The Conference , oh my heart, more than GRATEFUL.

I am honestly not sure where to begin, I was stretched these last few days more than I ever imagined, more than I ever thought I would be and I am exhausted emotionally, intellectually and physically.  There are so many thoughts and ideas in my head, I am honestly not sure where its going to go, but the need to write is incredible.  There are so many feelings I am sure its going to take time sorting them and figuring them out.  I hope that I will be clear, but honestly there are no guarantees my friends !!! Sorry...

I am leaving this conference so very appreciative and thankful that I got to be a part of something so amazing. I am grateful to the staff for giving my children and I a scholarship that allowed us to attend.  I left there with questions answered and many assurances that Mariska will truly be OK.  I am more than relived and I feel so very blessed and almost content.  These are the cards that I was dealt in my life, so Now what am I going to do with them ?  And that is the big question ........

What am I going to do with these cards that I was dealt ?  Well truth be told I am exhausted, I do not want to fight anymore but I will. I will keep fighting. The children that I got to experience the weekend with were more than amazing, they had such courage and strength and they had this light inside that was just beaming.

I think I even feel a little guilty that we were at the conference, you see children with so many different manifestations of the Ectodermal Dysplacias and they are smiling and living and doing all the things that kids do.  Vincent was awesome, he noticed how different they do things and was so amazed.  He kept talking about how they held their cup and how they colored and he thought how awesome that was.  The experience for Vincent was amazing and gave him a different view that there are many ways that a person can accomplish their goal. Mariska was on cloud nine.  She fell asleep smiling on the way home.  She was so excited to be around kids with little hair like her and was proud that she has the hair that she does.  She didn't feel different while at the conference and for her that is something more than amazing!  As positive and loving and caring that people are when we are home,  Its different being around others who are just like you. 

I think that I was most affected by the conference.  I am not a joiner, I am NOT outgoing, I DO NOT like to bother people.  Its more than hard for me to be open to talk to people that I do not know.  And of coarse, I did not really know anyone there. I knew names, I knew face book pages but that is all.  I was scared going that I was not going to have the right answers to their questions.  I was terrified of speaking with the geneticist, telling her of their conception and not having much information and having her shut me off.  I was scared it was going to be my fault. I was terrified for many many reasons.  But I did it. 

This weekend stretched me so far beyond anything that I am comfortable with.  Meals were exceptionally scary !!!! I mean sitting in this huge room not really knowing anyone and eating a meal.  Some think whatever not a big deal.  For me that's close to all of my fears wrapped up in one place....I think my heart was going to beat out of my chest.  My hands were shaking and I wanted to run.  And before we go in, they give you a penny an ice breaker....oh my poor heart !!! And I love talking to people its just so hard for me.  And I sat with an amazing couple whose daughter had some similarities to Mariska .  They were so kind and I was relieved.  Then Jodi cam e and sat at my table, and she was so welcoming and so open and she really knew her stuff.  She was AMAZING.  Sometimes I have a feeling with people and she was just one of those people.  I loved her from the moment I met her she was sincere and true and it was amazing ! So I made it through that first night....Whew...my heart still intact.

The second day there was the speaker, Shannon Pickard. I had a few aha moments and that needs a blog all its own, so that one is coming. Ha aren't you excited ??? Just  kidding !

The day was filled with other parents talking about the unknowns, things that concerned them, things they were dealing with in school.  I was quiet letting it all sink in.  Others dealing with some of the same things, pretty amazing.  That afternoon there was the meeting with the geneticist.  I was scared I was terrified.  I was scared she would shut me off when she found out they were conceived in my rape, I was scared Mariska's disorder would be my fault.  None of those things happened.  She did not shut me off and I was told that for Mariska it was just a random mutation no ones fault.  I felt lighter right away.  ITS NOT MY FAULT.  I can not even tell you what that means or how that makes me feel.  Yes she has this, but she is going to be OK.  Things may come up but we can deal with them as they come.  She is truly going to be OK.  OH my heart, Oh my heart such relief.  I was not treated any different.  I was just Mariska's mom trying to get information to find out how to help her.  That is all.  How amazing is that ?!? Very amazing. I was in a daze I think the rest of the day.  So much relief and a contentment that I had never felt.  Finally I was brave enough to introduce myself to Kelly.  She was wonderful and welcoming, I could not thank her enough.  She also had a kindness a warmth that I was so thankful for.  There were so many things that I wanted to say, but I am not sure any of them came out.  But another one of those people that just touched my heart and I am grateful for the kindness even in my awkwardness.  At lunch I was speaking to one of the presenters about Mariska and her issues with her nose, and having trouble breathing and she said I needed to talk to Dr. Fete, that he would be a great resource and would have some ideas and in the middle of lunch she went over to him and he left his lunch to come and talk to me !!!! Are you kidding me ??? Me who doesn't want to bother anyone and she went and interrupted his lunch, I was in shock yet so grateful.  He came right over and was like how can I help you?  I mean he was eating his lunch and came to answer my questions ? I know I am kinda crazy but that was really amazing!!! He gave me some ideas and things I could try and said that he would be around if I needed anything to just find him that he was there ! Seriously this was an OH MY GOD !!!  When my entire life there have not been many people who have gone out of their way for anything, yet each and every person that I met here at the conference was more than willing to listen and to help and offer their expert opinions.  That was truly amazing.       

I have to admit Friday is a little bit of a blur. Thursday was overwhelming on every level and I was beyond grateful, I could not believe the experience that I was having and the kindness that people were showing.  But it was more than people showing kindness its who they truly were and it showed, it came through with everything that they did.  I was AMAZED at everything, at every experience, with each new encounter.   We had our dental consultation early that morning and again they were not worried at all.  They said not to worry about the tooth that I was worried about.  They said she would need orthodontics but things all in all were good, she has all her teeth and braces were in store but nothing spectacular ! WOW everything was so good.  My amazing Mariska is in such good hands.  People have listened to my concerns and over and over I have been reassured and that my friends is priceless.

That night was the talent show and I was just grateful.  I had kept back the tears, but by Friday night there was no holding them back.  The courage and determination and love that was in that room I can not even accurately put into words.  If you were not there I can not make you understand.  I was grateful to be there and and so thankful that my sweet Mariska Anne was healthy and going to be just fine.  Then there was Norma's story that broke my heart but filled me up.  She would hold her hands on top of her covers each night asking god to fix her and would be disappointed each morning when her hands were the same as when she went to sleep.  She found the NFED only a short time ago and realized that she was not the only one, and finally got a name for her condition.  She was inspiring.  As her story was told, I could relate to so many things.  Of wanting God to do something, but then the realizations that came for her through her being a part of NFED.  All things I was experiencing, all in a different way but I related to her words and her story.  Norma your an inspiration, I am thankful.

Saturday I was spent.  Even my reserves were running low, I was stretched all in mostly good ways but when you are a person who wants to fade into the background a conference like this is difficult on EVERY level. I couldn't even eat lunch in the dining room, I could not find a table to sit with people I did not know so I reviewed for my math test so time was not wasted. I just needed some quiet, some time to gather myself. 

I am amazed at this week that I was allowed to be a part of. I have met people that I am sure will always have a piece of my heart.  I am amazed at the kindness that I was shown.  I am more than grateful, thankful for being included.  I saw so much courage and determination to help and get things done, and to make a difference . I am sure that in these next few days and weeks as my time at the conference sinks in; my heart with be thankful each and every day. To my new friends, I thank you, to the kindness of Dr's I am speechless.  I am so happy, and content and overfull with all the things that were shared and given to my family.

From my overflowing happy heart, I heart your heart and am glad you are a part of my journey.

 

 

~~~THANK YOU THANK YOU~~~

 

How big is your BRAVE ?

Well I would not say that I am a very courageous person. I am exactly the opposite.  I am actually a pretty big chicken.  I like a schedule, I like things to be the same, I DO NOT like surprises and things out of the expected.  Last week when I went to see my brother, I proved to be braver than I ever thought for two children that no one notices and no one fights for.  Then again this weekend I got my brave on and stood up for my children and myself. I won't stand by as others are mistreated and I won't be mistreated either.

My brother has been having some heart issues.  He had all the symptoms of a heart attack and was scared.  He ended up in the hospital twice in one week and finally Thursday evening they kept him for observation.  SO I said well we have to go make sure that he is OK. So Friday We packed up the dog, the guinea pig, and we all left for Victoria.  They let him out of the hospital and he was home when we got there.  The girlfriend was vacuuming, I kinda didn't say anything to her.  She is more like an extra child than a partner for my brother and he likes it that way.  That's fine but he could have had a heart attack and she needs to step up.  The older girl was in trouble so she was in bed, but the little one was up and was excited to see us.  We spent time talking but after two days in the hospital you are tires so my brother went to bed.  Being there is hard for me anyway, the house is not taken care of.  The kids are not taken care of  and it makes me sad.  Life there is sad and I can't do anything about it.  So Saturday morning we all woke up, just chilling out letting Chris talk .  They basically said that his life style is more what is causing his heart troubles.  Personally I think his heart hurts on an emotional level and he just doesn't have a clue what to do.  The girl friend wakes up sits in the chair her kids wake up she sits in the chair.  Chris takes care of HER children.  There was an issue outside Chris gets up and takes care of it.  And it doesn't phase her in the least.  We are all sitting at the table talking she watched Disney on TV and knows all the characters.  That's who she is.  My brother just got out of the hospital and she is not telling him to sit down to rest to relax, there is no offer to get him a drink or to ask him if he is OK.  I am boiling inside.  I know hate is a very strong word.  But, I hate her.  She doesn't take care of my brother and she doesn't take care of her children.  So we run to the grocery store to get things for dinner.  I decide to celebrate my brothers Birthday early since we are here.  We get decorations, a cake, we just make things special people don't do anything for him.  So we are all getting ready for dinner. Chris has to tell her to get dinner for her children. Then she gets hers and sits and starts to eat.  Mind you no one else is sitting down yet.  Even her son that is 5 said momma wait until everyone is sitting down so we can eat together she keeps eating and says "I am just snacking" she thinks its funny.  The kids wait for everyone. The older one asks if we can pray before we eat, her mother says no and continues to eat.  We eat and we are sitting laughing I am enjoying being with my brother and we start talking about his heart and what is going on, and the stresses that he has.  I honestly don't have a clue what started it, what his girlfriend said but I got Brave.  I was shaking, I could barely speak through the tears but I turned around and was brutally honest.  I told her that my brother almost died, and that she needed to step up.  I said that those were HER children and she needed to take care of them.  I previewed for her some of the things that I had seen through out the day.  I was so upset, I am tired of people not taking responsibility for what they do.  I went on and on, and she had no comment.  Once she said well I do, and I went again no you do not and gave her more examples.  I did not yell or swear but she needed a reality check.  She was more than Mad.  I didn't care, I didn't say anything I didn't mean, or anything that didn't need to be said.  Then I laid into my brother.  Telling him that he does everything.  And that these poor children were drowning and no one cares.  They care for them and love them when its convenient.  I went on and on, because as much as I don't like it I love those kids and I hate how they live and how they are treated.  I don't care if their mother falls off a bridge, I will not let them take the kids with them.   Then there was silence.  The girlfriend was outside smoking, swearing up a storm, my brother trying to make everything pretty.  I was doing the dishes.  The children were all there.  My Vincent was smiling, Little Jaiden came up to me and ask if I was crying and asked what's wrong ?  I said that I just wanted to take him home, he gave me a hug, no he more held on and just smiled.  No one sticks up for these children at all they have big things going on and no one cares, no one wants to see, no one wants to do the work needed to help them.  She came in stormed around the house I cleaned up from dinner.  I felt lighter, I will not loose my brother over her lack of caring and lack of responsibility.  What a night......Then we had the birthday cake......Happy Birthday.  I won't take the excuses when children are involved.  We left early the next morning, I was more than ready.  And my brother said Jaiden woke up with a huge smile saying "Sherri wants to take me home !" and I would in a second.    

Again Saturday my brave was tested.  It started with once again my things being thrown in places they don't belong, and people not caring because they aren't hers.  Well the kids and I leave for Houston in a week and a half, and the only thing I am worried about are our things that are around the house, she throws them around when we are there who in the world knows what she will do when we are not there.  It started this afternoon with her removing kids pictures and a few of my things off a table and I asked her just to please put my things with our boxes and i would take care of it meaning I would just pack it away until we are in our own place.  That made her mad, she said that she thought those were her pictures uh..no they are not. So fine.  Then I was in the kitchen and I asked her please leave our things alone while we are gone and she says what what do you mean ? Totally oblivious, like what in the world are you talking about ? At that point I was done, her oblivion hurts my heart and I can't take it. And here is where the brave kicked in......I am so very hurt and tired of how I am treated.  So I said to my mother:

You know you treat us awful, (well I think I said you treat us like shit to be exact !) I am tired of you talking about your house ! because for 8 years its been our house and I am sorry that our things bother you, and I am sorry that you don't want us here anymore but you can't throw our things around.  And I promise that we will be out of here as soon as we can.

I was shaking and crying and there was nothing from her.  I went on cooking dinner and there was nothing. She just walked away.  I was talking from my heart and I can honestly say I would be better off saying nothing.  She feels nothing for me and I can  say she does not care. She is so totally wrapped in herself.  With that I am speechless.....there is no rhyme or reason.....I am working harder than I have ever worked and she hates me.  I know its things about her but they affect my children they affect me and it more than hurtful. Things that are hurtful beyond repair.

You know people always say well say things to get them off your chest, it doesn't matter how the other person reacts. At least the words are out of you and you are better off....Well my friends I disagree.  Why bother telling  ?? I am better off  keeping things to myself.  Because then at least I spare myself the hurt of a non responsive mother. I am glad I said all that I said to my brothers girlfriend but nothing will change, she will not care for her children.  So with my brother I am glad that I spoke up, it felt better.  With my mother not so much, I just get this blank stare I guess she is still trying to figure out her feelings for me.  I think she already has that's why I am treated like I am.

I am just working so SOOOOOO hard and the kindness of others has been more than amazing and I am so very grateful.  It always hurts when your family, the people that are supposed to care and take care of your heart don't.

I have been braver than Brave lately and I fear its not going away.  Part of me is glad, part of me is scared to death.  I am going to take today and make it wonderful I don't have a clue what the future holds for my brother or his girlfriends children, but I can tell you I will treat them amazing and make them feel loved and cared for.  And for me in my children I will stand up for them and for myself, I will not be stepped on.  I DO LIVE here for right now and I am doing all the things I am supposed to.

So be Brave say what you need to say, talk, feel and do.  It will make a difference somewhere out there .  So its just my kids and I.  Together we are going to BRAVE for ourselves and for others.

 

 

Be BRAVE my friends, I heart your heart.