The Beachnest

Blue Bluebird Wanderlodge and White Mercedes Sprinter Van

2014 The Grapevine Flood Grapevine, Texas @The BeachNest and The RoadRunner

The Beachnest.  A 2000 LX 40 foot Wanderlodge. Truly this is a blessing from God. We didn’t buy it. We didn’t pay for it. It belongs to God. It was purchased from a special needs medical trust for our daughter that resulted from her injuries.  If anything were to happen to our daughter we would be required to sell it and place the funds back into the trust. This bus is to be used for her lodging for medical purposes while doing treatments and therapy. We would like to actually purchase it one day.

Right now though we could not afford it. We have put a lot of modifications for special needs and special modifications for our daughter. We have taken and will continue to take out things that trigger allergies or anything that could be contraindicating for her daily activities or daily care. I would much prefer that we own it but that isn’t how God allowed it to happen for now at least. We own nothing. We do have some items in storage but thats another post for another time as those items are ruined and should have a claim filed on them. Its simply one battle at a time.

It has been much easier managing Ladybugs care having less stuff. It has been much easier not trying to keep up with an employer who you can’t take off simply because your child isn’t doing well.

I thank God that FedEx was so good to our family when we were taking off so much time I don’t know how my husband left there without losing his job.

Other companies he has worked for has not been so nice. Not understanding. I understand they have a business. Im not sure they would react the same if it were their child or family member.

I looked off and on for almost 5 years or more at Rvs. Travel trailers, etc I love them. I’m not sure why. I especially like the vintage ones. I am a huge fan of airstreams. If we had not had special needs Im sure we would have been a full timing air streaming family.  To me the airstream reminds me of a really cool interior of a leer jet. What is there to not like about this ?

cool airstreams

However, the Wanderlodge reminds me of the interior of a land yacht.  The quality of both is just really awesome.   cool modern Yacht.  Ok I could do better with a different Yacht but its the quality and the home on wheels.

I found a lot of buses and Class A’s. That is what we narrowed it down to that if we were to need to stay in the bus for RV for months at a time. We do therapy for a series of 3 months. We do treatments at that same time. We do 6 hours of therapy then leave the therapy and go straight to treatments for Hyperbarics. That is usually an hour. Then it was an hour drive home. It was typically an 8-10 hour very long day. Then to home, showers, bed and back up and driving again the next morning at 7 to be there again.

Its beyond difficult to get vacation rentals for more than a couple maybe a few weeks at a time. Its even difficult getting a hotel due to tourists and in California people near the beach cities rent a hotel room or several rooms and have their friends and family come over to party. Its crazy. I was also amazed at how many people rent hotels for months to remodel rooms in their homes. We met families who had house fires. And impossible to get a hotel on the Fourth of July near the beach cities.

So we decided because of the job situation and we had yet another landlord when we lived in Phoenix that their house sold while we were living in it. Im telling you if you have a nice home and you want it sold just let us live in it. We rented 4 homes and they sold while we were living in them. It is not easy for us to move.

I found as many Wanderlodges, Eagles and MCIs as I could of a huge variety of price ranges. I looked at hundreds of each online to see layouts, gas and diesel, towing capacity, sleeping arrangements, storage as well as location and prices. This is intense. When one goes on the market at a decent price you have to move quickly or its gone.

So, we saw where they were located and made a list. We had already gotten one extension for rent but was unable to find another. This would be a good time to go look. So we planned our trip put our things into storage and took the Roadrunner. We stayed in hotels along the way. Our gameplay was to look especially in the Memphis and Nashville area for Entertainers. Thank God one of my dear high school friends Jay Singletary was able to get us a tour of a very nice Hemphill Bros. through one of his friends. Yes, we saw some rock stars coaches. WOW! They were gorgeous (some of them) but way more than we could spend. Thank you Jay you rock! Hemphill coaches- Wiki also check out their website. They have some really gorgeous coaches. Our tour was incredible. The service and knowledge is fantastic. I can’t say enough about how we were treated at Hemphill. Hemphill Brothers.com

We met tons of awesome people along the way. We looked all the way to Memphis, Nashville and finally found 2 Wanderlodges to look at in Missouri.  Did I mention we saw Elvis? LOL Invitation to Elvis Presleys mansion

While in Missouri one of the Wanderlodges  had a slide we really liked it. It was bank owned and had water damage in the slide ( we didn’t like all the water damage). We were also leery of buying bank owned without knowing maintenance or repair records etc.  We opened the bay door and water gushed out it hadn’t rained in two days.

We met the people who owned Dr. Scholls bus. You know the “foot people”. I really thought we would buy that bus. I love the table loved so many things about it. It was the first bus we saw. The people who owned it I liked even more than the bus. They answered all of our questions we drove it twice. I just didn’t want to buy the first Bird that I saw and thats what I wanted to do. We all liked it a lot. Great shape too.

SO we ended up in Missouri. We stayed south and in the Midwest. We looked at the bus with water damage it would have cost a lot to remodel and get that bus in shape. With being a bank repo we had no idea what was in store on it. It smelled like mold and it really was an M380 with a slide. We went to look at another Wanderlodge that we found through a broker online through Vintage Bluebirds. We set up a time to meet with the owner. We looked at this bus (this was after looking at many other buses). We knew this was going to be our Wanderlodge. We drove it. It was 15 years old and a Blue Bluebird Wanderlodge. It was also in very good condition. We have had to do some changes. We had to put new tires on. Oh my I will never, never complain about buying shoes for my children again ever. The shoes for this bus. WOWEE !! It is a gorgeous bus. We made some changes right away and took the bus to Georgia to Coachcraft by McDonald to get the bus inspected for leaks, and some general maintenance. We had some modifications we wanted done but because of funds and a Bluebird rally they didn’t happen right away.

In 2-3 weeks on the road, fairly no-stop we found our Bird.

The first time at Coachcraft we had the Mimmi with us. We stayed in a hotel. Mimmi saw a whole new side to us. Hahah. She loved having the food bar and coffee ready on demand all day. Then we took her to Myrtle Beach, Charleston and Savannah with us. She got so tired of us she got on a bus in Myrtle Beach and went back home to Missouri.

So we scheduled for a later time. While we were waiting on approval for funds which we thought might take a couple of weeks ended up being months. This was a huge issue for more than one reason. There were things we wanted Coachcraft to do and while the Bird was in the shop for those things we wanted to do some things our self. We planned a budget, found what supplies we needed and priced where we could save a lot of money. This is also so we could get what we wanted and not just stock from a book or a catalogue.

While waiting for an okay for funds. We decided to spend some time in Myrtle Beach, SC., Charleston, Georgia, and even went to Fl. for a Dr. appt for Ladybug and my husband was able to spend time with his mother for Christmas. While doing therapy in Fl. we stayed at the KOA Orlando. We finally got notice that the funds were cleared and we were scheduled to get the work done as soon  as therapy was over.

We were able to take a truck and go to Atlanta to purchase all of the items we needed on 2 different occasions. We also shopped Ikea. We also were able to find a really awesome discount tile store and bought ceramic wood look alike tile for the bus. We then had to spend time in Georgia ( I love the folks we spent time with they are the nicest people ever at Coachcraft) but I am not a fan of Georgia. The state of Georgia  has a new kind of hot with the worst humidity ever. The mosquitoes have their own zip codes. Its awful !

Ill add more photos later and the next post will be the updates and modifications that were done on the Wanderlodge. We wanted to be able to spend some time in the coach before we made a lot of modifications. We wanted to price shop. We wanted to save as much money as we could. Im thankful we spent the time like we did so we could live in our coach and get used to how we would live in it. What I initially thought we would do ended up only doing some of those things. Its a lot different planning for a child with special needs and planning and modifying things around the daily activities.

The “Roadrunner”

This is a photo of the Roadrunner ( the white handicap accessible van). We decided to do a custom cargo van to meet “Ladybugs” needs. She isn’t in a wheel chair we have a stroller chair. We have a custom lift seat instead of a wheelchair lift. This is so she doesn’t become accustomed to being in a wheelchair. We want for her to walk. We are rehabbing.

We ordered a standard stock cargo van. ( FedEx van ) from the dealer and had a custom van dealer to modify it to be handicap. Here is what we started with . https://g.co/kgs/tp25HJ.  It is a 2010 Mercedes Benz 2500.

IMG_9155

Above is a picture of the handicap accessible van with the cargo trailer or ” the Egg”. This is a cargo trailer that houses equipment for Ladybug. It also has our off-season needs in it in case we are stuck in bad weather.

My husband has built shelving and has wired the trailer so that it feeds to an inverter or a plug. This is how we can have fresh organic food for our “Ladybug”,

Hydraulic Arm Chair

This is a hydraulic arm chair that has a bucket seat. This chair has a remote. It transfers our daughter to and from the van. It can be used to transfer from a stroller to chair. Also from chair to stroller, wagon or to walk with canes.

Ladybug eats a special Organic diet. We sometimes have certain foods flown in to wherever her therapy or treatments are at. The white cargo trailer is called the “Egg”.  Probably the only place you will see a “Roadrunner ” with an egg. Its okay. Its what we do to stay sane. Everything has a name.

Field kitchen

A small cabinet and prep area to prepare food on the road. The cabinet holds Ladybugs supplies from pots, utensils to oxygen masks. Storage for food while on the road.

Ladybug supplies

Storage for Oxygen masks and supplies. Some dry food items.

The van even though it was not built or designed like we requested. We went to Liberty Mo to Chalmers automotive and toured the small garage like facility with the owner Jack Chalmers. I never realized then what this man would do.  While the van appears to look nice here it really no longer looks this way. I hope to take photos soon to be able to show you. I want to warn anyone else who might go shopping for a handicap accessible van of what you need to look for and hopefully you won’t fall for the same mistakes we did. Unfortunately there are many who take advantage of families and people with medical and special needs. This really does happen.

The van also has space for extra passengers in the back or if we are on a long road trip to a Dr.s office or treatments the girls can ride in the back. There is a longer seat in the back. It is a sofa type seat. It does have safety belts. They generally don’t sit there unless they are bored from sitting in their normal seats. Our inverter batteries are stored under this seat as well as some cleaning supplies.

Sofa walk through van

Photo of sofa from the front of the van. You can see it is directly across from cabinet and has safety belts for 3 passengers.

Storage above cabinet storage

Additional storage. We originally had a small oven in this cabinet.

Marine toilet with cartridge

Marine toilet with handicap accessible bar. This toilet has really been God sent. I don’t mean any disrespect. It really has. It is beyond difficult for me to help our daughter in public bathrooms. Not to mention how unclean they are. It is also wonderful on the road trip.

Small beverage refrigerator with freezer top

A small beverage fridge with a small freezer on top. This is great for taking Ladybugs food with us. She cant eat at ANY restaurant or any grocery store. She has been unable to eat at any produce stand. Organic or non organic. We prepare all of her meals from Whole Foods. This is a challenge sometimes with travel. We plan well in advance. There really is No impromptu stopping and eating for us. We heat and eat.

I forgot to add that the original dorm fridge we had that came with the van caught on fire. We barely got our youngest daughter and ourselves out of the van.  My husband rushed in pulled the plug and literally threw it on the sidewalk while we watched it burn.  No one was injured thank God. Im sure the people at the hotel thought we were insane. What was amazing to me is to see how many people were walking by and looking inside the van while the burning fridge was sitting next to the van. No one seemed phased by a burning fridge sitting outside a van only a maid at the hotel who offered to help us. Bless her heart. 

We don’t have the choice to stop and eat at fast food restaurants or grocery stores. I spend a lot of time planning meals, trying to make different meals from the same vegetable. We also have some of Ladybugs meat shipped to us via air mail. This is really, really expensive. This is the only food that has been safe for Ladybugs consumption.  Vegetables have been a trial to find sometimes. I love small town USA but they don’t always have organic vegetables. ( Sounds silly but they don’t).

Control panel on wall for heating and air. Panel controls TV and DVD player or headphone jacks. HEPA Filter for bad air days.

We also have a separate heating and air and HEPA filter in back. This keeps the temperature down for Ladybug who was having seizures. In areas with high pollen or pollution count the HEPA filter has been a blessing.

Television panel with speakers. Used for doing homework, school and watching DVDS between Dr.s apps and treatments or therapy. Also good for long grocery trips.

Television panel with speakers. Used for doing homework, school and watching DVDS between Dr.s apps and treatments or therapy. Also good for long grocery trips. We have separate headphone jacks so the noise doesn’t sound in the van only on the headphones. This is really nice.

We also have the Day and night shades. They haven’t faired well though. They were just plain cheap and while the passenger side is still fine the driver side that you see is falling down and really needs replaced. These are really good for us because of those people who are “gutsy” enough to literally walk up to our windows and “window peep”.  You know who you are. It happens in many states but California people take the blue ribbon on this one. Everyone else just gawks. People in Arkansas have called the police on us at grocery stores even with a handicap plate. They are sure its a camper van and we are sleeping in it. Jeez people get a life!

Finally, the forward with drivers seat and panel. Honestly these photos were take 4-5 years ago when they drove the van to California.  It started falling apart right away. We had electrical fires in the Inverters and walls right away. This is really scary. Driving down the road you have 2 small kids in the car and you see smoke. We keep 2 working fire extinguishers in the van at all times. We have used them on other peoples car fires. We have seen 2 car fires in the past year.

Photo from the sliding door passenger side. This is the hydraulic arm chair. The step stool behind the seat is so our daughter can rest her legs on long trips and not let her feet dangle.

Photo from the sliding door passenger side. This is the hydraulic arm chair. The step stool behind the seat is so our daughter can rest her legs on long trips and not let her feet dangle.

Drivers seat- passenger seat.

Drivers seat- passenger seat.

In the past few months we couldn’t figure why the seat belts stopped engaging. My husband being the handy man that he is and has worked tirelessly on this van and on the coach. He took the seats apart. He found “DUCT tape” holding the belt mechanism. He contact the manufacturer who wanted nothing to admit to it and refused to do anything about it.

It took him contacting the DOT to get any kind of a response.

What this requires now:

  • Taking the seats out of the van.
  • Shipping them to the facility where they were manufactured and trust that they are going to put the real mechanism in to replace the “DUCT tape.”.
  • The facility shipping them back to us.

 

The owner of the company and his employees stopped taking our phone calls. They told us we could drive the van to Liberty, Mo. but there is no guarantee that anything would be covered on warranty. They are the ones who placed all the wiring, and customized the van. They finally refused to even look at the van. The company Chalmers automotive no longer shows in Liberty, MO it is now showing with Mr Chalmers in Kansas City, Mo. There is no where on the web that you can add a review for them. There was a forum that I placed a review on however it disappeared soon after that. I was taken off the forum.

People always want to see our van. Its pretty cool that they have so much interest. What it does for us is to let people see this blessing from God. Even with the things that are wrong and with its blemishes. It also gives us an opportunity to tell everyone about the Grace of God with our daughter and our family. God saved our daughter from dying. I know He did. I don’t care what anyone things. This little girl is a lot of work. Her equipment and daily care is a lot of work sometimes. We all paid the price. God gives us the Grace, His favor and His mercy to deal with it.

 

 

Abigaile’s Story

This is our blogspot.  It is a after the fact recollection of what has happened. Even though we go through trails daily, weekly, yearly of this incident we must keep on. We must fight for our children and we must defend those who are weak and who can not help themselves.

http://abigailesstory.blogspot.com

One day I hope to be able to stop long enough to write more on the blogs or maybe even write a book. This is very difficult at times to care for  a child with special needs. Their care never really ends. They need you to help them to eat, get dressed, and to do daily activities. It is a continuity of care. Physical, mental, and spiritual.  Its all very draining. Imagine being at your job sometimes at its very worst. Imagine not being able to leave it to go home. Imagine that you don’t always have a co worker to help you. The co worker is working another job just as equally as important because you need to be able to live, eat and provide shelter.

Imagine you have another child who may be able to feed, get dressed and care for themselves. They still need care, love and attention as well. Imagine being told by someone very close that you are neglecting your well child for your sick child. Yes, I have been told this. I may not be perfect thats okay. I only have 24 hours a day and I do nothing for myself. I haven’t for years.

Imagine that when you have needs to be met they don’t get met. Everyones needs always come before your. It makes you very tired. Its draining and its emotional and your self esteem is never good enough. Imagine making friends but not being able to keep them because your always making apologies for not being able to call, contact or go out with them.

I had someone from church bring her children over for a playdate and to go to the pool at our apartment complex. Our daughter had a seizure and was a mess. The woman from church and her children and our oldest daughter went to the pool without me or our special needs daughter. I was left alone once again to pick up the pieces and clean the mess. Its a lifetime of it. Until life ceases no more for one of us.

Vacation isn’t even a thought or an option anymore. I recently had a landmark birthday. It was barely an event. It sucks the life out of you.

I continue on. I will continue to fight for my children. I will provide for my children. If you have children with special needs and you have supportive friends and family. Please be very grateful for them. They are truly a treasure. Ive always tried to be there for friends and family. Its really difficult.

Please read and share our blogspot. We are on the road to healing and rehabilitation for our daughter. Please don’t be offended if we don’t answer right away. If we don’t respond to your emails or Facebook messages. Its a rare occasion that we have time for social activity. In fact my social activity is going to the grocery store.  Our social activity also includes Dr. appointments, lab work and treatments and therapy. Its common to have therapy for 5 days per week, 6 hours per day with a 15 minute lunch. Don’t forget the 1 hour commute to and from therapy.

This is my life. This is my daughters life. My family’s life.

 

Our story

For though we walk in the flesh, we do not war after the flesh: (For the weapons of our warfare are not carnal, but mighty through God to the pulling down of strong holds;) Casting down imaginations, and every high thing that exalteth itself against the knowledge of God, and bringing into captivity every thought to the obedience of Christ; And having in a readiness to revenge all disobedience, when your obedience is fulfilled. 2 Cor. 10:3-6

Our Story 

 My sweet Abigaile. Abigaile had a severe allergic reaction to her Pertussis and Hepatitis B vaccine. She developed an Encephalopathy, rare seizures, multiple chemical disorder, gross and fine motor delays and delayed speech.

It is in this season of life. We walk with our heads high and proudly proclaim that we belong to God and He belongs to us.

Pray and do not give up.

Yet those who wait for the LORD Will gain new strength; They will mount up with wings like eagles, They will run and not get tired, They will walk and not become weary. Isaiah 40:31 

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 

The last sticks and bricks…. Arkansas

West End 

  When our daughter who was injured was born we were remodeling ( well more like renovating) an old farmhouse.  It was really our dream home. We both loved the old farmhouse look and it had a huge front porch and a lot of big trees and a huge yard in the middle of town. It was really great.

We helped to care for a lot of kids in this house. We had up to 8 kids all different ages and sizes at one point.

We learned about how to rebuild a house. We learned what significant termite damage is. We also learned what is like to be so very close to having your own child, flesh and blood to be so close to dying. It is not something that I want to ever remember. Knowing that each of us are never promised tomorrow. God gives us breath and God can take away that same breath. We are guaranteed nothing.

We bought a hybrid travel trailer because I was very pregnant and we liked camping. Well truly I like Glamping. Ive gone tent camping – seriously I do better in a travel trailer and Im actually happy camping in a class A. LOL.  I really do.  The last time I went camping we had tornadoes almost got blown away and I spilled water in the tent ( I have to have a water bottle at night ) Im sure my husband thought I peed in the tent. I did not though I spilled my water bottle and blamed it on the storm. Needless to say we ended up sleeping in the back of the Ford Explorer.

We had a lot of fun in that hybrid though it was not a pop up but it was a keystone light I think it what it was and it popped out on both ends. We took foster kids with us and we were crammed in that little thing but we had fun. We bought toys, horseshoes, a small basket ball goal and coloring books to take a long on our camping weekends.

It also came in handy when I was about 38 weeks pregnant and decided to paint the playroom floor upstairs and finish the rest of my painting in the living room and dining room. The next thing I know I couldn’t sleep. At about 3 am Im asking my husband to take me to the emergency room that I am going into labor. The next day we have our baby girl.

Its a good thing that we had that travel trailer because its where we slept for several days in the driveway while the paint on the floors cured.

Over the next several months our lives would dramatically change. We would be fighting for the life of our child. We ended up selling the travel trailer but in the back of our minds we wish we hadn’t sold it. We spent the next 8 years several times per month driving to several surrounding states to find out what was wrong with our daughter.

She was having multiple types of seizures, massive seizures, hundreds of them. Failure to thrive, developmental delays, eye extropia.  It seemed every intervention the Dr.s, Pediatricians were doing was making her worse. We really at several points thought will this baby make it?

Devastated, hurt, scared and alone.

No friends. Not a lot of family. She was hospitalized multiple times. Our oldest daughter at the time. Just 3 years old.  Read more about her story here at http://www.colespages.org/AbigailesStory/pages/visit and here http://abigailesstory.blogspot.com

At the time we thought it would be best to maybe build a home and move closer to one of the better hospitals. We felt angry and a lack of trust for the hospital where she was born. The Pediatricians there lied to us. They led us along knowing well that our daughter had a serious life threatening reaction to her immunizations.

We decided to sell the travel trailer. We had no idea what was ahead for our family.  We were almost debt free. We had planned to pay off our home in 15 years. Now what? This clearly would not happen.

Our church we were pastoring. We had planted the church from a church that was closing the doors. Church was doing well, everything paid off.

Then this happened.  God gave us 2 congregations to bring together. We signed the church over to those congregations. We still had home church. Which I really enjoy.

It was too much traveling with a child having seizures, school , work and trying to live day to day. We bought a house in Fayetteville our by Lake Weddington.

Timeless Drive

Timeless was a brand new home. We had it built from foundation up.  A nice corner lot. We didn’t feel like we were progressing enough with our daughter. We started trying alternative diets and meal plans. We tried different medications based on different specialists. What we were really doing is spending a lot of insurance on all the Dr.s and Specialists asking us – “Do you think it could have been her vaccine?” I shudder and want to vomit everytime I hear this or even think it.

If I could show you video of my little girl you would never go near a vaccine again. No –

People are not born with a predisposition to be allergic to things. Your immune system reacts to something foreign, synthetic that it doesn’t respond well to. I had no idea that this was killing infants and children even adults. My God I thought I was doing the right thing for my children. NO.

It really just became we had no family or friends to help. The cost of travel and trying to find out what was wrong with our daughter exceeded what we could pay. Do we give up? No.

Our house was going into foreclosure on more than one occasion. We couldn’t pay our bills. This injury put our family so far in debt we couldn’t live.

I had called attorneys before selling our last house. I filed a VAERS report. We decided to fight for our little girl and thats what I did is fight. I had no insight, I had no reassurance, I had no help.

Moving forward.

Thunder Turtle

This is where it all started. Thunder Turtle. It isn’t her given name but its a good name for her.
The one who we do all this for. She has also acclaimed the name of “Ladybug” which many know her by.
She is a stealer of your very heart.

She was born in 2003. We had planned the pregnancy but not what happened once she was born. Not what she went through and certainly not what our family has gone through.

Let me tell you our lives were changed. Really rocked and changed. We were also left alone by friends, family and many who knew our family. Even the church.
We went through HELL. It is not to say it is much different now but we have learned to adapt. We have also come a long ways with our ” Ladybug”.1.06 to 7.06 072She has worked hard. We all have. I would do it all again.
In 2004 Feb. Ladybug started having some issues with her entire little body starting to swell. Jaundice. Seizures. This all happened after her 4 month vaccines.
I observed her. I knew something was wrong. I documented by writing a journal, taking photos, and filming video.
You just know when something is wrong with your children. Especially mothers. You know.
It was like a car. She would do all these things at home, I would dress her, take her to the Pediatricians office, and nothing.
This is why I started documenting like I did. I’m so thankful I did this otherwise we would be like many families who their children are having reactions or very sick and they have no idea what is wrong.
If you think for a minute a Pediatrician will tell you that your child has had a vaccine reaction. You should be thankful for them if they do. Otherwise it could be like our Pediatrician who thought we were going to sue her and dumped our child like a hot potato and said she didn’t know what to think. I believe she did. I lost all respect for her. The Dr. who owned the clinic prayed for our baby in ER. He knew. They all knew.
Dr.s are suppose to do everything within their power and education to maintain life and a quality of life.
By now 2014, April my little girl at almost 5 months of age looked like the Goodyear man on TV. Her skin was grey. She had a lot of serious issues. We didn’t know if she would even live.

You can read more about “Ladybugs” story here : http://abigailesstory.blogspot.com

Where to begin

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It is because of the love for this little girl and wanting to see her well – that we have this bus. I call it a bus because of the mechanics. Not the appearance. You can call it an RV, bus, Coach, Motor coach. It has really been a huge piece of the puzzle to get her well. Glory be to God. Not us, not the Doctors, not anyone- just glory to God.

Where to begin? It seems like such a harmless phrase. It can lead to so many places. I have tried to create this story so many times.

It is a story that I would rather forget sometimes but I can’t.

It won’t be forgotten because God allowed it to happen. Why did it happen? I don’t know. Was it something that I did wrong as a mommy? No. Was it something that my husband did wrong? Our daughter? No.

You see we have our Bluebird Wanderlodge not as a recreational vehicle but as a medical necessity. I know you must be shaking your head at this. I’m going to tell you why this is true.

I hope to be able to post some pictures of our family but honestly if you have ever heard the saying that “if it weren’t for bad luck I would have no luck at all?” This is really the story of my life. Not really, I don’t believe in any such thing as luck but this is how things have happened. When you can’t think or say that will never happen to me. Don’t say that. Seriously.

Here are some random pictures of who we are:
You see one of the two Princesses above. She was injured at just a young 5 months of age by a severe adverse reaction to a vaccine.

The Princess also is our oldest.
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Then you have the dad: His job has been support. His job is trying to pick up pieces of other crap that just doesn’t get done. Its a random type of responsibility because caring for a child with special needs much less one that was a severe injury it unfortunately ends with a lot of crap. This is a picture of dad with “Ladybug ” walking with canes. This is at the hotel. We spent 6 months at this hotel to finish up her last sequence of Physiotherapy. This would be our last few months in California due to a lack of employment and funds.
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Then there is me. I have a job description. It just feels like it never ends. I have many jobs. I wish sometimes that it were just easy that I could wake up, homeschool and go on like so called “normal looking people with a normal routine”.
Please trust me when I say that “this is NOT NORMAL”.
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We do the best we can. We believe that God is the great Physician and that we are going to do everything we can so that this little girl can give back to so many people. She is an incredible gift. Her sister is an incredible gift that is beyond words or recognition.
Please stay tuned for the next post- Our Story.