Happy New Year and welcome to 2012!

I did not post in December because I was extremely busy getting OPTN holiday mailing out on time before Christmas. I mailed 950 letters. I like to think they are Nicholas’s fan club. I feel lucky that so many would be interested in our son and our lives. It is quite humbling to know (beyond my family) so many friends and even strangers follow us and care. Honestly it lets me know that there is a  lot of  good people in our world.


Well if you have been reading our web site all along you know we still never sit still! December whirled by like a hurricane. Stressful but also enjoyable with decorating, shopping, gift giving, holiday parties.

December ended this year with another trip down to Disney the week before Christmas.  This year my parents joined us and gave us a big hand with my boys. We stayed at a Disney resort because it is on the monirail and easy access to Magic Kingdom and Epcot.  Staying on the monarail is easy with  a wheel chair. Just walking into this resort smelled like fresh flowers and was so elegant…Chris knew Nicholas would appreciate this smell as when he was well he loved smelling the flowers when he was well. 

Our days were packed but we also were not rushed. We spend time at the Magic Kingdom, Epcot and took the bus to MGM. I think Nicholas had a fantastic time. His favorite ride was the haunted house as he squealed in “Boooooo” the whole ride.  He tired easy and became overwhelmed by the noise, we took a lot of breaks, ate a lot of food and were off into the park again. Nicholas enjoyed the characters and the shows the most. He was often all smiles or his eyes appeared to be following along intently.  The trip down the Disney this time was  much more work as Nicholas needs have increased since the last visit 12 months before. Worth every minute and we continue to make memories for our family.

We did have a  incident with Nicholas safety seat on the ride home from Disney 2 days before Christmas. We were asked to take Nicholas out of his safety seat  because it did not indicate on the seat it was FAA approved. But this is the same seat we had flow down to FL with from NH and we had not had a problem.  It would be a problem not using it because Nicholas is unable to support his own body.  The safety seat was our best and safest option but we were still asked to take him out of the seat to be stowed under the plane or get off the plane.  Nicholas did have a very difficult ride on our laps. He cried most of the trip as he was very uncomfortable and it was hard to sooth him to relax. I was a nervous wreak trying to keep him hydrated and on top of giving his medications  held on my husband’s lap during the flight was not an easy task.  Most of his medications are to prevent seizures and he takes them 10 times a day. In the end like any mom of a crying baby…I ended up crying with him…. It was a stressful trip but we made it home safe and Nicholas was back to himself once we were home. We have been talking with southwest airlines about our flight and they have apologized. Our hope is that no child or adult with a disability will have to fly uncomfortable. We understand it was miscommunication and the rules are not clear for the disabled flying. We hope to make the rules clear and to get as many safety seats approved as we can for disabled children and appropriate seating for any one who has a disability.  We are working together with the airline to get this moved forward in the right direction. A positive that came out of this situation was that we did get media attention toward awareness to batten disease.

Thank you for the outpouring support for our family and Nicholas in the southwest incident.

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Our Promise to Nicholas
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Bedford, NH 03110

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