Photos have been posted on Molly's Google Page CLICK HERE
Wow, what a long few days we have had. We arrived in Omaha on Wednesday. Our flights here went well. Jim’s Dad was kind enough to use frequent flier miles so that the 3 of us could fly FIRST CLASS – what a luxury! Molly was happy the first leg and just a little fussy for the second flight, but overall she tolerated the trip quite well. We dropped our bags off at the front of the hotel and continued in the cab to Children’s Hospital for a tour of the facilities and a meeting with Dr. Plotkin. Wow is all I can say. The facility was very nice, but the people were phenomenal. The nurse gave us a tour and was so personable and helpful. She answered all of our questions and showed us all around to give us an idea of what treatment at the facility was like and what they had to offer.
Next we met with Dr. Plotkin. I cannot begin to say enough good things about him. He was friendly, informative and very down to earth. He has a great sense of humor and made sure that he answered all of our questions. I left having a better understanding about his philosophy for treatment. He spent a lot of time with us and didn’t charge us a penny for the visit – what a guy! We left the appointment and headed back to the hotel. We went straight to a consult we had set up with Dr. Cintas, a physical therapist that specializes in OI and wrote a PT book specifically for OI. She gave us some great ideas and techniques and helped us to understand what we should be working on in the coming months.
After all of this we finally had time to check into the hotel (around 3;30). My Mom was there for the consult with Dr. Cintas and Jim’s parents arrived soon after.
The next several days all seem to blend together. We met some wonderful people and learned a great deal both from them as well as from the different lectures that we attended. We met a wonderful doctor who has OI and spent a lot of time talking with her. One of the first people I spoke with was in a wheel chair and had a more severe form of OI. She welcomed us to the conference and told me not to be too overwhelmed by everything. Somehow I was able to take comfort from this. She was so happy and approachable. I spoke with a couple of teenagers in wheelchairs, one of whom I have read about in the online forum I belong to, and got a great sense of how happy they were despite some physical challenges. They were both so comfortable with themselves that I felt at ease talking with them and felt comfortable asking them about their wheelchairs and surgeries etc.
Coming here has given me a new level of comfort with talking with people with physical disabilities. I see them in a very different way. I am learning that you can be just as happy, and often happier, than those without physical limitations. I am loving this new perspective. It was so nice to see everyone completely at ease and blending in with the crowd, something that does not happen outside of this environment. There were a lot of first time attendees that were seeing others with this disability for the first time. What a wonderful opportunity this is for everyone.
I was prepared to be emotional throughout this experience, mostly filled with sadness and fear, but I really haven’t had that experience. I became emotional seeing how amazing some of the parents are. I also loved seeing how happy the kids are . There was one extremely severe boy tonight on the dance floor with his mom holding him. It was beautiful to see how much she loved this boy and to see how happy they both were with life. It is always nice to get a glimpse of people, who go through such tough times, in a happy place. I think having such big challenges helps you to appreciate the good times that much more.
I am SO glad that we made the trip here. I know that Molly, and the rest of us, are going to benefit so much both from the information we have absorbed and the connections we have made. The friendships that we have made here are lifted to an accelerated level due to the commonality of our children’s diagnosis. There is so much that we all understand without explaining. There is nothing like having that feeling that you are not alone. I have gotten that sense to a certain extent through the online community, but meeting people in person has a much more profound effect.
I have had moments of fear on this trip as I look at the most severe individuals and worry that that might be our future. I also had some moments of hope as parents told me that their child looked just like Molly and now walks. It is overwhelming not knowing what our future holds, but I am happy that we only have to take things one day at a time. It would be more overwhelming to know what the coming weeks, months and years have in store for us.
I am so grateful that we had the opportunity to make this trip. I am going to make it a priority to help make this privilege more accessible to those that are not has fortunate as we are. I want others to be able to benefit from the sense of community as well as the wealth of information that comes with attending this conference.
There was a dinner and dance this evening. I found this to be the most emotional time of the whole conference. Seeing all of the children and adults with varying degrees of severity all together on the dance floor enjoying life and enjoying just being one of the crowd was wonderful.
They announced that the next conference, in 2008, will be in Washington D.C. I am so happy that it will be driving distance. I am already looking forward to attending the next one, especially because Molly will be old enough to participate and interact.
We are home now and SO happy to be back. It was a long 5 days. Molly did exceptionally well under the circumstances. She rarely got to nap for more than 15 minutes, but stayed in good spirits. She got a lot of attention from both grandmothers as well as the people at the conference. She seemed to enjoy the attention and soaked it all in.
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