CRAIG'S NEW WHEELCHAIR IS IN!....Well Sort Of

A while ago I said we would post the steps that Craig was going through to replace his dilapidated eight year old manual wheelchair. I apologize,  I haven't written since that day. What I can say is, the

That meant, the vendor representative had to come and finalize all the details and specifications of the chair. If you are in need or will be in need of a wheelchair for the first time, you will learn that just getting any old wheelchair isn't what is best. Yes, in countries where mobility devices are hard to come by, many will use whatever means they have to get around. In our country and I assume the US of A, a physic therapist or occupational therapist assesses your needs. In Craig's case, they made sure the seat dimensions were correct, as well as the height from the seat to the floor and the height of the back of his wheelchair. If there are weight issues, then they also need to make sure the client weighs under 250 pounds or maybe with the brand/model he is getting it is 260 pounds. He found out after purchasing the Quickie Xtender power assist wheels that there is a 250 pound weight restriction. Not something  you want to find out after you purchase a device like that. We discovered the warranty would be void if he exceeded that limit. Thankfully, he was under, but it sure opened our eyes to not assuming, the vendor will let you know all those kinds of details. I know weight can be a sensitive issue for some, but it is better than finding out after the purchase, that your chair can't can't handle your weight and can't be fixed under warranty. Be sure to do your research on the product as well as the specifications and restrictions.

Aside from those details, they also needed to make sure that he gets the special supports under his arm rests. Some people use their arm rests to lean on for transferring. Like Craig has done. It means standard chair arm rests can not handle the force nd pressure and require metal bracing underneath the arm part. Often when a new chair is ordered, a new medical cushion is required as well. Google wheelchair cushions and you will find many exist. However, we only recommend ROHO cushions. They are rubber, with air modules or cells. They come in different thicknesses and the air can be distributed evenly in one big compartment or as in my case, I have the Quatro version, divided into, you guessed it, quarters. Because I have severe scoliosis, the valve can be released, so I can learn one way or the other, let the air fill up more in one of the quarters, then lock that air in place. You never want to just use a cheap foam cushion if you are a regular, full time wheelchair user. You can end up with serious conditions that are avoidable like, pressure ulcers or osteomyelitis bone infections. And just plain, pain!
Supports Needed
Some folks like myself, require physical supports that can be inserted once in your chair. Or some have a specialized wheelchair back that can have lumbar supports that are permanent or removable, and/or swing away lateral supports and such - all to help keep your spine straight. Many, including myself, can end up with scoliosis as a secondary issue, due to poor seating or lack of seating supports. Sitting in a wheelchair that doesn't have proper positioning for your body, can lead to physical deformities that could be avoided if everything was well supported.
Patience Required
As for Craig's Chair, it was officially ordered over one month ago so today he phoned the vendor to find out if it is in yet. And yay, it is in their building! He is in desperate need of it because his old one is literally falling apart.  They told him that it isn't assembled yet. So he has to be patient along with however many other customers. An understandable thing, but hopefully it happens soon because the back canes that broke a while ago, are twisting and messing with the chair.
Since he has to wait, he just left to get the hand brake fixed because it is letting loose, not a good thing when you are transferring from point A to B. At least it is in the city. As well, the vendor has to set up the chair according to the specifications decided upon in the seating clinic with the physical therapist and vendor.
So that is where Craig's new chair is at as of this moment. As soon as there is more movement, I shall post some more!
Have a great day!
Any questions, comments or suggestions about topics, please comment down below!

Okay, that's not Craig or his new wheelchair! This is the olympic athlete Jean Driscoll! Cool wheelchair meant for racing!

I'D RATHER BE IN THIS WHEELCHAIR THAN....Meet My Hero

Looking For Inspiration?
If you have been here before, you've met one of my biggest heroes! If you haven't met her, I introduce you to Joni Eareckson Tada and her husband Ken.
I have been blessed by her for decades. When I was about 12, a bunch of fellow children with disabilities from the residence I lived in, all went to see her movie debut called: "JONI." What was so incredible was that she plays herself. I always recommend others to watch "JONI." As well, for the last several years her ministry, Joni and Friends, have been producing short fils about persons who inspire her. Thankfully in the mix are some more great videos featuring Joni, her life, husband, and all that she does.

To see the first video in this series about Joni (years after the movie about her was made) Just click on the title here: 
I'D RATHER BE IN THIS WHEELCHAIR

Here is another great video all about Joni's beautiful art work. 

PAINTING FOR GOD'S PLEASURE

MEET RICH! Creating Your Own Adaptive Devices - Living Like I Always Did

Meet Rich from Handi Help!
The other day as I was browsing, I discovered this inspiring man named Rich. He is 6 foot 5 inches and severed his spinal cord about 17 years ago. He is all about creating adaptions in order to enable he and others like us, to be able to be as independent as posible, enjoying all the activities prior to the onse

t of a disability. He has quite the ingenious mind. I am fifty, was born with my disability and never considered some of Rich's most helpful solutions!
Share this with anyone you know who may benefit from some pretty cool problem solving - all to not miss out on "normal" life!
I highly suggest checking out Rich's kayaking ang Sled dog racing fun too!

Below are just a few of his many great videos as well.
Be encouraged.

How To Improve Your Grip, click here.
Winter In A Wheelchair, click here.

How To Close Your Door With Ease

Picking Up A Book

Fishing From A Wheelchair

There's No Place Like Home

Raised Gardens for Access

RECENT SHOOTINGS IN THE USA: Make It Home Arrive Home Alive

Coffey Anderson has produced an excellent educational video giving great advice to anyone when  being pulled over by the police, what to do and how to do it safely and respectfully prepare for their arrival to the driver's door. His heart is or the police sand parties involved to get home safely. He addresses stereotypes and what we can learn from each other.
Click here to watch Coffey's video

WRITE YOUR OWN STORY

Dealing With Life and Suffering...How?
As I was completing the video for this article, I stumbled across an article that had the title of my most favourite quote ever. It is from Joni Eareckson Tada. Click here to see the article titled with her quote "GOD IF I CAN'T DIE, TEACH ME HOW TO LIVE." The perfect quote to start off this article on a very controversial and intense subject. A prayer Joni uttered when she was deeply struggling with coming to terms with her newly acquired spinal cord injury from a diving accident that left her paralyzed from below the shoulders down. Click here to read an interview where she addresses pain and suffering.
From Loss To Hope...
Okay, first of all I encourage you to watch this very moving video, before I share the one that prompted this blog article and then my response video way down below.
 Click the Title below the image of these beautiful girls to see it: 

The Kemp girls, watch their video. Photo from www.fightSMA.orgOne SMA Family’s Story: From Loss to Hope

Beautiful family, aren't they!

Can you tell I am not wanting to share what I am about to share? It is a subject that infuriates me and breaks my heart to hear others like myself, speak out about wanting to legalize assisted suicide - wanting to have the "option" available if one chooses.

When you meet precious children as in the video above, and the countless others I have been honoured to meet since my childhood who were born with all types of disabilities.

On that inspiring note, this morning I began watching the video of Julia Lamb down below. At first glance,when I saw the title:

"B.C. Woman With Degenerative Disease Challenges  Assisted Dying Bill" 

See?

I was wrong! Foolishly assumed, that because of the title, of the above CBC news video article, that Ms. Julia Lamb, was fighting against the assisted suicide bill, that was tragically passed recently in our home land of, Canada. Yay, glad to see someone on our national news, speaking up against it, this should be encouraging and inspiring. After all, there are many of us in this entire world, who believe regardless of our disabilities, diseases or illnesses, that life, regardless of how difficult and painful and even scary it might get, is something we must do - live life no matter what! 
That God Himself, is the only One who knows when and how we are to leave these physical bodies. We do not have the "right" to kill our selves, with assistance or not. Yes, many think we do. There was a time in my second decade of life where I was so down, I contemplated suicide. But thankfully, I was too terrified of dying then because I didn't know what would happen. It was then that I faced a twenty year death sentence. If you have followed this blog, you will know that around seven or so, a Doctor told my Mom in front of me, that I had Muscular Dystrophy and would be dead at twenty. (Needless to say, that is a topic for another day. ) 
Before I realized that her views are contrary to mine. I thought it was really neat that she also has spinal muscular atrophy, the same diagnosis as myself. I don't get to meet too many people with SMA in our home town. (my first diagnosis I had was wrong). Based on her description and details about her life thus far, it would seem that she has type 2 SMA.  I have type 3 SMA.  My dear nephew Kyle, who had type 1 (infantile SMA) and after eleven days, went right into the Arms of Jesus. Life expectancy predictions,  is something I learned the hard way, to not live by. Yes, it can offer an average range. But ultimately it is in God's hands and many, including myself, lived past the prognosis given at diagnosis. As well, we may have an idea of may happen to our bodies as the motor neurone deteriorate based on the history of many who have come before us. Yes, everyone I have met with my type, have all been far different in severity than myself. Such as the fact that I stopped walking by age 14 and our friend in Iran, is in his thirties and he can still walk and work full time. Another fellow we met in Peru, can stand up with help....see what I mean. 
I spent all day trying to find the right words to say and now the day is coming to an end and I am not done....so here is a video I made to supplement the point of this article and maybe tomorrow I will conclude with all the rest of the words. no words can express how sad this whole subject makes me....so for now I want to say this to anyone facing a life altering diagnosis.
Write Your Own Story
Like one specialist told me years ago when I was asking if I was to expect that one day I may need a  respirator or GI tube for feeding, he told me to "Write your own story." Clearly,  the range of severity at varying ages is not consistently the same. 

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OUR WEDDING STORY SPECIAL FEATURE: Keep On the Sunny Side...ALWAYS On The Sunny Side....

The Perfect Dress, (for me) Where It Came From?

Okay, it is most difficult to not keep talking about our wonderful wedding story. So I decided once I found some more special wedding photos just now, to add on a Special Feature. My Dad has a family of nine children. He is the third oldest and his brother, my uncle Ed, is the oldest. All are boys except my Aunty, who is in the previous article photos. She made my wedding dress out my sister's wedding dress. You see, I didn't get to tell all of these great unique details in the other articles! So now is the time. Yes, my sister, who had a

beautiful wedding dress made by our Dad's only sister, in the 80's, showed up at my apartment one day and handed me her wedding dress. Can't remember if she even knew that may plan was to not even worry about wearing any wedding dresses. (Just click here to see who they are in Our Wedding Story the Finale)
My plan was to wear something nice. But now, my sister basically donated her wedding dress to me. Now if you knew my sister, you would know that I would never fit into any of her clothing. My body is on the much more generous size. But because it was the 1980s when her dress was made with care by our aunty, there was a lot of taffeta fabric that could be repurposed to create a brand new dress! And the coolest thing of all, our same Aunty would make the dress. So I drew a simple picture of the dress I thought would work for my body and as one who sits for a living.
As you can see, my dress was beautiful. Wanting to make the most of every inch of fabric, my Aunty handed me a bag of tiny white beads. I felt so bad when I realized that she had removed, every single bead that she had originally hand sewn on the front of my sister's dress bodice! My Aunty made the dress even fit perfectly around the very obvious scoliosis parts of my body. I have a large bulge on my right side in the back. It is the outer part of the "S" part of my spinal curvature. It is about an 80 degree curve that forces my right rib cage to push out. The other side is pushed in. And she was the first one who gave me the idea of custom made dresses for us who use wheels for legs, because she made a special cut out area where I sit. The very kind of dresses I have been making for myself now, for years. It makes many things a lot easier for me. If you do not have the strength to push up your fanny up off the seat of your chair, to pull down a dress or even pull up pants for that matter (perhaps I will go into more detail on accessible dresses in the future :o), this design makes going to the bathroom and dressing so much easier as well!
So I wanted to share the wonderful blessing of my dress and how it came to be.
Keep On the Sunny Side...ALWAYS On The Sunny Side....
My Dad and four of his seven brothers love singing and playing instruments together. Not saying the don't all love doing that, but these particular ones would play as a group at times. I remember many times, where the family, my Grandpa H playing the fiddle, my uncles and my Aunty who made my dress, would be singing and playing, mostly guitars. What great memories for me to be blessed with.

My Favourite Uncle Ed playing the mandolin at our wedding!

My Dad himself, has written hundreds of country style songs, so that tells you how much music means to him and his family. My Mom also enjoys singing with him and has also sung in special groups. as for myself, I always loved singing in my room to the music, at the top of my lungs! And at summer camp where no one knew me, I would sing on talent nights. Oh yes, my dear friend Sue played the guitar for me once, so I could sing a song at church....
Anyhow, I want to share this in honour of my dear Uncle Ed who left us all far too soon, a handful of years after our wedding. He was one of the biggest music and book lovers that I have ever met. He even was building his own mandolin before he passed on. That was just a mere part of his beautiful carpentry skills. From him I learned what an autoharp was, because he had one. It is a cool stringed instrument. Google it. He often made me smile because of his quick wit and sincere words. His youngest daughter (her photos are also in the previous Wedding story article) was closer than a sister to me, my whole life. In fact, people called us Two Peas In A Pod. So no matter how far we lived away from each other, I always had an extra special connection with my cousin and her family. At one point when I was  in grade seven and eight or so, we got to live in a trailer court they owned, while my Dad built our home.
Craig and I love Blue Grass music. So it only made sense to have some of that special music at our wedding ceremony. Aside from my uncle's beautiful granddaughter singing while I came down the aisle, we asked my dad and the group of his brothers, plus their friend, to sing "Keep On The Sunny Side" during the license signing.
( For privacy reason, I am not naming all of the people in our wedding pictures because I don't have permission to do so. Incase you are wondering why, I haven't named names)

My Dad and two of his brothers singing and playing!

Come On Every One, Join In!

Here is where our wedding becomes even more unique than most people are familiar with. In fact it is the only time  I have ever seen this happen at a wedding! Thrilled to have our family singing and playing for us, my dear exuberant, not shy I might add, husband Craig, after he is done doing his part signing - turns to the wedding guests in the church and says joyfully, "Come on everyone, Join in!"  Craig has a very robust voice and he can sing and talk loudly. It was more like a sing a long than a wedding moment. Yes, I was a wee bit embarrassed. It wasn't something I had ever been a part of before. My embarrassment was silly. Because of my husband, we got to have a super memorable moment that I think some others might have thought special as well. So there he was, like a choir leader. This choir leader's voice you could hear! ...."Keep On the sunny side, ....always on the sunny side....keep soon the sunny side of life....t will brighten up your day. Take a listen to these folks singing it here if you have no idea how it goes. I think you can see why it would stir up such happiness in my husband!

Click below to watch someone else sing it.

Here they all are, playing and singing while we sign the license and all that fun stuff...

All In The Family...
For Craig and I blood isn't necessarily thicker than water. For us, friends can be adopted in our hearts, making them as loved as any family members. For me, because I grew up with two families, my loving biological family and at the residence where I lived (institution), as well at  a young age I sent away for a couple of weeks a year for my favourite summer camp for children with disabilities...all of these factors and more causes my heart to easily feel as much love for friends as I do family

Northwood Camp - an Easter seals camp for children living with physical disabilities. I am second from the front left. This was the cabin of our girls and the counsellors. I loved looking forward to two weeks of summer camp every year since I was about seven.

members. It makes life all that more special. On that note, I want to share some more extra special parts that made our wedding more than just a special day.
I hire my own Personal Care Attendants and even though they are hired to help me do things like getting in and out of bed, and all kinds of daily living tasks, many of them become long time friends. On our wedding day, my wonderful girls blessed me in big ways. One who had no longer worked for me but stayed a friend, was apprenticing to be a photographer. She took all the photos you see as a wedding gift, developing included. This was before the digital camera age! We weren't planning on hiring any photographer so what an added surprise that was.
Then another one of my dear PCAs who became a friend, loaned us her video camera and actually recorded our wedding for us! A hard copy of a wonderful memory! As well because our luncheon was not catered, another great natured PCA of mine, helped out with food prep in the kitchen that day. It was my mom and friends who prepared the yummy food, perigees and cabbage rolls of course. As well as my Aunty who  made my dress, also helped out by making the wedding cake and a meat dish! And then....my sister. Well, I told you all about her sweet gesture of giving me her dress. She also was given something like a measly fifty buck and she decorated using my favourite thing, blue glass and other details to decorate. She also helped with other tasks like the handmade wedding invitations.
One of my dear friends, a wonderful musician and writer, blessed us by playing the piano when there were no blue grass singing family members! And like I mentioned earlier, my closest cousin's (the other pea in my pod) daughter, sang while I came down the aisle, while a friend of their family played the guitar. Again, all so extra special!
As well as singing, giving me away, my Dad helped me out the morning of tie up the roses I had stored overnight in my extra cold spare room. Couldn't have gotten ready in time if he didn't help me out. I also had to make the three buttoners. Like I said, getting married for 11am, was a bad idea because it meant far more hurriedness than I had originally anticipated. But thanks to my Dad, he made it a bit easier by doing something simple.
To make it easier and as wheelchair accessible as possible we borrowed the two churches that were next to each other. The one with the luncheon was the church where I first met Craig years earlier when he came to visit. It was important that we had the church with the kitchen, restored and cleaned back to perfection. Thanks to more of our dear friends and family, we had people like Craig's brother Eric, doing dishes. According to Craig, Eric wasn't a big dish washing guy. As well I remember my uncle Ed's wife, my Aunt of course helping out as well as my cousins, immediate family and friends. Washing, drying and cleaning...all of it happened because of so many wonderful loving friends and family. Thank you to everyone. Thank You God!
Hope you enjoyed my ramblings about our special day!
...Jan, I Miss Her Dearly

Jan is beautiful isn't she?

And then there was my super close sister in Christ, Jan. She went to Heaven ten years ago after battling cancer. She helped me with words of wisdom about marriage along with helping me prepare wedding favours. God blessed my life with another person I adopted in my heart to be closer than any family member.

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OUR WEDDING STORY: The Finale! Just Some Photos....

 Well, I decided enough words and video about our wedding story and thought it best to just share some photos about it instead! :o)

( For privacy reason, I am not naming all of the people in our wedding pictures because I don't have permission to do so. Incase you are wondering why, I haven't named names)

Yay, we are getting married soon! 

We miss Aunty Cleo!  This was an "engagement" party get together at Craig's home.

The wedding rehearsal night. Friends and family! October 19, 2001

My handsome Dad, getting ready at my apartment. 

My beautiful Mom, ready for the wedding at my apartment.

Left to right- Some of my pretty family members at my apartment before the wedding at 11am. My Auntie, who made my dress and our wedding cake, as well as other culinary delights! My Mom who cooked the majority of the food we all ate. My cousin's daughter, she sang beautifully while Dad and I came down the aisle and her Mom, my close cousin who was my bridesmaid.

The same beautiful ladies as above as well as my pretty sister and my cousin's handsome son. All in my kitchen, just before the morning wedding!

My pretty sister, and matron of honour, striking a "doing my hair" pose. But if she was the one who did my hair, I wouldn't have had so much hairspray stuck to my head! Caution brides to be, never hire an unknown lady to do your hair without any prep or trial "do's!"

Dear Dad, getting me to that church on time!

One of my handsome cousins in our van on our way to the church!

Ceremony time!

My sister's beautiful decorating on a very low budget :o)

One of Craig's sisters and her husband later in the day at Craig's, Pop's home.

Pops and I.

My Mom and Dad!

You know who they are now!

My parents, sister, cousin and Craig's cousin and his friend (our wedding party) 

My handsomest husband! 

My beloved, handsome nephew!

My cousin's beautiful daughter!

My cousin's handsome son!  Can you tell these two are brother and sister?!

One of my best friends and sister in Christ, Jan. I miss her a lot and look forward to seeing her in Heaven one day soon!

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