It was great to see everyone at the conference. I really hated to leave!! It's so nice, for just a few days, to be around other families who really UNDERSTAND your life. No one stares at you when your daughter seizes or is getting her tube feeding, or hollering at the top of her lungs! I feel so fortunate that we have each other to lean on...what a wonderful family to be a part of!
--Ronda Parsons, Marissa's mom
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OK this is really long. I keep thinking of more things I want to share. My heart is so full and I seem to be having a hard time getting all those thoughts and feelings together to share.
I always think that our Disney trip reports are hard to type. So many feelings and emotions. WELL!!! What can I say! This trip is just as hard if not harder. I had intentions of typing this on the way home. It took me until tonight to even process my thoughts enough to write about it. I have feelings of joy and happiness to be able to see all these wonderful families, our old friends and to make some new ones. Feelings of sadness because some of our girls were not with us this year because they have gone home. Also feelings of sadness because some of our old friends were not there to share this weekend with us. Feelings of emptiness on the way home because I did not want to leave everyone. It's a feeling of safety, a comfortable, loving and welcoming feeling. What a very appropriate title for our conference this year. Coming Home. It was so much like coming home. It was definitely the comfortable feeling of coming home. A love like no other.
Just imagine 60 or so Michala's in one room. Well maybe not all of them have her sassy little attitude. Some of them are very sweet like Mary Elizabeth. A few of them are very active like Marlee Anne. All of them are full of love and compassion that some of us only dream of having. They have the most amazing spirits!
I thought of how my feelings have changed over the past years since the first conference we attended. I looked around the room and saw me in so many of those new mother's faces. I am excited for the day when they have the feeling that I have. Thankfully there are already new moms that are at that place. They are enjoying and realizing all the blessing already.
I know I say this each time we have a conference but where can you sit in a room and have your child scream out, have a seizure and just be themselves and not be stared at. It was such a neat sight to see dozen and dozens of wheelchairs in the lobby. Everyone looking at each others wheels and comparing rides like you would cars. Mike commented about how much money was invested in all those wheelchairs in that room. We didn't have to worry about the girls wheelchairs being bumped while we were sitting at the tables. Everyone was very aware that those chairs were very much a part of the girls.
Some new doctors were there this year. They met with some of the families individually. It was so funny because Maryellen told us that we might want to sign up because the doctors would probably be very interested in meeting with us because of Mary Elizabeth's Mito disease and Michala's Aicardi syndrome. Well we saw the ophthalmologist first. He looked at both the girls and asked which one was Michala. After we told him he wanted to know who Mary Elizabeth was. When he found out it was Michala's "blood" sister and not one of her Aicardi sisters he said maybe we should sit down and tell him the story. It was quite funny to see the look of shock on his face as we told the story. Dr. "V" was quite overwhelmed with it all too.
Thanks to Sara for saving Michala on the blood draws. We were scheduled to have Michala, Mike and my blood drawn for research. Sara came out of the room and told me I might want to check to see if the tourniquets were latex free because they only had two. Well they weren't latex free. I was so thankful that Sara thought of that because since the doctors were from Baylor I do not think I would have thought to ask. We also had two other girls there that have latex allergies.
We had a professional photographer that came to the conference and took pictures of the girls and their families if the families wished to do that. It was wonderful! I cannot wait to see the pictures. Thanks Tommy and Kara for getting Laura to come!
We found another twin for Michala. Anna wasn't there and that was really hard for us not getting to see her. As I was sitting there one day I heard her. I knew it couldn't be Michala because Michala was right there with us. It had to be Anna. NO! It was Haley. What a beautiful beautiful girl. Such a wonderful family! It was great to talk with Haley's parents Joe and Heidi. It was neat to see just how much Haley and Michala have in common.
It was great to finally be able to put faces with names. I have been emailing with so many of the wonderful parents that I got to meet. I was especially thrilled to meet Annick (France) and Jacqueline (Greece) for the first time. It was great to meet Donna. It was so funny because I was sitting next to her and she was talking to Marcie. I had spoken to her a few times and just then something clicked and I realized who she was. I lost it! As Kara would say she was shocked I cried. LOL!!! Actually I really did well for most of the conference and kept my crying under control. Donna and I clicked and had a wonderful time talking to each other.
I loved spending time with everyone and hate that I didn't get to spend more time with everyone. There just wasn't enough time. So many families I had to speak to quickly while passing them in the hall. I hope to get to catch up with everyone with emails soon. I was so thankful that Melanie and the girls made it. Would hate for Marlee Anne to not have her picture made with her name sake Marlee.
I missed Kris & Richard, Anci, Angie & Barb being there so much. Lots of others too. I hesitate to name people because I know I will leave someone out.
Thanks a million to Denise for planning such a wonderful conference!!! For being such a wonderful mother and loving friend!!! My life would be tough without you!!! Thanks so much to the Meo's for making it happen!!! Thanks to everyone who helped make all this work!!! I am not going to name names here because I am sure to leave someone out and not mean to.
I do want to thank Kay, Kara's mom for helping us with the girls so much. Also for Kara and her help with the girls. Alex, Laurie, Ethan, Jared, Amy and all the other siblings that welcomed Marlee Anne and showed her around and helped her. For Amber for stepping in and taking Kevin's place and getting me Starbucks coffee. For my wonderful husband and the girls loving daddy, Mike for working it out to come with us. This year was a very special experience for our whole family.
OK I am closing now. I hope that I was able to share my feelings clearly enough. Please know that each one of you that were at the conference and that were not able to attend have touch our lives in ways you may never know. Thank you for sharing your lives and especially your precious angels with us. May God richly bless each one of you. We continue to remember each of you in our thoughts and prayers.
--Kelli, Michala's Mom
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THE CONFERENCE WAS WONDERFUL!!! We felt bad we couldn't stay for any of the program today. Denise, Maryellen, Pam, Sue B, etc., etc., etc., (!) ALL DID A WONDERFUL JOB!!! The girls were all beautiful.
On the subject of the girls all being beautiful. I realized as I talked to the parents and the girls, I started sounding like a stuck record, telling the girls how beautiful they were. But it was TRUE! Every girl is just extremely beautiful.
We missed those who couldn't come, and we really missed meeting sweet David. We were so happy to meet families who were there for the first time. We hope you weren't too overwhemled, although from our experience we know it can hit you that way.
I've GOT to get more laundry done, which is lucky for you all, because otherwise I wouldn't shut up!
Thanks so much to all you parents who shared your daughters with those of us who no longer have ours. It is a bittersweet experience, but mostly just sweet.
Hope everyone checks in when you get home. I'll get my pictures developed tomorrow, and I'll be sure to get a CD, so if we got any good ones, we can post them!
--Cindy Hodgeman, Jessica's mom
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I just wanted to say what a wonderful experience the conference was for me, Lynne, and Caitlin. I have never met a group of nicer people. That was one of the gifts that our daughters have given us. There we were from many places and backgrounds, and yet we all felt like one family. This was truly an amazing weekend. We made many new friends, and we learned so much about the disorder that before had made us feel so alone.
I want to thank all of those who organized and paid for this weekend. It can not be understated the debt we owe to families like the Meos who raised the money for us to all meet. I would also like to thank all of the "oldies but goodies" who made the extra effort to make the new families like us feel at home. And of course the biggest thank you goes to Denise Park Parsons and those who helped her organize and run the weekend. They did a fantastic job.
Now that we are home, I am already missing all of our new friends. I am amazed at how many people there were with which we connected. I hope that we find ways to meet up before the next conference. If we can't meet up, at least the technology has made it easy to stay in touch here.
Now that we are home, Caitlin is battling a cold. She's a little stuffy, but she seems to be otherwise fine. I spent all of yesterday on the phone organizing different aspects of her care. I had nearly 20 minutes of messages from caseworkers, therapists, and medical supply companies from just Thursday and Friday.
It looks like we are heading to another IFSP meeting. We are changing vision therapists and adding on a music therapist now that she is available. Caitlin will now have Occupational Therapy, Physical Therapy, Speech/Language/Oral Motor Therapy, Vision Therapy, Aqua Therapy, Music Therapy, and a Developmental Teacher. With seven therapists, I don't think that Caitlin and I are going to get bored anytime soon.
We do miss you all, and I can't wait to read about everything that is happening to your families.
Take care and thank you,
--Michael Thomas, Father to Caitlin (20 months)
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Hi everyone,
I hope you all don't mind me in "ditto" mode, but I to just need to say thanks for one of the best weekends ever!! For all of the wonderful people who made it all happen, and all who helped in the many other ways. I so appreciate all of you!
Since this was our first conference, I'm thrilled to have made so many new friends, and look forward to making many more. I thought I felt blessed before that Kaylie is in our lives, but for some warmed reason, I now feel even more blessed, if that's possible. I don't know, maybe it was the feeling of not being alone, or seeing first hand all of the love and support, or maybe it was just seeing the beauty that is so innocent in each of our little angels. What ever if was, it's now making more sense understanding what life is all about.
So, will all that said...thanks for the pics, flicks, laughs, cries, splish, splash, feast, family, friends and a whole lot of fun!!!
--Kathy -- Kaylie, Makenzie & Jaycie's mom--ohhhh baby #4 too and wife to Dan--we had a great time--thanks!!!
