The Highs of being Makily's Mom.

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

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

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

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

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

I love you Makily.

Changes, Updates and More.

Changes:


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





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





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





Updates:





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





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





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





More:





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





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

For those that miss me/us.

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

Would the WHY of it even matter anymore!?

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

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

I have struggled a lot the past year with WHY.

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

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

I would still be angry at him for it.

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

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

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

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

Then Alayah died.

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

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

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

They now think Maia has Limbic Rage.

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

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

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

Why did God let that happen?

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

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

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

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

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

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

Bullshit.

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

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

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

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

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

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

I don't know.

I doubt it.

Jakob's Diagnosis.

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





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

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

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





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





Jakob was exposed to alcohol during the entire pregnancy.





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





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





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

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





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





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





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





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





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





So what the heck does all that mean?





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





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





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





So how do I feel about all of this?





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





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





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





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





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





Maybe I'm in denial.





I'm not sure.

Edna update....FINALLY!

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

Ok so on to Edna.

Edna IS a brain tumor.

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

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

No.

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

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

1. Brain surgery to completely remove the tumor.

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

*blink*

*blink*

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

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

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

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

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

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

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


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

Blackberry Curves, LOVE THEM.

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

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

*sigh*

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

"911 what is your Emergency"?

Here's how our conversation went:

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

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

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

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

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

HER: An officer will be out shortly.

GREAT

JUST

GREAT!

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

SIGH.

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

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



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

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

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

"What happened to your head and your eye".

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

Then he demands the police report from the accident.

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

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

sigh

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

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

LOVELY.

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

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

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

OY.

Ocala, it's a small town.

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

In February I was in a car accident.



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

My Trajectory...scary I say!




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



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



She ran back in and called 911.



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



Then he did something that was very surprising.



He put his arm around me and said:



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



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



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



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

About an hour after the accident.


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



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



LOL



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



*blink*



*blink*



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



HAHAHAHHAHAAA



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



SHOOOT ME.



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



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

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

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


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


My knee



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

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

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

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

*blink*

*blink*

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

1. Choriod Plexus Papilloma

2. Hemangioma

3. Meningioma

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

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

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

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

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

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

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

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

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

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

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

I'll keep you posted on Edna and I.

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

MRI OF THE BRAIN WITHOUT AND WITH CONTRAST

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

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

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

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

HAPPY SIXTH BIRTHDAY MY GIRL.

She is six today.

Six.

My Dearest Makily,

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

I love you more then I could ever describe.

Happy Birthday my angel.

Love
Mommy

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

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

Crying over Cupcakes.

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

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

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

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

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

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

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

Insert anxiety attack in the middle of the deodorant aisle.

I could feel the tears welling in my eyes.

I hate MARCH.

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

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

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

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

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

The look on Allen's face.

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

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

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

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

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

These images will never leave me.

I will carry them always.

They have made me who I am.

They have strengthened me.

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

I love you Makily.

Makily Update.

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

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

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

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

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

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

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

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

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

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

I will always want more for Makily.

That will never go away.

I will always wonder what might have been for her.

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

The LONG road to Jakob's adoption.

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



I prepared myself.....I thought.



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



In my heart he was already mine.



Does this make me a bad foster parent?



Probably.



Our license expires next month.



We are not re licensing.



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



There are several reasons why.



First and foremost is that emotionally it is TOO HARD.

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

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



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



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



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

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

Fate stepped in.

His father was arrested, released and left the state.

We have never seen him again.

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

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

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

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

We are so blessed.

More to come.

Ours Forever.

It is with GREAT PRIDE that I introduce to you our our son

JAKOB ALLEN

We officially adopted him Wednesday March 17, 2010.

I cried through the entire adoption.

I will post the entire story this week about how it all happened and give more details, but I just wanted to let ALL my readers know, he is ours forever.

The fight is over and we are so relieved.

He is about two months old here, I don't know for sure because this was taken before he came to us.


The day he came to us, Four and a half months old






Day three with us.


Adoption Day














More pictures, video and details on EVERYTHING to come.

Stay with me my friends.

Soon my friends.....

....the adoption *should* be final.

There is so much I want to say but I fear who may be reading this....just when I let my guard down, I'm shocked to hear of people that live here that read my blog. Just know Ocala is a SMALL town.

I LONG for the day I can come here and post AWESOME pictures OF MY SON and tell his entire story. I have kept so much from my blog and I hate that. I need to let it all out.

Be patient, my hope is that within the next two weeks, you will see my son's adorable face. You will get to hear his story and you will be amazed at how much he has already overcome.

Until then.........

I'm coming back.

I am so ashamed that I have neglected my blog for so long.

I started facebooking and I think that may have been a reason for my blog block. That and so much of J's case is *almost* over that I honestly am afraid to even talk about it here for fear that someone will find this blog and something bad will happen.

Am I paranoid?

Most definitely.

I also have been in a weird place as far as Makily is concerned. I don't mean how much I love and adore the little booger. I mean the why's etc. I get to the point where I don't want to talk about all the sad crap and my blog HAS been my outlet so I have just stifled myself. I'm not sure why other then sometimes talking about it makes it more real maybe?

Not too much has changed since I last blogged. Like I said before J's case is FINALLY winding down but not without MUCH drama and headaches as always. My Christmas miracle would be that his adoption would be final by the end of this year. That is my DREAM. I sort of have a feeling it will be in January though and that makes me mad but yet again it's not something I can do anything about. Until his adoption is final I can't relax. I worry EVERY DAY that some family member will crawl out of the woodwork and say they want him. They tell me that's highly unlikely but I've heard that all before haven't I?

Makly is doing well and being as sweet as ever. They have been working with her on a tricycle at school and she seems to like the "regular" one as opposed to the adapted trike. The adapted one has all kinds of restraints and Makily hates being strapped into/onto anything. Add a helmet to that and she's M.A.D.! The regular tricycle is less restrictive and they said she giggles with it. Hoping to try and get her one like it for Christmas or soon after.

Today she's come down with a fever, nausea (with retching...oh joy), and diarrhea. I can't wait until the cold weather is over because it seems like we just can't keep her well during this time of year.

Much love blog family. Sorry I've been away but I promise, I'll be blogging more.

Oh my gash I'm blogging.

So I'm updating!

YAY ME

First off Makily is doing great. We all had a horrible bout with the swine flu around here.

THAT SUCKED.

The baby did okay with it, Allen and I had mild symptoms but Makily struggled pretty hard. It was not pretty. Double ear infection, bronchitis, fever of 104.....and of course swine flu. She was down and out for about 2 weeks. Luckily she avoided being admitted and is doing well now.

J is growing like a weed and will be two in a little over a month. Where has the time gone. Still waiting on multiple things with the adoption. Having a hard time keeping a social worker. Not sure who his worker actually is right now. I'm hoping to light a fire this week and get things moving along QUICKLY. I really would LOVE to be done with this adoption before the end of the year.

Allen and I are doing fine. He's working his butt off as always. I'm still doing the OCALAMOM thing and staying at home with J. J may start early intervention four hours a day soon and I am not sure what I will do with myself then.

I took a Pole Fitness class on Saturday. I made an ass out of myself but it was a lot of fun and I am really sore. They also have other classes there so I will be going back and learning. I need to get myself back in shape and on top of things again.

I'll update later today with pics of HALLOWEEN. The kids were ADORABLE!

So how's Makily doing?

I've had quite a few ask me that lately so I figured I would do an update.

We went to Neuro a week ago. My sister Deborah went with us.


The doctor and I discussed Makily's last abnormal EEG. He said she was just having "mis-fires that can lead to seizures but NOT seizures".
He said Makily DID NOT have to have a 48 hour video EEG. He will do another EEG in the office in three months. He did increase her medication by another half a pill and Makily has done fine with that.

She LOVES school and is doing VERY well with that. She has art twice a week with a "regular" kindergarten class. Carrie's son Logan is in there and he knows Makily well so that makes me smile.



Makily also has P.E. twice a week. I am proud to announce she is taking SWIM CLASS for P.E. I knew that once she got into kindy they would let her do swim class and so I made sure to get the forms filled out when school started. They said she does well in there and really enjoys the water.

This morning I woke up an hour late. I decided not to even rush around, I was going to be late no matter what. I got the kids ready and took Makily to school. She smiled when we drove up and started clapping when her teacher came in the room to get her. She LOVES school and it makes it so much easier to take her there seeing how happy she is being there. She has also made a new friend. A lady named Suzanne from ocalamom saw Makily's story and showed her life video to her daughter Kate. Kate is in the fifth grade and she fell in love with Makily. She just so happens to also go to Makily's school.



Kate asked her teacher and Makily's teacher if there was a way she could come in and play with Makily a few times a week. They all agreed and so Makily's friend Kate comes in and reads to her and plays with her in her classroom. HOW SWEET IS THAT? It just gives me a lump in my throat thinking about how my Makily has touched Kate.



We took the kids to a splash park last weekend and J LOVED it.


Makily not soo kean on it. It was too....well "splashy" for her taste. I did hold her under a mushroom fountain with me for a while. and she tolerated that. It was very relaxing and I love snuggling with my girl and having those "moments" where the whole world fades away and it's just her and I.


Later Allen asked me if it bothered me that people were looking at us. I told him I hadn't noticed, I have learned to force myself to not pay attention to that type of thing. It would have ruined our moment. Some times are harder then others. I like to think they were staring because they just thought she was so darn cute.

She ate several gerber cherry puffs happily yesterday. In between puffs she would sign the word EAT over and over again. Makily usually puts her hand to her mouth often but this seemed very deliberate so it made me very happy to see her doing this.

Chance Meetings, Small Towns.

So I had a lady named Aimee on OCALAMOM contact me asking me questions about foster care.

A few days after we chatted she friended me on facebook. The next day I had a message from another nice lady named Jeannette. She said Aimee had shown her our story and that our kids had a lot in common.

I saw she had a blog and immediately read the whole thing...with tears streaming down my face.

Jeannette and her husband Steven have a BEAUTIFUL six month old baby boy named Caleb.

When Jeannette was seven months along the doctors diagnosed Caleb with Trisomy 18.
Babies with Trisomy 18 are usually miscarried or stillborn. Those that do make it usually don't survive past the age of one. Of course there are always that handful that prove the doctors wrong and outlive all the statistics.

Even still the doctors say that Caleb is terminal and he is at home on hospice with his loving family.

Strangely enough, his mom had mentioned Caleb had a therapy session. I asked her where and she said with Elon Bruner....this is Makily and Baby J's therapist. Her appt was right before ours and I got to meet Jeannette, her father and of course sweet Caleb yesterday. She even let me hold him and I felt so honored. I sensed she was nervous about it though and it reminded me to much of myself when Makily was that little. I was always nervous about people holding her that she wasn't used to. If she wasnt held a certain way she would cry and get upset. Her airway was such a mess that first year and crying always exasperated that. I just wanted to give her the biggest hug and tell her how much I understood her. I get her.

Caleb though is amazing. He is truly a sweet, perfect spirit like my Makily and it isn't very often I get to meet another child like this. His little cry reminded me so much of Makily in those early days. Holding him was much like holding her when she was that age. So tiny and frail, but it was so obvious she was in there and was a fighter from the very start.

Knowing how rare Emanuel Syndrome is and how rare Trisomy 18 is, I find it very strange that both of our families are living in the same small town. That we were connected in the way that we were and ended up having therapy on the same day at the same office...around the same time.

Wow.

I spoke with Jeanette briefly today and she said it was very good for her and her father to see Makily. That seeing my baby gave them hope.

She does not know it but that statement did things for my soul I can't describe.

According to medical science Makily should have died many times over the years...and she is still here. Still fighting, still stealing my heart every day.

I've been struggling with my faith lately. I can't say that I have resolved all of those issues but this chance meeting and connection means something. There is someone out there connecting us. Putting us in the places we are supposed to be at the right place and time. Sending us to those that need to be uplifted in only ways other families like mine can uplift them. I don't think Jeannette knows what our meeting did for me, what holding Caleb did for me either.

I know God is out there, I have to believe that, but I sure don't understand why he does a lot of the things he does.

It's not my place to question God....but I am ONLY human.

Please visit Caleb's blog today and offer his family words of love and encouragement.

We survived the first day of Kindergarten.

Mommy had a hard time.

So my baby is now a big girl.

*sigh*

When I dropped her off this morning her old PRE-K teacher Mrs. Byrd came up to say hello. Makily got so excited when she saw her, it immediately made me cry.

What can I say, I was on the verge of tears all morning anyway.

I kissed and hugged her bye after getting her strapped into her wheelchair.

Then I got in the van and bawled all the way home.

It's hard to let go and let your baby grow up. That was killing me but it was hard to look at her in that damn wheelchair on her first day of kindergarten. Oh how I have dreamed of her running into her classroom excited and ready for her first day of school.

I HAVE DREAMED OF THAT....she hasn't.

Makily was happy as a clam this morning and so I am happy for her.

They said she had a great day and there were no problems at all.

She has her own little student planner.

I love this kid.

School starts tomorrow!

So I am actually excited about it.

I went to Orientation at the school on Friday and I really liked Makily's teacher. The class will ONLY have five students INCLUDING Makily so I REALLY love that.

I have her outfit all picked out and her back pack ready.

I'm happy and sad about it all at the same time.

I just can't believe my baby is FIVE.

SHE'S FIVE.

How is it possible?

It seems like just yesterday I was holding her in my arms, distraught and wondering what the hell our futures were going to look like.

Here it is five years later and I don't think I could have guessed my life would be where it is today.

Who knows what the future holds?

I sure don't.

That being said, I am trying to turn over a new leaf.

I have found that I need structure.

How crazy, I am 32 years old and need someone else to make me structured?

I swear in some ways I really am 13 years old!

I need a schedule, I need to have somewhere to be, and a time to be there.

I NEED THAT.

So I am planning on working out again and tanning. I will drop Makily off, drop J off at Granny's (as long as she'll let me lol...I'm sure she will) and then I am hitting the gym. I always feel better when I work out. ALWAYS.

I am trying to force myself to think positively about certain things again. Admittedly in some cases it's harder then others but continuing to stomp my feet and say how unfair it is, is just making me sad. I'm tired of being sad.

Will post pics in the morning of my baby's first day of kindergarten.

That sentence gave me a lump in my throat. *sigh*