In Honor of Veterans Today

This post is in honor of my Favorite Veteran Ron Wamsley and ALL Veterans. I realize on days like today how many of you have touched my life. Thank you for serving our country and preserving the rights we so often take for granted.

Yesterday, my dad and I had the chance to talk a lot about our country and the political process at length and what it felt like for him to be in the Army and part of a war. It was a great conversation.

I appreciate our democratic process, that we HAVE the right to vote, the right to disagree and the right to speak about our opinions. We are part of a great nation – I am so thankful that people like my son (with his disability and wheelchair) have care, support, access, services and the right to these things AND the right to expect better equality and access than what’s available today.

So this post is for all the men and women who have served and supported upholding the values set out when our nation was founded.

And its for all the men and women in the armed forces who have put their lives on the line to support those who have less in the world with the hope of helping them have more in life.

PS – this is a photo of my dad in Vietnam. I learned today that he was waiting for a shave in this photo. Bet that was a real luxury while you were there Dad!

Congrats Kobey! Celebrating Graduation – Ready for your next Adventure? #GoBeavs

June brought Kobey’s graduation from Liberty High School and on September 17, 2016 Kobey will be moving to Corvallis, Oregon (about 2 hours from home) to attend Oregon State University. His next adventure!
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College! So much to prepare for – luckily we’ve been through this once because getting a child (ok young adult) with a severe physical disability ready for college has been a bit daunting for me and I know Kobey has had some serious moments of majorly stepping out of his comfort zone to get things prepared.

Kobey’s had to make phone calls, interview caregivers, set up doctor appointments, arrange meetings with Disability Services at OSU, arrange a special campus housing tour to see accessible housing, and really give some thought to how things will be set up to help him succeed away from home. Much of this is new to him – and we haven’t done it for him. He’s been challenged, nervous, uncertain and determined. For some reason the phone and what to say is hard for him, we’ve had many conversations about, “What do I say…???” He gets so nervous and jittery – we’ve been using the Nike slogan – Just Do It – a LOT!

I’m super proud of him for his persistence and I’ve been inspired watching him move through his fears and tackle each task. It’s been awesome watching his confidence grow and while we’ve had frustrating moments together this summer his bravery amazes me. He’s already beating the odds, just in getting this far with pursuing college. In 2013, only 13.1% of people with a disability (non-institutionalized) reported having SOME college or an associates degree.1 That’s staggering to me. I’ve heard statistics like this over and over again – we believe in being living examples of change. I’ve learned more from my son than anyone else in my life. People with disabilities have so much to offer, so much life to live and they desire to have purpose, just like anyone else.
We’re going to do our part to make sure Kobey’s dreams of a vibrant future where he has a full life and lots to contribute are realized. I love that Kobey has approached college with excitement and anticipation of his future – I think it could easily be a time to be fearful – but it’s apparent this path and experience is one he is totally looking forward to (I don’t think he could push himself through the fear of dialing phone numbers if it wasn’t…)

We still have some things to finalize – last details for his care at school, a bit of shopping, a couple more doctor appointments but it’s becoming very real, very fast.

As for me, I’m feeling super grateful for the friends & family who have shared their expertise. Like my girlfriend Sandie who has 6 kids, was a special ed teacher and had an aunt who was wheelchair bound and had great insights and questions for Kobey. Thanks to all our friends who have been there to support us. Friends like Kobey’s MDA councilor Steve who has been great about just checking in and making a point of getting together before school starts. Thanks to Sharon who said, “You might just be ready to be really available to drive down to Corvallis the first 2 months of school.” – Boy, has that given me peace of mind and helps me feel secure knowing we have a backup plan.

Thanks to all my friends who have just listened when I’ve poured out my frustrations and fears. It’s helped a lot to have you all and you’ve given me great advice. What a blessing to have each of you in our lives.

A new chapter is just ahead for all of us!

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#GoBeavs
1. www.disabilitystatistics.org Cornell University 

­čî┤Aloha from Hawaii ­čî┤ – Accessible Helicopter Tour ­čî┤

A trip to Hawaii is a pretty special High School Graduation present, we decided to really make this a trip for Kobey to remember. I found an awesome website (http://www.mauigoodness.com/2015/01/02/best-wheelchair-accessible-activities-on-maui/) with lots of ideas for accessible activities on Maui and one of them was a helicopter ride!

Sunshine Helicopter Tours was amazing! (http://www.sunshinehelicopters.com) Dennis and Kobey wanted to go early in the day – which worked out great because Sunshine has a $50 early bird discount per person. They drove to the Kahului heliport (it’s part of the airport) and were met by their awesome staff and pilot Steve. It was an easy transfer to get Kobey onto an electric lift that hoisted him right up to a window seat in the helicopter.

There are several tours to choose from, the boys went on the Molokai Tour. Their pilot Steve was really friendly and entertained them with lots of stories and facts about the Islands and sights as they flew.

Kobey would tell you – the best way to see the Island, when in a wheelchair, is the view from a helicopter! Aloha! Mahalo for reading our blog and sharing with others who will benefit. Keep dreaming about the adventures you can have and the places you can take your wheelchair!

Aloha from Hawaii – ­čî┤ How do I get a wheelchair on the beach? ­čî┤

We came to Maui in fall 2014 and my heart just sang the day we got Kobey in the ocean! It was the first time he’d been in the ocean or really any body of water in years. In the past – he loved swimming; the freedom and weightless feeling it gave him. But as things have progressed with his disability and he’s lost control of his body he’s felt less secure and worries about his safety – especially in the ocean.

We found that Gammie HomeCare (808) 877-4032 Maui, www.gammie.com) had an amazing beach wheelchair – one we had never seen! The brand is Mobi (http://mobi-chair.com). You’ll see from the pictures that you can push it right  down on the beach and it floats in the water! Gammie has other beach chairs too – but if you want to go in the water, we’d recommend this one! You can pick up or they will deliver & pick up right where you are staying. I was surprised at how reasonable the rental was for the whole week and personally I’d skip eating out a couple meals while here to get the experience the chair offers if you are on a budget. By choice we packed lunches most every day and only ate out very little – lunches allowed us to spend all day every day at the beach.


In the Mobi Chair Kobey was supported and felt secure. We did keep an eye on he surf and checked out beaches ahead of time for easy access down to the water. You’ll definitely want 2 people to help you get on and off the beach with a beach chair – even though this chair has sand tires it was a workout at times getting through the soft sands on Hawaii. You can check out tides, wind and surf advisories online. (http://www.tide-forecast.com, http://www.hawaiiweathertoday.com/beaches/)

This year we bought and travelled over with our own beach wheelchair – I wish we could have purchased one a long time ago! We decided to invest in one for several reasons – we live fairly close to the Oregon Coast, we were coming to Hawaii and we plan to travel more and would like to have the freedom this chair offers for choices. After researching more we decided to get a Hippocampe. We have some friends with one who love it and the wheels are interchangeable on it – it has double all-terrain wheels and we also purchased fat wheels for the beach. We purchased our Hippocampe wheelchair from Top Mobility (www.topmobility.com). This chair totally disassembles, lays down flat and stores in a bag for transport. One strong person can carry the bag – it’s big and awkward though and easier with 2 people or a cart. It travelled pretty well to Hawaii – we just checked it as an oversized bag and because it is so light it was under the 50lb weight limit – checking it was free. Yay! There was a small hole in the bag upon arrival but I think I’ll just put a patch on it and we’ll let you know what happens on the flight home.


We decided to leave the big beach tires home for this trip (not sure why?) In hindsight we wish we had just brought the beach tires and left the others. We really only used this chair at the beach and those tires would have made it easier to push the chair in the sand. FYI – They are large enough to need their own bag for transport though. The other tires work well for more “off road”, muddy or rocky terrain and we didn’t do any of that on this trip.

It was fairly easy to transfer Kobey into the Hippocampe – the chair doesn’t have brakes so someone needs to hold it in place to keep it steady (backing it up against a curb worked too). We just used a pivot transfer.

We put a life jacket on Kobey for any water we went into. AND we found we could take the chair into the pool – one person went in and held the back of the chair while the other guides it in from the pool deck. It would be ideal to have a wheelchair ramp into the pool or even stairs – we didn’t have that at either of our pools but we figured out swimming anyway!

The chair floats almost as well as the Mobi Chair we rented last year. It’s not very stable from side to side but we’re excited to see if putting the beach wheels on fixes stability! We just pushed the chair underwater and rolled Kobey out for swimming.


To get him out, we dropped the chair back in the water, rolled Kobey back into it, strapped him back in, put the front wheel up on the pool deck and then pushed the back of the chair up out of the pool. This job was definitely easier with 3 people. 1 on deck and 2 in the water.

Side note: if you need help ask for it. We had so many people offer help without solicitation and made some awesome new friends on this trip. We met a couple of guys who work with people with disabilities and it was a reminder to us that  even though we are very self sufficient and capable it doesn’t hurt to let others help. It makes them feel good and it made us feel good too. We had some great conversations and learned about some organizations that work with people with disabilities that we didn’t know about. Hope you enjoy the pictures of Kobey in the ocean and pool – I would love to have you share your experiences with beach wheelchairs, any comments and questions! Mahalo!

­čî┤Aloha From Hawaii­čî┤ – Step 2 – Wheelchair Accessible Van Rental on Maui and elsewhere.┬á

Step 2 when we arrived in Maui (or any other place we might fly to) we need a wheelchair accessible vehicle.  We’ve used Wheelers Van Rentals both times we’ve been in Maui with the wheelchair. They rent in many locations across the United States. (808-330-7800 Maui www.wheelersvanrentals.com) 

Be sure to call plenty in advance – I believe I called in January for June. You fill all the paperwork out ahead of time and they are good about sending an email with all the instructions for delivery when you arrive. And just an FYI it IS more expensive to rent a wheelchair accessible vehicle than your typical rental car so plan ahead and set aside the money if you decide to rent a vehicle. We think it’s totally worth it to have the freedom to go where we like while we are on the island.

This year Adam met us at the airport and delivered the van curbside 40 minutes after we landed (you call from the plane upon landing). He reviewed the rental agreement and we were off. 

At the time of writing this I believe they have all new vans. The vans are side entry with a manual pull-out ramp and if you need they will arrange ahead of time to have the seat taken out of the front for the wheelchair. There are quick release, easy to use ratchet straps for securing the chair. 

Two features of the van we really like are the roof rack on the top and the back seat is a split seat so you can fold down part or all of it for transporting stuff. We also had plenty of room in the back for our luggage and there are 5 of us!

Here are some pictures of the van entry, ramp, wheelchair hookups and everyone in the van! 

Passenger side with ramp tucked in. 

Kobey all strapped in. 

´╗┐­čî┤Aloha from Hawaii­čî┤ Flying with a Power Wheelchair.┬á

For those of us traveling with a disability or a family member with a disability there are lots of things big and little that we can worry about with travel. Research and planning help to calm fears and help us to create a game plan to deal with the unexpected.

This is our second trip to Maui with our son Kobey – age 18 – since he has been in a wheelchair full time (this trip is his High School Graduation Gift). I hope some of the things we’ve learned can help others. 

One of my biggest fears is that Kobey’s wheelchair will be damaged while traveling (flying especially). He has a full power wheelchair that weighs over 300 pounds; the chair does not fit in the passenger seating on an airplane. He checks in at the gate and they tag the wheelchair there and then he drives it down to the plane and transfers to an aisle chair. The power chair is taken down to the plane and loaded with the luggage. 

Yep it’s treated like a piece of luggage and to buy a new one is like buying a small car. Not cheap! AND if it’s damaged we could be stuck in Hawaii without a working chair! 

Kobey and Kiley getting ready to head down the jetway. We were the first to board the plane.

 

Here’s what we’ve done to minimize these concerns

  1. CALL and make your reservation with the airline. Yes it takes longer – I did that on this trip and it was so worth the time. The reservation specialist who helped me was awesome, she moved some people around and got our family of 4 seated in the very front row  together, got Kobey an aisle seat and helped me use all our airmiles and companion fares as well.  
  2. Get to the airport early. Travel takes longer with a disability. Expect it – being early helps with point #3. 
  3. Be polite and keep your cool. You know the saying, “You catch more flies with honey.” Be overly polite and thankful – people will respond in kind. (I have to say though that 99% of the time the airline staff are AMAZING! Wonderful, kind and so helpful! We flew Alaska Airline this time and it was a really positive experience).
  4. When you check in at the gate and they come to take your power chair away, politely but firmly explain that it’s a very  expensive piece of equipment, tell them you know it’s heavy but you really appreciate them handling it with care and put the chair in freewheel for them so they can push it. 
  5. Minimize the damage to essential parts of the wheelchair by disassembling what you can, use bubble wrap on the controller and tape everything down to the seat of the chair. *See my photo, in this picture Dennis took the arm rests off and removed the controller (but not the wires).
  6. Get an aisle seat and be a good communicator about what you need. They transferred Kobey to an aisle chair – the staff is usually pretty good about asking how you like to do this. For this trip we did the actual transfers to the aisle chair and then into the aisle seat on the airplane ourselves. 

So far smooth sailing (or flying…) More posts to come! Mahalo!

Abled with Love

Kobey wanted to get a special tattoo for his 18th Birthday! Kiley started this trend when she turned 18 and today we got matching family tattoos! Just a reminder of the things that bind us together in love and that a disability does not define someone. We like to think of our son as Abled with Love – not disabled. If you are someone who has reached out and supported us in ANY way, when you look at Kobey you see him before you see his wheelchair, or have helped make normal life possible for this amazing kid despite his physical challenges – THANK YOU!

Taking this Wheelchair to Paradise #1

It’s almost been a year since we took Kobey and his wheelchair
to Paradise! (Hawaii that is…)

We’d been talking about taking this trip for a long time. Our family (especially Dennis) loves warm water, sandy beaches and enjoying the sun. Snorkeling, frolicking in the waves, warm trade winds, amazing fresh tropical fruit, good food and great memories.

IMG_5094This trip was a long time in coming because of me. I was always thinking about the reasons NOT to go. ┬áMaking these things big Obstacles (instead of thinking about the reasons To Go.) Things like: What would Kobey really be able to do? How would we get down on the beach? What if his wheelchair gets damaged on the way there? How could we find an affordable place to stay that would accommodate the wheelchair and helping him take a shower, etc. (Since staying in an ADA hotel room for 8 days and eating every meal out wasn’t in our budget.)

I took a class last year that really challenged me to change my thinking. It was a class about self exploration and it made me question WHY my first tendency was to be so negative about traveling with Kobey. I started thinking about what our family was missing out on because of my fears, limiting thoughts and mindset. I decided to throw all that old thinking out the window and embrace a new point of view. I know that because of Kobey’s disability things are NOT going to be easier in the future. ┬áHis disability is progressive, he loses muscle function every day. If we could afford to go and we had the support why weren’t we going? I was the only thing standing in the way. I’m wondering if you’ve ever found yourself here? Whether you live with or have a disability or you have other limitations in your life…

So…..I did something super scary for me – I bought the tickets ┬á– yep, NON refundable tickets and then I told my family. Know what they said? “WAHOO! YIPPEE! YES! WHAT TOOK YOU SO LONG? WHEN?”

I bought the tickets because then we were committed to going. I had to find a place to stay, rent a van, figure out an itinerary, places to visit and ALL wheelchair accessible. ┬áI ended up doing a lot of research for this trip and we’d like to share some of it with you! I’m thinking this will be over a couple posts and I need to get some help from my husband so be patient with me.

Also – I’m totally open to your feedback and comments – maybe you’ve been to Hawaii and you have some awesome tips – things I didn’t think of or research. I would LOVE to know and encourage your comments here so that we can all benefit.

OK ┬á– next installment – Paradise (Hawaii) #2 will be details about what we actually DID to make this vacation doable & fun with a full power wheelchair.

New Wheels

kobey 011bWhen our son Kobey was 11 he┬ágot a wheelchair. It was black and yellow – like Bumblebee in the movie Transformers. It was fast, it turned on a dime, it did cookies, caught people’s attention, raised up high and reclined aaallll the way back. To our boy, it symbolized freedom, speed and safety. It meant he felt confident, he didn’t worry about someone bumping him and knocking him o
ver. It meant he could go where his friends went, he could navigate our rocky gravel driveway no problem, he could feed our chickens and go for a walk in the woods on our 40 acres. He could travel long distances (like across the football field) without being tired, h
e could go all day long without the battery dying (like it did on his red scooter) and he wasn’t worried about tipping over when he went around a corner a bit fast (like his red scooter did.)

But Dennis and I had reservations; we wanted to be excited. We just weren’t. Inside we were dying a little. I wanted to cry. We both felt like we had a big black rock sitting in the bottom of our stomachs. ┬áThere was this dread, the wheelchair was a symbol, our boy wouldn’t be walking anymore.

Kobey was a big baby, almost 11 pounds. He reached all the normal mile stones a child would, crawled when he was supposed to, walked at 12 months. Things started looking different when he entered grade school though and when he was 7 we realized he just couldn’t run and had never been able to jump. My dad said something, my mother in law said something┬áand suggested seeing the doctor but it wasn’t until Mr. Keifer, Kobey’s PE teacher said, “Something isn’t right…” that we took Kobey in to see his pediatrician.

We learned that Kobey has a genetic disorder called Duchenne Muscular Dystrophy. He was born with it and it was causing the gradual weakening of all of his muscles. He was diagnosed at age 7, at 9 he started using a scooter and at 11 we were facing the reality of a wheelchair. I’m glossing over some details here – you can image the devastation we felt. We went through agony and despair while waiting 2 months for a confirmed diagnosis, hoping against all hope but all the while knowing from our pediatrician’s suspicions and reading up on signs and symptoms┬áwhat we were facing: Muscular Dystrophy.

This young man is now 17. He has been a great┬áteacher. I’m constantly amazed and grateful for the lessons I learn from my son and Muscular Dystrophy. And while I will fight to find a cure for Duchenne,┬áin another way I acknowledge the good things that have come with┬áthis experience. I don’t always acknowledge my┬ágratitude, it’s hard and sometimes I resist. But I’ve learned so much about myself on this journey. I possess an inner strength that frankly┬áastounds me. I am resilient, I’m a fighter, I love deeply. I am not perfect, I am human. But I do work toward being a better person and┬ámy son and family have helped me do this. We are different because of this disability. We have more compassion and patience. We are better people.

My goal in starting this blog initially was to share about the places we’ve travelled with this boy and this wheelchair. To literally share resources to make travel easier for others in similar situations. We’ll be sharing these things for sure, but I’ve come to realize that there is a bigger journey I hope to share with you. It’s called Life. Some of my deepest sorrows have led me to discover my greatest joys. What an incredible place to learn to savor and appreciate what is truly important. I want to share hope and inspiration, life is precious.

Oh the places we'll go with this wheelchair…