To Travel or Not To Travel

I have been thinking about what I will include in my novel and what is just too much. I don’t want the amount of information to seem overwhelming, especially since my target audience is made up of parents with special needs kids. I know that there is information that can be of great use to parents that are just beginning their journey. There is also a point of information overload, which is the point that I want to stop. Learning how to travel with my son has been a project and it is always changing form. From the time when Parker was a baby and we needed all the baby paraphernalia to today, have drastically changed. Where most people say that they are so happy to not need to tote around so much to travel, we might be toting around even more now. We still need everything needed for diaper changing, as well as everything needed for potty training, these items alone take a suitcase. We need lots of clothes and pajamas just in case of an accident, just like with a baby, another suitcase. Parker needs lots of entertainment to be happy, so we pack numerous toys, DVD’s, CD’s, and a DVD player. This makes another suitcase. We travel with an airbed and a tent bed that we tailored to fit our needs to keep Parker safe, yet another bag. We also have to have the wheelchair and if there will be traveling in a car, other than ours; we need the adaptive booster seat. Parker is on several medications and he requires applesauce to deliver these meds, he drinks Pediasure to help put on the weight, and he requires various specialized cups for drinking. Well, I think I made my point, we don’t travel light. Our last trip was 5 nights to go to Washington DC. I counted our numerous bags and Parker had 8 of the 10 we took.

Now, it sounds like I am complaining, but, I am not really. My point here is that we give a lot of thought to whether a trip is really worth the trouble before we commit. There is a lot more to traveling that I need to include in my book; but, I decided that a recent letter I wrote about our trip in DC and attending the Restoring Honor rally, would explain the rest. Rather than just repeating what I already wrote, I thought I would just include the letter that I sent off to Glenn Beck to tell him about our experience of getting to the rally.

Hi Glenn,

I wanted to let you know about my experience of coming to the rally on 8-28. From the moment the rally was announced, I felt that I needed to be there and very much wanted to be there. I didn’t think that our family would be able to go because our son has Mowat Wilson syndrome and part of his disability is epilepsy. He was undiagnosed until he was 7 years old, and most doctors we saw until he was about 5 years old didn’t even recognize that he was having seizures. When we moved from California to North Carolina 2 years ago, a geneticist was finally able to identify his syndrome and we found a wonderful neurologist that was finally able to tell us about his epilepsy and give us a game plan. Since this email is not about his disability, I will just give enough information to be able to explain my experience in getting to 8-28. Since we have only recently been able to work on controlling the epilepsy and it is still not under control, I was concerned about traveling with him. He has a hard time sleeping away from home which causes him to be tired which leads to seizures and many times he gets ill from sleep deprivation which also causes seizures. Because my son is nonverbal due to seizure activity and his syndrome, he can’t tell us if he is too hot or uncomfortable and I was concerned about being outside with him for so long during the rally. He tends to have more seizures when overheated.

In any case, I felt that I needed to find a way to DC for the rally and about 3 or 4 months prior to the rally I began looking into hotels and some way to get there. For us flying is a nightmare because of all the security and my son has a VNS (vagus nerve stimulator) so he can’t go through the metal detectors. He can’t walk on his own and we travel with his wheelchair, his special bed, and lots of equipment and supplies. We looked into driving and realized that the drive would need to be done over 2 days because 4-5 hours is about as long as he can be expected to sit happily in the car. We did get 2 hotels booked and decided to stay in DC for 3 nights to do some sightseeing because my husband and I had never been to Washington DC before. The hotel we found was right outside of DC and it was a little less expensive than staying in DC. Unfortunately, we didn’t realize how difficult getting from the hotel to the rally would be for us and once we started to hear about parking issues and the reality of taking the metro and the worry of whether we might need to leave early with my son and getting back to the hotel, we decided we would need to pay more for a hotel in DC. Fortunately, we found one that was about 1.25 miles from the Lincoln Memorial and we could walk that.

Since we needed to arrive at the mall early on 8-28, I walked with my parents, who came with us, with our lawn chairs to find a place and my husband stayed in the hotel to feed our son and come along just before 10:00. We were hoping that keeping our son’s time in the heat to only the 3 hours, that he might not have a seizure. Unfortunately, he had 2 seizures the morning of the event at the hotel before leaving. They made it to the mall just before the event began. I must say we met some really nice people and they were all so helpful and concerned about my husband and son finding us. One gal offered to text my husband because we were not getting cell service and we lost our connection. People were willing to let him through the extremely large crowd to get to us which was amazing. My son was playing with his toys and I was going to take them from him so the noise wouldn’t bother anyone and the man behind me told me not to take his toys because they weren’t bothering anyone. I must say that he made it possible for us to stay for the whole event because my son was happy. I don’t think I have ever come across so many nice people in one place.

The rally was fantastic and was definitely worth all the trouble to get there. We felt the presence of God, beginning with the geese that flew over us at the beginning and again at the end. We found a place near the reflecting pool by the trees. We were fortunate to be in the center section and not on the sides. We were too far away to see the stage, but, we had a view of one side jumbotron. The event was very moving and we really felt a sense that we are not alone. What a tremendously large group that was praying together and really feeling the prayers that were being said. It felt amazing that we were all on the same page and talking to God together. We felt that we do have a voice and there are a lot of us that want our country to return to its conservative God centered roots.

I want to thank you for the rally and thank you for all you do on the radio and on the television show. We have learned so much about our history and we have been reading the books you have recommended. We are learning for the first time about our country and its founders. I pray for you and your family and staff and I know God was blessing all of us on 8-28.

When we returned from our trip, my son’s aide asked him if he liked the museums and he answered no and then she asked if he liked the rally and he answered yes. He played with his toys throughout the event, but, I know he was paying attention too.

God Bless,

Lori Linn

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About Lori Linn

Besides writing, Lori has been an Actress both on stage and in film, is currently a member of SAG and AFTRA, and is a credentialed teacher as well as her full time job as a mom.
This entry was posted in Children's book, novel, non-fiction, seizures, epilepsy, VNS, special needs, disability, genetic disorder, author, Mowat Wilson Syndrome, disability, special needs and tagged , , , , , , , , . Bookmark the permalink.

One Response to To Travel or Not To Travel

  1. Bria Phillips says:

    Another good post! Beginning to think you should just turn your blog into a book! I for one love the letter to Mr.Beck! But we know he holds a soft spot in my heart! You are truly a WONDER MOM! Just talking about all it takes to travel makes me tired…and I saw the suitcases, you weren’t kidding! Keep up the gret work!

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