Proud momma!

I just wanted to let anyone that read yesterdays blog that my son did great today! I am so proud of him! He was such a good sport today. Sorry that I am not going to blog longer today because I am sick. I just wanted to put my bragging rights to good use.

Why do the boys make us cry?

This post is going to be on the short side...... to stressed out to think straight!
Today was my son's 1st day at school without mom and dad.
We spent the morning trying to calm him down while trying to get him ready for school. He kept telling me I am not big enough! It was a task getting him to do anything, even having him pee before he left. I did get him it there and laughing. I told him me better go pee because I was going to get my camera and take a picture of his butt while peeing. That must have been funny to him. While I pretended that I could not find my camera he accomplished going potty.




The bus came 18 minutes early so we didn't have the fun of waiting outside for it. As soon as he seen the big yellow thing coming down the road, he flipped out! They put him in a seat belt and he climbed out of it twice. What did I do, I had to just sit back and watch the bus driver fight my little boy. I also have 2 daughters and was a bit sad when they went to school, but cried like a baby for my boy!




Now I have to wait and stress out until he returns home. I so hope tomorrow is a better day for him and me too!

What do Ehlers-Danlos people look like?

Hmmm....... what do they look like, well like everyone else to a point. Ehlers-Danlos (EDS) people most of the time share similar things about there bodies. It is said that people with EDS have ears lobes that are connected to the head, thin pinched nose, skin that is thin where you can see veins like a road map (mainly on chest and back), soft velvet skin or doughy skin, joints that extend and flat footed. That's what I have found most look like but then there are all the boo boo's that we encounter everyday. Theses are pictures of my daughter.


Road map veins

Extended elbow

Flat footed

doughy skin
The next picture is of a time last year when Chloe got hit in the forehead with a baby play hammer. The bump and bruise in the middle of her forehead would come and go. One day it would be there and the next be gone this lasted for 2 weeks.

Tonight I have taken pictures of minor things that can happened over 2 weeks time. They do not heal well and scar very easily!


This last picture was not very good it is hard to see all the bruises, sores and scares. I should not fail to talk about bloody noses. Chloe has then all the time, she is a bleeder.
Theses are just the minor things that can happened. Then there is arterial, intestinal, and/or uterine fragility. Vascular rupture or dissection and gastrointestinal perforation or organ rupture. That's what the scary part is, what we can't see.
So what does a person with EDS look like......... my baby girl

Always Having A Plan

Today my 4 year old was such in a mood! Once he gets something stuck in his head he will not let it go.
Today it was the slip n slide. It was a nice day here but not hot and I told him no. So after whining about this for about an hour I told him he is just so cute when you cry. All the sudden the tears were gone and he said I will give you a kiss out of my pocket if you let me play on the slip n slide.

Last night we were watching Americas Funniest Home Videos, this was a video where a I guess 3 or 4 year old using a bike pump to blow up his man hood. My son thought this was a funny thing and he needed to try it because he wants a big ding ding (that's what he calls it). I am trying to hold a straight face the whole time telling him that is not the way it works. My 4 year old says I just want it to be big. I thought it was just men that wished for that! You gotta love the way kids think.

You will be missed

RIP
Jason
Our family has gotten terrible news today that my cousin has taken his own life. This saddens my heart so much. When we were younger we were very close, but over the years we took different paths in life. My cousin was a good hearted person and had came a good father. Over a year ago his ex wife had also taken her own life. They had 2 children together. Even though I am upset that I will never have the chance to say good bye to him, my heart and mind will be with his children.

Mason's 1st Day of School

Today was my 4 year old 1st day of school. The teachers think he is the quietest kid. Boy are they in for a big surprise. His dad and I got to go and sit with him today. Monday he will be all on his own. I can't believe my baby boy is all grown up. But I am going to love the break. I won't know what to do with myself for 5 hours a day 4 days a week. Maybe a bath without anyone peeking on me or a nap, I wish I will probably sit by the widow waiting for the bus to bring him home.

To Hell and Back Again

Someone has said that they would like to hear about how did I cope and what kind of mistakes I had made after Brad died. I had to think long and hard about doing this, because I know a lot of people are guilty of judging others including myself. I did say that I would talk about being a widow so not going to sugar coat this. Before you read on please ask yourself do you know what type a person you would become if you were me.

There are different ways to grieve and there is no wrong way. I would say that as long as you get better in the long run you have made it.

Shock - After the news that Brad died, I could not cry I was numb. I was scared to sleep, I was scared of the dark, I was scared to be alone (will get into that more later). I don't think I cried in front of anyone until the day of the funeral. We were able to visit Brad one last time at the funeral home. My tears started, it was starting to kick in that this was somewhat real and not the nightmare that I had thought I had been it.

Mixed Feelings- While at the last visit with Brad I had just got done saying my good byes and watched as everyone else said theirs too. The weirdest thing happened. One of Brad's siblings was up to say good bye. (Brad's the oldest of 9 kids). This sibling leaned in to give a kiss good bye, of course while crying and I watched a huge stream of snot fall on Brad's face. Here is the sibling trying to wipe their brothers face off! Oh my after seeing that I found myself busting out laughing in front of crying friends and family. To know Brad you would know that he had a bit of germ phobia. I am sorry to that sibling for telling that story, but I also want to say thank you. I needed it so much. I needed to feel something besides sadness.

Bargaining- After he was laid to rest I would sit at night trying to think how I could change things. Or what did I do to cause this , was I a bad person, was God punishing me for something I had done. I remember thinking or hoping there was a heaven and hell. Here's what I came up with. There has to be a heaven, there has to be something after this. This cannot be it. And as for hell earth is it. There is just so much pain here.

Loneliness mixed with Crazy Thoughts- I started having theses about 3 weeks after everything was over. It is true that everyone is gone about after 2 weeks. I don't blame them I know they have lives and have to carry on with life. I was scared everyone was gone. I was alone! How was I going to do this by myself, I needed someone to talk to. So I set out to find someone. I guess I was trying to feel whole or normal and want to fill that void in my life. But what I was really looking for was Brad and having my old life back. I also would cling to anyone who would spend time with me. I had so called friends that would take me for a ride. I had gotten a small amount of life insurance money (you get unwanted friends then). Theses friends would talk down to me and talk bad about Brad. I have no idea why I took it. I guess I didn't want to be alone! When I was alone I would wait for Brad to come home. I found myself waiting on the porch, always looking out the window or going to the garage, maybe he will be there.

Depression- After Brad's autopsy came back and I found out why he died and learned about Ehlers-Danlos. Okay so here I am dealing with the fact that Brad is gone, and now they are telling me that my daughter's could have the same thing! I would sit alone (there's that word again) thinking that one day I could open my eyes and the life and the people that are my family is gone.Was there going to be a time where I was alone and look back on a family I once had. EDS became a monster to me. To me it wanted to wipe out my whole family. Not long after I found drinking would become a huge part of my life. Now I wanted to feel numb again, I didn't want to feel all the pain of any of it. About around this time I started dating Dustin off and on (he was in the middle of a divorce), and by the end of the year I had became pregnant with my son Mason. Oh my God, when you are dealing with pregnant hormones, grief, guilt and depression. I was a mess! Yep oh how the rumors start flying. People judging me left and right. I would then open up somewhat to very few people. They still had no clue how much I was dying inside. Everyone would tell me how I have messed up, I knew that. I just wanted help but was so scared to let anyone in. I was scared that I would be judged even more and the pain would continue.

Anger- I would say that started 2 weeks also after Brad's death. Our town was having a annual trash pick up. I was in the garage (Brad's domain) going though things to get rid of. While doing this I was remembering a conversion that Brad and I had. I had told him sometime before he went that the garage needed cleaned and jokingly said you are going to die and leave me with this mess, he replied he knew and had to get started on it. (Never did). Now here I am in this garage remembering what was said and it just pissed me off. I started throwing everything, yelling and screaming. Those words would play over and over in my head still to this day. Now think how mad do you get when your spouse is so in tuned to the TV that they don't hear you. It upsets you. Have you ever had a one sided fight or a conversation. To see your loved one you find yourself sitting at a grave site just wanting someone to talk to about your day. Most couples don't like the arguing that goes along with a relationship. I on the other hand would love one last chance to have a argument with Brad.

Acceptance- All this time I had so many people tell me that it takes time to heal. I became obsessive with time. I needed a date, I so bad wanted to know when time would come. For me I would say it was 4 years. I am at 5 1/2 years now and I can go though a day without everything reminding me of Brad. I still have my days and a long way to go, but I think now I can do it.

So who am I now.........someone working on feeling alive.

What have I learned?

The mind plays crazy tricks on a person

Death is a great weight loss program

Laughter is great even in a time of sadness

and it does take time to heal.

The biggest thing I have done for myself is to be honest with me.

There is no one way to grieve, but there are steps that you have to take to get a bit closer to healing.

A special moment before Brad died:

As a young child my mom thought me to squeeze each others hand 3 times meant I love you. I had thought this to my kids also. While the hospital staff was putting tubes into Brad's mouth he was unable to talk with me anymore. He had reached for my hand and squeezed it 3 times, I knew what he meant.

Thank you Brad!

Dog Update

So I blogged about my dog Chase the other day. It turns out that he has a fractured leg. My poor baby! I took him to the vet and $159.00 later was are forced to make our own splint. The vet wanted $140.00 more on top of what we just spent! With Dustin laid off right now I just can't do it. So like I said was making our own splint (a paint stir stick from walmart & a ace bandage). We were told to leave it like that 3 weeks. I hope he can use his leg again!

Chloe's Baby Years

To tell you the truth I am pretty glad they are over. Don't get me wrong Chloe was a great baby. She hardly ever cried, giggled when she was put to bed. It was all the medical worries and no answers for any of it. I should start off before she came into this world. I was 5 months pregnant and started having a lot of bleeding. It turned out that I had a Placental Abruption. The staff at the hospital was talking to me about the delivery. Pretty much telling me my baby will not make it. To make a long story short and 2 months of bed rest she made it. My little girl that hasn't even entered this world was already more than a miracle to her dad and I. My mid wife did tell me that it was a very high chance she will not be "normal". After 8 hours of the easiest labor I ever had, I delivered a what seem to be a healthy baby girl. I was now the mother of 2 little girls now. About a week after she was born, she had to have some blood test done and her white blood count indicated leukemia. Leukemia you got to be kidding me! After all we went though to get her here! A few weeks later the test was done again and the WBC was fine. Hmmmm interesting. Soon after that she developed reflux. She would spit up like a normal baby, but this had some shooting power! She would shoot is across the room. Then can chronic diarrhea. The doctor had ordered a poop sample to be taken. Yes gross, but easy enough..... you would think. I could not take this out of the diaper that wasn't good enough. They wanted me to tape a bag to her butt. Never thought in a million years I would have to something like that! That test came back fine. By this time the doctor seem to be at the end of his wits and wanted her tested for Cystic Fibrosis. At the time I did not own a computer. I had heard of Cystic Fibrosis but I didn't know what it was. I had ask my cousin to look it up. She was pretty scared to tell me what it was. So there we were again and being tested for something that going to change our life's. The test said no thank God! Along that whole way Chloe had 4 or 5 upper GI's before she was a year old. The medical world was turning up nothing. Up to now Chloe has had 2 eeg's a handful of echo's EKG's, MRI's and a MRA. Like I said earlier in my blog I had her tested for EDS when she was 3 years old. So was her baby years was it EDS? I may never know.

The Start Of A New Life

This started off rocky just trying to get by without Brad. I thought life was not get any worse, boy was I wrong. Before Brad died I had never heard of Ehlers-Danlos. After Brad's autopsy our doctor had told us the family should think about getting tested. That choice took me 2 years to make up my mind to do. I was so scared of the out come. I had seen what Ehlers-Danlos could do. I was just scared of knowing then I became scared of the not knowing. I had Emily and Chloe tested, it took 3 months to get the test results back. Our genetics doctor's office called it was Dr. Marvin Miller on the other end and and he told me he had good and bad news. Emily no and Chloe yes. In my heart I knew about Chloe, but a mother can hope. The news hit me like a ton of bricks. I can't put into words what that feeling was like. That started a mission to find anyone to save my daughter. My mission has not been easy not by a long shot. EDS (Ehlers-Danlos) is not well known about in the medical world. That was something I was soon going to find out! So I set out to find out the right info about what this was. Finding people with it or something on it, I had a life time of work ahead of me. On top of it all I had to teach it to myself and depend on other people with it at the time doctor's were no help. I have been at this for 5 years and still want to beat my head against the wall. Then trying to get doctor's to work with me grrrrrrrr. But along my way I have found a few doctors that I thank God for and I trust them with my baby girl. A lot of people have asked about Chloe when she was a baby, so tonight I will rack my brain trying to remember the baby years.

How The Old Life Ended

RIP
Brad
9/27/1976 to 4/11/2004

My late husband's name is Brad. We were married for 7 1/2 years and had 2 daughters Emily and Chloe.
Brad died on April 11, 2004 from complications of Ehlers-Danlos Vascular Type. We never new Brad was sick let alone with a illness that would take his life at 27.
A few days before his death he said he felt like something is just not right (his words). So after a few of something just not rights and a few trips to the ER, he would die while in emergency surgery. Why surgery, well because the ER decided to finally do a CT Scan and found 6 aneurysms and he had to have a kidney removed. Before they rushed him into surgery the doctor had told Fred (his dad) and I that there was only a 20% chance of him living with taking out the bad kidney out. With this day and age that's not much to go on. I think that both Fred and I knew this was it, it would be the end. I would say that we still hoped for a great out come. A few hours went by it was hell to say the very least, then the doctor came out and let us know of Brad's passing. I was so numb I couldn't cry.
I can only tell you bits and pieces about the months to come, I just can't remember everything I was lost and just felt out of it. All I knew is that I had to get out of bed everyday to take care of our 2 daughters. Not knowing the first thing to do. I had never lived alone, I was never a single mom, I really never worked as an adult. Emily and Chloe was my drive to start over. I can't lie and say I didn't mess up from time to time because it felt like I could not do anything right, but we are all still here.

What is Ehlers-Danlos Vascular Type?

Ehlers-Danlos syndrome, vascular type (also known as EDS IV) is characterized by thin, translucent skin; easy bruising; characteristic facial appearance; and arterial, intestinal, and/or uterine fragility. Vascular rupture or dissection and gastrointestinal perforation or organ rupture are the presenting signs in 70% of adults. Arterial rupture may be preceded by aneurysm, arteriovenous fistulae, or dissection, but also may occur spontaneously. Neonates may present with clubfoot and/or congenital dislocation of the hips. In childhood, inguinal hernia, pneumothorax, and recurrent joint dislocation or subluxation are common. Pregnancy for women with the vascular type of EDS has as much as a 12% risk for death from peripartum arterial rupture or uterine rupture. One-fourth of individuals with EDS, vascular type experience a significant medical problem by age 20 years and more than 80% by age 40 years. The median age of death is age 48 years.


Diagnosis/testing. COL3A1 is the only gene associated with EDS, vascular type. The diagnosis of EDS, vascular type is based on clinical findings and confirmed by biochemical (protein-based) and/or molecular genetic testing. Biochemical studies in affected individuals demonstrate abnormalities of type III procollagen production, intracellular retention, reduced secretion, and/or altered mobility. Molecular genetic testing is available to individuals with the biochemically confirmed diagnosis of EDS, vascular type for genetic counseling purposes.


Management. Treatment may include surgery for arterial or bowel complications/rupture. Pregnant women with the vascular type of EDS should be followed in a high-risk obstetrical program. Affected individuals should be instructed to seek immediate medical attention for sudden unexplained pain. A MedicAlert® bracelet should be worn. Surveillance may include periodic arterial screening through venous subtraction angiography and MRI or CT without contrast material. However, arteriograms are not recommended because of the risk of vascular injury. Affected individuals should minimize risk of trauma by avoiding contact sports, heavy lifting, and weight training. Elective surgery is discouraged.


Genetic counseling. The vascular type of EDS is inherited in an autosomal dominant manner. About 50% of affected individuals have inherited the COL3A1 mutation from an affected parent and about 50% of affected individuals have a de novo disease-causing mutation. The risk to the sibs depends upon the genetic status of the proband's parents. If a parent of the proband is affected, the risk to the sibs is 50%. Offspring of an affected individual have a 50% chance of inheriting the mutation and developing the disorder. Both parental somatic mosaicism and parental germline mosaicism have been reported. Prenatal testing is clinically available for fetuses at 50% risk in families in which the underlying biochemical abnormality of type III collagen or the disease-causing mutation in COL3A1 has been identified.

What A Day

Late last night my daughter called me from her bedroom ! I was in a dead sleep and confused about where was she and why was she was calling me. The purpose of her call was to tell me that she had thrown up all over her floor. So after gathering my thoughts I went in to her room to investigate what was going on. As soon as I opened the door to her room the smell was so over powering I about lost my cookies too. I understand that my girl was sick but still now why can my other 2 kids make to the potty who are 4 and 9 but not a 12 year old. Is she lazy hmmmmm..... maybe ok yes I think so. After all that we finally got back to sleep and woke up like I always do. I failed to say yesterday that I also own 2 dogs (Brutus and Chase) and a cat named Monster. I had let the dogs outside into their pen. They somehow managed to get the door open. I had heard a dog crying so I had a look out the front door and there was Chase crying and limping. Dustin took him to the animal hospital to be checked out, so I guess we will know nothing till 3 or 4 . I can only guess how much this is going to cost us!

Introduction

Hello everyone this is my 1st time blogging and thought I would give it a try. I hope you enjoy it.
My name is Jess,I live in a smaller town in Ohio with my boyfriend Dustin and 3 kids.
My oldest child Emily is 12 and we are starting to hit the teen years! I have told my mom sorry so many times for when I was a teen. Now I know what she went through!
My middle child is Chloe. She is 9 years old and has a genetics disorder called Ehlers-Danlos vascular type.
Then there is the baby of the family , Mason. Mason is 4 and a ball of fun keeps us all on our toes.
Dustin and I have been dating of 4 1/2 years now and is Mason's dad. He is also a good father figure for my girls.
Then there is me I am 31 who wishes she was 29 again. Not that 29 was great it just wasn't 30's!
I guess most would say that I have had a harder life and yes that feels true but its my life.
in the days to come I will talk about Ehlers-Danlos, being a widow, a mom, just everyday life or you just may hear me do some venting.
Thanks for stopping by and reading
Feel free to become a follower
Jess