Joan here..."We have todays!"

I had a wonderful time in North Carolina! Talk about a beautiful area I was in Wow!!! Streets all lined with big beautiful trees and azalea bushes in full bloom everywhere one looked! Not a weed in the area!

I went to the largest flea market I have ever been to. I couldn't even buy anything there as there was just too much "stuff" to look at!!! Sheila calls it "eye candy". My hosts were wonderful!!! Rick's folks took absolutely wonderful care of him along with the home care workers and Jake and Val. Rick says that he missed me so very very much (he has to say that) LOL!!!

We have been going out for walks and unfortunately he is having a very difficult time learning how to steer with his sip and puff. Yesterday, I ended up steering his chair for him as we walked. The controls are all backwards now...hard to teach an old dog new tricks! Just about ran over my foot a few times but I managed. I tried to get him on the lift in the van for the first time since last fall so we could go for a little ride. That never materialized as Rick just got too overwhelmed with it all as he has lost control of steering the wheelchair accurately now. Because his breathing is so bad anything that is stressful just adds to the difficulty in his breathing. We decided we would wait till he is more rested and another day to make another attempt at it.

Because he no longer can use his hands or legs he is feeling extremely vulnerable and it makes it very hard to do anything much outside of our suite. We are fortunate that there is a handi transit van that is available locally that we will have to use from time to time. We do have some events that Rick and I are involved in. We have tried to stay involved as much as possible. Making our own little dent in the world.

Rick and I will be making a presentation at the Whitemouth School ALS Walk kickoff this Friday afternoon and then at Reynolds School the following week. We are in the process of setting a date to meet the students in Beausejour School also. Our ALS Whitemouth Walk is on Friday, May 14th and leaves from the Whitemouth School. Reg starts at 9:30 am and leaves between 10:30-11:00am. Everyone is welcome!

Katie and Tia's 2nd Anual ALS Fundraising Garage Sale is next Saturday, May 8th. That should be a great time. It will be held on the yard from 9:00 to 4:00 pm. If you have anything you want to donate to this sale please do let us know email rfewster@mts.net. Everyone is welcome to this as well! We will be selling hotdogs, coffee, chili and I am sure you will see Katie running around trying to sell some lemonade! To her you can't have a garage sale without lemonade!!!!

Jake will be hooking up Rick's sip and puff for his bed soon as he can no longer use the bed controls, tv controls as well as hooking up the bipap unit for the wheelchair. I am his remote control for bed and tv right now! You could say Rick really knows how to push my buttons! When you phone it takes us forever to answer as I have to run and get the headset to put on Rick so he can speak. Usually he has his bipap on so then I maneuver the headset over the bipap...so nothing happens too fast!!!

Some of the things that really have brought some tears to my eyes is while I was washing the car and thought about the fact that he will never be able to sit in it or drive it again or us go for a drive in it. We always loved going for long drives together! I will never feel his arms around me. He can't hug me anymore...that is a big one! He has to call me over and tell me he wants to kiss me. He can no longer just do that on his own! He can never write me a note with his own handwriting...the cards I get are now signed by others! Last year he wrote me pages and pages so I would always have them from him!

In all that I am so happy that we have each other. He tells me over and over that he can't believe how good I am to him as a wife and how good I have taken care of him! I am so happy that he is so appreciative of me and that I bring him joy, care and love in his life! I just never want to look back down the road and feel I didn't do enough for him....that will probably happen anyway but at least I am trying to minimize that as much as possible.

We are so very happy that this spring has come with such wonderful weather and we have had so many birds fluttering around the feeder outside our window. Anyone knowing Rick knows he loves watching the birds! He takes after his mom for that. Amazing how the little things continue to be a source of one's daily joy! It is no longer the years but the days that we rejoice in!

We have todays for now and for that we are so grateful!!!

Joan here..."Kisses, flowers and North Carolina!"

Talk about the right timing at the right time!!!! hmmmm...a thread of something here.....
I really needed an away time....not from Rick but from ALS! I know...you can run but you can't hide....I just needed too see something other than wheelchairs, lifts, suction machines and etc....

Rick and I talked about it...he is steadily going downhill with his breathing and needing more and more care on a day to day basis. If I was to just go away for a bit it would have to be now....but talk about being torn in your heart!!! It is like leaving your baby the very first time...I felt like I was going to abandon him or something...he is such a wonderful man and so supportive of me...it just continues to amaze me...in saying that just for the record..he is not perfect..but pretty close!!!

I just knew I needed to get away as I said not from him...just my life for a bit. I was given an offer I couldn't refuse....thanks Dave, She and Amy....I am in North Carolina!!! Everything just fit....Rick's folks are taking care of Rick, homecare, and with Jake and Val as our back up! It couldn't get better than that for me in order for me to take this trip.

I was in such a torn spot in my heart....from start to right now..I feel like angels have been with me....amazing stories....luv what I saw of Chicago and talk about God's country in North Carolina...wow!!!! I have the most incredible hosts you can ever imagine.....I was greeted with fresh flowers from a little girl Amy with the biggest smile ever and her amazing mother She!!!! This evening little Amy kept blowing me these big kisses!!!

Thanks to my family for the early ride to the airport, the spending money, the offer to pick me up at the airport when I return. I had people from custom officers show me compassion (and yes, I started crying as they spoke what I took as words from heaven to me), stewardesses, and even my seating buddy Mohammed on United Airlines really touch my heart!!!! Mohammed told me about him, his beautiful family and that he was going to pray for us!!! Wow!!!! Thank you all for being you today!!!!

Thank you Rick for encouraging me with that unselfish heart of yours in me coming here!!!! It is my first official trip without him.........need I say more???

Joan here..."Wheelchair on the go again!!!"

We were so excited today, Rick got his wheelchair back, with all the new add ons!!!!!

Doesn't seem like much till you are the one who could use it. A tray was added on to the back of the wheelchair so Rick's bipap machine could rest there...and yes...they tweaked up the speed some so we can actually walk faster than a turtle! Thanks so much all you people at the HSC Rehab Dept. for all your dedication and help and expertise!!!!!!!

Also, Rick now has the environmental control unit that allows him to actually raise his bed up and down, turn on the tv, and call for help...because he no longer can use his hands....this unit allows him to be in somewhat in control of his life!!!! God Bless all of you for your dedication and hard work!!! Thanks to Martin for his care in getting the chair to and from the HSC!!!!

Once the chair came back, (Rick was in bed for two days while it was gone), we took the chair for a spin...Rick was so excited as he got to go 60% of the speed instead of the 30%!!!! The beautiful weather was an added bonus!!!!!

We were so pleased today when we were asked to be a part of an upcoming event...and because Rick and I can't be physically present...we were asked to pray for it afar!!!! But we are still doing!!!!

Life is really simple these days that is for sure...we are just so happy to get him through the day!!!! Imagine yourself not being able to move...not an inch once you are placed in a sitting position or a laying position until someone comes and moves you. A real treat for Rick is if someone will just come and straighten his fingers on his hand or toes on his feet. When you are so disabled you just need a lot of compassion and people who offer to do those things for you ....anything else is dung!!!

If a person is hungry feed him....if a person needs their toes bent or fingers bent do it!!!! Hey,,,, that maybe the way Jesus would have done it!!!! :)
Anyways, life is pretty simple but complicated when it comes to just surviving the day....I just can't imagine how in the world my husband survives and continues each day without giving up!!! He has such a positive attitude!!!! God Bless him!!!!!!!!!

Rick and Joan here..."A little update"

My breathing has once again deteriorated this past week. I have been struggling to get my breath more and more. I am using the bipap not only all night long but every couple of hours throughout the day. I go onto it to catch my breath. It is a very strange feeling trying to breath and inhale and yet not be able to draw the air in. My lungs work fine...the problem is as the muscles die it gets harder and harder to pull the air in...my body is using muscles from all kinds of places to try and do the job!

Tomorrow, my chair is going into Wpg. for a couple of days once again. This means I am in bed until it comes back. This time my chair is going to have a mounting platform put onto it and along with a power converter so that my bipap machine will be able to travel with me. Also going to see if I can get my top end speed adjusted up so that when Joan and I go for walks...Joan doesn't leave me in the dust!!! lol

For those of you on the ALS forum I have not been corresponding as I have yet to get my head mouse set up. We have been just busy taking care of my other day to day issues. I hope to be up and at it soon so don't give up on me! :)

I have had a lot of changes in my body once again in the last couple of weeks and so I am needing more care every day!

I had an interesting moment the other day as I laid here helpless...I felt a bug crawling across my hand and it was dark so I couldn't see how big it was or what it was. Based on it's footprints across my hand I figured it was headed up towards my face. I gave a shout and Joan came to my rescue and started to look for the creature. Took awhile but it was found!!!! It was a pretty scary feeling as you imagine it walking up your nose or into your ear and not being able to stop it. Your imagination goes wild! It is a little bit like hearing the grass rustle just outside of your tent at night and you never think it is a mouse...you always think it is a bear! :)

I can see that I will have to develop a whole new level of mental toughness to get through this next bug season. In all honesty it was quite frightening to realize the level of my new helplessness. Last summer I could still move my arms and swat a skitter or smack a spider this year I feel a bit like a potential buffet table for the critters!

Joan and I spent some time in the sun on the deck this afternoon. I sat and sipped a cold one through my straw while offering Joan constructive advice on how to unstring all the Christmas lights on the back deck. I glanced up into the sky and saw the first turkey vulture of the year floating effortlessly across the sky. I kidded Joan that she better not leave me unattended too long on the deck this summer or I may make a meal for somebody! lol

Rick and Joan here..."Happy Easter"

We are enjoying our quiet Easter weekend. Good friends Brian and Jan will be here with us today!

Being Easter time...I was thinking this morning about the song "because HE lives...we live and we can face tomorrow". Our faith in Jesus allows us to live each day to the fullest that we can.

We have been told by so many that we are so strong! Both Rick and I have said before and now will say it again...it is NOT our strength that has carried us through this far on this journey but it is the daily strength we receive from the hand of God! Each day we receive fresh manna (food that came down from heaven daily to sustain the Israelites as they wandered through the desert) from heaven to sustain us and keep us from totally being overwhelmed or freaking out!

Every day we face new challenges in Rick's care. We believe and give total credit to all the people who have been praying for us. We have experienced wisdom for the moment, the care of wonderful and committed people, experienced doors opening for getting Rick's much needed equipment as we needed it, genuine words of encouragement from our newly found friends from the blog to both of us, meals, wheelchair delivered and picked up from HSC (which is a feat in itself), computer help, cards, books, phone calls, family and friends who have shared their support and love for both of us.

It is so amazing when you are emotionally and physically down how even a few kind words can help to restore and lift up your spirits for the day!

We have had strangers send over flowers, rec'd emails from all over the world, and our own children who have opened their hearts and home to us. Rick has even had strangers stop him on the street to offer words of encouragement. We take all those special moments and know they truly come from the hand of God!

A person really never knows how they would cope with a difficult challenge until they are the one walking through it. In our case dropped into it! The words...His mercies are new every morning...I will fear no evil, for YOU are with me...all take on a life of their own! Yes, Jesus is alive and is living through His words and through the lives of others!

Have a Happy Easter!