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.
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| ~~~THANK YOU THANK YOU~~~ |
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