Travel with a medically fragile child

We decided to sell the house before we lost the house. We sold it for what we owed on it. We were given basically 2 weeks to move everything and clean the house. That was the deal. It seemed like our only stability. It wasn’t though. It was a nightmare just giving money to the mortgage company, the utilities. My husband was working for nothing really. We couldn’t both work. I didn’t even know if my child would live one day to the next. This went on for 7 years.

We had to travel to Memphis for court for the hearing for vaccine injury. Our oldest daughter sick and running a high fever. Our baby seizing and not doing well. They don’t care. This is what you do. They leave you to sit, hoping your child dies and that court will never happen.

We were promised so many things by the attorney who went to court with us. My husband and I went to court at different times. This is Federal court.

The case was won. I will tell you though no one plays fair in this court. The child even though it appears they win. They don’t. The most heart wrenching thing I have ever done, health with, or experienced in my life.

Traveling to get care with this little one was a challenge. We stayed at hotels, vacation rentals, you name every brand they were all nightmares. We got sick, shingles, and shigella, Ecoli. We were getting sick trying to get her well.

We always kept the little travel trailer in the back of our mind. We ended up selling the majority of our belongings and giving the rest away to the homeless shelter and an organization in Northwest Arkansas that supports a soup kitchen and the homeless.  Its just stuff but now we have nothing but our family. Our family who has literally been through hell with this child and haven’t even made it back from hell yet.

We felt the Pediatricians, Dr.s and Specialists were lying to us. With holding information from us which meant they weren’t treating our daughter. I found a BioMedical clinic –

biomedical scientist also known as a biomedical doctor or medical scientist or clinical laboratory scientist) is a scientist trained in biology, particularly in the context of medicine.
We actually had a consultation with the Gastroenterologist, then we were suppose to see one of the Specialists but because there were so many issues with our daughter they suggested a new partner who was in general Pediatrics.
After a visit to Childrens Hospital Kansas City Mercy Our daughters both were hospitalized after we had stayed at a Holiday Inn Express and were diagnosed with Shigella.
This new Dr. we would have multiple phone visits with. He was moving to Texas at the time. So we had phone visits and phone consults. We couldn’t afford to travel and we couldn’t fly due to the Dr.s stating it would not be safe for her to fly.
We moved to a couple of apartments in Northwest Arkansas because we couldn’t afford another home. We didn’t want another lease with an apartment and apartments are not always the best for children. So we knew we were being advised to travel for our daughter to get the best possible care for her.
We moved to Bella Vista into a vacation rental. This was furnished and we would wait on the decision of the court to proceed further.
When we won we decided it would be best to travel to S. California based on our BioMeds advice. So we rented a uhaul truck with what few belongings we had. I had left our family heirlooms with a friend that I knew from school. He offered to bring the belongings to us in S. California once we got settled. This never happened. When I asked what had happened to them. He claimed they were stolen. These were items my mom and grandmother and aunts had given to me over the years. All gone.
When we got to S. California we decided to stay in a vacation rental. This is the only way we could somewhat stay long term. It is really, really expensive in S. California.
Once we felt confident the treatments and therapies were working for our daughter we decided that the FMLA or Family medical leave act was running out. My husband looked for a job. He was promised a job with his company but once we were there it never happened and they forced him to leave the company.
Our daughter was doing so well. She was making progress.
We were still alone. No friends. No family.
But we really were not alone. God was with us all along. We know this now.
My husband was only able to get a couple of part time jobs and jobs that didn’t pay enough money to live there. So we had to look at leaving the only area that we knew where she was being helped.
It really was tough for us to make this decision but after 4 years we didn’t have a choice. We couldn’t afford the rent, the hotels or the vacation rentals.
We decided to move to the neighboring state so we were within a day or two travel of therapy and treatment. However once we moved and after doing 4 plus years of therapy and treatments we were so tired and exhausted we couldn’t do it. My husband wasn’t able to secure employment there either.
While in Arizona we decided that we would look for another travel trailer, or RV. In order to do therapies and treatments its good to be in a stable home not moving things around. A hotel is okay and good for short term but we spent almost 6 months in a hotel because the owner of the house we were renting sold the house and then got really nasty to make us leave. The owner of this house told us he was selling the house. We were in the process of packing. He sent realtors and painters while we were packing. The paint caused her to have seizures. The realtors came and different hours of the days and not always announced therefore disrupting our packing. The owner was so rude the day we had the moving truck he brought his entire family grandparents and children to play in the pool. He also had painters painting over our things packed and unpacked in boxes.
We were taken advantage of and sold a faulty van for a handicap van and it was a custom order. We were naive about needing a contract for this. Our handicap van has had electrical issues and near fires in the walls. It has literally fallen apart. The “leather seats” are falling apart and crumbling off. The floors are not what we ordered. The van isn’t even planned what we ordered. Our seats even had duct tape in the seat belt mechanism “inside the seats”. So thankful my husband is handy and not afraid to take things apart. This is all courtesy of Chalmers Automotive that was in Liberty Mo. owned by Jack Chalmers who is now in Kansas City, MO. He sells high end limos for sports teams and stars. This is not why we chose this type of vehicle. I definitely would not recommend this company to do a custom handicap van. I will do another post on him later. Frightening what evil minded people do. He lied to us and told us he would mail us a copy of our contract after we all signed it but never did. This company is not to be trusted. Instead of putting in the flooring we chose he went to Home Depot and bought peel and stick tiles of cork. So many things. The paint is peeling off. The floors are peeling up. We really need a miracle to rebuild the inside of it.
I cant even tell you what we have gone through. Its crazy I don’t even believe it sometimes.
I decided to look for a coach. When we went to the campground in our travel trailer it was to a campground about 45 minutes away in Eureka Springs, Ar. It was called Wanderlust in Eureka Springs, Ar. near the Passion Play of the Ozarks .  The title certainly fit our criteria and we always had so much fun. We were almost blown off the hillside there in a tornado also.
 We were sound asleep and around 6 am one morning with our travel trailer literally on the edge of a hill straight line winds associated with a nearby funnel and strong storm came through. It ripped awnings off of travel trailers, class C’s and class A’s. It strewn lawn chairs and outdoor equipment, camping gear from one end of the campground to the other. We went around with the owner picking things up and making sure people were ok. We rode the storm out for about 30 minutes.
We saw the most gorgeous bus pulling in and we asked the camp host Frank what is that?!!!! Frank said I need to help this man park he just bought this bus new and he is bringing it here for their first trip out. It was a Wanderlodge This bus looked like a rock stars bus. We were both in love with this bus. We would walk to the end of where the coaches were and the vehicles that would need more space than our 16 ft trailer needed just to look at this bus. We were like kids window-shopping a soda fountain. Oh my goodness, sakes and mercy follow me the rest of the days of my life. LOL.
I said to my husband man that is the way to camp. One day I would love to have something like that for our family. Thinking we could never afford it or would likely never have one but the thought was always there. I have always been fascinated and enamored with the beautiful Wanderlodges .
Fast forward from 2002 to 2014 we now have  a Bluebird Wanderlodge and one of the first places we took it was Wanderlust. WOW! And bless God someone else paid the depreciation on it.
Our daughter has multiple chemical issues. This can cause seizures. We can’t stay just anywhere. It wouldn’t matter if it were the Hilton. Because of the chemicals used in cleaning, bedding, foods, etc she has had seizures.
When we stayed at the hotel for almost 6 months to finish out her therapy in S. California it was a nightmare. We had to bring in our own bedding, pots and pans, linens, we had to ask the maids to clean with our products and not clean daily. Someone new would come in and spray the room with air freshener and the hotel would have to move us and ozone the room to get the smell out. This is a nightmare to a family with a child with special needs, handicaps, and chemical issues.
We spent a lot of time looking for the right coach, the price, we drove and drove. We found it. We then have spent a lot of money and time to make it home and safe for our daughter.
Now its time to get back to therapy and treatments. We got stuck in winter but time to move along now.
I realize for most people that it is hard to understand why someone would ever want to live in a bus, travel trailer or van. In our case it is necessity. I don’t even know how we could maintain a house, the upkeep or the expense. We cant afford 2 homes. I don’t know many people who can afford 1 home. When we lived in a traditional suburbia we never had money. We didn’t have time to do anything. Our daughters care took precedence and then house cleaning, lawn maintenance and the never ending taxes, insurance and things you don’t even see.
I dont like the thoughts of stuff and things that are inanimate that take precedence over human life. We live in a  very materialistic world.
I want to give my child every opportunity to get well. She isn’t getting younger. I want her to be able to contribute to society. I want her to do what other children can do.
She has already been at a deficit. The injury has traumatic effects on our child and our family. It has damaged our relationships, our marriage and our family.  It will never be the same.
My oldest daughter has been robbed of her childhood because of the damage control for our daughter who was injured. There is no way to avoid this.
My husband was robbed of his dream career and his moving up in a company. Robbed of retirement that we won’t see now because of a lack of employment in order to help provide and care for our child.
My daughter who was injured was robbed of birthday parties, family get togethers, swimming and doing many social events or playdates because of her being medically fragile. A small reaction to someone else could be a potentially life threatening reaction to her.  Children don’t want to play with her. She is different. She doesn’t understand. She won’t be able to do the things that other kids do. What families want to hang out with families with special needs? Do you know?  Not many. We haven’t had any. Its so sad. Its heartbreaking. Its even worse the family that turns their backs on you and makes it out like we were on a 5 year vacation in California and they really have no clue. I have seen family members to look at her like she has a ” plague”. Shameful.
I feel injured as well. I had hopes and dreams. I wanted to be all I could be with being a full time stay at home mommy. I wanted to educate my children. I wanted to Road school and travel with my children. I wanted to not just teach them about this great country but live it.  I wanted to finish my Bachelors in Science but have been unable to do so with caring for my daughter full time.
You see I did what was suppose to be for my daughters benefit for her health and the end result was that it caused traumatic brain injury and damage to our family.
Our entire family was injured.
We don’t fit in anywhere. We cant say we have terminal cancer so this rules our family out for make a wish or any other wish fulfilling agency. We have had opportunities but could not get medical paperwork cleared because “vaccine injury” isn’t terminal.
We haven’t had a vacation or time off in 13 years. When we have taken time off we were not able to take the time for our family but for others. I can’t even go into the relationships that have been scarred and ruined because of this. I won’t ever go there again.
So now we have the bus for our daughter and its time to put the tires back to the road and move on.
Time to try and heal not just the injuries and damage done to our daughter but to our entire family. Just the 4 of us.
We are slowly but surely rebuilding our website. I had another site but took it down to build this one. I lost all of my photos because my hard drive crashed with a magnet.
One day when I have time I will post photos of the few things we have done along the way.
When we were living in the EMUnit at Arkansas Childrens when we would leave I would say I hate the way I feel when we leave. Im grateful to God that I have my child. Im so grateful. I feel like we need to leave on a good note. So we started staying an extra day after we would leave the hospital and go to the zoo. We would leave another time and visit the Capitol building. Its easier to deal with things that are traumatic when you can regroup. Be thankful to God that He has given you another day. Be thankful to God that He is restoring you.
Just be Thankful to God 

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