixed by my mechanic and that it would cost about $30. I laughed and said "yeah right", he said well maybe $50 but that's it. He said if we had it fixed to save our receipt and he would reimburse us for it.

I still didn't feel right but I agreed anyway.

This is the last time I don't listen to my gut.

I had him put it in writing about the door locks and paid the remaining $600ish for tax, tag, title and "dealer fees" and left.

On the way home I notice the "add coolant" light came on. I told Allen when he got home the next morning. He opened up the radiator and it was full of rust (see video). I went and bought radiator flush, expensive coolant and we flushed out the whole system according to the instructions on the "flush container". I even used distilled water because the auto parts place said it was better.

The add coolant light went off and it seemed to be okay, we fixed it for less than $40 ourselves...no big deal...or so I thought.

Two days later on July 4th the power window on the driver side stopped rolling back up (also in video).

Two days after that on July 6th Makily and I were driving home at 10 pm. The "add coolant" light came on, the engine started stalling and when I looked down at the dash I saw the temperature gauge was all the way up.

The van overheated after we had owned it a total of seven days. I WAS LIVID.


Here is the video of the window problem and the radiator problem:

Make photo slide shows at www.OneTrueMedia.com

I called the car lot owner the next day and we told him EVERYTHING. He asked why I hadn't called him the day after we bought it when the "add coolant" light came on. I told him that we had flushed out the radiator ourselves, the "add coolant" light went off and it ran fine so we didn't think it was a big deal....until everything else started falling apart on it.

He said that his mechanics look over all the vehicles. I then asked him to explain the RUSTED radiator and he of course couldn't. He just kept saying "How do I know you haven't been driving it a week with no water in it".

WHAT!?!?!?!?!?!?!?


If his mechanic TRULY looked over the van, he would have found that the radiator was rusted. Rust does not buildup in a radiator like THIS in just one week. He was crazy for even suggesting that.

He also would have ensured that the van had all the appropriate fluids in it WHICH IT DIDN'T because the add coolant light came on THE DAY I BOUGHT IT! He also told me that we put the "wrong water" in the van. That GM vehicles only take "GM water" and that I just need to go to the auto parts store and ask for it. I told him I HAD gone to the auto parts store AND ASKED them and they suggested distilled. No one I have asked has ever heard of "special GM water".

I told him I wanted my money back and that he could take the van. He REFUSED to do this. I was very upset and I told him that they HAD to know about the radiator and he just kept saying "My mechanic checks over all the cars". I continually asked him if he looked in the radiator or not and he would not answer me. Finally he said "well I am sure my mechanic did".

WHATEVER.

I told him that I had MORE IMPORTANT things to deal with that I did not have time OR MONEY to run around trying to get the van fixed. I understand it's a used vehicle but we only had a week before it overheated! Obviously the problem that made it overheat was the same problem that caused the "add coolant" issue...WHICH HAPPENED WHEN I WAS DRIVING IT HOME FROM THEIR LOT!!

In the end he said to "take it to your mechanic and get receipts and we will talk".

We took it in and the mechanic and he found a leak. It was going to be about $350-500 to fix.

Makily's heart cath was coming up and so we did not have the time or money to deal with it. So we had to put water and coolant in it every time we drove it. Lovely.

We went to Orlando for Makily's heart cath. (SEE VIDEO) It was here that my parents discovered our brake lights weren't working when they were driving behind us. We had family members follow us while there just in case something else went wrong with our lemon.

Makily's Heart Cath:

Make an on-line slideshow at www.OneTrueMedia.com

After Makily's cath was all done we took it in to be fixed. In total he found three leaks that led all the way to the intake manifold. It would be over $500 to replace this. He told me he could try something to seal it with and that would save money. Luckily the "seal" worked and we have a mechanic that is HONEST and WON'T RIP US OFF! THANKS DAVE WE LOVE YOU!

I emailed the owner Mohammed last Monday 8-6 with the estimates. He never replied. I tried faxing over the estimates on Friday 8-10 and the fax number was not working. I even called them to ensure I had the right number and I did.

On Monday 8-13 I emailed, faxed and mailed the receipts to him. When I called again about the fax machine on Monday I asked whom I was speaking with. I was told it was Mohammed, which is who I have been dealing with. I reminded him of who I was and told him that I was trying to fax him the receipts and it was not working. He then claimed to have never spoken to me. I said "isnt this Mohammed?" He said "um, this is the other Mohammed". I asked how many Mohammed's worked there and he said two...umm okay maybe.

The fax did go through on Monday, I mailed the receipts certified mail with return receipt and I have yet to hear anything from them.

I realize they do not and have not intended on paying ANYTHING on the repairs of the van.

They basically ripped Allen and I off, they could care less that our child was having A HEART CATHETERIZATION during all of this. They knew we had a special needs kid, they knew our situation and they sold us a lemon anyway. I will never understand how people can do this to others and sleep at night.

Today the "add coolant" light keeps coming on and going off. Oh and the "gas" light came on although I have more than half a tank.

I wonder what else is going to happen and what will fall off of the van next!?

So I hope that this blog somehow saves someone else from buying a lemon from these CROOKS. SKYLINE MOTORS WORKS LLC aka MCCOY AUTO of Orlando Florida are liars. I found a few people on ebay that have had VERY SIMILAR experiences with these people.

Their ebay name is "skylinemotorsgtr".

DO NOT EVER BUY FROM THEM.

If they can sell us a lemon KNOWING our circumstances then they will sell ANYONE, ANYTHING for a buck.

SHAME ON YOU MOHAMMED AND EVERYONE ELSE THAT DEALT WITH US AT SKYLINE MOTOR WORKS LLC aka McCoy Auto.


*******UPDATE AT 6:55 PM 8-17-07*****

So we took Makily to Neuro in Orlando today. The van drove GREAT, not a problem at all. IN FACT when we drove up at the house, Allen said "ya know the van drove well today, hopefully all the problems with it are behind us".

NOT!

When we got out.....THIS is what we found!

Make video montages at www.OneTrueMedia.com

WHAT NEXT!?

Where are all the shopping carts?

Today I took Makily shopping. She does need new clothes right now, this child has gone through a growth spurt and has jumped into size 2T and 3T clothes. It's INSANE!

We get to K-Mart and I decide I am NOT taking Makily's stroller or Kid Kart in. It's IMPOSSIBLE to shop this way. I haven't mastered pushing a stroller/wheelchair and buggy (I sometimes refer to a shopping cart as a buggy) at the same time and I don't imagine I ever will. Makily was in a particularly good mood and WIDE awake so I figured I would just carry her into the store and have her sit in the buggy.

So, I get out her diaper bag full of all her stuff, then I get her feeding pump bag and throw them both over my shoulder. Next I get all 30 pounds of Makily out and I go into the store. Now remember we are in Florida and it's SO HOT right now and the humidity is enough to take your breath away. By the time I get in the store I am sweating.

I go to get a buggy and I was less than thrilled about what I had to choose from.

There were but three lonely, decrepit buggies.


Cart number one: Rusty....I could have cared less but it was rusted in the area Makily would be sitting and that aint gonna work.

Cart number two: Had no "seat plate" in the kid seat part. So it would have just been Makily sitting on metal...that's another BIG no go.

Cart number three: The seat belt strap is broken on both sides. Now there is an accident waiting to happen!

I stand there and wait to see if anyone is bringing a cart back...no one is coming.

So I go to the "Customer Service" desk (and I did just laugh as I typed that). I ask where the rest of the buggies are. The lady looks up from her work and says "there are some over there". I explained the above choices and told her none of those would work for me. Her response?

"Well that's all there is, the rest are being used". She then went back to her paper work.

Now I have been to K-Mart before and let me say, I have never been there when they only had three available carts to shop with. I mean MAYBE black Friday but today? No way.

I stood there for a minute wondering what to say. I came up with:

"Well ugh, how am I going to shop like this?"

She says "I don't know what to tell you ma'am".....and again goes back to her paper work.

So I say "Can ya call a manager over?"

She says "oh sure."

The manager comes and I explain the situation. She kinda looks at me like I am crazy and then looks at Makily. I am sure she was wondering why I didn't just put her down and make her walk. I abruptly said "She can't walk, so I have to have a buggy, I can't shop like this."

REMEMBER now, this entire time I am holding 30 pounds of Makily, 5 pounds of diaper bag and another 5 pounds of feeding pump and formula.

The manager then says "Oh I will get you a buggy." She goes to one of the check outs and steals a buggy from someone that was FINALLY leaving.

I just don't understand how their customer service desk just brushed me off. I think it's RIDICULOUS that in order to get a cart that my DISABLED three year old could sit in, I had to call the manager.

CUSTOMER SERVICE THESE DAYS STINKS!

On the flip side of that I had a good experience while I was there.

I had forgotten Makily's needles and syringes for her Robinul (aka slobber medication). She uses the injectable form of this for MANY reasons (right Andrea? LOL) but I just put it through the G tube. ANYWAY...I ran out of it yesterday so she didnt have her morning dose. I picked up the Robinul before I went to K-Mart. Once we got there and I FINALLY got Makily into the cart i realize I have no way to get it out of the bottle. I know that unless you have some kind of script for injectable meds most pharmacies won't sell you needles and syringes. I thought I would give it a shot though. I knew since I don't fill the script with K-Mart most likely they wouldn't sell me one. I thought I would ask anyway.

So I sheepishly go up to the pharmacist and say:

"Uhm, Hi, my daughter has a G tube and is on injectable Robinul, we just put it through the G tube. Uhm, anyway I forgot her syringes and needles and I was wondering if I showed you the med, if you could sell me one."

He was SO NICE. He smiled and said "You don't have to show me anything, I can sell you one, what size do you need." I told him and he went to find it. When he came back he fawned over how cute Makily is, handed me the needle and syringe and said "no charge ma'am...have a good day."

This made up for the shopping cart idiots.

We bought a lemon.

Well today really took the cake. There were several times I pondered stripping naked and running around the van screaming while banging a pot with a spoon.

So Allen and I bought a van a little over a month ago. We don't have a lot of money and can't afford a car payment so basically we could only afford what we got for the truck we sold.

We find a van in Orlando, test drive it the whole nine yards. There were a few things I didnt like about it. As soon as I mentioned them the salesman immediately said "we can fix that". Long story short, we agreed to buy the van under the condition that a few things were fixed. Basically the power windows and locks and a few other minor things. They told us it would take 2-3 days. I said fine we can pick it up then.

Two weeks went by before it was ready.

I was not thrilled with the length of time it took, but they said they were waiting on parts. My sister and I go to pick up the van as Allen was on the road. When I got there the power locks were not working right. There was that "tugging" in my head saying "no deal, just leave". I called Allen and we rambled back and forth. Makily's heart cath was coming up the following weekend and we basically just wanted to have a vehicle that wasnt HOT AS HADES to drive her in. I expressed my anger about the door locks and the salesman told me we could have it fixed at our own mechanic and to send them the bill they will cover it. I made sure to get this in writing and so we bought the van.

Well our fears about buying the van came true. The day after I brought it home the "add coolant" light came on. Allen checked the radiator and discovered it had rust in it....lots of rust. I actually have a video of it. ANYWAY....Allen flushed out the radiator, we added coolant and water and things seemed okay. Three days later the driver side passenger window stopped working. Two days after that it overheated on the way back to my house at 10 pm with Makily in the van.

I called the car lot and explained everything the next morning. Basically he said "how do I know you haven't been driving it for a week with no water?" So I guess they don't make it a point to make sure all their vehicles have appropriate fluids in them before they go off the lot. He claims that all their vehicles are checked out by a mechanic and I asked him how they "overlooked" the rusted out radiator. He didnt have an answer for that.

After much crying he REFUSED to take the van back (I am not surprised)but said to get an estimate on all the repairs and then we would "talk".

This was ALL THE WEEK BEFORE MAKILYS HEART CATH....like I had the time or patience to deal with ANY OF THIS.

So we took the van to get looked at. For the leaking coolant problem and to fix the brake lights that werent working (did I mention that?) it was $325 and the guy was SUPER nice and fixed it the cheapest way he knew how.

We picked the van up today and left soon after to take Makily to Orlando to see the Neurologist. We stopped about half way there to get a snack and when we did the "add coolant" light came on.

I wanted to scream.

Allen got out and the coolant was leaking like a faucet onto the pavement. When he opened the hood it was steaming and spurting water.

At this point I said many profanities. I sounded alot like a sailor and for that God I am sorry.

After about 15 minutes of Allen and I exchanging words, we decided we would have it towed back to the shop in Ocala and have my brother in law come pick us up.

I go to get Makily out of the van, as it's blazing hot and figured we would go inside to cool off, her cheeks are already getting red.

Are you ready?

I unstrap her car seat straps, and

HER SHIRT WAS DRENCHED AND HER G TUBE WAS LEAKING AGAIN.

For those of you who have been following Makily's Caringbridge Page for the last week or so know the significance of this.

I almost WENT CRAZY right then and there. I mean seriously the timing is just uncanny. Our van is blowing up half way to Orlando and now my kid's tummy is leaking like a faucet again.

SOMEONE SHOOT ME NOW.

We go inside the rest area and it's HOT in there. So my poor kid is hot as heck and finally just zonks out. Here she is:



After all was said and done, it was just another hose that needed repair. It is done and the van seems to be running okay for now.

I sent an email to the car lot with an estimate of all the repairs. We will see what they say. If they do not provide us with some kind of compensation I plan on plastering their name and how they sold us a lemon ALL OVER the internet, along with the video documentation we have and everything else.

What's sad is when we initially went to look at the van, I explained to the sales man that we had a special needs child with a wheelchair, which is why we were looking for something roomier. I told him we drive back and forth to Orlando to see her specialists. We are also going to start fostering soon and so we need something VERY safe and reliable.

So knowing this they sold us a van that has all these problems. I just don't understand how people do these things and then sleep at night.

Before you ask I searched lemon laws in Florida. Unfortunately there is ONLY a lemon law for people that buy NEW vehicles. So is you buy something used, you are basically screwed.

Stuff about me for ANDREA! LOVE YOU GIRL!

I was tagged by my friend Andrea (Luke's Mommy) to do this...here are the rules!

The Rules:1. I have to post these rules before I give you the facts.2. Each player starts with eight random facts/habits about themselves.3. People who are tagged need to write their own blog (about their eight things) and post these rules. (**if you’re a non-blogger, you can email them!)4. At the end of your blog, you need to choose eight people to get tagged and list their names.5. Don’t forget to leave them a comment telling them they’re tagged, and to read your blog.


My eight random facts and/or habits:

1. I am a terrible driver. I drive over curbs a lot to the point that Allen used to called me "curby". I have ran into my own vehicle...in my own driveway....more than once. Then yelled at Allen for it. He shouldn't have parked behind me! LOLOL I recently hit a bucket in Orlando on I-4. In my defense though it was either the bucket or another car...I chose the bucket. It tore the mirror off the passenger side of the truck (scared said passenger to death too). This was easily repaired!

2. I am not the best housekeeper. Okay, let me rephrase that. I suck at housekeeping. I am getting better in my old age (30). Once I have thoroughly cleaned something though, if you come behind me and mess it up, expect the "wrath of Trish". (at least if you live in my house...that means you Allen!)

3. I know I have mentioned this before in an older blog but I will expand on it more here. I enjoy watching TV on mute. I am not sure why, usually I like it better with the closed captioning on. It drives Allen insane. Sometimes I don't even realize I have done it until Allen says "OMG PLEASE TURN THE SOUND ON, I wanna watch TV, not read it!!"

4. My favorite time of day to go to Walmart is at midnight. There are less people there and the parking isnt so awful. It is annoying though that they are restocking and waxing the floors so you can't get to certain things. I remember in my single days going to Walmart in my pj's...(Kristy remember the phone cord computer line thingie......"i have to check your receipt ma'am!" LOL)

5. I do believe I have a flashing sign on my head that says "talk to me, tell me your life story". This happens to me a lot. A pure stranger will come up and start telling me all about their family, kids, husband, friends etc etc. Most of the time I stand there politely and listen because I have no idea what to do in that situation!

6. I leave the TV on all night. It became a habit long ago and I can't fall asleep without it most nights. I love Nick at Night and watch Roseanne, Fresh Prince and the Cosby's while I drift off to sleep. I used to watch Golden Girls EVERY NIGHT but they don't come on anymore! I love all those 80's and 90's shows.

7. I don't answer my front door for anyone unless I know them or it's the UPS or mail lady. Many reasons for this. One of which is because Makily and I are here alone at times and you never know what psycho is running around ringing door bells.

Another is I can't STAND door to door sales people. Drives me CRAZY. It irritates me that they come to my home where I am usually busy doing something, then to top that off they take up my time and force me to listen to some sales pitch for something that is overpriced and that I can't afford. I don't have the heart to slam the door in their face so I stand there and listen which aggravates me.

At one time I also had a terrible problem with a lady that was a certain religion that would NOT leave me alone. I had advised her that we were Christians and had our own home church but she would not listen. This was around the time when Makily was very little and I was VERY crazy. She always rang the bell RIGHT as I had gotten Makily to sleep and woke her up...or she came when I was in the middle of a tube feed that I had been working on for an hour. Even after explaining our circumstances she still kept coming.

8. When Allen is out of town for work, I have a hard time sleeping by myself (although when he is home he snores like a frieght train). It's gotten harder since we moved Makily into her own room. I find myself sleeping on the floor in her room more often then I sleep in my bed.

Okay God, your listening...I get it.

***WARNING THIS BLOG OOOOOZES OF SAPPINESS, READ AT YOUR OWN RISK!***


So my last blog was a bit depressing, the day after I had ANOTHER moment...but this is a happy one.

One thing I have mourned (I promise this gets happy) since Makily was diagnosed was the fact that she will not be the little ballerina I had dreamed of. I had planned that at age two, she would start ballet...that never happened for obvious reasons. I was a dancer in middle and high school. I even danced on the square in Ocala the year Allen and I got married with a Hip Hop dance group I was in with some friends (yes this is the same group that I had my most embarasing moment with). So I just assumed my dancing genes would be passed on to Makily.
I have been a member of a fertility/chat board for YEARS. The ladies there have walked me through TTC, fertility testing, pregnancy, labor, having Makily and everything that happened since then. They have cried with me, cheered with me and laughed with me through it all. So months ago I posted there about how I was in the store looking at bibs for Makily. I saw one with a pair of ballet slippers embroidered on it and it said "twinkle toes". I stared at it for a while, got teary eyed and left the store. I couldnt bring myself to buy it. The ladies from the board all sympathized and of course had such encouraging things to say. They all urged me to dance with Makily in the living room, that she would love it and that maybe one day I would see her dancing around......I have danced with her before and she never seemed to care one way or the other.

Well the morning after I posted my last blog she was in her jumperoo, I had an 80's cd playing and she was in a particularly good mood, bouncing and giggly. I took her out and sat on the couch with her on my lap making funny faces and moving her arms and legs to the music while singing. She thought this was OH SO FUN. What made it even funnier that neither her nor I had our baths that morning yet so her hair looked like a bomb went off in it...so did mine! The next song that happened to come on was "Time after time" by Cindy Lauper. I LOVED her as a kid and even dressed up as her for Halloween two years in a row (stop laughing). Anyway I got up and started slow dancing with Makily. She snuggled, laughed and gigged the whole time. She smiled the biggest grins I think I have ever seen and I just kept singing and slow dancing with her, with tears streaming down my face.

So what is God trying to tell me this time!?

YES there are things that I mourn and that Makily and I will miss out on, there are ALSO moments that I have with her when all the world disappears and it's just me and my baby, dancing in the living room. Would I have cherished that moment with Makily like I did had she not been "special"? No, at least not like I savored every snuggle and laugh that morning. I waited so long for her to enjoy dancing with me she finally did and it was wonderful.

Because I am incredibly vain (least I am honest about it) these are the only pictures I am posting from our "dance". I literally had just rolled out of the bed so I was looking scary....Makily's hair looked much like "The Frightened Family".

enjoy!

Thinking and overthinking...

Well we are home, Makily's heart cath went so well. She recovered so quickly, it was amazing. When the doctor came out and told us about the multiple holes in her atrium, my heart really dropped. When he said "Makily really needed these closed, her lungs were being flooded with blood" it made me feel so sad. I wonder what it must have felt like before the closure for her. He said most likely we will see a big change in how often Makily gets respiratory infections and pneumonia now. She does seem happier than ever so I can already see a difference. She MUST feel alot better.

I have a "book" of paperwork to fill out again for our foster licensing. We had put it on hold until after Makily's cath and since she is okay we are getting back to it. Allen and I both still have not had our physicals yet, that needs to get done soon.

I had a moment the other day. Alot of the P2P mom's I am friends with will know the kind of moment I am talking about. It was another grieving moment for time, experiences and dreams Makily and I did not get to have.

I was rocking the little girl I babysit for to sleep for her nap. It was peaceful in the room and I started thinking. I thought about how before I had Makily I dreamed of sitting in her room rocking her to sleep during that "infant stage" where they are so clingy and eat all the time. We never had that time. The first year of her life we spent doing so many different things trying to get her to sleep. She didnt want to be rocked or held or bothered, she was far from clingy. If I am being honest Allen and I half jokingly called her the "demon spawn". She was miserable for medical reasons. Some known, some not at the time. She would cry for hours on end and NOTHING we did would soothe her. We spent our days and nights going through every imaginable thing to soothe a fussy baby...when we did everything we could think of...we would start over and do it all again. It was hours of endless crying, if she was awake..she was crying. I remember times that I would have to put her in her swing and go into another room and scream into a pillow. I would pray for her to just go to sleep and stop crying. It was mind numbing.

I was so sad that first year, it's all a haze and I hate that there is such a lengthy period in my life that I was SO depressed and that we just did what we had to in order to survive. We slept in the living room for a long time, it was the only place Makily would sleep. I wish her and I would have had that bonding period right away. There are times now when I hold her and I get that feeling in my chest of pure and total awe and adoration for this child. I just wish that I would have had those feelings and that bond from the beginning with her. There is a guilt for that, that I will carry with me forever. I can't change the way things were. It is times like this that I wish I had known before she was born. Then maybe I would have had time to grieve what was never going to be. Maybe my heart would have healed up enough that I could have gotten past my own sadness and been able to focus on dealing with her. It just want the way it was meant to be though. God had a plan and it went according to what he wanted to happen.

Funny stuff...

Been a rough week so I am going to post about some funny stuff in my life....to lighten not only your mood BUT MINE TOO! :-)

My nephew Micah (4) is INSANE and he comes up with some crazy stuff. Recently I was at his house and Makily was asleep on the couch. He went up to her, looked TERRIBLY concerned and said "Princess Makily is not alive anymore". Being her mother this gave me the willies and I explained that she was okay but was just sleeping. He insisted that she was "not alive". An hour later she awoke and was watching cartoons VERY excitedly..kicking and laughing. He came up to me then and said "PRINCESS MAKILY...(making sure to spit while emphasizing the "puh" in princess) is out of control AUNTIE TRISH". So Makily went from DEAD to out of control in an hours time. AMAZING EH?!

My God daughter Cameron is the same age as Makily (3). She too comes up with quite a few strange comments. Some embarrasing.
We were recently in the parking lot at the move theatre. We were chatting before we all left to go home for the night. A Mexican man walked by wearing a red bandana tied on his head. Cameron exclaimed (and Cameron by the way is known to be tone deaf much like me...she has no idea that when she is speaking sometimes she is yelling LOL) "LOOK DADDY, THAT MAN IS WEARING A PIRATE HAT!!" I wanted to crawl under the car while hysterically laughing but I held it in. The more Cameron realized we were tickled by her statement the more she screamed it, which made us laugh more and well you get the picture.

Cameron came up to me Friday and while gently petting Makily's head said "Auntie Trish, Makily is so special, Makily is so beautiful". I shook my head and told her "yes she sure is" while choking back tears. Oh to be as innocent as a child....

My mother fell in the middle of a parking lot two weeks ago. I know you are thinking "ugh isnt this supposed to be a funny entry?" It is really.

I have mentioned in the past that the women in our family have a curse...NONE OF US CAN WALK without occasionally (okay once a monthish) throwing ourselves onto the ground. We are terribly clutzy and for some reason when one of us takes a spill usually the rest of us do the same...within weeks of each other. It's kind of eerie.

Anyway, so my mom had to pee....BAD (sorry mom) and she was RUSHING into the closest McDonald's to pee. She is walking briskly when BAM! She felt her feet fly right out from under her and she was on the ground. She just laid there at first thinking "well here I have done it again". A nice man came out and said "oh, oh dear Lord....ma'am you've lost your shoe....". YOU'VE LOST YOUR SHOE?!?! Here is my poor mother laying on the ground and this guy is worried about her shoe....THIS MAKES ME LAUGH! Anyway he offered help and of course my hard headed mother said she was fine...she got up and went to pee. I am surprised the fall didnt make her pee on herself! LOLOLOL
I told my mom I was going to get her a walker with pink tennis balls on the legs to keep her from falling. I quickly changed my mind when I realized she probably would just end up tangling herself up in the walker and injuring herself even more. Maybe football pads and a helmet would work?!?
My sister Deborah fell last night. I havent gotten all the details of her fall yet but I do know it involves the Starbucks parking lot and a much wanted Rasberry latte that ended up on the pavement!

FRAZZLED...

The last couple of days have left me so out of it.

We took Makily to Orlando yesterday to the Neuro's office for an EEG. We went early because we were looking to buy a van (in fact we bought one yesterday). When I went to get Makily out of the carseat I notice her leg is wet.....I look down and realize that the med port on her g tube had popped open and the formula has leaked all over her and the carseat.

THIS DRIVES ME INSANE FOR MANY REASONS!

One of which is because taking off the cover of the carseat to wash it IS A FLIPPING NIGHTMARE! You basically have to DISASSEMBLE the entire carseat to get it off. Then be a genius once it's washed to get it back on and assembled correctly. I have only done it once and vowed not to do it again. Well obviously with formula like this all over it, I don't have a choice. I get to wrestle with the carseat again...Oh joy.

Also I have no idea how much formula went in Makily for that feed and how much got fed to the freaking carseat. God only knows how many calories she lost for that feed. Plus I did not bring an extra outfit so I had no way of changing her clothes. I dry her off the best I can, we sign the paper work for the van. We leave there and planned to stop and get Makily something to wear on the way to Neuro. I know that the office is ON Turkey Lake Road and behind Sea World. So I tell Allen the address and where to go....we drive and drive and it's no where to be found. Nothing looks familiar. I look in my address book and I cannott find the number for the office. So I call information and they SWEAR there is no listing for the doctor I am seeking. At this point we are 15 minutes late for the appointment and I am cussing like a sailor (Lord please forgive me). FINALLY after driving up and down the road for a good 45 minutes Allen says I am just going to keep driving down Turkey Lake until I find it, of course this leaves no time to grab a new outfit for Makily so she gets to stay in formula soaked clothes. Sure enough we find the office..THERE IT WAS.....want to know WHY we got so lost?

It was my fault...yes mine...instead of being behind Sea World it is actually behind Universal Studios. I am an idiot.

I got a call to schedule Makily's ASD repair today. It is scheduled for July 13th. I am not the least bit excited about it and if I am being totally honest I have cried on and off all day since we scheduled it.
Driving home from work today I was really out of it. All I could think about was the surgery and how I wish it was all over with. I was thinking that I am going to ask for special prayer for Makily in church the Sunday before. Then I look in my rear view and there is a cop with his lights on behind me *great*. I clumsily try to find somewhere to pull over without being in the way or sitting in front of someone's house. The cop comes up to the window and says "Is there a reason why it took you so long to pull over?" I was a little dumbfounded and stuttered while clumsily saying "yeah I didnt know where to go and this was the most open area I could find, without blocking anyone's house". Then he went on to say that I should have pulled over earlier and that I only need to ensure that my car would be safe and bla bla bla bla.......he went on but I don't know what he said I kept wondering how long he had been behind me and how long I was so zoned out on thinking about Makily's surgery. I was getting annoyed because it's not like I was running from the police. Finally I cut him off and said "I wasnt sure where to go and I WOULD NEVER run from the police...my baby is in the car sir". Then he said that is not what he was suggesting. Whatever. Next he asks if I knew why I got pulled over. I answered honestly and said "no, I really don't.". He said that I had slowed down but not stopped for a stop sign two streets back. I wasnt sure where so I asked him. He told me the street number and I just said "okay". He got snippy AGAIN and said "there is no reason to argue, I have it on tape". I wasnt arguing...I just didnt know where he was talking about. I said "I didnt argue with you, if you said I did it, then I guess I did".
He walked back to his car with my drivers license. I cried while he was in his car, don't know why other than I was annoyed for being so zoned out, I made sure to wipe my face before he came back...with a $185 ticket. Lovely. I havent had a ticket in 5 years. I am gonna take the lame driving class so I don't have to pay as much and I won't get any points.

When I got home Allen called. I just started crying again and told him about the ticket, Makily's surgery date etc. He was so sweet about it and said not to worry...it's just been a bad day.

That it has.

Here we go again.....

So Makily had her appointment with the cardiologist on Monday. I was totally fine about going until I started getting ready to go and then I felt the "panic" setting in again. I cried on and off all the way there. Anxiety sucks.

So we get there and the nurse weighs Makily, does an EKG, takes her blood pressure etc etc. Makily was pretty upset because it took several tries to get her blood pressure, they started out with the cuff on her arm. She has never had it done this way so she was crying and fighting. It also made her arm turn different shades of blue. During the third try her arm was REALLY purple and she was SCREECHING so mid-way through I ripped the cuff off and said "sorry, can we PLEASE do her leg?" She got it the first try on her leg. Her little arm still has tiny bruises on it.

Then the "resident" came in. I like the medical community as a whole in Orlando but I have to admit I am still kind of irked by residents learning on my kid (thanks again Shands). She was terribly nice but this didnt help the fact that Makily was already grumpy. She did all the normal "heart doc" stuff and then we talked about Makily's history. She asked if Makily had a cleft and I said "she did but it was repaired at 18 months of age". She went to leave and then said "oops I forgot to check her mouth". They have never done that at the cardiologist's office but I didn't think too much of it at first. She tried to get a very grumpy Makily to open her mouth, Makily fought and cried....and I just kept thinking "why are we doing this part?" Eventually she gets Makily's mouth open and then she says "Oh yes, the surgeon repaired her cleft very nicely...looks good".
In the end I realize that the prying open of Makily's mouth was just to see a repaired cleft palate.....very annoying.

So the cardiologist came in and was VERY sweet. She ordered the echo and we had it done right there. It took 45 minutes and I laid on the table with Makily the whole time. She did very good and was actually happy at this point. We got her to fall asleep and the tech got some really good pictures.
I knew they were going to want to go ahead and repair the ASD's this time because she is so stable and her weight is so good. It was when the doctor came in and actually said it that I got sick to my stomach.
I could never have imagined that I would have a child that needed anything done to her heart. Although it's been three years, it's times like this that I say "is this really my life?" I don't think that way as often as I used to but truth be told, five years ago I never could have imagined I would be living this life.

On the way home I kept catching myself staring at her in the backseat of the truck. She watching Nemo, kicking her feet, cooing and laughing. The tears just kept filling my eyes. She is so happy, something as simple as a movie she has seen eight million times brings her so much joy. She has the most beautiful smile. I kept thinking "how could I go on if anything ever happened to her.....how could I NOT live this life....how could I get up every morning and live like a "normal" person again". I VIVIDLY remember when Makily was born how I LONGED to go back to being a "normal" person and living a "normal" life. Now three years later Makily has changed me and I know I wouldnt be able to live a "normal" life ever again. Of course I have all the "what if's" flying through my brain. I tried to tell myself the other day that I was being dramatic, this isnt a big deal....but then I thought about it and well it is. They are messing with my child's heart...and essentially her lungs because she is going to have to be intubated AGAIN for this. Maybe I was trying to convince myself that I shouldnt be worried....but I am.

Feeling Accomplished!

Allen and I are OFFICIALLY MAPPS certified for the STATE OF FLORIDA! WHOOOO HOOOO! I am so happy I could do a dance! We only have 4 steps to go before we are licensed as foster parents! How exciting is that?! Here are the things we need to do:

1. Homestudy number one with social worker: SCHEDULED for June 15 (this Friday!)
*basically the social worker comes over to the house and gives me a TON of paper work to fill out. I have already filled out two tons of paperwork BUT I guess they need more.

2. Home Inspection with Health Department: Will call and set up on Monday morning!
They will come out and make sure we have appropriate smoke alarms, fire extinguishers, thermometers in our freezer and fridge and other things like that. I have waited to call them because I want to make sure EVERYTHING IS PERFECT before they come. If you have one thing out of place they fail you and then have to reschedule a time to come back once you have fixed whatever it is that failed you. This draws things out longer so I want to get it done in one shot!

3. Homestudy number TWO with social worker: Allen and I both have to be present for this. She will talk to both of us together and then separate about our childhood, thoughts on parenting and the profiles we filled out on ourselves. I don't really look forward to this because I am afraid they may dig into how I dealt with Makily's diagnosis and birth. I understand they want to make sure we are emotional able to do this (and I feel I am) but going into the details of that with someone who is looking for a weak spot in me isnt something I want to do.

4. Doctors appointments: YUCK! Allen and I both have to have a form filled out by a doctor saying we are healthy enough to foster a child. Allen has been to the doctor in the last year or so for work purposes (he has to have physicals every year) but I on the other hand have shamefully NOT been to the doctor since two weeks after I gave birth to Makily. I know that's horrible but I really havent had much time to be sick myself and I don't like going to the doctor...who does really? So I will be calling to schedule all that on Monday too.

Makily's room is TOTALLY up and running now. We have all her equipment moved in there now and she is sleeping in there by herself at night like a champ! I am so proud of this kid! I do miss her sleeping right next to me and we still have the pack n play in our room. I guess part of me wants it there just in case she decides she wants to come back in my room!? I AM SO LAME! It's nice to have the video monitor though because at night when I wake up I can look at her and see she is fine. We also have her on the apnea monitor which really gives me peace of mind. I know if she has a seizure and runs into trouble breathing it will go off and alert us. It did go off last night. Allen and I darted in there so fast! Thankfully it was just a loose cable. We replaced it and it was fine the rest of the night. Hearing that alarm though is a SCARY feeling YUCK!

Here is her GORGEOUS bed...I love her room!


I ordered a crib set for the "foster baby's" room. It is Dancing Frogs. It looked neutral online when I ordered but now I am worried it's kind of boyish. I don't know. It came in the mail when I was at the store. Allen was so excited he put it all up while I was gone as a surprise. It's really cute. Here is a picture of the set.


We have Makily's old crib set so if worse comes to worse we can use that. We wanted to paint that room but I am not sure what we are doing.

Fostering has so many uncertainties to it.

Are we getting a boy or girl?
How old will the child be?
How long will they stay?
When will we have a placement?

I have grown used to uncertainty since I had Makily for obvious reasons. I do not think that I would have been able to foster before I had Makily. She has really taught me so many things about life and living. I definitly have the "jump in" attitude now. She has taught me life is too short and to not live in fear of the unknown. Some days are harder than others though...which leads me to this.

Tomorrow Makily has a follow up with her cardiologist. Her heart is enlarged on the right side and she has two holes in her atrium (ASD's 8.5 and 3.5 mm w/shunting and moderate cardiomegaly). Every year they say she will have need it repaired the next year. I am hoping they will put it off again. If not though we will deal with it. I am sure she will come through it with flying colors but heart surgery is just a scary thing no matter how you look at it.

I will try to start blogging more regularly. Andrea has been urging me too and I really should. It helps me so much to get all these things out. I know alot of people also wonder how we are and what we are doing.

Thanks for keeping up with us!

Do it anyway............

So we are more than halfway through our fostering care licensing classes. We have two more Saturdays to go and then they start the homestudy process. I am having every conflicting thought and emotion in the book. I am excited and nervous, happy and sad, part of me wants to JUMP into this headfirst and the "sensible" part of me is telling me to be careful.

I am excited to be opening my home to a baby, a child that I can open my arms to and be there safe place to fall. On the other hand I am fearful and nervous that I will totally fall in love with a child just to have it taken from me. Then again I feel like if everyone used that excuse as a reason NOT to foster, well then no one would foster except people that are in it for the money. I just think if you are into it for the money, then you are fostering for THE WRONG reasons.

I also have feelings of gulit every now and then.
Am I taking away from Makily? Am I going to be able to give her the attention she needs and deserves with another child in the house? Am I just being selfish to desparately want another child? Can I really do this?

Even with all those thoughts and feelings, I do have a sense of peace about fostering if that makes ANY sense at all. I just figure that whatever is meant to be will happen. I learned the hard way when I had Makily that NO MATTER how much you plan or how hard you try to be in control...you REALLY have NO control over your life. I guess I just have to "do it anyway" in spite of my fears.

Allen and I have decided we are going to foster babies from zero to two. We had our reasons when we started the process for that and the farther into this we get the more sure of our age group choice we are.
We feel like if we can get a child before they are two, hopefully the problems they have experienced in their lives that have landed then in foster care that they possibly will not remember those things. It will be easier to form a bond with a younger child. Makily is also a consideration. If we were to take an older child they may not be as understanding and as accepting of Makily and we would prefer that the child be able to "grow up" with Makily. It seems that the older children (meaning 4-5 and up) seem to have more extreme behaviors. It's terribly sad some of the stories we have been told about some of these children and what they have been through. While I feel for them from the depths of my heart, our first priority has to be Makily. I would never forgive myself if we brought an older child into our home that somehow abused Makily as a result of abuse THEY had been put through. This is something that happens often. We were told that some of the teens have falsely accused someone of sexual abuse to get moved to a new home, just to admit they were lying once they were moved. You can't "unring that bell" and it's just not a risk we are willing to take.

So after all those thoughts and fears have gone through my head, we are still willing to foster. I keep reminding myself that usually the things that are hardest for us reap the best rewards....Makily is my prime example of this. The first year of her life was a living hell for her and our family. I would go through it all again to see her take those first steps that I was told she would NEVER take or to see her smiling and hear that AMAZING laugh of hers.

My sister told me about this song the other day. It really rings true in my life and I think it fits this blog entry perfectly.

Anyway

Martina McBride/Brad Warren/Brett Warren (BMI)

You can spend your whole life buildin'
Somethin' from nothin'
One storm can come and blow it all away
Build it anyway

You can chase a dream
That seems so out of reach
And you know it might not ever come your way
Dream it anyway

(Chorus)
God is great, but sometimes life ain't good
When I pray it doesn't always turn out like I think it should
But I do it anyway
I do it anyway

This world's gone crazy and it's hard to believe
That tomorrow will be better than today
Believe it anyway
You can love someone with all your heart
For all the right reasons
And in a moment they can choose to walk away
Love 'em anyway

(Repeat Chorus)

You can pour your soul out singin'
A song you believe in
That tomorrow they'll forget you ever sang
Sing it anyway
Yeah sing it anyway

I sing
I dream
I love anyway

I've been published!!!!!

Hercules Fence Co. here in my town has a sign marquee. Every week they put up a joke, comment or quote. In the past there was controversy over the sign. I never really paid much attention.

A week or so ago the sign said something that INFURIATED me. It was supposed to be a joke:

"What has four wheels and flies......a dead cripple in a wheelchair".

Even if Makily was not disabled I still don't find the funny part of this. I assumed the joke meant that when a disabled person died they "flew" to Heaven. I soon found out....I was wrong. A friend of mine quickly explained that was NOT what the joke meant....

So the joke originally was:

What has four wheels and flies? A Garbage truck.

Get it?

It is a truck and has "flies" ya know flies accumulate due to the rotting trash?

Obviously I don't have to point out what his version of the joke meant. This angered me EVEN MORE and so I wrote a letter to the editor about it. I didnt think it would be published as it was lengthy and they tend to like shorter pieces for that sort of thing.

Well it came out in the paper today....the ENTIRE letter I wrote...it was published as an article rather than a letter to the editor. I am so happy to see that it was published.


Here is the letter I wrote:
I have a 3-year-old daughter named Makily. She has a rare genetic condition that causes many medical and developmental problems. She is non-verbal at this point and unable to walk. We have a wheelchair for her.

It was terribly hard to order her wheelchair and even harder to see her in it.

I realize the handicapped live fruitful but sometimes very difficult lives, facing challenges to which most people never even give a second thought.

Somehow, in this day and age, it is still acceptable to mock and make fun of them.

One thing that has been very difficult for me to accept is the fact that no matter what my child accomplishes in her life there will always be someone who makes fun of her because she is disabled - whether it be a kid on the playground or a grown businessman who is too hard-headed to admit his wrongdoing, apologize and remove his sign.

My daughter's life is hard enough. Why do we have to be reminded that she is looked at as a "cripple" to some people? Why can't I drive down the street without feeling as though I have been punched in the stomach by a man who is too uncaring and ignorant to realize how much hurt he has caused so many people.

Yes, it's just a sign. He has a right to put up whatever he pleases. But joking about the handicapped is really stepping over the line. It reminds me of the common bully on the playground in the second grade.

I recently went to Hercules Fence Co., taking Makily with me along with a letter to the owner. I knew he would not be there. He wasn't taking calls or dealing with the repercussions of his sign.

When I asked the manager to please explain to my daughter why he couldn't remove the sign, he said, "I have no control over it." When I inquired if he physically was able to take the letters down off the sign himself and, if so, why wouldn't he, his answer was, "Because I have a wife and family to take care of."

I commended him, as this is admirable to me. His first and foremost priority should be his wife and children. I find it even more appalling that it seems he has been threatened with his job if he takes the sign down.

I also wonder how quickly this manager would have put the sign up if he himself had a child with severe disabilities who was bound to a wheelchair. I am sure he wouldn't find the humor in this joke.

He expressed to me many times that it wasn't directed personally at anyone. I disagree. It is directed at anyone in a wheelchair, anyone who has been called cripple. It's the joke that you would typically hear from a kid who didn't know better, not from a business owner and grown man, not from a business that claims to be "family owned and operated." It's just not a very "family friendly" sign.

I would never buy fence from a company that poked fun at the handicapped. This sign is placed right before a high school. I am sure some of the handicapped children there have seen the sign. I am sure they really appreciated it.

I would like to ask the owner of Hercules Fence this question: If your child had been through eight surgeries, multiple bouts of respiratory distress, near-death experiences and several other medical problems, if your child did have to use a wheelchair and was severely disabled, would you have put this sign up? Would you really have made a joke about the handicapped?

I have put up a link to the story that ran in the Star-Banner on my daughter's Web page. I don't imagine those who are handicapped or love someone in a wheelchair will like his "joke."

I will pray that somehow God will send him some compassion and maybe a future sign will read "I'm sorry."

Why do we have to be reminded that she is looked at as a "cripple" to some people? Why can't I drive down the street without feeling as though I have been punched in the stomach by a man who is too uncaring and ignorant to realize how much hurt he has caused so many people.

Randomness..........

I havent blogged here for a while. At times I feel like I am still pining over the same issues and who wants to hear the same crap over and over? But then again it's my blog so I guess I can do what I want.

This time of year is pretty tough on me. Part of me feels like "you have a disabled kid get over it". Then the rational side of me realizes that it's an impossibility to get over it. Every day there is something else Makily misses out on. This isnt something that will magically go away. I will always wonder what might have been. Would she be in gymnastics now? Ballet? What would be her favorite toy? Would we be potty training? These are questions that I will forever ask, they will change over time as she gets older...but the pain of those questions will remain...always. I can tuck it away most times in the back of my mind....but it's always there....hidden behind my smile, it's there. The month of April brings back so many horrible memories. It's harder to hide those feelings because I think to myself "three years ago today I was..she was....." and since she was in the NICU all of April, it's usually not a happy thought. In fact three years ago April 9th Makily had been diagnosed 2 days prior and I was insanely depressed.

It didnt help that Makily had pneumonia for Easter this year. We spent the day in the ER comforting her. She missed her first Easter because she was in the NICU and now her 3rd because she was sick. *sigh*

All that said I can't help but ADORE this child. She doesnt know all that she is missing so she continues to smile up at me while folding her hands together making herself look even more like an angel then she already does. She has the most joyful spirit. I can be a crying mess and seeing that kid smile or "clap feet" can bring a huge grin to my face. She is so amazing.

We go to the foster care orientation next week. Still not completely sure this is the way we are gonna go but I would like to get the information on it and make a decision from there. It's exciting thinking we could have another child in this house as early as December. On the other hand I am frightened of what could happen so we will see.


Makily has her Pre-K eval Thursday. I am not terribly excited about this but I know it needs to be done. I am hoping that she will get every service available and that she will possibly get a one on one aide. I plan on volunteering at the school so I will be there alot. I intend on popping in often too, I want them to know that I will be very involved and that Makily better get the proper attention and care she deserves and NEEDS. It may be as late as August that she will even start school. We will see.

Ramblings......

So I have been doing ALOT of thinking since my last entry. Really where do we go from here?

I can honestly FINALLY say that I am "okay" if I never get to be pregnant again. It's taken me almost three years to get here. I am to the point now I just want another child. I don't really care how I get said child.

Allen and I have seriously talked about foster to adopt. While I think this is the most financially sound way to "have" another child, it's not the most emotionally safe way for obvious reasons. I actually got up the guts to call the foster care liason here in Ocala. We talked for a while and I ended up telling our situation. She said that reunification between foster children and their bio parents is about 50/50 depending on the situation. She explained that before we agreed to foster a child we would be given their ENTIRE background, reason for being "in the system" and how long they think the child will need to be in care. She also said that sometimes the parental rights are already terminated when the child is placed in foster care. We would be allowed to specify the age range we want to foster which would be birth to two years.

My reservations are of course the risk of the child being taken back. I keep trying to tell myself that I could handle it but I just don't know. I never thought I would be able to raise a disabled child either and I am doing it. I think knowing the situation that the child is in would be a small help in our decision of what child we could foster. Obviously we would only want to foster a child that had a small chance of reunification. This wouldnt guarantee anything but it would give us a small shred of security maybe?

We still plan on applying for the IVF grant and re-appealing with our insurance company. I just need to know that I tried everything. I think that will give me some sort of peace in all this.

As much as I hate to rant on this I am going too anyway......it's my blog so I can do that ;-)

I will never understand why it is that some people in AWFUL situations are able to just become pregnant without a second thought. Then they have healthy babies and don't really care for or want the child. Then there are people like me who would give their right arm for a healthy child and in order for me to have one I either have to get a $20K loan and pay for one or go through some pretty rough medical treatments that may or may not work.

I am not alone either. I know a few other women with the same type of genetic translocation as me. One of which had a son that was "unbalanced". God bless his soul, he lived 3 months and his body shut down, he passed away in his parents arms. They suffered a miscarriage after that and now a new pregnancy has ALSO turned out to be an unhealthy one. Another woman in our "group" lost one child and is now pregnant with another. On ultrasound this baby looks GREAT but the bloodwork reveals the baby is "unbalanced". What horrible decisions these women face and I don't know how you get through things like that.....other than you just have no other choice but to face it and move on. What else can you do? Lay down and die? It's just not an option. So much like me they make decisions that NO PARENT should ever have to make for the sake of their child. It's sad, it's not right and most times the choices they are given are both heartbreaking and WIDELY judged by so many people. I remember the nieve days when I would look down on people in similar situations if they made a decision I may not have agreed with. I am thankful that I have learned not to judge someone unless I have walked a mile or so in their shoes. I now see that not everything is black or white. There are far more gray areas than I ever imagined in life.

Denial...after Six months of waiting....

Well after six months, 20 pages of appeal information and many phone calls I finally received a denial from our insurance company. They will not pay for IVF w/donor eggs. They "reason" is that it is not in their plan and that if they do it for us then they will have to do it for everyone else. *sigh* I get that but EVERYONE else that is wanting IVF usually carries the diagnosis of infertility. Technically I AM NOT infertile. I can get pregnant. Just getting pregnant with a healthy baby is the problem. I will appeal it again but I am not expecting anything different. I just feel like I have to exhaust all my appeals to feel like I did all I could do to make it happen. I will go on to express once again the risk THEY are taking if Allen and I try getting pregnant on our own. It will be financially draining for us and the insurance company if we get pregnant and have another sick kid. We are not going to try naturally, they don't know that though.

I am feeling low about it. You would think I would have prepared myself that this was going to happen, I mean what were the chances that ANYTHING would be easy for us?

I am going to send my application to the organization that does IVF scholarships next month. That process also takes about six months. My second appeal to the insurance company will be sent at the same time.

If none of this works, we will move on to looking at adoption.

I know, it's been a while.

I havent neglected my blog the last several months...shame on me. Just got busy, ya know how life gets.

We still have not heard back from our insurance company if they will pay for IVF or not. I am still anxiously awaiting and put a call in today to find out at least where our appeal is in their process. In the meantime I am doing Nutrisystem to loose weight. I want to get back down to my pre-fertility drugs, pregnancy, and life altering experience weight! LOL I just can't imagine getting pregnant at this weight. I would be a hippo by the time I delivered. I am working out every day and eating right and feel SO good. I have lost 6 lbs so far in 2 weeks.

Makily will be starting school in April. IS THAT INSANE OR WHAT!? It's pre-K for special needs kids. She will most likely go for 4 hours a day. I am thinking of getting a part time job. I don't know what I want to do yet but I know I need something that I will enjoy doing. Hopefully something with kids.

Other than that things are pretty quiet around here *knock on wood* We are looking forward to the Holidays. This is my favorite time of the year.

And so a new part of our journey begins....

Allen and I have struggled for the last 2 years on whether or not to have more children. When Makily was 6 weeks old we met with the genetics counselor. She went over statistics and options with us. Since I am a carrier I have a 50/50 chance of getting pregnant with another Emanuel Syndrome (ES) baby. Horrible I know. What's surprising is that they say I only have a 6-10% chance of carrying the baby to term. Basically that means that if I were to get pregnant with another ES....I have about a 90% chance of miscarriage or stillbirth. I know some would see the 6-10% chance of having another live born sick baby and say "those odds aren't that bad" but when you already have a child that has a Emanuel Syndrome it becomes more real, yes I realize it's not common BUT IT DOES HAPPEN. I no longer think "oh that will never happen to me". Those days are soooo loooong gone. I remember in the first few weeks after Makily was diagnosed I kept saying: "this is something that happens to other people....Not me". I have learned over the past 2 years that ANYTHING CAN HAPPEN TO ANYONE. No one is immune to problems, hardships and tragedy...no matter how low a statistic is, or how rare something is, bad things can happen whether you want them to or not. I know that sounds so negative and I'm really not a negative person. I guess I just have this new outlook that anything can happen, at anytime, to anyone.....good or bad really.

The thought of accidentally getting pregnant makes me nauseas. Since I carry this genetic flaw these are the risks that I would have if we were to try to get pregnant naturally.

*Miscarriage
*Stillbirth (which would send me totally over the edge having to deliver a dead baby)
*An Emanuel Syndrome child (I adore Makily but her life is incredibly unfair. She has suffered more in 2 years than most adults have their whole lives, I would always blame myself for everything that child would go through, I didn't know before Makily and there are bad days when I still blame myself anyway.)
*A child with the same genetic problem as me (meaning this child would be destined to deal with the same issues and be forced to make the same decisions I am struggling with. How fair would that be? I wouldn't wish this on my worst enemy much less my own child)
*A healthy baby (even typing those words is foreign to me. It just seems like something so far out of reach for me sometimes.)

**I am incredibly bitter than I will never be able to naturally conceive a child and rejoice in the moment those two lines appear on that test. It angers me that instead of being excited if I were to get pregnant naturally I would be filled with FEAR and terror. **

I recently brought up a scenario to Allen. It's one that has haunted me since I had Makily. I asked him "Had we found out that Makily had ES while I was pregnant, what do you think we would have done?" This is a hard topic for me because as long as I can remember I have been VERY PRO-LIFE. We discussed it for a while and Allen said he would have wanted to continue the pregnancy. I think my first reaction would have been to terminate, you see when Makily was diagnosed we were given a pretty bleak outlook. I believed she was going to live a horrible life filled with sadness and suffering, so had I been told that when I was pregnant with her, it would have scared me to death. I was a much different person back then. After much thought, conviction and discussion I believe Allen and I would have decided to carry her to term and pray for the best. I would have had a TORTURED and very sad pregnancy. I know that we would not have let them make any interventions with Makily at birth though. We would have set up a birth plan and said to just give her comfort measures, to let us hold her and love her for the time she was here and I know Makily would have slowly slipped away that night. It makes me cry just typing that. I know that Makily would not be here right now had we known............She could not have survived without all the interventions that were made. I would not have had these two years with her.
This is EXACTLY why God did not let us find out.....Makily was meant to be here.

I will admit, there have been times that I have sat next to Makily's bed in ICU crying many tears, wondering "how far is too far". How much is too much to do to her before we say "that's enough, leave her little body alone". That is another part of parenting a medically fragile child that sucks. You make decisions that no parent should ever have to make....then you constantly question yourself and everything decision you have made. I have often said "I am so sick of picking from 2 choices that both suck.....picking which sucks least is awful". Every surgery Makily has had we have always been faced with "it will fix this but may mess this or that up". Who can deal with that?
Before Makily had I heard someone talking about terminating their handicapped baby I would have been LIVID. I would have thought those parents were incredibly selfish and it would have made me nauseated. Now that I have watched Makily struggle, go through surgeries, seizures, g tubes, feeding issues, therapies and illnesses that I understand. I understand a parent wanting to save their child from the pain and suffering that their life would be filled with. I understand a parent that is so afraid for not only the future of that child but the rest of their family. I understand that having a handicapped baby does not only affect the mother and father of that baby but the entire family. When Makily is sick and hurting so is our entire family. When Makily has surgery we all sit on pins and needles praying that she will come out okay. I would never go back and change it because obviously my Makily was meant to be here, but it has been terribly hard for EVERYONE. What holds it all together is looking into Makily's eyes and seeing the innocence and purity that IS Makily. Seeing her smile and laugh makes it easier for me to keep pushing her to eat by mouth and to force her to do therapy. Knowing that despite all her problems my child is happy. She knows she is loved and she is happy and I can't ask for anything more than that.

The fact of the matter is though that Allen and I want another child. I had tried convincing myself that I could go the rest of my life not trying for more kids and not regret it.. Well I know I will always wonder "what if?" God forgive me but there are things I will never get to experience with Makily. That brings an ache to my heart that I cannot even begin to describe. Knowing I will most likely never hear Makily say "Mamma" or "Daddy" brings tears to my eyes. That being said there are things I have learned and experienced with Makily that I never would have had she been a "typical" child. Those lessons are what have made me who I am. I am incredibly grateful that God allowed me to learn those things and be Makily's mommy.

Allen and I have decided that we want to try IVF using donor eggs. We *could* use my eggs but there is more testing involved if we go that route. It would also involve discarding of any embryos that carried the same "genetic flaw" Makily has. I don't judge anyone who does this but for Allen and I it's just something we would feel guilty about. To us that is like saying we want to "discard" of Makily. This process is also not totally perfected and reduces our chances of a successful pregnancy. I figure we should bypass my eggs altogether and then we will have our best shot.
Obviously money is an issue here. I have an appeal in to our insurance company and am awaiting a reply. My argument is that if we have another ES child not only will the insurance company be forced to cover Makily, they would have ANOTHER expensive kid to cover. It would just be cheaper for them to pay for IVF with donor eggs. If our insurance company comes through and decides to pay we do not plan on starting the process until late next year.

Please pray for our family and pray for God to show us the right way.