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.