I feel icky.

I started this entry trying to be humorous yet profound. I retyped it, deleted it and then said screw it....I'll just be me. raw. uncensored. I couldnt even come up with a good title which usually annoys me but this time I just AGAIN just said screw it and used the first phrase that came to mind.

I feel icky.

ICKY.

I know profound and intelligent isn't it?

I feel like I am juggling 897 balls all the time.

When someone throws in ball number 898............I get icky.

I have been "getting icky" for seven years, since Makily was born. The intensity of said "ick" has gotten worse over the years because my "traumatic memories" have multiplied so much because of all we have been through with Makily.

I don't know how to stop doing this or if there is anything I can do to make myself stop.

This will be an ugly dump of a post.....yes again...I know. I want it out of me, although I feel like once it's out the "feel better" will only last so long. I'm not sure if I will be able to post this publicly. We will see when I get to the end of this "dump". (that makes me think of poo)

I remembered something depressing the other day when I was upset about something else. I find myself doing that often and again, I don't know how to stop. I know it's not healthy,

I am going to share a memory or a couple of them that flood into my brain when that 898th ball is thrown at me and I drop all the other balls I had already been struggling to juggle.

I was 11 years old. I started the 6th grade. Middle School for ME was a nightmare and I imagine for the majority of kids (especially being a girl going through puberty)it is. I had gone to the same elementary school all of my life and had a lot of friends. The Middle School I went to had two classes they picked to segregate from the rest of the 6th grade. They would only have TWO teachers (as opposed to 7), and they would only change classes twice and the two classes would only do things with each other.

Lucky me I ended up in one of the two classes (saracasm).

With none of my friends, I didnt know anyone.

I remember feeling that feeling of loss because I no longer saw any of my friends that I had been in school with for YEARS. I was for whatever reason embarrassed by this. I think maybe because I didnt want my parents to know I didnt have any friends at school?

I dont know.

My grades were atrocious. I was always in trouble for it at home. I would DREAD report cards or progress reports. I don't know if I would say I had become lazy. I had always struggled somewhat with school but had caught up and done fairly well in fourth and fifth grade having b's and c's.

I had tons of D's and F's in the 6th grade.

So I look back now at how I was during that year and I can now say I WAS VERY depressed.

It was the other day when I was dealing with ball number 898 that I realized THIS memory IS the reason why I believe I was so depressed and sad that year.

I had tried out for the Pom Pom Squad and made it. It was a Middle School Dance team and I was ELATED. I had always loved to dance.

A week or so later during practice Ms. Thomas (the gym teacher and also the pom pom coach yes that is her real name and I feel ZERO guilt about using her real name.) said she would be passing out uniforms. All 12 of us girls ages 11-14 were told to strip down to our bras and panties and stand in the locker room. We all did and I remember being mortified. It was the first time in my life I had to be that naked in front of that many people but she told us to do it so I did.

Ms. Thomas walked around giving a skirt to each of us telling us to try them on to see if she was going to need to have anything altered. When she got to me she said she didnt think she was going to have anything to fit me (in front of everyone) and then threw a skirt at me to try on. I put it on and couldn't zip it. There was one other unfortunate girl that also got the same treatment as I did and I CRINGED for her as many of the other girls giggled. Ms. Thomas then came back to me, told me to turn around and "suck all that in". More giggles while I tried to suck in as much as I could so the skirt would zip and the humiliation would end. I was fighting tears the whole time.

It was incredibly tight but she zipped it. When she saw how ridiculous I looked with the now roll I had hanging over said skirt she said "You need to lose that or at least suck it in".

I was sucking in it is what was sad.

So there I stood 11 years old, half naked in front of my peers (most of which I did not know), looking ridiculous in a skirt too small, being made fun of by an adult and hearing the giggles from those that were not as unfortunate as I was in that moment.

From that day on the two captains of the team were mean to me and ridiculed me all the time.

They called me fat.

I felt worthless and ashamed.

I felt fat and ugly.

I felt like I would never be as beautiful as the other girls.

I felt like I would never be "good enough".

Today at age 34 and 23 years later....I stll struggle with a lot of those feelings. I still struggle with my self esteem and the feeling that no matter what I do or how hard I try I will never be good enough.

I don't know what to do with that.



publishing this post with anxiety in my throat. I don't understand how I can be so brutal and blunt about my feelings and thoughts about when Makily was born but THIS memory from so many years ago makes me sick to my stomach to publish. I'm embarrassed and ashamed by it but maybe someone else will happen upon this and it will make them not feel so alone.

So What's New?

Let's see.





1. I got my nose pierced. I love it and wish I would have done it sooner. I like the nose screws





rather than the pins.











The pins fall out way too easily I think. I accidentally yanked it out though and developed a bump on the inside AND outside of my peircing. I got rid of the outside one doing sea salt soaks and I'm working on the inside one still. Kinda sucks because at the right angle it looks like a booger, although it's just my bump.



2. Jakob was seen by the Neurobehavioral doctor. He says because Jakob is so developmentally delayed (shoot me in the face) that is why we are seeing the behaviors we are. Jakob is three and a half but is according to the doctor functioning at the level of a two year old (#failureasamother). This is all classic textbook terrible two behavior. He wants to wait a year and revisit the issue. He feels that Jakob's speech will catch up in the meantime which will also lessen the tantrums and aggressive behavior. If in fact the aggressive behaviors have not gotten better in a year or so (#iwillbeinsane) we will start discussing medication. School will be VERY difficult for Jakob if he is still having the same impulse control problems and hyperactivity he has now. Some days I know we BOTH must feel like all I say is "Jakob, no, Jakob stop......Jakob find a corner!" He also ordered an MRI of his brain to see if his brain is structurally damaged at all from the prenatal drug and alcohol exposure.....oh joy. The MRI was on Friday and it was at Shands (#myfavoriteplaceSARCASM). Technically we could have had it done elsewhere (because if you have read my blog you KNOW how much I really love Shands) but that would have entailed another at least three month wait to see another shrink....then wait for them to set up the....yada yada yada yada. I figured I would buck up and deal since Jakob is "healthy and normal" and if I thought for a second any of the people there were 1. Morons with no experience or 2. Going to kill my kid I would abruptly say thanks but no thanks and bail. I've done it before (nervousbreakdown#4). We had a hell of a time getting up there because Jakob has learned to unclick his chest strap(not the crotch strap) and pull his arms out of the straps of his carseat while Mommy is driving on I-75. *sigh* Well what Mommy DIDN'T know is that he leaned over and unclicked the belt FROM THE SEAT....YOU KNOW WHAT ATTACHES IT....TO THE CAR! I say "Jakob....HOW MANY TIMES DOES MOMMY HAVE TO TELL YOU TO LEAVE THAT CHEST STRAP ALONE.......!!" I start looking for a place to pull over and fix the thing when I realize I'm coming up around the entrance to the hospital and I slowed down when all the sudden I hear THUD...I think someone hit us. I look behind me and no one is there.....not even Jakob. His carseat is laying face down on the floor board...with him in it. I NEARLY have a heart attack, I'm crying and SITTING IN THE MIDDLE OF ARCHER ROAD with traffic behind me TOTALLY STOPPED. Inside I'm panicking but I held it together enough to turn on the hazards, jump out, flip the carseat over, get Jakob out (whom in the meantime is saying "MOMMY, MOMMY I UP....I UP...I UP MOMMY"!) I quickly strap him into Makily's carseat that IS still strapped in (thankfully he couldnt reach hers), and then pull into the parking garage. Mind you my heart is pounding out of my chest because I am convinced if Jakob DIDN'T already have brain damage he now does from flying out of the seat. We get out of the car and he jumps out acts fine, and says "Mommy I go!" (#kidsgoingtobethedeathofme) We get inside, the techs, doctors and nurses were ALL so kind and wonderful with him. I felt comfortable and wasn't really concerned about his safety like I imagined I would be. Once he went back I forced myself to walk around Shands. I was surprised that I didnt totally lose my cool as soon as I walked in the door. A couple of spots did spark memories..mostly bittersweet ones...some bad.....I took pictures and if I can get them up on this entry I will. We don't have results yet and I haven't called to try and get them yet either. I want to know and don't want to know at the same time.

3. Makily has the same nasty stomach bug the rest of us have all had. I got it have been down for four days (as down as I can get with two pooping kids and a hubby on the road for work). Makily started acting sickly last weekend but not really showing any symptoms...I could see it in her eyes. That sounds funny but I can see it...just trust me (#iknowimalittlenuts). She's full out water shooting out her butt (TMI..but i'm not sorry cause if you read my blog you should know by now). I'm coating it with butt paste and she's on just pedialyte right now. I'm hoping this is short lived on her. Tummy bugs have always been horrible on her for all the obvious reasons (she can't vomit) and well her belly is already a mess as a normal for her so....yeah it sucks. No seizures since the two in Feb and I'm hoping to keep it that way. She had a recent EEG that was AGAIN abnormal so I just hold my breath that the weird spikes will not lead to a seizure. She's on two meds now and under control so I'll take that.

4. I'm really tired. Mentally, physically, emotionally and every other way there is to be tired..I am.

More Tomorrow maybe....and maybe it will be something funny instead of well...this.

11 Years Ago Today.

I married my Allen.


I was 23 years old and thought he hung the moon........


.......and I still do.






Our first date was a double date with the friends that had set us up. Allen was shy and almost awkward and I was the loud mouth, out going slightly less mature than I am now 21 year old girl.





I left that date saying "He's nice but really shy, that won't ever work."



Then Monday morning at work I got a HUGE arrangement of flowers from him with his cell phone number on it.



He was the first man I had ever dated in my adult life that sent me flowers.



From that day on I was hooked, his shyness disappeared and the real Allen SLOWLY....EVER SO SLOWLY emerged. I fell in love with the selflessness I saw in him. The cute way he would get embarrased when I would tell him how I felt about him. The way he treated his mom and the eventual way he let me "in" when I KNEW that was not something he did with just anyone.



Although the first six months we dated was a little rocky (and I know now it was because he had so many walls built up that unless you were persistent you would never tear them down), I knew deep down I was going to marry him one day.



Our marriage from the beginning was great. We really didn't have REAL problems at first. Financially we were stable, both us of worked, we loved each other and were dedicated to building a life and family together. I wanted really for nothing except a house and two kids eventually. I couldnt wait to be pregnant and have Allen's babies. My picture perfect, cookie cutter DREAM LIFE was well on it's way to PERFECTION.



Two years later we started trying to have a baby.



This was the first REAL test of our marriage. Six months of trying and not succeeding had me totally insane. I didn't understand what was taking so long. I was convinced something was wrong with me. Allen acted aloof about it. Didn't act like he was bothered by it at all. This made me insane. I wanted him to be as upset as I was and while he probably was he didn't show it and it made me angry. This was a difficult 15 months for us and I remember when I became pregnant that I remember thinking WOW that was so hard. I was proud we had gone through something so difficult and survived it. We were stronger because of it. I had grown as a person.





Then Makily was born.




I fell apart. Allen, who probably was hurting as much OR MORE than I was, WAS A ROCK. He held me for hours while I sobbed the night she was diagnosed. He just laid there quietly holding me, occasionally telling me it would be okay. Although I'm sure even he doubted it then. He cried when they told us the diagnosis and prognosis. That was THE LAST TIME I saw Allen cry. The next day, as if he had mourned it literally over night...he looked at me and with honesty said "She is my daughter, I will love her no matter what, I don't care if she is retarded or if they think she is going to die, she's mine." I sobbed more. I wasn't there yet. Didn't think I could ever get there.



He drug me along the journey with him. Mornings when she was still in the NICU he would get up, get dressed and nag me to get up so we could go see Makily. I could barely lift my head off the pillow. I would have been content to just lay in that bed and stare at the wall all day, recounting how horrible my life was and how it would always be that way now. (Post partum depression anyone?) Allen would get dressed and say, I'm leaving in five minutes and I'm going with or without you. The guilt of that statement would force me out of the bed. I would go, hating myself and everything all the way. I was angry at him for being "okay". Much like when I was trying to get pregnant and he was so calm about it, I wanted him to feel the pain I felt, to show he was hurting, to show he cared like I did.



Well, the truth is Allen isn't me and doesnt show how he feels like I do. I have since learned this and I know now he was hurting as much as I was. He just chose to accept it and LOVE her no matter what. He knew I was completely emotionally and mentally unavailable and if HE didnt pull himself up by the bootstraps and deal, then Makily would have had no one.




I will never be able to repay him for being Mommy and Daddy to her during that time when I couldnt even be a wife much less a Mommy to a baby that I thought was going to die.



I obviously eventually pulled MYSELF up by my bootstraps and got it together with the help of Allen and my family.



Life with Makily has always been difficult. Life with Makily though is much sweeter than ANY OF THE DAYS I lived before her. I look at her NOW and see perfection. I've never seen a spirit more perfect than hers. Ever.

Then the decision to not have any more bio children. Allen again was a rock...he told me that he would do WHATEVER I wanted. If that meant putting us through IVF with PGD, adoption, fostering....he was down with whatever I thought I wanted to do.

That is love. Knowing that ONCE AGAIN he may have to carry me through another emotionally, heart wrenching situation and he was willing to do it again...to make me happy.

He is the most selfless man I have ever met.

Nothing is ever easy for us and so getting our foster license was a pain in the ass, then we got Jakob and I realized there was no way I could ever give this child "back". Literally the second they put him in my arms I knew. I told Allen on the way home, "This is bad, I can't let him go........" Allen was stand offish with Jakob the first three days. He was afraid and he knew that I was already so in love with this baby that he had to be the strong one. He knew it was very possible they could take him away with little to no warning. On day four I noticed Allen holding him more, playing with him and feeding him. It made me happy and afraid. I knew now we would both be heart broken if they took him. In the times that we thought they would...and there were many, Allen showed his concern but held back a lot and I knew it. I didn't push it though because I understood him now. I got it.

Allen has taken on the responsibility of being my rock. He has taken it upon himself to be strong when he KNOWS I can't do it. When it comes to medical decisions with Makily he tells me he trusts the decisions I make. The medical part of this is MY strong point. I know just enough to make me dangerous which is good and bad. Sometimes I wish I didnt have the back ground I do because when they say certain things I panic, because I have seen the outcomes before with other kids when I was working. Allen has not seen those things, so while we discuss all the medical decisions made about Makily, ultimately he leaves it up to me. That's my strength.

We compliment each other, he is my soul mate.

I joked with him this morning saying "If you knew then what you know now....I bet you would have run like your hair was on fire." Then I said I SURE WOULD HAVE! LOL

We didn't know and I am glad we didn't know. It has made us closer than I think I could ever be to anyone else EVER. No one else has lived what we have lived through.

No one else knows the pain I know and live with EACH DAY....except Allen.

No one knows what it is like to love not only Makily BUT Jakob who we also have no idea what his future is going to look like.

No one could have walked this chaotic, difficult, painful, happy, insane, crazy, wonderful, beautiful, LIFE ALTERING road with me but him.

I love you forever Allen, you are my rock, my soul mate and I am forever changed because of you. Thank you for always carrying me when I couldnt take one more step. Thank you for all the times you have had to carry Makily, Jakob AND ME at the same time. I will never be able to tell you how much you mean to me.

There just aren't words in the English language to describe it.

I love you forever.

Grieving when you have a special needs child.

Grief blows.

It just does.

*huge sigh*

The moment Makily was diagnosed with ES my grieving process began. LITERALLY that second. It was like a part of WHO I WAS was ripped from my soul. Left empty. A hole in who I am as a person....and there is NOTHING that can fill that hole. Sometimes I feel like it's just gaping open, bleeding and I have no idea how to close it.

As long as it is open I am tortured by it.

I'm tortured by the things in my life that I cant change.

I recognized the part that was ripped from me immediately. It was the part of me that was carefree. The part of me that didn't TRULY understand the emotional pain of a loss so great.

A loss of EVERY SINGLE dream I had made for my child....they were lost in an instant.

EVERY. SINGLE. ONE.

None of my dreams for Makily would ever come to fruition.

I was even uncertain if I would see her celebrate her first birthday.

That's heavy.

My rose colored glasses turned black almost instantly. I remember the angry feeling, my arms crossed over my chest, my legs crossed while I nervously kicked my foot in a rhythm with how fast my heart was suddenly pounding. It felt as though an elephant was sitting on my chest and I could barely breathe. The nausea would come in waves between my sobs. The doctor continued to speak and I just kept kicking my foot wanting to go back in time. To a time when my life was "perfect". When I was pregnant and happier than I had ever been. Then KNOWING I could NEVER go back, no matter how much I ached to. I remember being angry so many people were in the room to witness the most devastating moment of my life. I remember thinking they must all feel so sorry for us. I would have if I were in their shoes.
Then I realized at the end of the day they could go home and turn it off......I could never just go home again.

Ever.

We all go through the stages of grief differently. Some stages I skipped. Some I have wallowed in, especially anger. I cant say that before Makily I believe I was an angry person, now sometimes I realize I am fighting the anger back more than I would like to admit. The anger of seeing someone with a normal child that should never have had children. The anger of seeing things come so easily to some while I struggle to figure out a way to help Makily swallow more efficiently so her clothes arent drenched. And okay, how about this.....if I'm being honest I'd like her to swallow better so people don't stare at her at age seven, wearing a bib. So people are more readily accepting of her. So people won't hesistate to pick her up, sit next to her and love her like she deserves to be loved. So people will realize that their showing HER attention isn't some wonderful thing THEY did but that they will realize THEY ARE PRIVILIDGED to even be in her presence much less know her.

I remember feeling alone. Segregated, DIFFERENT. Outcasted. Truth be told I've never totally felt like I TRULY fit anywhere. So THIS information was the NAIL in the coffin for my ever feeling like I fit.

How can I fit?

Where can I fit?

Then I found a place. It was with all the other special needs parents.....all the parents that felt that SAME struggle with grief. The parents that don't look too far down the road because it's too scary. I try not to think past the next week....month with Makily. If I look at five years from now I feel anxiety nearly take over me and even TYPING about it makes my heart pound.

In my search for people to "fit" with I reconnected with my friend Carrie. We had gone to High School together and her son was born with cerebral palsy. Then she passed away in one of the most shocking, horrifying and just senseless ways. Leaving Sean to try to pick up the peices and do it all on his own.

I stood back and I asked why.

I have developed so many relationships with other families of special needs children. I feel a sense of understanding and belonging I cant find elsewhere. On the other hand I have found that when I'm too close, and something negative happens to a child or family I have connected to that it sends me into such sadness. I want to fix it for them. Take away the agony they are feeling. Someone told me recently that I feel things TOO MUCH. I think this is true. I do. My emotions are stronger and more pronounced than anyone I know. I'm not sure why. I have always been this way. Allen jokes that nobody cries alone when I am around and that is the GOD'S HONEST TRUTH.

I remember sitting on my friend TJ's bed BAWLING with my friend Latena that had just lost her baby to a premature birth. She and I sifted through photos, hair clippings, a pillow and all the mementos that she had hoarded in the desperate attempt to always remember her first child. Why did this have to happen to her?

I have seen many Emanuel Syndrome babies and children die suddenly. Some struggling for months before their FIGHTING SPIRIT is not enough to win over their failing body that they were born in. Some of them are happy and playing, then dead the next morning. Their parents devastated to walk in and find their baby they have watched fight for years....gone. Another hole left that can never be filled.

A couple of years ago I posted about meeting a family that had a son born with Trisomy 18, little Caleb. They live in Ocala. Local. I met Caleb aka MIGHTY MOUSE and my breath was taken away. I remember holding him and realizing what a MOMENT that was for me. He was still a tiny guy and the way he breathed BROUGHT ME BACK to when Makily was his age. He sounded identical to her. I wanted to wave a magic wand and fix what was wrong with his breathing. I wanted to grab Jeannette in my arms and tell her she was going to get through it. I wanted to tell her all the things I wished someone would have grabbed me and told me when Makily was that age. I didnt though. I knew those things I wanted to tell her would only come with time. Instead I talked to the angel laying in my arms. I told him how perfect and amazing he was. I cherish that moment so much now. Caleb passed away August 29, 2011....a week ago today. The paper did an article and photos as they have followed his story since birth. I sat looking at the photos and feeling such sadness for this family. It brought me back to the times I've sat staring at Makily looking much like sweet Caleb did in the photos. Skin pale, eyes closed to slits, tube down the throat, machines beeping, IVs running, tethered to more wires than I could count.......wondering when I would be able to say ENOUGH is enough. Dreading the moment that Makily's body would decide enough was enough.

I will shamefully admit I had kept myself at arms length with them. I was afraid. Afraid Caleb would pass and that I couldn't handle it. Afraid it would overwhelm me with grief and uncertainty.....for us....for Makily. Afraid I would be unable to comfort Jeannette, his mother who lovingly and graciously took care of this angel for 29 months. She would have done it for 100 years....happily. Jeannette who's faith NEVER seemed to have wavered. Even in the times when Caleb lay sick and moaning in pain. Jeannette never questioned her faith. I admired that about her. I still do.

So my lesson learned here is this. I can't let my fear and grief cripple me. I can't at the end of the day say it was too hard so I sat down and watched from the sidelines. I can't hide from life and living. The times I am happiest is when I am putting myself out there. When I am taking a chance that YES I may get hurt but the experiences before the hurt outweighed the hurt, and that I have become a better person because of them. I have made decisions in my life I never would have expected to make since Makily was born. Some good, some bad, some made because I desperately have been looking for years to fill that "hole". I'm not perfect. Far from it. In fact some days I feel like I've been rolled in the mud and drug through a knot hole and that I'm desperately trying to wipe myself off........

I am trying to become a better person. This doesn't mean I am perfect or that I think I am better than anyone else. Just means I want to better me.....for Allen for Makily for Jakob.....and eys for myself too.

Dearest Caleb,

Mouse, you touched my life in ways that most adults would never be able to. YOU little one have taught me not to live in fear anymore. To live life to the fullest. To love without reservation, to experience EVERYTHING and to strive to be as perfect as your spirit is. Fly high Mighty Mouse, you are one of my hero's and I will never forget you.

Jeannette and Steven,

We love you so much and if there is ANYTHING we can do to lessen the load on your backs right now, say the word. I will never stop wishing for that magic wand to wave away all the pain you are feeling. Bless you both. Know that you were EXACTLY what Caleb needed and he was exactly what you needed.

In LOVING memory of

Caleb Nathaniel Adamyk

March 20, 2009 - August 29, 2011

29 Glorious months on this earth.

Rest in Peace Mighty Mouse, you are so missed.

The Highs of being Makily's Mom.

1. Each time she smiles is like the first time she smiled. We weren't even sure we would ever see her smile. To this day my heart still skips when she smiles.

2. I feel much the same way each time she laughs. She has the cutest, tiniest laugh. She *almost* sounds like a munchkin from the Wizard of Oz. Other times she just chuckles and other people may not even realize she's laughing. I do. Every time though. Her shoulders will go up and down, she'll have a huge grin on her face....and if you listen really closely you will hear her squeak in between chuckles. I find myself wanting to stop time each time she laughs. To bottle it, to carry it in a little box with me forever. To always have that perfect angelic part of her forever.

I just went back and read this paragraph. It occurred to me that maybe some of what I wrote sounded "stalkerish". Maybe like one of those overzealous, hovering mothers. How is it I know each sound, body movement and facial expression that my daughter exhibits when she is happy? How is it that I have somehow memorized these things without even knowing it or without it occurring to me? It is BECAUSE I live each day in fear that my child will leave this earth before me. It is because I never know if when I get up in the morning if Makily will still be with us. In the mornings I go to her room hopeful that all is well when I get into her room. I even have learned to push that so far back in my head that I ALMOST don't think about it and walk quickly into her room to get it over with. Like ripping off a band aid. I'm not sure if quick is better or not. My fear that a seizure will take her in her sleep makes me insane. So insane that she is SEVEN years old and I still have her on an apnea monitor for infants.

I memorized those things about Makily because we have always known that she may leave this world sooner than any of us want her to. Every thing she has accomplished to us has been AMAZING. Everything she does is amazing. SHE is amazing. All that could stop abruptly and all that will be left is all the incredibly changed people that she touched, and all the memories we have made with her.

There are so many more Highs of Being Makily's Mom. I will stop with just those two for now though. Why? Because those two things, make ANY of the low worth EVERY. SECOND.

I love you Makily.

Changes, Updates and More.

Changes:


Makily started having seizures again in February. The first one she had at age two nearly gave me a nervous breakdown. That was FIVE years ago. I had gotten comfortable. She was at school this time and I got a call from her teacher. All she said was "Trish, just come quick.", her voice was panicked. I hung up the phone and ran screaming for my friend Trish to get the Jakob (he was napping) and get in the car. I stupidly got in the drivers seat. Screaming and hysterically crying the whole way there. I remember saying "What if she stopped breathing....What if she is dying....What if we don't get there in time.....". Of course all the way there we were stopped by traffic lights, trains and every slow person in Ocala. When we came upon the train Trish asked me if I wanted her to drive and I got out and let her. Once we got to the school Makily was in the ambulance. She looked out of it. We had a horrible time getting an IV placed. My sister Deborah ended up having to do it although I'm sure that was hell on her to have to do.





The next one she had was AGAIN at school. This one was rougher. It went on for a total of seven minutes. They gave her rectal diastat at the three minute mark. The school nurse ended up having to give her rescue breaths before the Ambulance got there. We already had a neuro appt for the next day so she was monitored for a while at the ER and then sent home.





Neuro added a new medication, Keppra and has kept her on Topomax. Since then she has not had another one. Her EEG's still show frequent abnormal brain spikes though so this obviously is another worry on my mind.





Updates:





Jakob is coming along with his speech. It's slow going but he understands SO MUCH. Just hard for him to get it out. His impulsivity is worse and he is hard headed. He punched a girl in the face at school for no apparent reason. At times he bites, he banged on his bedroom window so much that it broke. We had done everything we could to get him to stop so when it broke we replaced it with plexi-glass so he won't get hurt. He CRAVES sensory stimulation so he is always jumping, running and rolling. All that being said he is a sweet kid. He loves to give hugs and kisses and can't give one without giving the other too. He is outgoing and friendly most times. We have a new chihuahua named Sally. We are desperately trying to get the two of them to be able to co-exit without killing each other. I'm not sure that Jakob understands the dog is NOT a toy so that's something we remind him of OFTEN.





Makily will be going into SECOND grade next year. Jakob will begin his second year of Pre-K. I'm hoping to see tons of growth from him this year as far as his speech and impulse control is concerned. We do have an appointment with a specialist coming up for him.





I went to a conference for families of children with Emanuel Syndrome. It was an awesome trip but tiring. I loved meeting all the kids, they each have a special place in my heart and always will. Makily did well on the trip. I was very proud of her. Everyone adored her and loved on her. There will be another conference next year in November in ORLANDO. I can't wait for that one and I hope I get to help plan it.





More:





As far as I go, I'm hanging in there. The last year has been challanging to say the least. I honestly haven't been the same since Makily had the seizures again in February. It was like a slap in the face of reality that I like to hide from. Since that time I have realized AGAIN that I will never be able to relax when it comes to her. Each day with her is a gift. I never know what to expect. It scares me. Two ES kids ended up being taken out of the hotel at the conference via ambulance for seizures. That sucked. I also have realized that Jakob is still far behind in his expressive language and if he is going to start "normal" Kindergarten when he turns five he really needs to progress this year. It's more and more apparant by his behaviors and speech delay that all the drugs and alcohol did effect his brain development in utero and so I've had to force myself to accept that I have TWO special needs kids and not one. I still have hope that if we just work with Jakob enough and support him enough that he will grow up and be able to live a normal life.





So there's my update. I will try to post more here, in fact I want to. I've been so down for so long now that it can't hurt. Maybe it will help.

For those that miss me/us.

As many of you know I freelance write for our local newspaper. I have been asked recently to begin blogging there. I had hesitated blogging there too much for fear my material would then be owned by someone else. I have seen been reassured this is not the case. I have a few entries up there and will be blogging there once or twice a week (or more depending on how much time I have). I may feature some old posts from here every now and then. Right now I am trying to play catch up as so much has been going on with our family. Sometimes I feel like I can't keep up. I hope to see you all there. Here is the OCALAMOM site link: OCALAMOM This is where my blog entries will be: MY BLOG ON OCALAMOM I am keeping my blogger open as there is so much material here. I may start blogging back here again eventually, I'm not sure. So keep this link too. I'm on facebook and that is so easy and quick to update that I have been using it a lot. There has been a lot going on with us as of late, Makily started having seizures again. It's been a whirlwind but we are managing it. Hope to see you all at the new site. Love, Trish

Would the WHY of it even matter anymore!?

*Disclaimer: I realize this is a come back post of sorts but it is seriously depressing. This is how I'm feeling lately and I know that writing these things out helps me IMMENSELY. Read at your own risk.*

I wish you could have been born a healthy little girl. I wish you didn't have to suffer and I wish it didn't end this way. I miss you my little Princess. --Roni Hughes to her angel Alayah.

I have struggled a lot the past year with WHY.

Obviously I will always question why Makily was born with Emanuel Syndrome. That is something that I will never understand. I think for me though the moment that I began to struggle with my faith and my belief in god is when I realized that no matter the WHY of it, nothing would ever justify Makily not having the life she deserves.

Even if God himself came down from Heaven and said "Patricia, Makily has Emanuel Syndrome because xyz." It still would not make me feel better.

I would still be angry at him for it.

As a person who was raised in church, that was baptized at MY request at age five, and that has prayed on my hands and knees for years, it's hard to grasp and admit you are angry at God and that at times you don't even know if he is or ever was there.

Just typing that made me cringe and I'm not even sure if I will have the guts to publish this post.

I think maybe I have seen too much. Too much pain, heartache and hurt. Too many INNOCENT children suffering, too many dying as their parents are left here...with empty arms and broken hearts.

The quote that started this post was about a baby girl that died Sunday evening. She was only a couple of months old, had Emanuel Syndrome and never was able to leave the hospital. Her mother was just 18. She handled the immense pressure of having a baby with all of the medical problems Alayah had better than I think I did when Makily was born and I was 26. I watched as Roni matured in what seemed like overnight.

Then Alayah died.

I want to know why God put Roni through that. Why would he allow sweet Alayah to suffer and endure all she did and then take her away?

...and again there is no answer that would justify it in my eyes. I doubt there is one for Roni and Alayah's Dad Thomas either.

My friend and soul sister Stephanie has a daughter Maia with Emanuel Syndrome. Maia of course was born with the myriad of problems that comes with ES. They've been through surgeries, procedures, doctors, illnesses etc etc etc. Maia began having rages and screaming fits for hours on end when she was about 10 or 11. She is now 15 and they have tried many medications to help her (along with the side effects of each medication), she's had MRI's, CT's, blood tests you name it. Stephanie has had doctors accuse her of just not wanting to deal with her "retarded child". Reality is that I have seen videos of these fits and Maia's rages and it absolutely breaks my heart.

They now think Maia has Limbic Rage.

It's basically a disorder in the mid brain caused by what I believe in Maia's case is a lack of oxygen to the brain for a period of time (and with our kids their airways and respiratory system are so fragile at birth they very well have gone without enough oxygen to their brains for periods of time during a crisis). Limbic Rage causes the exact symptoms that Maia has. Rage, screaming, anger, hallucinations, violence and the list goes on and on.

It's bad enough that Maia has Emanuel Syndrome. God...can you explain to me why ON TOP of that she has to have THIS disorder too? Can you imagine what it must be like for Maia when she goes through these rages? Can you imagine how confused and scared she must make herself? What about what it has been like for Stephanie and Martin to watch their little girl go from the happy giggly child she once was to the screaming, angry one that seems trapped in her own mind and body....unreachable.

As many of you know a friend of mine passed away two years ago. Carrie Hammer and I had known each other for years. Her son Brennan was born with severe cerebral palsy. She and her husband Sean dealt with numerous medical complications and hospitalizations. They did it together as team though. They were making the best of it. Then Carrie died in the car accident. She drowned trying to help Sean get the suction machine they needed to suction out Brennan's trache after he had gone under the water after the crash.

Why did God let that happen?

Sean is now left with three children one of which is very medically fragile. I can't imagine the challenge he faces EVERY. SINGLE. DAY. I have the utmost respect for him because he has just kept going. He continues to get up every day and take care of those kids when I am sure there are days he would rather stay in bed and not deal with anything......

....and again I am not sure there could be a reason why that God could give me that would make that situation "okay" in my eyes.

I could go on and on with situations like this. I won't though because it would just be depressing and I think this post is depressing enough as it is.

Great come back post btw huh? Now all my readers will be running to the nearest window and wanting to hurl themselves out of it. SORRY BOUT THAT GUYS, this is where I'm at right now.

I've heard so many smarmy lines since I had Makily. Cliches that at one time actually DID make me feel better.

"Oh your a special person, you are so strong, God wouldn't have given her to you if he didn't think you could handle it"

Bullshit.

How many babies are born to drug addicted mothers? The baby is then tossed into foster care and sometimes are bounced back and forth. Obviously those mother's couldn't handle be mother's to those babies and God gave them to them anyway.

I am no better or stronger than your average person. I am Makily's mother and am only doing what a "normal" parent does when thrown into a situation like this. I had no choice and neither did Allen. It is what it is and we had no option OTHER THAN to deal with it and try to make the best of it. Believe me there were times I didn't want to deal with it and would have rather laid down and died. Thankfully Allen, my family, medication and my love for Makily kept me from doing that.

"Everything happens for a reason, THERE IS a reason Makily has Emanuel Syndrome look at all the lives she has touched and people she has changed".

I agree with this. Makily has touched many people and changed many lives, probably more than I will ever know or be able to grasp in my lifetime. That being said WHY SHOULD MAKILY have to suffer, endure and be cheated out of so many experiences to change someone else? She deserves to experience EVERYTHING that is good in this world and she won't. I was at the park with her the other day pushing her on the swing. I found myself scanning the place for anything else she physically would be able to do. There was nothing. Then I started thinking how I wish I could figure out a way to strap her to me, then I would do all those things and it would be like SHE was getting to experience them (although I'm sure I'd look like an idiot sliding down the toddler slide with a six year old strapped to me). I suddenly realized how sad and depressing that thought was and had to fight back tears.

So my friends this is one of the reasons I have not been able to write. I prided myself for so long on being able to be positive (mostly) about Makily's having Emanuel Syndrome. I wanted to help other parents see the good side of things. For a while now though, I just have not felt that I could BE the positive inspirational person I wanted to be. I can't pretend to understand and be okay with all these things. That's just not me.

Maybe writing THESE feelings out though will help someone else and maybe someone will say something in response to this entry that will be a light bulb moment for me.

I don't know.

I doubt it.

Jakob's Diagnosis.

We knew some of Jakob's prenatal history the day we decided to welcome him into our home.





I was scared to death as we were taking a baby I had originally said in our "pre- fostering rules" we wouldn't take.

Jakob's mom had been on methadone during his pregnancy and he went through withdrawl at birth.

I think the ONLY thing that swayed me away from our "no meth baby" rule was that he was four months old and through the worst of the withdrawls at that point. We had also been waiting for so long and I desperately wanted to go swoop this baby up the moment they called us about him. I wouldnt take it back for one second.





As time went on I slowly started finding out other things Jakob's bio mom did while she was pregnant with him. None of it swayed our love for him or our decision (almost from the day he came to us) to adopt him if he became available.





Jakob was exposed to alcohol during the entire pregnancy.





He was also exposed to crack and cocaine in the last trimester.





Jakob's speech has been delayed for some time. He's been in Early Steps since he was a year old and Early Intervention pre-school since right after he turned two. He also gets speech therapy privately once a week.





Jakob is a very BUSY little boy. He does have some pretty WICKED tantrums when he does not get his way and they can last a while. He has trouble paying attention and can't attend to anything for very long unless it's something HE is choosing to attend to.

All of these things are typical two year old behavior....I always have a hard time gauging how he should be acting because Makily was never a typical two year old.





Due to the alcohol exposure the adoption agency set up an appt for Jakob to be evaluated for Fetal Alcohol Syndrome. It takes months to get in to them which is why we just went for his evaluation last week.





I was impressed with the FAS clinic team. There was a child psychologist, a speech therapist, an occupational therapist and a physical therapist. They had me fill out questionaire's on Jakob's development and behavior. They each evaluated him individually and as a team. They also took pictures of Jakob's profile and straight on shots. These pictures were loaded into a computer program to intricately measure his features . Children with FAS have a handful of facial features that are sometimes commonly seen.





In the end they took us (me, Jakob and both my sisters who so NICELY both rode along with us for the 2 hour trip) to a conference room and gave their opinions.





They did not diagnose Jakob with Fetal Alcohol Syndrome or Effect.





He was diagnosed with "Sentinel Physical Findings Static Encephalopathy alcohol exposed".





So what the heck does all that mean?





Fetal Alcohol Syndrome has a spectrum much like Austism does. The diganosis he has been given falls under that spectrum and basically means that during development parts of his brain were damaged and/or did not form correctly due to the alcohol exposure. They explained that Jakob has some sensory issues (which I really didn't pick up on until they were pointed out to me, I'm used to seeing such SEVERE sensory issues with Makily that I didn't pick up on the small quirks Jakob was exhibiting). Most of the sensory issues they found were oral motor related. They also feel he would benefit from deep tissues massage, a trampoline (a small one for kids) to give him that deep stimulation to his whole body. They said he is about a year behind right now. We have only a hand full of words and lots of frustration because he just isn't able to tell us what he wants. It's getting better and he is making LOTS of progress. He is signing more when he wants a drink or a snack.





He will consistently say Mama, Daddy, bye, uh oh, no, yeh...and "HOLLA" (lol srsly he says HOLLA!) . At times he will try and repeat a word you said but it usually comes out garbled. He understands EVERYTHING you say to him though. I can say "Jakob give mommy the remote". He'll go get the remote and hand it to me, same thing with just about anything in the house. He said pretty over and over again when looking at a picture of Makily the other day but I can't get him to say it now. I do think part of his delay is because he is stubborn and does not like to be told what to do. He is very good to Makily, he LOVES her and will sit next to her on the couch, sometimes will get on her lap and BEAM if she shows him ANY form of attention. Usually she pats him over and over on the head or back and he just giggles. He holds her hand when they are in the car (that makes me teary just typing it), and when she drops her toy he will run to pick it up and give it back to her (most of the time he gives it back to her lol). When we stand her up he runs over and throws his arms around her and just stands there hugging her. She in turn patts his head or puts her hands around his neck and he thinks that's just great (hey he doesnt realize she's actually trying to strangle him lol).





They told us that children with FAS disorders typically have attention problems, impulse control and behavioral concerns. Of course the severity can't be known at this point. It may take years before we know exactly how this is all going to effect him. They did suggest we evaluate him for ADHD when he is five or six. FAS kids also usually need some sort of ADHD medication to help them focus at school and make learning easier for them.





So how do I feel about all of this?





I already knew it. I knew he would likely have issues from his prenatal history. I can't say I don't care because that's not true. I care, I do. In fact when they started talking about brain damage and saying words like "static encephalopathy" it made me cry. I was sad for HIM. Sad that he has these extra challenges in front of him.....and they all could have been prevented.





I think what I am trying to say is that my love for him is no different then before he had a "label". He is still MY SON. I love him just like I love Makily and we will do everything we can to help him.





I will say though that never in my wildest dreams did I think I would have one child with a severe genetic disorder and another one with alcohol induced status encephalopathy. I really never dreamed that I could have two children with those issues and be sane.





Maybe I am not sane anymore and that is why I am handling it all so well?!





Maybe part of me is convinced that all of this is just typical two year old behavior and by the time he starts kindergarten he will be totally caught up and I won't see any lasting issues at all from the alcohol exposure?





Maybe I'm in denial.





I'm not sure.

Edna update....FINALLY!

Huge apology to all my bloggies. I have really slacked and all the emails asking about how I/We are have really touched me. Sometimes I don't realize how many people read my blog and care about us. It's when I am away from my blog for a while and start getting emails asking where and how we are that it hits me. It's amazing to me that people we have never met or do not know personally have love and care for our family. Thank you all. I am so sorry and yet again I will try to start blogging again regularly.

Ok so on to Edna.

Edna IS a brain tumor.

Here is her picture. She's the big white blob on the right.

Do we know EXACTLY what she is even after seeing the Neurologist?

No.

I saw Dr. Disclafante. He was EXTREMELY nice. It's not common for me to see a doctor (and with Makily we see lots of them) and immediately click and like them but I did with him. Very down to earth and to the point man. He looked at the x-rays and said he feels what I have is a Choriod Plexus Papilloma. This is NOT the one that I assumed was related to my 11,22 balanced genetic translocation. He said it is VERY, VERY unlikely that it is cancerous.

He said there is no way of knowing for sure what exactly it is without doing one of two things.

1. Brain surgery to completely remove the tumor.

2. A biopsy to test the cells in the tumor.

*blink*

*blink*

Of course both of these options well...SUCK.

He and I both agreed that since the tumor is not causing any neurological symptoms (seizures, headaches, nausea, blurred vision, memory loss....okay well maybe it IS causing the memory loss....what were we just talking about? ha ha) that we will just wait and watch. I will have a follow up MRI in a month (three months after the initial MRI) to see if Edna (aka my brain tumor) is growing and if she IS growing how much and how fast. The doctor does NOT feel she is going to be growing very fast as he also believes it's likely I've had Edna all of my life.

He said that I may not ever have any problems from her but he can't say for sure until the follow up MRI to see if she is growing and how fast.

So basically YES I have a brain tumor...her name is Edna and right now it seems as though Edna is a friendly brain tumor and I get to keep her.

**btw I am not exactly sure why my spacing is all crazy. I tried to fix it but it keeps cramming everything together. STrange!*

Jakob likes 911 and "I SWEAR OFFICER I'M NOT A BATTERED WIFE"!

***If you have not read my LAST ENTRY you should read that to understand this one completely***


The day after the accident Allen and I got new cell phones.

Blackberry Curves, LOVE THEM.

Allen took the SIM card out of my old phone and gave it to Jakob. HE LOVES a phone and so Allen thought WOW this will remedy the problem we have with him always trying to get ours.

What we didn't realize though was that EVEN THOUGH there was no SIM card in the phone....you could still dial 911.

*sigh*

Jakob was walking around the house with his phone when I could have sworn I heard someone talking. I ran to him, grabbed the phone and someone said:

"911 what is your Emergency"?

Here's how our conversation went:

ME: OMG Ma'am I'm so sorry, my son dialed 911, everything is fine.

HER: What is your address, I need to send an officer?

ME: Oh no ma'am NO NEED FOR THAT....my two year old dialed you, see we got these new phones and took the SIM card out of the old one and.......

HER: Right, he can still dial 911 with the phone though...what is your address?

ME: SIGH....Fine, my address is.............But really you don't have to send anyone, my son dialed 911.......I tried to tell...

HER: An officer will be out shortly.

GREAT

JUST

GREAT!

About fifteen minutes later there is a knock on my door. I open the blinds and sure enough...it's a cop.

SIGH.

I open the door and immediately start stuttering saying "I'm so sorry officer, my son dialed 911 and see we got these new phones and we didn't realize if you took out the SIM card in the old............"

All the while he is staring at my eye and forehead.....I guess because it looked like THIS:



Heh...heh.....yeh.

To make matters worse when I think I am in trouble the more I try to explain something away whether I am guilty or not (and you know I am never guilty;-) I MAKE MYSELF SOUND LIKE THE BIGGEST LIAR EVER.

The officer waits for me to stop stuttering and yammering and says:

"What happened to your head and your eye".

To which again I begin stuttering and stammering saying "Oh this, I was in a wreck yesterday, it's actually kind of funny that you are here and I am dealing with the police two days in a row, I swear this is from the accident, did you see the STONE HILL sign up there...well I did that....."

Then he demands the police report from the accident.

When I handed it to him, he starts to read it, his face lights up and he says:

"OMG YOU ARE THE LADY THAT GOT REAR ENDED BY FLORIDA HIGHWAY PATROL YESTERDAY"?

sigh

"Oh yes, that was me, how did you know about that"?

He then explains that they "all" knew about it and that everyone was giving the officer a hard time and that I was the "Poor Mini Van Mamma".

LOVELY.

He then asked to see Jakob and left with a big grin on his face.

A week later I was walking into the gym. That particular day I was tired of wearing my sunglasses on the treadmill so I braved it with my black eye out for all to see. I was walking to the treadmill when I noticed a man staring at me. The closer I got the more he stared, which I assumed was because I had a black eye. Then he smiled very big, jumped off of his treadmill, ran over to me and exclaimed "OMG HOW ARE YOU", THEN HE HUGGED ME! Initially I had no idea who this guy was and was about to PUNCH HIM when I realized.....THIS IS THE GUY THAT REAR ENDED ME!

He said he thought it was me when I walked in but that when he saw that black eye HE KNEW IT HAD TO BE ME. We joked around and he told me he had gotten nothing but grief from his fellow officers about the accident. The officer that had come to my door the week before called him after he left my house and ragged on him saying "Dude you should really feel bad, that poor lady looks like someone beat her up, I can't believe you hit poor Mini Van Mamma".

OY.

Ocala, it's a small town.

The Wreck.......and what's that in my brain!?

In February I was in a car accident.



I had dropped the kids off at school, gone to the gym and was coming home. I literally was turning INTO my subdivision. Mid turn I was rear ended. I lost control, and went off road straight into the neighbors yard. The drop from the road to yard was un even so the van shifted to the left and my head hit the drivers side door window.....pretty hard. I felt the impact of that but didn't have time to think because then I ran over our subdivision sign which deployed the air bags. When that happened all I could see in front of me was well...airbag of course and A HOUSE that I was going straight towards. I went to hit the brakes and in my panic and confusion (I had just hit my head AND had an airbag in front of me) hit the gas. SIGH. Luckily I got it together enough to hit the brake and my van literally came to a stop five feet from my neighbor's front door.

My Trajectory...scary I say!




When the van came to a halt, I saw smoke, panicked thinking it was on fire and got out. It was just barely raining. I sat down on the ground a few feet from the van and that's when I noticed a red SUV across the street parked.



The lady that lived in the house opened her door (in a mumu and curlers btw lol), looked shocked that there was a van in her front yard.......then she noticed me sitting on the ground and said "OMG WHAT HAPPENED!"



She ran back in and called 911.



A man got out of the red SUV ran across the street. He sat down next to me and asked if I was okay. I was shaking and hyperventilating at this point. I had been trying to catch my breath but was so shaken and confused. Between gasps I told him I think I am okay but my head really was hurting. He looked at my forehead and said "Well you do have quite a goose egg there". He told me to try to slow my breathing down. Then looked me over. He saw burns on my arms and explained they were from the air bag. I told him maybe we should move that I thought there may be a fire in the van and he said no the smoke was from the airbags too.



Then he did something that was very surprising.



He put his arm around me and said:



"You realize this is all my fault, I rear ended you I am so sorry. I am an under cover Florida Highway Patrolman and that's an unmarked car, I already called this in before I even got out".



I just started crying. I am not sure if it was out of relief that this was an honest man. He was a cop that wasn't going to try and pin the blame on me somehow.



The more he talked to me the more I started to calm down. He had his arm around me most of the time saying how sorry he was and talking me through slowing my breathing down.



The ambulance arrived. The paramedics were SO nice and they advised I go ahead and take a trip with them to the ER because of the bump on my head. I quickly told them my sister was a paramedic and to call her. By the time they had me loaded up in the ambulance I had calmed down and was actually joking with the paramedics. I apologized for how bad I must have smelled. I had just come from the gym and told them had I known they were going to pick me up I would have showered first. They told me that I didn't smell that made me happy! LOL

About an hour after the accident.


Once in the ER, the doctor and nurses were surrounding me asking questions, taking off my shirt, putting a gown on me. I was hoping they would leave at least for a second. I had worn a waist slimmer belt to work out with . It was all sweaty and nasty and I didn't want to say HEY I'M NASTY....don't mind me taking off my nasty fat girl waist slimmer belt LOL.



The doctor told the nurses to bring in the ultrasound machine so he could scan my belly. I'm thinking okay here's my chance, they will leave....NOPE. She rolled it right it and he pulled up my gown to reveal my sweaty belt.



LOL



So I say "Uhm, I'm normally a clean, fresh smelling gal, but I was coming from the gym and this belt is supposed to make you lose more weight in your tummy and so it's sweaty and gross".



*blink*



*blink*



The doctor looks at me straight faced and says...."Well can you take it off so I can scan your belly".



HAHAHAHHAHAAA



I ripped it off and was mortified to see the nasty sweat on my stomach.



SHOOOT ME.



He didn't even flinch, scanned my tummy and said all was fine.



They sent me for a CT scan a few minutes later and made me pee in a cup.

I was discharged the same day with bumps, scrapes and bruises. My knee and my head were hurt and the van was totalled but knowing it could have been much worse I was relieved.

Day three....you should see the other guy.


My thigh (omg how fat does my leg look!)


My knee



Upon discharge the doctor explained that while my CT did not find any bleeds or problems from the accident they did see an "asymmetrical enlargement of the choroid plexus". He said I should see my primary doctor and have an MRI to be on the safe side.

I didn't think too much of it, immediately chalked it up to possibly being something to do with my 11,22 balanced chromosomal translocation. A normal abnormal....no big deal.

I had the MRI two weeks ago. Really I only did it because I thought it would be interesting to see what was in my brain LOL. I wasn't concerned.

The doctor called me Thursday and says there is in fact a mass in my head. He explained he is referring me to Neurosurgery.

*blink*

*blink*

I got a copy of the report. It suggests that the mass is one of three things.

1. Choriod Plexus Papilloma

2. Hemangioma

3. Meningioma

I am pretty sure it's a Meningioma. Reason being is because under causes in the link above it states:

The most frequent genetic mutations involved in meningiomas are inactivation mutations in the neurofibromatosis 2 gene (merlin) on chromosome 22q.

If you look farther down under References number four says this:

^ Lekanne Deprez RH, Riegman PH, Groen NA, et al. (April 1995). "Cloning and characterization of MN1, a gene from chromosome 22q11, which is disrupted by a balanced translocation in a meningioma". Oncogene 10 (8): 1521–8. PMID 7731706

While I don't quite know what all of that means, it mentioned balanced translocations and chromomsomes 11 and 22. I have a balanced 11,22 translocation so........

My friend Stephanie the originator of the http://www.c22c.com/ website and support group has forwarded this information to Dr. Emanuel herself to see if they have any information about this and if she thinks the two are in fact related.

All that being said, I'm a smidge nervous. Not like one would imagine one would be when they have been told they have a mass....a gasp...TUMOR in their brain. I don't know if it's denial or ignorance on my part (I do have a brain tumor you know?) but I am not freaking out about this. I think I have a hard time believing I could possibly have brain cancer (see it was weird typing that)? I am not sure why because I mean.....I do have a little girl that only had a six percent chance of being born and she is here soo.....

My hope is that when we see the Neurosurgeon he will just suggest a PET SCAN and then just monitor it from there. I don't want anyone poking around in my brain, I mean I really don't want anyone to mess with my sparkling personality right?

We have decided to name my tumor Edna. She is old.....as the MRI states there are some calcification's which means it's been there for a while. I intend on blaming EVERY mistake I make from here on out on Edna.....

ALLEN: Trish you started the baby's bath water but you didn't pull up the stopper!

ME: Give me a break I DO HAVE A BRAIN TUMOR YOU KNOW!!!

I'll keep you posted on Edna and I.

BELOW IS THE FULL REPORT FROM MY MRI for those that like that sort of thing:

MRI OF THE BRAIN WITHOUT AND WITH CONTRAST

HISTORY: Mass in the posterior left lateral ventricle seen on a CT of the head from 2-12-10.

CREATININE LEVEL: Creatinine lab testing was performed at Medical Imaging Center of Ocala to establish the patient's estimated glomerular filtration rate (eGFR) with the results being:
Creatinine level 0.9, eGFR 73.

FINDINGS: Multiplanar, multipsequence MRI of the brain was performed without and after intravenous administration of 18 mL of Magnevist. As noted on the CT scan, there is a rounded mass in the choroid plexus in the occipital horn of the left lateral ventricle. This mass measures 1.6 x 1.5 cm in the axial plane and 1.6 cm in the cephalocaudal dimension. It contains a small amount of calcification. It demonstrates a significant amount of enhancement and has slightly increased signal on the T2-weighted images. It also has slightly increased signal on the diffusion weighted images. It does not appear to invade the surrounding brain parenchyma. No surrounding edema. There is no hydrocephalus. No additional masses are seen. The brainstem and cerebellum appear unremarkable. Incidentally noted, there is mucosal thickening in the right maxillary and ethmoid sinuses. The findings suggest sinusitis.

IMPRESSION: Partially calcified, enhancing mass is seen in the choroid plexus in the occipital horn of the left lateral ventricle. Diagnostic considerations would include a neoplastic process such as a choroid plexus papilloma or a meningioma. A nonneopastic process such as a hemangioma could have a similar appearance. Neurosurgical consultation is recommended.

HAPPY SIXTH BIRTHDAY MY GIRL.

She is six today.

Six.

My Dearest Makily,

I am in awe of you. I think I always have been. I didn't know such strength and resilience could exist in such a small and frail little girl. Some children say how much their parents have made them who they are today. I have to say YOU have made ME who I AM today. As your mother I am supposed to teach you everything. Instead you have taught me more then I ever dreamed a child of six years and no words ever could. Watching you struggle and knowing your life is not what you deserve has been the hardest thing I have ever done. That being said YOU ARE the BEST thing that ever happened to me. I wouldn't take any of it back . I would do it all again. You are the light in a dark room, your laugh warms the coldest heart. I am so proud to be your mother. Thank you for choosing me.

I love you more then I could ever describe.

Happy Birthday my angel.

Love
Mommy

Makily's Youtube Channel:
http://www.youtube.com/user/patyrish

Makily's Life Video:
http://www.youtube.com/watch?v=RUoWKPJlw-U

Crying over Cupcakes.

Yesterday Makily's teacher asked if I was bringing anything to the school special like ice cream or cupcakes for Makily's birthday.

I hadn't thought about it really and immediately felt like a crappy parent.

I didn't occur to me though since Makily does not eat.

I told her that I would and she gave me suggestions.

I picked Jakob up from school today and we went to Walmart. I picked out some mini cupcakes and headed over to the health and beauty section to get a few things. All the while I was fighting back tears.....over cupcakes.....

I was buying cupcakes for Makily's birthday. I bought them for her to share with her classmates in celebration.

Makily can't and likely won't ever eat a cupcake.

Insert anxiety attack in the middle of the deodorant aisle.

I could feel the tears welling in my eyes.

I hate MARCH.

I got back to the car, called Allen and cried my eyes out all the way to the school to pick Makily up. I wish I could just let go of the past and what's been lost and move on. Most of the time I think I have but birthdays almost kill me every year. I think with Jakob's adoption I had so much going on and was distracted so I didn't have time to think about it much. Now it's here and I can't avoid it.

Too much pain, too many memories and the reminder of how much has been lost.

I hate that her birthday does not signify a happy joyous event for me.

It ALWAYS takes me back to that horrifying night when she was born.

The sound of her first cries will never leave me. I think I knew then before I had even really seen her that something was wrong. She sounded more like a kitten then a newborn. I can still see her eyes wide, huge and blue........she was struggling to get air into her tiny lungs. I remember holding her in my arms the first time, watching her trachea completely sink into the back of her neck, she was pulling so hard to try to breathe. She would attempt to cry in between breaths and it was again, like a kitten. Her limp body, the blue around her lips, the extra skin on her face, the monitors beeping that she wasn't getting enough air.

The look on Allen's face.

Seeing everyone else's faces filled with worry, not just my family members, but the doctors and nurses.

There was no mistaken....something was very wrong.

Where was the healthy 8 lb baby girl I was supposed to be having?

My head was spinning while I desperately tried to act like I was happy in front of everyone. I mean what kind of mother would I be if I showed them all how sad I was right now?

I recall the nausea hitting me hard when I realized that something was very wrong with this baby in my arms. Inside I wanted to put her down and run out of there. I wanted to run away from this awful reality.

These images will never leave me.

I will carry them always.

They have made me who I am.

They have strengthened me.

Remembering it all though.....every year.....sure is hard.

I love you Makily.

Makily Update.

I haven't updated on her in a bit so I figured I would.

She's had a runny nose since the New Year. We are on her third round of antibiotics and I *think* it may be clearing. We started out giving her Omnicef the first two rounds and she had RED poop for weeks, scared the school half to death. I admit the first time it happened on my watch it scared me too. I thought for sure she started her period (and just about shot myself in the face) but it's just a side effect of Omnicef turns your poop red. She had a double ear infection but luckily that cleared up on the first round of meds.

She's loving school as always. Kindergarten has been fun for her. She is walking with TONS OF HELP. I have to stand behind her, hold her arms bent at the waist and help her shift her weight. She takes steps, one foot after the other, she will not do this though until you stand her up and initiate it. She refuses to use a walker, does NOT want to hold onto it and when they try to get it to move with it, it's not very productive. I'm not sure why she is so against the walker other then she isn't thrilled with having to hold on, maybe a sensory thing still with her hands? She's lifting up her arms for the teacher to put her tray on the wheelchair now. She'll lay on her belly on a wedge for quite some time at school, for some reason she acts like I am killing her when I do it here at home though.

She had her first real eye doctor's appointment last week. It was a challenge but it went well. She kicked the nurse for putting drops in her eyes. I made sure to warn the doctor ahead of time that she's a kicker when she's mad and he should protect anything important to him! LOL. In the end he said her eyes/vision looks great. She's near sighted like me....in fact my and her vision is exactly the same. Crazy huh? No glasses are needed right now he said since she won't be driving any time soon (lol).

She's growing up fast and it's killing me. She's 35 lbs and getting taller by the minute. Her legs are so long and I'm not sure where she gets that from. We are all short in this family! I am sad to say that it's getting increasingly harder for me to carry her and lift her. She no longer fits in the double stroller. So I have been creative when I am out with the kids. Sometimes I will put her in the back of the cart and Jakob in the front. I just bought a larger jogging stroller so I hope that will last us for a while. We have the wheelchair but we leave that at the school. I miss the days of just being able to carry her indefinitely on my hip without a second thought. I don't want her to get bigger and grow up.

We are due for a follow up with Neuro, ENT and Cardiology. I am trying to get them all scheduled for the same day or maybe two days back to back so we won't have to drive back and forth and back and forth to Orlando.

It's hard to believe she will be six years old in just three days. So much has happened and I look back and think WOW what a whirlwind. I am so happy to know that we can just relax now. Medically speaking Makily is in a great place. While I know I can never TOTALLY let my guard down with her it's nice to be where we are with her. She's happy and healthy right now, has been for a while and I am so grateful.

We did some Spring cleaning over the weekend and I went through "the drawers". I had two of Makily's dresser drawers filled with mementos from her birth, hospitalizations, illnesses, clothes, pictures etc. I have avoided going through it and getting rid of some of the things I didn't need that were not important. I had tried in the past to go through it and my tears always stopped me. I got rid of a lot of things (a bag of pink jelly beans from six years ago, old envelopes, hospital bills and paper work).

I did happen upon the outfit I had purchased to bring her home from the hospital in. I saw it, held it and just cried. I remember buying it at Sears when I was about eight months pregnant. I was sad she couldn't wear it to come home in. In fact she didn't wear it until she was nearly nine months old. That's how small she was for so long. I guess that outfit represented the hopes, dreams and life I had before we knew anything was wrong. It brought back memories that I knew it would. This is a tough time of year for me. Her birthday is always hard. I can't help but remember how awful that first year was....especially the first six months.

Jakob's adoption has healed many hurts I have had over the years but there will ALWAYS be wounds that I carry.

I will always want more for Makily.

That will never go away.

I will always wonder what might have been for her.

I love you Makily, my angel, my teacher, my hero.....forever.

The LONG road to Jakob's adoption.

I knew going into fostering it was going to be emotionally trying. More so because we were going into it DESPERATELY wanting to adopt.



I prepared myself.....I thought.



I had no idea how quickly I would fall in love with Jakob. It was literally the second I saw him. He smiled at me, they placed him in my arms and I was hooked.



In my heart he was already mine.



Does this make me a bad foster parent?



Probably.



Our license expires next month.



We are not re licensing.



While our family is complete and I BY NO MEANS want another child part of me is sad that we will not be welcoming any more children into our home for respite.



There are several reasons why.



First and foremost is that emotionally it is TOO HARD.

The emotional aspect is made worse by the fact that those paid to ensure that the child's best interests are met DO NOT CARE.

Unfortunately one of his social workers was HORRENDOUS. We were DRUG through hell and back at one point because of her. She lied often, even in court, straight to the judges face. There are many dirty people in the system. A few in particular nearly brought me to my knees. Having to sit in a court room the and listen to the person who is supposed to be looking out for the best interest of Jakob LIE through her teeth was infuriating.



When things were at their worst I wrote a letter. The letter was addressed to the head of the foster agency, the head of the agency the social worker worked for and everyone else involved in the case AND their higher ups. I detailed every mistake being made, lie that was told with dates and times. Explained why I was so afraid for Jakob. That if his parents TRULY and honestly had gotten it together I would have been able to support reunification. I explained that things were being covered up to the judge so they could reunify. The "counselor" (and I use that term very loosely) assigned to provide parenting, substance abuse and anger management to Jakob's father was a total and complete moron. At one staffing she stuttered through the entire thing and it was obvious she had no idea exactly WHAT she had been doing and what treatment she actually had provided. Finally she admitted she had not really done much substance abuse counseling with him because she felt he didn't need it. This was interesting to hear because SHE did his initial evaluation AND RECOMMENDED substance abuse treatment. She also eventually admitted that she had done MAYBE 6-8 sessions with him in a year......he kept missing or no showing. The lies were apparent and no one seemed to care. It was being brushed under the rug. Jakob's biological mother and father had pretty severe substance abuse problems. His father had no where to live half the time, his mother had left the state six months prior, the father was ordered drug testing and to AA and to stop drinking. He skirted every random drug test, said he went to AA but could never prove it and when he did take a drug test the social worker warned him THREE days ahead of time. When he DID go in for the test on a MONDAY MORNING all he was given was a breathalyzer. The social worker told the judge he had taken a RANDOM drug screen and passed. LIE. He admitted openly in court he was still drinking, and they STILL gave him an additional three months on his case plan....he had already had a year at that point.



My letter detailing everything was not well received. Jakob's social worker who I'll call DUMB ASS came to my house a week later. She told me her supervisor who I'll call THE BITCH DID NOT like my letter. She was angry. She had instructed DUMB ASS to do yet another search for relatives when she had already done three. She also advised her to have another relative appeal her home study denial (denial because she had an ex con living in her house AND prior child neglect charges). She told DUMB ASS she was angry and wanted Jakob taken from our home and did NOT want us to adopt him. I find it incredibly sad THE BITCH was going to try to move mountains to take Jakob from us and would rather him live with someone with prior child neglect charges. Did she not see that she was not only punishing me but that this would have SCARRED Jakob for life? She obviously could have cared less. This woman NEVER ONCE called me. Never once did she call to find out why I was so upset, to try and explain things or to ask for further documentation. She was angry because not only did I point out DUMB ASSES mistakes, I had pointed out the fact that she knew nothing about any of it to all of her colleagues that I had copied the email to. To this day I have never seen or spoken to her.



When this happened I nearly lost my mind. I finally just threw up my hands. I remember telling my mother, they want me to just roll over and take it so I guess at this point I have no other choice. So instead of fighting, I got quiet. I cried a lot. I put up with MORE and I wondered why. I wondered how I was going to live if they took him from me. What was I going to do if they DID reunify him with his father that WAS STILL drinking. God forbid he drive with Jakob in the back seat. The thought of it made me physically sick. What would happen if they lifted the denial on the relative. What if they sent him hundreds of miles away to live with a relative that saw him as nothing but a paycheck

The only person besides Allen and I that seemed to care and THAT SAW through the lies was the Guardian ad Litem and I am so grateful to her. I am not sure what would have happened had she not been involved and speaking up for Jakob. No one cared what we thought or how we felt. We were just the "foster parents".

Fate stepped in.

His father was arrested, released and left the state.

We have never seen him again.

Both his parents rights were terminated in July of 2009. I had to testify at the hearing. Neither of his parents attended but his father did participate via phone. I was incredibly nervous. I had not spoken to Jakob's father in six months. I had never testified in court and had no idea what I was going to be asked. Both my sisters came with me and while I was waiting to testify, my face went numb and so did my fingers. I looked at my sister and said I think I am having a stroke. I imagine my blood pressure was just incredibly high. I was asked simple questions about Jakob and so that was a relief. There were quite a few VERY sad moments during the hearing. One in particular was when the attorney asked the social worker if Jakob would know who either of his parents were if they walked into the room. While everyone in the court room knew he wouldn't, it was a sad thing to admit, especially knowing his biological father was on the phone.

Jakobs case was transferred to adoptions at the end of July 2009. His case worker came to the house once, then was fired a month or so later. We went without a case worker for a month or so and then the supervisor started coming to see Jakob. NOTHING was done to move towards finalizing his adoption UNTIL DECEMBER. The original agency's contract expired and was not renewed, it was transferred to a new agency and so I guess the old agency didn't feel the need to work on the adoption as they felt the new agency could deal with it. I went into the new office the DAY the new agency took over with Jakob in tow. I introduced myself to his case worker, explained we wanted things done and asked what else I could do to expedite the process. It took three and a half more months to finalize things....and that was ONLY because I faithfully called EVERY SINGLE MONDAY and said "how are things going, are we closer yet, have you turned in everything"? I was not impressed with this social worker either. Not once did she ever come through on dates she promised. She promised A LOT and delivered little. I finally told her to please STOP giving me dates because she has never followed through since I had known her. Harsh I know but we had been waiting for a long time and I wanted things DONE. She and I had some pretty tense words on more then one occasion.

Last Wednesday we went to the adoption attorney's house to sign some papers. We were originally told once the papers were filed we would get a court date in two weeks. We signed the papers and the attorney asked if we could do this "tomorrow". I said "do what"? He explained that he had two adoptions the next day at around 3 and would like to squeeze us in with them if the court would allow it. We said we would do whatever we needed to arrange our schedule. He called the court house in front of us and they agreed. WE WERE ELATED.

I am so grateful that it is all over with. I look at my kids and I melt. We didn't realize when we started trying to build our family EIGHT years ago that the road would be this long. We had no idea the toll it would take on us. We have fought for both of our kids for so long that it is nice to be able to just relax and just be a family.

We are so blessed.

More to come.