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.

The Seizure...

I woke up early that Saturday morning to the familiar sound of Makily fussing. I slowly sat up, rubbed my eyes and went to turn the light on in the living room. Makily and I were sleeping in the living room because we were doing renovations on our bedroom. I looked over at the clock, it was 3 AM. I went over to Makily and she was still crying and had started grabbing at her G tube. "Does your tummy hurt baby?" I sat down next to her and lifted up her shirt to check the G tube. It wasnt leaking...that's good I thought. I checked her diaper that was still clean and then sleepily decided I would give her Prevacid thinking maybe her tummy was bothering her. I quickly prepared it and gave it to her. Makily calmed down. I turned the light back off and laid back down on the couch. Right as I began to drift back off to sleep Makily made a strange noise. I jumped back up and turned the light on. I looked at her and she was staring at the ceiling. I said her name once.....twice......nothing. I sat down next to her and shook her she continued to stare as if I was not even in the room. My mind started to race but I immediately was talking myself down at the same time. Is this a seizure...........no it can't be....we just went to neuro yesterday, they said she was FINE....you are just thinking seizure because we were just at neuro......stop jumping to conclusions. Then I picked Makily up and immediately realized, I was not jumping to conclusions. Her entire body was limp....she had NO tone, in fact had I not felt her breathing I would have thought she was dead. I quickly laid her down on the couch and she was still staring vacantly. I shook her, screamed her name right in her face....clapped my hands....still no response. I am getting scared now. I have said many times that Makily can ignore you like no one else can so I decided I had to do something that I KNEW would get her attention no matter what. I pinched her leg.......still nothing but vacant staring.....then it started.....the twitching of the same leg I had pinched. I grabbed her leg and it stopped....as soon as I let it go it started again. I ran to get the phone....by the time I got back both of her arms and legs were twitching. I call 911......."My daughter is 2 years old and I think she is having a seizure." Notice the words "I think". My child is very obviously seizing in front of me but I was still even then trying to deny it in my mind. The 911 operator made sure he had all the correct information and said he was dispatching someone immediately. Makily remained non-responsive and actively seizing. I kept asking why she was seizing for so long and why it wouldnt stop. The operator just continued to ask if she was still breathing. Yes she was...after about the 3rd time he asked me, it occured to me that she could stop breathing. It was about that time that I could feel myself start to panic and I started to cry and shake Makily while screaming her name. The operator told me to calm down and that if she was seizing she couldnt hear me. I quickly got myself back together and asked what was taking so long. He kept saying "they are almost there". It seemed like an hour had gone by. I opened the front door and a few minutes later heard the ambulance but they were not driving up. WHAT ARE THEY DOING!!!!! I ran back over to Makily and she had pooped.....Do I change her...should I move her...what do I do, God help me. The ambulance drove up just then. I hung up with the 911 operator and looked at the phone....the call had been 13 minutes.......I could feel the knot in my throat forming as I realize that she had been seizing for at least 15 minutes. A female and male paramedic walked in the door looked shocked and said "OH, this is a pediatric call?!!?" The female knealt down beside Makily watched her for about 5 seconds....picked her up and ran out the door with her. I grabbed my keys and ran after her. The male said they were taking her to Munroe and I said I was going with them. I got in the ambulance and I heard the female say "her oxygen saturation is 72%" (normal is 95-100). My heart sank. I know Makily is so hard to intubate even some of THE BEST pediatric docs struggle to get an airway on her, she is starting to go into respiratory distress, what if they can't get the tube down? I CAN'T BELIEVE THIS IS HAPPENING. I called Allen and my parents while on the way to the hospital and basically blurted out "Makily is having a seizure and they are taking us to the ER". The ambulance ride was awful. It took several doses of meds to make the seizure stop...her IV was not easy to get in and blood was everywhere. I remember seeing the paramedic go to put an oxygen mask on her face. I said "she hates anything on her face!!" The mask was on by the time I got the words out and Makily just laid there.....staring vacantly admist slowing twitches of her tiny body. I realized how "not with us" Makily was at that moment. We got to the ER and it seemed like there were 20 people around her bed all talking and doing things to her. I felt like a robot rattling off her medical history and explaining her difficult airway. It all seemed so surreal. It took 4 or 5 attempts to get her successfully intubated. Each failed attempt would end with Makily coughing and gasping for air and me crying and praying with all my might for them to get the tube in place. I kept seeing flashes of her smiling and laughing....visions of Makily sleeping on my shoulder and hearing the sounds of her breathing in my head. God please don't take her from me now, I am not ready to let her go yet. Finally they get the tube in place.....it was taped VERY securely. It was so tough to get down that they actually assigned a nurse to stand by the bed and "protect THAT airway". Her job was to make sure Makily did not wake up and start to move the tube around or pull it out. The meds would start to wear off and Makily would start twitching again. How long is this going to go on!?!? GOD PLEASE MAKE IT STOP!!!
They would dose her back up with meds and she would calm. She spent 4 days in the hospital, 3 of which on a ventilator. I have never seen her recover this quickly. God heard my cries and all the many prayers and decided to let her stay here. She still has so many more lives to touch and lessons to teach. Her work here is not done and I pray it won't be for a very long time. Until then, she continues to amaze me and make me fall even more in love with her each and every day.

I'VE WON, I'VE WON.....IT'S THE GOLDEN TEDDY BEAR!

A few days after posting my last blog entry I had sat down at Mom and Dad's and read it to my parents. My Dad was proud and did laugh along with my mom and sister. Then of course we all started reminicing about other "funny dad stories". This one is something I had honstly forgotten about until my mom brought it up. I thought I HAVE TO BLOG THIS..and so I am.

**Disclaimer** I did advise my father I would be blogging this story and he was totally fine with my telling his sad "GOLDEN TEDDY BEAR" story. He hopes you all feel sorry for him and scold me for laughing at his pain!!**


The Tiny Golden Teddy Bear.

Ever since I can remember my dad has ALWAYS carried his lunch to work. In his lunch box was ALWAYS the same thing. A ham sandwich with tomato and mayo on white bread, fruit cock tail that we put in a small tupperware bowl and a little debbie snack cake. At the beginning of the week we would open a can of fruit cock tail and dump it into a bowl. Then we would scoop out enough for his lunch each day.

This one particular day my Dad came home VERY EXCITED! He was telling my mother that HE MUST HAVE WON SOMETHING! He has to see the fruit cock tail can. My mom of course thinking he had lost his mind asked why. He explained that when he went to lunch he was eating his fruit cock tail and discovered a little Teddy Bear floating in it. It MUST mean that the makers must have a contest going on for the person who got the "Golden Teddy Bear". We could be millionaires or owners of a brand new car and not even know it!!! My mother asks to see this "prized bear". My dad excitedly pulls his small tupper wear bowl out of his lunch box, opens it and presents his "winning bear" to my mother. My mom starts to laugh HYSTERICALLY! Dad says "What the heck are you laughing at!?" My mom finally got herself together and explained. This "prized bear" that my poor dad had saved was actually a huge swollen up gummy bear. My sister and I had a bag of gummy bears we had been snacking on. For some reason we put them in the fridge. Well a gold colored one had fallen into Dad's fruit cock tail and soaked up all the juices....making it swell into GIGANTO GUMMY BEAR. When Dad found it he thought he had hit the Jackpot......he threw the fat gummy into the trash heartbroken and disapointed. I don't think I have seen him eat another gummy bear since that day.

Hold on to your hats...err,r uhm I mean ski masks

So my Dad is a character. I have always enjoyed his humor and insanity, but it seems the older I get the crazier and funnier he gets. While my dad is not an overly emotional man, as time has gone by I have seen him soften. He was amazing when Makily was born and I will NEVER forget a moment I had with him just an hour or so after her birth. He came into the room after I had asked several people for my Dad. He walked straight to my bed and hugged me while I cried. I could tell he was shaken from all that was happening but he was the strong rock he always has been and kept saying over and over "it will be alright, it'll be okay Patricia". We hugged for a long time. I will never forget that moment. He worked his butt off for us when we were kids. I vividly remember a time when my parents were going through a tough time financially, the place he worked for was laying people off and talking about closing the doors. The work was sporadic, so when they werent working he would go to A Day Labor. One day he came home exhausted and dirty from a day of shoveling mud in the rain. At the time this didnt really effect me. Now looking back I am in awe of his pride, strength and determination to provide for his family. My parents NEVER ONCE took welfare, food stamps OR ANY state aid. They always made ends meet no matter what. I have the utmost respect for both of them for all of those reasons.
So onto my crazy story about my dad.
He is thrifty something I have proudly inherited from him. My mom likes to call us cheap but I say we are thrifty! Anyway my parents were looking for a fan for their bedroom. They went to Walmart and my Dad found this HUGE ridiculously sized INDUSTRIAL fan for I think $20. My mom said "uh no let's get this one it's smaller and more what we need". When my dad saw it was more expensive he said "no this is bigger and cheaper!" So the industrial sized fan they buy. That night they are settling into bed. They set the fan in front of the bed and turn it on. The force of the fan nearly blew my parents out of the bed. My mom told my dad to turn it off, it's too strong and she feels like she is in a windstorm. Well Dad being my Dad refused to admit the fan was too strong because that would mean they would have to buy another one and spend more money! So my mom bundles herself up in blankets and goes to sleep. She woke up hours later and was immediately frightened. There was a man laying in the bed next to here wearing a ski mask.....at first she was scared but then realized...it was my dad. She woke him up and said "Ken what the hell are you doing laying there with that ski mask on?" He sleepily said "The fan was freezing my bald head so I put the ski mask on to keep me warm."

My mom made him buy a new fan the next day.

2 words that make me sick to my stomach....

Balanced translocation.

2 numbers that make my stomach churn.

11 and 22.


These words and numbers used alone and NOT together are not a problem to me. It's when you group them together I get nauseated. I see them online or hear someone else say Balanced translocation, my heart skips a beat and I get excited, then sad. Excited because FINALLY someone else knows EXACTLY how I feel and shares this rare "fluke" with me.......Then sad because I know they have walked the same hard road I walk, felt the same guilt and self hatred I have felt, but mostly asked God why more times than they can count.

When Allen and I were trying to conceive (ttc) we had fertility testing done. I was convinced I had endometriosis or some other female disease or syndrome that would leave me infertile for life. I was mortified at the thought that I would never be able to have children. I would obsess about what was wrong with me fertility wise....before I even knew there was something wrong with me. I don't know why but I always feared not having children. I was never one of those people that went through life saying "i'm going to be a doctor, a nurse, an astronaut or even the president". I just wanted to be a mommy........okay so there was that one year I wanted to grow up and be a rockette, realizing back then that I was way to short to even be able to try out...I decided I would be fulfilled and happy being a wife and mother. (although sometimes I will do kicks in the living room to entertain Makily from time to time....JUST KIDDING...okay not really)
So after 6 months of trying my stupid obgyn told me I had low progesterone and that he would prescribe clomid (mild fertility drug). I FREAKED out. All my years of worrying and wondering what was wrong with me had come to fruition...I HAD LOW PROGESTERONE.....I knew it, I just knew something was wrong. So after reeling in depression over that diagnosis I began taking clomid. This medication made me cry all day long and want to watch Steel Magnolias and Lifetime original movies long into the night. My first month on clomid I had HORRIBLE pelvic pain and went in to have an ultrasound. Oh the joy and fun that was. Imagine holding about 2 gallons of urine while having someone press on your stomach in the midst of stabbing pelvic pain. This lady had ZERO sympathy for me and my busting bladder and actually had the nerve to ask if I had drank the 2 gallons of prescribed fluids before the test. (okay not 2 gallons but it sure felt like it) YES I DRANK ALL OF IT! Then she instructed me to drink more....I gulped down another 8 ounces and laid down for more torture. She finished that part of the ultrasound and then told me to empty my bladder....but just a little....ARE YOU CRAZY I am thinking...just a little!? How am I supposed to do that.....I feel like a racehorse right now and you want me to pinch it off!?!? So I waddled with my legs crossed to the bathroom and peed....just a little. This was torture! I lay back down on the table and she explains she is going to do a transvaginal u/s. *sigh*. For those who do not know what that is....it's basically a "probe" type device that is err.....uhmmmm inserted into the vagina. So imagine holding what is now half a gallon of pee with said probe in vagina moving around pressing on my bladder. I have never held pee this hard in my life.
So the obgyn calls with my u/s results and says I have several follicular cysts bursting everywhere. Fluid in my pelvic cavity and that it's a good sign that I am ovulating. Oh wonderful. The next month on clomid I experienced the same pains BUT they were even worse than last month and I was walking hunched over. I went back to the obgyn and he said "well you have cysts bursting everywhere and I am just missing something so I want to refer you to a specialist in Gainesville".
So off to the specialist we go. We sit down with the doctor who tells me that he can't find the lab results saying my progesterone level was low. I show it to him to which he replies "13.7??? that is not low progesterone, who told you it was low?" MY OBGYN DID, WHO DO YOU THINK!??! He then explained that my level was NORMAL and that all the pelvic pain from the previous 2 months of clomid use was most likely caused by ovarian hyperstimulation. (I matured too many eggs at once) His advice was to try for another 5 months. If we wanted to do some very preliminary testing such as genetic or hormonal that we could but he felt we should wait another 5 months. I agreed and besides my hormone levels were fine and genetic testing...sheesh I don't have any genetic problems, I didnt even think twice about it.
I had a few other procedures with my NEW obgyn and even had a laparoscopy that was normal. Finally I was starting to think that all my worrying and wondering was for nothing. I was NORMAL, I needed to stop stressing and I would get pregnant.

Finally I did.

After 15 months of trying we found out on Allen's birthday I was pregnant. HOW EXCITED AND BLESSED I FELT!

Fast forward through a very normal happy pregnancy and very normal ultrasounds.

I had Makily and the MOMENT I saw her I KNEW something was wrong with her. I knew it was bad....I just didnt know what. They diagnosed her with trisomy 22 when she was 6 days old. They werent sure if it involved another chromosome but they said it may involve 11. I asked how this happened and it was then that it hit me....I knew. This was what was wrong with me all this time. The thing I had brushed aside and never gave much thought too....genetics. The doctor told me it could be a fluke and just one of those "things that happen". OR that Allen or myself could be "carriers". He explained that if one of us was a carrier it is possibly the reason why it took me so long to get pregnant. Most trisomy 11 or 22 babies are miscarried early on before you even know you are pregnant.
My heart was sinking fast. Taking in that Makily would be severely handicapped in EVERY WAY, being told they werent sure of her life expectency and then BAM......now it may be something you passed down to her......you did this to her. It was too much for me to take and I was so angry. I hated the world.

They took our blood to test Allen and I the same day. I got into a fight with the lady at the hospital lab because she was a raging B*tch and was very rude to me, she was confused of what test was being ordered and instead of calling upstairs to the doctor...she took it out on me and talked to me like I was a 5 year old.....I had enough that day. I told her if she had any compassion or had any brains she would know that the testing we were having was LIFE ALTERING and that I had a baby in the NICU and I didnt need her crap!! I ended up telling her she WAS NOT touching me or drawing my blood and then breaking down into hysterical tears. We got the blood drawn by a nice man that was there. The lady did get in trouble I don't know what kind but I know she was reported.

A week later I was walking into the NICU to see Makily. She was having her g tube surgery that day. She was 3 weeks old. I was at the "scrub station" and I saw the geneticist walk in. He came up to me and said "Caldwell right?" I nervously said yes and he said "oh well I got your bloodwork back". My heart is pounding now....what is he going to say, surely if it's bad news he wouldnt tell me here in the hall by the scrub station. Just say it.....SAY IT! He said "you are a carrier...if any of your family members are of children bearing age they should be tested too". With that he walked away.
So now I am standing there realizing that all of Makily's problems were genetically inherited and linked to a crappy gene I gave to her. Knowing that if Allen and I have any more baby's that they may be just as sick or sicker than Makily. Even worse they may die soon after birth or be still born. I slowly walked to Makily's crib, I picked her up being careful not to pull any of the tubes and wires attached to her. I sat down in the rocking chair with her, held her tight and cried my eyes out. In between sobs I told her how sorry I was that I did this to her. That I would do everything in my power to make it up to her.....to make her life the absolute best it could be. I was so damn sorry.
There were days upon days that I hated myself. I hated the world, I hated normal people. Happy people made me sick. People with healthy baby's made me angry. Pregnant women made my skin crawl. I would sit on the shower floor crying and screaming at God. Why would he do this to me? What kind of God would play such an awful cruel joke. I had begged him so long for a baby and so he sends me a sick one....then makes it my fault that's she's sick to top it all off. What had I done so wrong? This was the darkest time of my life. I had suicidal thoughts, horrible thoughts that scared me. I wished I could run away and live on the beach by myself. Maybe if I ran far enough away from my problems they would vanish. I imagned myself driving the car off of a bridge. Life no longer made ANY sense to me and I didnt sign up for this. I now had a handicapped child AND could not have any more children. Well I guess I could but taking that chance make me sick. I just couldnt be faced with the decisions that I would be faced with or deal with that. I remember I couldnt even watch TV without being sickened by the meanless shows and stupidity. None of it mattered or made sense to me anymore.

They say that time heals all wounds. I tend to agree, but some wounds leave bigger and deeper scars then others. My balanced 11,22 translocation is my "big scar". I will never truly be over the fact that I have this "weird thing" that most doctors don't understand. My heart will ALWAYS long to carry another baby in my tummy feeling it kick and grow, knowing that my body formed that child and protected it from all harm. I will never be able to get pregnant naturally without being a total basketcase fearing that my baby may have to go through all of the things Makily has gone through....or that it may die.....or worse that I may be faced with the decision of if that baby would be better off in heaven than here with me. I pray that one day God WILL allow me to have another child. A brother or a sister for Makily that will adore her and that Allen and I can love as we love Makily. That is my dream, we will see what the future holds.


Only God knows.

List of pet peeves and other weird stuff about me

1. People that talk too slow really annoy me.
2. I hate it when you see someone with a pimple that is SO READY to pop and it's all white and plump and you can't do anything but stare at it and wish to God they would go to the bathroom and pop it.
3. I hate telling someone they have something in their teeth.
4. I hate it when I hear some idiot teenager with their radio BLARING in their car and booming until my windows in my car or house shake. (*yet another clue that I am not hip anymore*)
5. I dislike people who get up to the check out in a store then they send one of their kids or they themselves go run and get something else they "forgot"......it really infuriates me when the forgotten item ends up being something unimportant like a bag of cookies or chips. I HATE it when people go through their coupons AT the checkout. This always seems to happen to me when I am in line behind them with with a box of maxi-pads and a bottle of Midol.
6. I like to bite Allen, not in a sexual way but I just like to bite...I don't know why I just get the urge to and he usually flicks my forehead for doing it.
7. I get great joy out of seeing the FULL TANK indicator on my car.
8. I tend to wait to get gas until my car is running on fumes......I have only run out of gas one time though and I was LITERALLY across the street from the gas station.
9. I love to put new tastes to Makily's lips so I can see her make the "ewww face", lemon works the best hee hee hee
10. One time when I was younger, poorer and very single I bought a $150 dress to wear to a hoity toity banquet for work and took it back the next day....bad girl.
11. When telemarketer's call and I mistakenly answer the phone...I tell them I am not here.
12. I once walked through a drive through with a friend.
13. I hate wearing shoes and most of the time I am in sandals or flip flops of some sort....good thing I live in florida huh?
14. I have a strange habit of putting my TV on mute when the commercials come on. I don't know why but I do it and it drives Allen crazy.
15. I am a horrible klutz and I fell in my yard yesterday morning. I landed in half on the concrete and half in the grass/leaves. It was still dark. When I got inside I had leaves in my hair, a bloody knee/shin and a horrily swollen and bruised ankle. I did have to laugh at the leaves and twigs in my hair though.

Hi my name is Trish and I am not hip nor cool

It's been a while (almost a month GEESH) since I blogged. Sorry I have been slacking, I plan on putting up a few entries this week though!

First off I want to talk about my recent experience in trying to be cool. Once you become a mommy some of your "coolness" seems to slip away without you noticing it. Things like doing your hair and makeup fully before going anywhere are not that important anymore. Which honestly is okay with me but sometimes I do find myself trying to recapture being "cool and hip" and usually I just make a big ass of myself. I have no problem pointing and laughing at myself and telling others of my stupidity and if you have read this blog at all you know that by now! This story involves my best friend, eerily enough her name is also Trish...I have spoken of her in this blog in the past. She and I have been through alot, and our frienship has battled the storms of being teenagers, young women and now old (26 and 28 years old we are) married mommy's. She has stood by me through the hell that was my life when Makily was born...when I needed everyone to back away, she did without question. I know there were times that this MUST have hurt her feelings as it did other's but she has NEVER expressed this to me or expected an explanation of why I did this or that. She knew what having a baby meant to me and how incredibly crushed I felt when things were so up in the air....well not maybe exactly how I felt but she could surely empathize with me. The times when I needed someone she was always available and has always accepted Makily and loved her as she is. So here is our story of trying to recapture our lost "coolness".

**For confusion reasons my best friend will be referred to here as Trish2**Me and Trish2 used to be very hip. We were cool, really we were. Well since mommydom we have lost some of our coolness and we know it. It's okay but sometimes we try to get it back....and make fools of ourselves.

Okay so a few weeks ago The Teals (Trish2's family) and The Caldwells (my family) all go to Orlando to the mall. We all packed into the van which for normal people would be plenty of room but we have 3 babies in carseats so Justin and Allen sat in the front and Makily (2) and Cammy (2) in the middle and then Aubrey (6 months) in her carseat in the back with Trish and I smooshed together next to each other. My arm was pressed against her boob most of the trip, there were times my leg was draped over hers or vice versa.....while I am sure passerby's thought this was something strangely kinky but I assure it was not. Strangelly enough the boys had decided on riding in the front and had plenty of room....thanks guys! I can't imagine that they would have agreed to sitting in the back so close to each other.

So we get to the mall and are browsing. Trish2 had Aubrey in the stroller and I had Makily in my hip sling carrier....the boys had taken Cammy and were doing their own thing. So we see the store Sephora. I have always heard of it but have never been, I knew it was this posh store and have always wanted to go. Trish2 has been and there before to get her Bare Essentials makeup (awesome makeup I might add). I LOVE the show "Blow Out" with Jonathan Anton and I know he sells his hair products there. I was going to splurge and buy a shampoo or maybe a conditioner....I had even thought about going all out and buying both....yes I am a rebel. So we go in and I see these two girls with the palest UGLIEST pink lipstick on trying a sample....I am thinking "UGH SO GROSS".....so I tell Trish how hidious their lipstick is and she says "ugh dork that is supposed to be a lip plumper, you put it on and it plumps your lips and then you take it off". Okay so now I am feeling not so hip but we continue through the store.

I had to ask where Jonathan's hair product line was and I am so excited. I grab the "sample" shampoo bottle to sniff it and I am expecting an AMAZING scent because I mean this is JOHNATHAN'S stuff it MUST smell just heavenly right? Well as soon as I took a sniff I was appalled, my first thought was....TUNA FISH....just like orange tuna fish. So I let Trish2 smell it and she says the same thing. I get one of the "for sale" bottles and it doesnt smell the same as the "sample" bottle....smells like orange but there is no "TUNANESS" to it. So I find an associate and tell her that I think something has gone wrong with this sample bottle of shampoo, it smells well gross. She looks at me and says "It's supposed to smell like that". I gave her an odd look and say...."like tuna"? So her and I start sniffing the bottles together and she agrees the sample bottle had gone bad or someone had added "scent of a nasty whore" to it. She swaps it out with a new sample bottle.

So we continue to browse through the store and I am still contiplating buying the "non tuna version" of Jonathan's shampoo. Trish2 and I walk around the corner, I happen to look at Aubrey who is now in the baby carrier FACING Trish2. She makes the SWEETEST FACE at me as always and starts HURLING CHUNKS, poor baby was spewing all of her breakfast and lunch all over.....down the front of Trish2's shirt and her pants. Trish stood there with the most panicked look on her face and says " I don't have any idea what to do right now!!!" So I unhook the baby carrier and help get Aubrey out, wipe her face and put her in the stroller, while poor Trish2 is trying to figure out what to do. I notice that there are vomit spots on the floor, the snots that work there are looking at us like "What a couple of freaks". We examine the demage to Trish2's clothes and let's just say she was COVERED in puke. C-O-V-E-R-E-D. So she wears the baby carrier out of the store WITH NO BABY IN IT to cover her DRENCHED pukey shirt!!! Now imagine I am pushing a stroller with baby in it AND carrying another baby on my hip......while the dork next to me is walking happily with an empty baby carrier STRAPPED TO HER! We joked that people probably thought she was some crazed maniac that was pretending she had a baby in there or that she was one of those weirdo's that carry their dog's in a baby carrier....hee hee

We decided we are not cool and next time we try to be we will not take the children...it will have to be a mommy's day out!

I will leave you with this picture. It is of Myself and Trish2 back in our earlier and blonder days. We had just become mommy's so there was a smidge of coolness left. This picture was taken on the first night we had gone out since we had found out we were pregnant, which had been almost a total of 2 years. We had quite a few drinks and were feeling fine!

Sometimes I think my life is a sitcom/drama all in one....

Okay so our heat and air went out over the weekend and of course it was cold...it's been warm for like 2 weeks now and here it is cold again! We figured we would run and get a duraflame for the fireplace until Monday. We call Walmart at about 10 pm and they say they have them. We bundle Makily up, and make our trek to Walmart. We walk all over looking and cannott find any fireplace logs. We ask a few employees, they say there is not any in stock. I explained that we called earlier to make sure they had them before we drug our 2 year old with an ear infection and cough out in the cold night air and were told they had them. No one had a response for me other than a stupid look. *sigh*
I did talk to the manager and he called every Walmart from here to Gainesville and no one had them. I don't know why he called so many stores as we wouldnt have driven 30-40 miles for one....hey at least he was trying to help.
We ended up spending the night at our friends house. I went to Bargain Barry's (stop laughing) the next morning and they had several boxes of duraflames and I bought two boxes. We scheduled for someone to come out today (Tuesday). We had a problem 2 years ago with our a/c freezing up and a breaker. The guy that came out basically flipped a breaker which fixed the problem and then tried to sell us a very expensive new heat and air system and swore that ours wouldnt last another month....this was 2 years ago. I made sure not to call the same company because I felt like they had tried to rip us off back then...I was also 9 months pregnant with Makily at the time.
So this morning the a/c & heat man walks in and I think "gee he looks soo familiar". Well come to find out IT WAS THE SAME DUDE!! He was working for a different company back then. I wanted to scream. What are the chances of ALL THE heat and air places in Ocala that I would get the same guy...again. I immediately was on guard for bull crap. Allen had installed a new thermostat the night before thinking that may fix the problem as neither the heat or air would even turn on, still didnt work. After looking around and flipping and playing with the breakers they realize that one of the breakers is bad, . It will not flip and stay flipped and makes a scary errrrrrrr noise....GREEEEEEEEEEEEEEAT! Then the a/c man starts to try and sell us a new thermostat.....yes that's right, he claims the one we had installed the day before was "a piece of crap". He had one in his van for $90...plus the $65 trip charge and labor for installing it. Allen and I went back and forth and I finally just said "look sir, my daughter has many medical problems and I can't go back to work, we really don't have $90 for a new thermostat right now.". He did soften which surprised me. He tried re-installing the thermostat we had put in the night before. The switches kept flying off. I saw it happen once, I swear he turned the a/c on and the switch flew across my kitchen and hit the wall. Had someone been standing there they would have gotten hurt. When I actually saw the thing flying I did have to laugh....the a/c man just kept saying "I've never seen a thermostat like this" (it was only $15) Finally I broke down when he said it just wouldnt go on. I told Allen to do whatever he thought we needed to do. He told the guy to go ahead and install the $90 one because we had to have one to make the a/c work. The dude was great and said "no man, let me help you out, I am sure you can get a cheaper one that WILL WORK at Lowe's...I am sure it's the breaker". So thankfully he only charged the $65 trip charge.
Then we start calling around to find the breaker...well guess what? Just our luck.....the system we have in the house is "obselete" and they dont' make breakers for it anymore! Allen went all over town looking for the breaker. I got online and found the company that manufactured them and they said they could get us one in 3 days but if we had an ACE Hardware they may have it. So after calling every ACE hardware in Ocala and Belleview.....WE FOUND IT! $42.....THANK YOU GOD! Allen got it installed and then he replaced the thermostat with a digital one that looks EXACTLY like the one the a/c man wanted to sell us. It was $29 though.
Our heat and air are working like a charm now! My husband is Mr. HandyMan and I have told him that all day.

We are still fighting for Makily's stander and her kidcart. I havent complained too much to them lately as I believe once she is 2 years old they cannott fight it anymore. Someone at the insurance company let it slip to me and when I questioned it further they clammed up. After 6 weeks of crying, praying, screaming and begging I FINALLY GOT MAKILY'S PREVACID TODAY! It took that long to get it approved. I swear insurance companies really are enough to make me CRAZY! I started her on it tonight so we will see how she does with it and if it works better than the Zantac.

I am working on Makily's birthday party and can't wait! It is SO HARD to believe my baby girl is going to be 2 years old. What a joy and miracle she is. I look at her and wonder what goes on in her little mind. It must be so frustrating for her not being able to tell me what she wants or what is hurting her. She has such a sweet spirit though and I am so fortnate that she only really cries if she is hurting or has pooped her pants. She is so laid back compared to how she was as a newborn. She constantly screamed and cried and was NEVER happy. It seems so long ago but like yesterday at the same time. I remember thinking she would cry forever, that was before I truly knew all the things that were wrong with her little body. How her tummy didnt empty and how she refluxed straight up her esophagus all the time. I was feeding her every 2 hours then too, I can only imagine how awful that must have been for her. Can you imagine the torture of being force fed through a tube every 2 hours while your stomach is already full and it's refluxing and burning your esophagus? I feel bad thinking of that time because I was emotionally unavailable in every way...and poor Makily was miserable. God Bless Allen, I don't know how he got through it all. He is my rock...forever and ever.

Please pass the cheese, I need to whine.....

I am tired, frustrated, angry, irriatated and sad.

Makily was measured on Nov 16 for a stander and a kidcart. I havent called the company for several reasons. One is that I have terrible anxiety about the fact that my not quite 2 year old needs both of these things. I finally broke down, got over myself and called last Thursday. I was told Makily was denied for the kidcart.....they said it was "a deluxe wheelchair" and they would pay for a "standard wheelchair". Okay WHAT IN THE HECK would we do with a standard wheelchair. My kid is 17 lbs and 29 inches long...she would fall through one of the arm holes. I guess I have to ride in it with her on my lap and Allen can push us both. What a freaking joke.
The company told me they hadnt heard anything back on her stander....which is really what we DESPERATELY need NOW. It will help Makily to bear weight on her legs and I pray to God one day...to walk. I called the insurance company and the A-HOLES say they never got the claim for it. So I call the stander place and they SWEAR it was sent over on 12-23-05 ALONG with the order for the kidcart....NO one can tell me WHY it is that Makily was measured for both of these items on 11-16 but nothing was even submitted to the insurance company until 12-23.
So then I find out that while YES we have BCBS of Alabama that all claims are sent through BCBS of Florida first and THEN to BCBS Alabama. Both of which tell me they have NO ORDER for the stander. Only an order for the kidcart that was denied on Jan 31....they claim after the denial nothing else was done BUT THE stander/wheelchair people insist they have sent more information along with a letter stating why Makily needs both of these items.
So since last week I have been on the phone with a bunch of morons who don't communicate with each other and insist on making my life harder than it already is. There were several times I was left on hold for 17-20 mins at a time. I am sure they were hoping I would go away and give up but I didnt. I am hardheaded. I was even told by one person we didnt have insurance through them and I insisted he continue to look us up because WE DO! After arguing back and forth I spelled out Allen's first name LOUDLY and he said "oh i am sorry here it is". That's how the conversation was started...this was after pushing 800 buttons just to get a live person....OH AND MAKE SURE you push the buttons in the right combination or you will be in a neverending cycle of push this or that button. I HATE AUTOMATED PHONE SYSTEMS WITH A PASSION!!! Have you seen the commercial where the guy is on the phone and his house is on fire but he won't hang up for fear of loosing the phone call after pressing 10,000 buttons...that guy is ME!

Do they think I WANT a stander? Do they think I am doing this for fun? My child NEEDS the stander, she needs the kidcart......why is it that i have to fight, beg and plead for things she MEDICALLY NEEDS and that we pay insurance premiums EVERY MONTH for?! I just feel like DAMN I have ENOUGH stress on me, I don't want to have to sit on the phone for hours......on hold, pushing buttons and arguing in circles over something that my daughter is entitled too.

When I woke up this morning Makily's medport on her feeding tube had popped open in the night so from 2am - 6am formula pumped all over my floor, Makily and her bouncy......I should have known today was gonna suck.

As of right now, BCBS of Florida has the order for the stander and for SOME REASON it didnt get forwarded to BCBC of Alabama. After my phone call today they are supposedly "urgently" sending it to them and it will go up for review....to which I AM FREAKING SURE they will deny her and then we will have to start all over again. As for the kidcart.....I am really not sure what the hell is happening. I was told it was denied....then Makily's caseworker wrote a letter of medical neccessity and that it was supposed to be reviewed again but honestly I don't know. I am going to give it a few days and call back on Monday. It's really wearing me down and I am getting nothing but upset and frustrated. It's so tiring spending that amount of time on the phone every day and getting NO WHERE.

Something I wrote....

I have a great friend named Janie, she is a teacher and works with special ed students and parents also. She asked me to write something about what it's like to be a special needs parent. She already had a copy of the "Welcome To Holland" poem WHICH BY THE WAY IS SO TRUE and I suggest if you havent read it to google it.

This is what I wrote for Janie, I wrote it all at once without stopping and then read it a few days later and was amazed at how well I got all my feeings out so quickly.

Here it is:

When you are told you have a "special" child it is literally like a punch to the stomach. You see all these dreams and plans for your child disapear all in an instant and you are left with total uncertainty. As a parent all sense of control is lost. You are no longer "normal". Your family is different. You feel isolated. You struggle to maintain as much normalcy as possible. There are constant reminders everywhere.....seeing a child the same age as yours is enough to bring you to your knees. You can't help but realize your child should be doing the same things that child is doing. The farther away your child is from that "normal" the more this affects you. What's ironic is that you suddenly feel a "connection" to children in wheelchairs, with trachs, g tubes and other things that previously would have scared the heck out of you. You look in their parents eyes and you know they "know" and there is a bond there...without even speaking a word.
The one thing you desire the most is just to be treated as a normal family. To you this is normal now. You come to HATE the "I feel sorry for you" look. Some questions and comments you are asked by complete strangers can leave you in tears, some will leave you speechless. You don't mind people being interested in your child BUT any parents would be hurt and offended by a question like "What's wrong with him/her"? Instead of starting off a coversation with something so negative, it's nice to hear "Wow what a cutie!" or "That's a cool shirt" or even "what beautiful eyes". Sometimes even if you are approached in the proper way by a caring person, it's just too much, you don't want to give details, you have had a bad day BUT feel obligated to explain your child to this stranger whom you most likely will never see again...just to avoid being rude. You find yourself coming up with clever answers to questions that have left you speechless so you won't be taken off guard next time. You desparately want everyone to see the happiness your child does bring you, the amazing spirit your child has and what a fighter your child is forced to be, instead most people just look at the disability. Then you feel compelled to educate everyone.
All in all I would say that we want to be treated normally, like anyone else. To us THIS IS normal and we have adjusted to this new life and new way of thinking.. It's when our child's differences are pointed out, scrutinized and picked apart that we are once again forced to think about what really is normal.

Who can really say?

I have a confession to make.......

I love reality TV.

There I said it.

My favorites are Super Nanny, Meet Your New Mommy (both of these make me appreciate Makily EVEN MORE since she is such a good girl), The Real World, Road Rules...all their challenges (although sometimes I watch them and think WHAT A BUNCH OF WEINEES, have any of them EVER had a REAL job?). I like Makeover shows....all of them. I know, it's terrible.

I was watching The Bachelor special edition last week and it was about all the awkward moments on the shows. This one girl wrote THE DORKIEST poem FOR EVERY single situation she was in. She was attractive but as soon as she began reciting her horrible poems I found myself covering my face in embarrasement for her. Why oh why didnt anyone ever kindly take her to the side and say "i know you love your poems and all but keep them to yourself....at least while on National TV".

Which leads me to my guiltiest pleasure....America Idol. Oh that is my favorite and God forgive me I don't even like the competing episodes that much......I LIVE FOR THE AUDITIONS! While I also find myself covering my face in embarrasment for many of the people on the show....it's like a car wreck you can't help but watch in amazement as these people make TOTAL fools of themselves for their 15-30 secs of "fame". I often wonder do these people not have a friend, a momma, a daddy SOMEBODY that loves them enough to say "YOU CAN'T SING PLEASE DON'T GO ON THAT SHOW AND MAKE A FOOL OF YOURSELF!" The ones that dress up really crack me up. The most memorable one so far this year was the guy dressed up in a short dress with braided piggy tails singing "Moulan Rouge" and dancing....BADLY. Allen was like "what the heck is that thing?!?!"

Today Allen and I watched a few episodes of Flavor of Love. If you havent seen it, it's on VH1 and stars Flavor Flav.....I know this is mean but just looking at him on TV makes me feel like I should go shower....he's just a grungy little man ya know? And the clock he wears around his neck confuses me. Can he not see well? Will a regular watch on the wrist not work for him? Anyway the show is alot like the bachelor....yes Flavor Flav is the bachelor and there are honestly women competing for the grubby little man. It gives me the creeps....the women are also attractive so I have to guess they are in it for the money and exposure. He had a challenge of which girl could make the best fried chicken. Well one of the gals was such a bing bong she took a whole chicken.....stuffed it with raw vegetables and put it in the microwave. Can you say Salmonilla......E-Coli? He didnt pick her. LOLOL

Another one that I am getting ready to go watch that I wait every week for is "Intervention". It highlights the ins and outs of life with an addiction and at the end of the show the whole family does an intervention on the person with the addiction. I really like the ones where the people get their lives together. There have been several that went to rehab and then slid backwards after a while......also many have succeeded. I am off to watch my show!!