And now A Moment At Big Lots....with Trish the Great.

So I picked Jakob up from school today. I had to go to Big Lots to get shipping stuff because I sold some bibs.

As we are walking throughout the store Jakob and I are talking. I understand him about 75% of the time. When I don't know what he is saying I will reply with something like "Oh reallly?" or "Oh okay I see". This used to always work but he recently has realized that my replies don't always match his questions or statements. He will say "Mommy, NO...." and then repeat whatever it is he is trying to say about 800 times. Sometimes this ends in a tantrum (him not me) and others I will distract him with something else OR I'll actually figure out what he is saying.

I often wonder what other people must think when they see me talking back, with interest to a kid that to them is just mumbling gibberish.

So I get to the register after shopping for about a half an hour. Jakob was in the back of the buggy "hiding" under the pillows I was buying. He would get under them and then say "Mommy I hide"....that's my cue to say "Where's Jakob?" to which HYSTERICAL LAUGHTER ensues. Yes he STILL loves this game...and YES he is terrible at hiding.

As the checker was ringing up my items the woman behind me said

"Ma'am you are really good with him, it's so sad these days I usually see parents out with their kids and they are so terrible and hateful to them. It's nice to see someone who loves her kid".

It took me back for a moment because seeings as all we have been through the last month it was ironic to me that someone THAT DID NOT know me was telling me that I was a good mom. I honestly got choked up.

I told the lady thank you and that Jakob was a much loved, much wanted and waited for little guy.

With that Jakob started clanging the seat part in the buggy SO obnoxiously loud AND embarrassing that I immediately wanted to snap into TYRANT momma mode but realized this would have ruined said moment.

So instead I just said "No SIR" FIRMLY.

Jakob's reply?



"MOMMY I HIDE!!"

God I love this child.

I'm a kick ass mommy too.

Finding Our New Normal.........Again.

Things have been pretty good since I got out of the nut house. We are always adjusting to our life though. A friend of mine was just saying that as special needs parents you get used to one normal and once you are finally adjusted to a new normal then BAM it changes again. Always changing....always adjusting.

With Makily's EEG last week and Allen being off we still aren't on a "regular" schedule.

Monday will be an exciting new start for our family.

Allen has been working over the road as a truck driver for 14 years, 13 of which we have been together. When Makily was born nearly eight years ago we planned on him doing something local instead of over the road. When she was born we had no choice though because there was no way we could have taken a cut in pay OR lose our insurance.

Allen found out on Friday that he is going to be driving locally, meaning only in Florida. He should work basically 5AM to 5PM Mon- Fri and be home EVERY. SINGLE. NIGHT, off on weekends!

Trying to help Daddy fix the TV.


This takes a incredible amount of stress off of Allen as he has fears of what may happen at any time with Makily.........what if he is hours away? I've had to make that phone call a couple of times and believe me, it's never pretty. Then he drives like a bat out of hell all the way home and I worry not only about whatever is going on with Makily at the time but if Allen is in his right mind enough to get here safely. Very Stressful!



I have noticed positive changes in Makily since lowering her dose of Keppra and increasing her Topomax. She picked up a toy that was sitting NEXT to her and put it on her lap to play with it. Typically Makily DOES NOT pick up anything on either side of her TO PLAY with....it usually has to be in her lap. I saw her do it once and then asked her to do it again......and SHE SURE DID. That's progress. That's understanding. This kid is amazing.

Things really have improved in so many ways. I've had many people that have noticed the shift in my mood and how I handle certain things. I'm less hot headed and more patient. I find myself letting things go when before I would have probably made a big deal out of it. I ask myself "Is it really that big of a deal?" If the answer is NO I usually just move on.

I was really worried that people would be judgemental of me when I came out and announced I had been in the nut house. I'm shocked at how much support I have gotten.....that being said I have had a couple of people give me the pitiful eye and say "How are you doing?" like I am going to break out sobbing and spilling my guts at any moment.....okay so maybe they know me more than I thought! lol

My Kelly concert is THIS Thursday. Can't believe how close we are getting.

We went to the Market on the Square today. I found Makily an AWESOME tutu for her birthday party this year. It's ADORABLE. We got some candied jalapenos and some fried plantains too!

We also found this living room set. It was listed for $165 and we ended up talking them down to $130.....LOVE. A. DEAL.



For those local this was at Brother's Keeper down on the Square. They had some really great deals in there today and usually always do.

My grandmother is still having a hard time adjusting to the assisted living facility. Please keep her in your prayers. My mom and sisters are trying to do the best they can for her but she is just not very happy right now and so it's hard on everyone.

Overall I am happier than I have been in years. I have seen so much resolve in the last two weeks that I just know things can only get better. I am going to do another entry about life in the nut house soon. I know a lot of my readers are LOVING that part of my blog. I have tried to vlog but WOW it was bad. I'm gonna work on it a bit more though. I think it has to be spur of the moment rather than me trying to talk about one thing in particular.

We will see.

Home Again, Home Again, Jiggity Jig.

So we are home.

The doctor discharged us and we were out of there in less than 30 minutes.

The nurses were all phenomenal.

Everyone was really friendly.

The Neurologist says that her eye drooping does not correlate to anything abnormal going on in the brain. This is good news. I'm pretty comfortable now assuming that it's just muscle weakness but I will eventually make it over to the eye doctor with her to confirm this. Since it's only prevalent when she is sick or tired I doubt they will do anything about it.



For some reason she stopped having the abnormal brain spikes. She had them on Monday a few times and then NOT ONE on Tuesday. Since she is so sleepy he agreed we should change the medication. I'm nervous but I think it's the best choice. We are going to increase her evening dose of Topomax and slowly DECREASE the Keppra until she is weaned off of it. I'm comforted knowing that we have emergency medication AND that she is on an apnea monitor at night. If something happens we will catch it and can help her. I don't like messing with the medication at all but at this point it's been nearly A YEAR and she's just as tired today as she was back when the initially put her on it. It's just gotten worse. The doctor said by now if that side effect was going away it would have already.



He is going to see her in the office in a month and set up another EEG to make sure the spikes are gone completely and that the increase in Topomax is working.

I have to add this. Her Neurologist was so good to her. He said/sang something in Indian to her. I think it may have been a prayer, whatever it was I thought it was incredibly sweet. Then he picked an eye booger out of her eye with his bare hand and she giggled.



Made me want to hug him.

The only time she cried the entire two days was when they had to remove all the leads from her hair/head. It's left some read marks from all the glue. She cried really loud which she never does. Poor baby girl.

I'M REALLY PISSED OFF YOU GUYS.....NO REALLLLY!


I'm glad part of this mystery is over but I am nervous about the road ahead.

Whatever happens though we will just keep on going.

That's just what WE do.

Raw Thoughts and Sushi.

That is my favorite title I do think.

Every time we have been inpatient there has been at least one other family that we have connected with them. It's almost impossible to NOT connect with each other because let's face it as a special needs parent we are trying always to bring normalcy to our kids. Most people just take "normalcy" for granted. Understand that when I use the word normalcy there really is no such thing, I am talking about the VERY BASIC FUNDAMENTALS FOR LIVING SELF SUFFICIENT ONE DAY. Breathing, eating, SWALLOWING (it still stuns me to this day how difficult mere swallowing can be to an immunodeficient child). I could go on and on about this by I will get to my point.

Today I have taken at least four....maybe five breaks out of this box of a room. Every time I venture out something has made me reach out to people. Say things I wouldn't have said but only would have thought but I said them out loud because I knew it would make the other person happy. And ya now what? It's made me happier.

Please know I realize that makes me sound like Mary freaking Poppins but I assure my dear friends (angel faces as Jenna Marbles would call you)I ain't Mrs. Poppins. (I not so secretly love you Jenna!).

This picture makes me LOL FOR realz.


Don't want to be either. I'm starting to like myself again.

Tonight I went downstairs to get food and kept looking at the sushi, I've never had it. Normally I would have just gotten something familiar. Today I BOUGHT THE SUSHI. As I was going back to the elevators with my food I heard a mother saying "Come on Nicholas....now the elevator is here....". I stood holding the elevator....and holding....and holding......*she didn't ask me to but I'm still holding it lady.....and holding........ANNNNND around the corner comes a little boy barreling towards me. He trips and falls, he even bumped his head pretty hard when he fell. I waited for screaming and crying but it never came. He jumped RIGHT up and said "I'm fine" and got on the elevator with his mom quickly following behind. It was then I realized this boy had cancer (cancer kids break my heart). Initially I thought he was three or four until I heard him talking and saw his face......he was totally bald. He was likely closer to six'ish. He pushed the button for the second floor on the elevator and grinned at me.

I looked at his mom and said :

"Don't you just wanna carry him around and keep him in your pocket and snuggle him?" She grinned and said "OH YES all the time, every day but he doesn't want to be still." I said OH I know all about that I have a little boy. I told her how cute her son was and they got off on the next floor. The other woman in the elevator look on her face that I did. I smiled and said "Ya know I have been in and out of the hospital the last eight years with my daughter and each visit there is usually one kid that stands out and I always will remember....that was that kid....he just made me want to.....

With tears in her eyes she interrupted me and said:

"Carry him around keep him in your pocket and snuggle him forever?"

I looked at her now with tears in my eyes and simply said "Yeah".

The elevator door opened to my floor and as I walked out I heard the lady say

"God Bless you and good night".

Preliminary Partial 48 Hour EEG Results.

The Neurologist just left.

The Neuro examining her.....best pic I could get.


He told me that Makily is still having abnormal brain spikes concentrated in the frontal lobe of the brain (that's where your personality is ..sad face). He says that those brain spikes can spread throughout the brain and cause a seizure but at this point they have not seen any actual seizures.



He was concerned about the eye droop and stared at a photo of the drooping/turning out for quite a while. Then he examined her and stared at her eyes for a while too. She did the eye droop thing in front of him.

RIGHT Eye droop thing.


I expressed my worry about the Keppra keeping her so tired all the time. She's actually regressing and it's horrible for her and TERRIBLE for us to watch. She's always wanting to lay down now. I sit her up and she has figured out how to lay back without hurting herself. This is not normal for her to always want to be laying down. It's been since the start of the Keppra. She's always been sleepy but this is much worse.

The doctor wants to do another day of EEG (today) and then review the results again. He is also going to consult with his team to figure out something to change the Keppra to. He thinks the Topomax is ideal for her since she has done so well on it for so long. She had break through seizures last year though so that is why we added the Keppra.

I'm okay but bummed a little. I was hoping he would say all was fine but I should know better than that when it comes to my "abnormally normal for her little girl."

When I went to take her picture again.........she totally put this in front of her face. bahahahhaha


I love you Makily.

Get That Dirt Off Your Shoulder.

So yesterday blew.

It really wasn't that bad but being in the hospital totally has affected my mood. I cried a lot yesterday. Had panic attack Sunday night and I shook so bad my teeth chattered.

I really thought while it was happening "wow my teeth are chattering....that's impressive."




The nursing staff has been great. Everyone is very professional and friendly. Makily is handling it all well and is having a cartoon and toy fest.



She actually lifted her head on her own here and there for the tech that hooked all the electrodes to her head. She didn't cry for one second. I'm amazed at this child that has matured from screaming the the second they started hooking her up when she was little to seeing her actually do what SHE can to help. She's amazing. Always has been and always will be.



The hospital definitely brings back some scary memories. We are in the peds unit (we have always been in the PICU here so it's a nice change). It's adjacent to the PICU though and the elevator is right in the PICU hall. As soon as I hit that hall I was overwhelmed with memories of her heart cath, how serious it was, how scared we were.....and again how AMAZING she is. Always has been....




Yesterday we had a moment with Jakob that broke my heart. He came in the room and looked at his big sister. She was in a hospital gown (ugh makes me wish even more now I had remembered the pink girly gown I had made for the trip specifically), one of the green ones, on green sheets and with her head all wrapped up to hold the EEG electrodes in place. Jakob looked very sad and said "Mommy, Kily dead.....Kily dead?"

*long pause as I try to fight tears*

"No baby sissy is just sleeping."

Then he got up on her bed and rubbed her leg and said

"Kily night night?"

"Yes baby Kily night, night."

SOB

SOB

I didn't even KNOW that Jakob even knew what "dead" was so the entire comment really upset me. My nephew had asked the same question years ago when Makily was sleeping really hard. He too was relieved Kily was okay and gave her a kiss on her forehead in relief. She's so fair skinned and if she is sleeping hard and catching flies, 'I can see how one would think that, especially a child.



After that conversation I began to wonder if we are somehow scarring Jakob from exposing him to the medical side of all this. I wondered if he is sad that lately Mommy has been gone here and there. My friend Cheryl Paquette shared an entry on her blog written by her daughter Emily. It details her outlook and view on her brother who had a genetic condition that was similar to Makily's. Sadly her brother Bryant passed away after LIVING a full life for 20 years when his parents were told he'd likely die in infancy. Another awesome kid always was......and always will be.



I am still working on vloging. It's harder than I thought because I find myself rambling and wondering if I am just rambling or if I'm interesting or not. LOLOLOL Give me time I'm working on my stage fright okay?! That and every time Allen I watch my tutorial on bib making we both end up hysterically laughing at me. I crack me up with how dingy I can be.

So while yesterday was hard, I am determined for today to be a good day. I brought a "learn to knit kit" and I'm actually gonna try to do that. Another special needs mom of mine will be here today, her daughter is having surgery so keep her in your thoughts. We will be able to keep each other company though so that's nice. My friend Whitney is bringing me dinner tonight too so that's plenty of distraction from anything sad and believe me friends THERE IS LOTS OF SAD at the pediatric hospital. Yesterday while downstairs I saw a woman with a baby on her hip. She was pushing on IV pole and baby was hooked up to two IV pumps and a pulse ox. The reality of that situation was HEAVY. I wanted to hug them both but decided against it. lol

Later on there was a lady with a TEENY baby in his carrier. He had oxygen on his face and was just adorable. I walked by her twice and then had the overwhelming urge to say something to her. I finally did. I just told her how beautiful he was. She told me he had been a 24 week micro preemie. He was seven months and TEEENY. She said he had all sorts of gastro problems as of late and she didn't understand why. He had a g tube also. All the problems she described Makily had been through at that age so I told her what I knew. She looked at me dumbfounded and said "How is it you can give me all this information but the doctors can't?" I jokingly told her I graduated from the medical school of Google. I told her to watch the nurses, ask questions and research EVERYTHING. That's how we got through it. I gave her my number and I hope she uses it. :-)

I got a phone call yesterday that brightened my entire day. It was great chatting even though it was about rectal water, you know who you are and I do hope we can do it again....lol Love you.

So while some of yesterday was emotionally draining it had it's bright spots and I am feeling better today after a good long nice night's sleep. I took a sleeping pill last night and wow did it work like a charm, I usually can't sleep in the hospital....if I do it's fit full.

I love wearing her name.


I'm gonna get up this morning in a little bit and get that dirt off my shoulders and continue trying to be positive.
*WARNING LYRICS.*


I love the new start I have made and I am determined to keep moving forward and leaving old, sad and negative people and things behind. It's hard, it's sad sometimes but DAMN there is just too much living to be done to be so damned depressed.

I am Super Woman you know?




I will leave you all with a G tube Fail photo. Enjoy.

hehee


Love to All,

Trish

The Big Day.

Today Makily and I will head down Orlando to say the night in a hotel. In the morning we will be at Arnold Palmer Children's Hospital to start her 48 hour EEG.



I am a little anxious just about BEING in the hospital with her as it's been quite a while since we have been inpatient. Sometimes that brings on flashbacks from the past and it depresses me. This will be the true test on HOW STRONG I have become and how much my medication works.

The good thing is I have a friend Whitney that is bringing me dinner on Tuesday night and is coming to hang out. That will definitely break the boredom for me and The Princess. My other friend Kiley's daughter Briella is having surgery Tuesday morning so I am sure we will be back and forth in each other's rooms and I'm sure between the both of us we will drive the nurses batty! lol

Everyone is noticing a difference in me. I'm slower to get angry. I'm able to catch myself now and I say "is it really THAT BIG of a deal?" in my head. If the answer is NO then I just say "meh....no biggie." Allen even told me yesterday how much more laid back and cheerful I am. this makes me happy.

I went to a birthday party for a friend yesterday and I was so relaxed and had such a good time. We did karaoke and drank, and ate and had a great time. Jakob ran around like a maniac and Makily enjoyed watching TV and playing with her toys.

My next entry will be the beginning of the video blog I am going to do for this hospital stay. I'm actually kind of excited.

I kind of feel this trip is going to be pivotal for me in so many ways. I want to see what coping skills I have perfected (or not) and I really do want to know what is going on in Makily's brain and if she is having absence seizures like I think. I don't care what kind she is having.....I just want them controlled. PERIOD. They scare the hell out of me.

This is a example of an absence seizure. Makily does something similar but since she can't walk or talk and since they are so vague like you see in the video it's hard to determine.

If anyone wants to come visit call me and let me know. I'll give you a time when we aren't doing anything and you can visit my girl. I'd like to keep this to the people we know or have met personally.

This week will be pivotal for me. It will be pivotal for Makily and her seizure control and care.

I wanted to say how thankful I am for all the comments and for all my blog readers. The maxi pad post got 752 hits in ONE day. I was baffled as it was only getting about 80 hits a day before I started blogging again. I'm going to keep it up. It's helping me in ways I can't even describe. It's therapeutic.

Love to you ALL,

Trish

I love how I look so serious and Jakob is chilling in the background. lol

A TUTORIAL BY MWAH.

I've had requests to do a tutorial for Makily's bibs.

Several months back I started making bibs for Makily. Then I gave some away to ES parents and then they started ordering them.

So here's some kids modeling my bibs........













All of the above children have ES like Makily. Aren't they all SUCH precious angels.?

I had some friends asking me to do a tutorial on how I make the bibs and I decided I would do it. I'm going to VLOG our visit to APH so I figured I' do a tutorial to get my feet wet.

Here it is...how to make really absorbent bibs.

What I'm Listening To Right Now.

My music selection lately has been pretty insane. Some of it I listen to over and over. Some because it makes me feel better, some of it I enjoy listening to just to wallow in the "suck" of it all.

Some of it I relate to pieces and parts and then some of the music is just out and out rage or the entire song speaks to me. Some of it I just enjoy the beautiful soulful voices. Reminds me of my sister when she sings. I LOVE MUSIC. I really always have.

I'll post the videos below and I'm going to try to find all videos with the words. Sorry if the spacing is off. I design the layouts on my own and there is only so much I can do about certain sizing settings.


Favorite part of this one is "Imma' be what I set out to be, undoubtedly and all those who look down on me I'm tearin down your balcony."


"I'm alive again, more alive than I have ever been in my whole entire life, I can see these people's ears perk up as I begin."


Her voice is JUST amazing.


"Do you ever feel so paper thin, just like a house of cards, one blow from caving in."


"I can tell, I can tell how much you hate this.....and deep down inside you know it's killing me."


"I tried so hard and got so far, but in the end it doesn't even matter..."


"I need a little room to breathe cause I'm one step closer to the edge and I'm about to break."


"Mistreated, misplaced, misunderstood, miss "no way it's all good", no it didn't slow me down, mistaken, always second guessing underestimated look i'm still around."


"Staring at the blank page before you, open up the dirty window, let the sun illuminate the words that you could not find, reaching, for something in the distance, so close you can almost taste it release your inhibitions feel the rain on your skin."


"Look into my eyes and I own you...." I <3 Adam Levine so you get the real video on this one so all you ladies can drool along with me. lol



"Theres a count down waiting for me to erupt. Time to blow out." I love Britney and her spiked boots! She's go-just and a card carrying member of the crazy society like me.



That's all for now folks. Please enjoy my varied music choices.

Pot Luck.

Okay I'm just going to ramble on in no orderly fashion to update what is going on RIGHT now with our family.


Makily is going for a 48 hour EEG in Orlando at Arnold Palmer's on Jan. 23rd. I think Allen is going to try to take off work so we have someone to take care of Jakob while the other of us is in with Makily. Allen offered to be the one in the hospital with her but I just don't think I can do it. I've been to EVERYTHING she's ever had and so I can't NOT go. Since the seizures started back up and the new med was added she's sleepier than usual (and the school has even went so far as to say they see a regression) and I want the meds adjusted or changed to help with that. Her EEG's have been abnormal for over a year now. She has no stamina. Her strength is the worst it's been in a while. She was sick for 11 days straight and she looked so crappy I could barely look at her without crying.

Jakob is doing well but still very behind speech wise. He's trying his best though and so we are very proud of him. Recently he has actually sat and snuggled with me or Daddy for 15 minutes at a time. THIS IS HUGE because that was something just six months ago he COULD NOT and WOULD not have been about to do. He's still a handful and a half though and keeps us all on our toes.

Allen is awesome as always. He makes me laugh and knows how to cheer me up. He's been really supportive the last month or so that I have been struggling. I'm honestly not sure how I got so lucky with him. He bought Makily flowers last night. Made me BAWL. She loved them. I couldn't be more grateful.

I'm doing alright.

Lie.

I'm a wreck. Facing another hospitalization with her just puts me back in that "anything can happen to her at any moment" mode. It stinks. Today she had what Allen believes was a seizure. Her right eye turned COMPLETELY OUT while her left stayed "normal", she was very still and Allen said he just sat there holding her hand telling her it's okay. It lasted maybe 30 seconds. Then she acted totally normal so I don't know what to think. I just hate dealing with ANYTHING to do with her brain. It scares the hell out of me. I still hate being responsible for giving her a medication that effects her BRAIN FUNCTION. Makes me so nervous and always has. There have been a couple of times I've drawn all her meds up and then started to question if I drew up the seizure med or her robinul twice (those two are clear and she gets the same amount of each). When that happens I just dump them both and start over. It's a lot of pressure that I don't usually let myself focus on. I'm sad she is getting bigger, older and heavier. It's getting so hard to lift her in certain situations. I hate it so much, it makes me want to cry.

I was on our local radio station recently. I am helping to coordinate the Chromosome 22 Central Conference. Robin and Larry let me come on and talk about Makily, ES and other Chromosome 22 disorders. It was really an awesome experience. I was pretty nervous as I had never done that before and was afraid I would get emotional and not be able to get myself back together. I did much better than I thought I would. I had a rough morning before I had to go on so I mentally was struggling but went anyway and was proud that I did. They had it up live on their podcast so there is video of it!



I am going to get over to the hotel we are looking at this week to try and get a contract written and final details for that. Believe me I will update the closer we get and once we have more things set in stone.

I'm still looking for a new shrink. I called some this week and got lots of voice mails. One did want to help me but she said the doctor I was calling about wouldn't be that good of a match for me but that someone else in the office would. She would have to see if that doctor was covered by my insurance. That was two days ago and I haven't heard back. sigh.

I bought the dog a dress this week and she still has it on. I was shocked she liked it and didn't try to rip it off.

Yesterday I went to check my blog and was shocked to find blogger had deleted it. Or so I thought. It said something like this blog no longer exists. I have been blogging here since 2005 and so I was in a total panic to figure out what happened. The thought of not being able to retrieve it was horrible. After trying to sign into my gmail which is how I sign into my blogger it told me that there had be fraudulent/suspicious activity on my account. It made me change my password and THANKFULLY my blog was BACK. So lesson learned here is that I MUST keep blogging regularly. I think this will be a wonderful keepsake for my kids. They will get to know me in a way they never would in having this. I plan on printing out all my entries and making a book for them one day. I went through some old things on my blog the other day THAT I didn't even remember, so I'm glad I have it all here.

I'm back....or at least I'm working my way back.

Goodbye 2011.

So it's 2012.

woo hoo.

I had this longer blog written and I just said screw it I'm just gonna candidly speak.

Bear with me.

Last year blew.

Makily started having seizures again, my grandmother went into a nursing home, I had some personal family issues and I had/HAVE some personal and emotional mental issues.

I've done a lot of soul searching this year. That sounds so cheesy but it really is the truth. I think I'm still more confused than certain of anything.

My faith is almost non existent these days. I can't even pray anymore. When I try I just feel like a fool. Imagine how mind boggling this is for a southern girl who was born and raised in a Baptist and then Pentecostal (yes I know polar opposites, I told you my family is odd) church and baptized at the age of five at her request. Yeah. Talk about opening boxes you had once taped up tightly and stored in the back of your head refusing to ever open......NOT. GOOD.

So with all this soul searching you would think I would have some kind of enlightenment. Some sort of "A HA!" moment that I could blog about and sound like I have it all together...right?

Unfortunately there has still been no enlightenment.

I FAR from have it all together.....TRUST ME.

In fact I am pretty sure at THIS moment in time I know less NOW than I ever have and that my friends is the truth.

"The only thing I am sure of.......is that I'm not sure of ANYTHING."

I should tattoo that on the back of my hand. Seriously no other words could more accurately describe the sense of confusion in my head.

I'm trying to find a good shrink to help straighten me out. I saw one right before Christmas and I left there thinking I WAS ACTUALLY normal and SHE was crazy. That is definitely a blog entry of it's own though.

I'm hoping this year will bring me some clarity and peace. I am so full of anxiety I wish I could get away from myself sometimes. I actually had three full out panic attacks this year. I've had them before but not like this. I felt each coming on and typically I can control it and think of something else, do something else and have always avoided it turning into a big deal.

I have lost the ability to control it anymore.

The first one was the day Makily's teacher called and literally JUST said "Trish, COME QUICK!!" and nothing else. My friend Trish witnessed THAT panic attack and let's just say it was UGLY. I screamed and cried and was a total lunatic. I was hyperventilating and saying over and over "WHAT IF SHE IS DYING.....WHAT IF SHE IS NOT BREATHING...IT MUST BE A SEIZURE SHE'S GOING TO DIE OMG SHE'S GONNA DIE I'M NOT READY...." all the way there....... The school called during the HORRIFIC car ride there to say Makily was at least breathing.........I made Trish say over and over to me "She is breathing, she is breathing, she is breathing....." Bless her heart she repeated it like a mantra and I will never forget that. It was the only thing that kept me IN the car at the stop lights or when we were delayed by a train (yes seriously...my luck) and then a STUPID cop who was pulling someone over.....I really almost got out that time. Thankfully Trish talked me down. Thank you for that....as I type this please know my chin is quivering and I have tears streaming down my face. I love you girl.



The second panic attack was later in the year and I felt it coming. My entire head and neck got REALLY hot, I could feel myself breathing faster and right as I was on the edge of full panic attack and sanity I remember thinking in my head that I didnt have the strength anymore to fight it off and it just overtook my whole body. I sat hyperventilating, crying, my head in my hands, shaking and feeling nauseous......feeling pieces of my sanity slowly leave me. It was bizarre and scary and I finally just collapsed into a heap on the bed and I could actually feel when the attack was slowly subsiding and when I was actually starting to be able to control myself again. I won't describe what brought this on, it's too personal and sometimes I share too much here anyway.

I have heard people claim they have panic attacks too. When I asked them what it felt like they said they just felt fidgety.

SERIOUSLY?

Maybe I'm crazy....(lol) but when I feel fidgety that's what I call it.......fidgety. I don't dramatize it for attention by calling it A PANIC ATTACK. Grow up. Realize that dramatizing your fidgetiness (yes I just made that word up) by calling it a panic attack IS VERY ANNOYING to those that actually suffer from them. You suck.... a lot.

END RANT ABOUT THAT.

So my goal for 2012 is to get myself to a place mentally where I am not on the verge of a panic attack all the time. I want to get my house back in order, get my mind as "clear" as it can possibly be. It's been a while since I felt mental clarity. I bet it feels nice. I want that. I don't even totally remember what it feels like.

I have all these people tell me how strong I am, what a great person I am, I'm inspiring...yada yada yada. The fact of the matter is I don't feel any of those things about myself. These people don't witness the "say she's breathing" moments. They don't see me on my kids bedroom floor sobbing after she's fallen asleep. They don't know EVERYTHING about me. Only what I reveal here. I realize I am imperfect. Sometimes I feel like I am MORE imperfect than everyone else.

They don't know some of the EPIC mistakes I have made. I've made some decisions others wouldn't have but honestly I wouldn't go back and change it now. I have experienced things I wouldn't have otherwise and I cherish those experiences and lessons I learned. I am grateful for those that came into my life this year whether it be for just a season or for the rest of my life.

I've learned a lot about myself...but I still feel like I don't know anything.

Painful or not it was worth it.



One more thing this year has taught me is to LOVE UNCONDITIONALLY AND WITHOUT RESERVATIONS. The rewards of this are great.

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.