Happy Birthday to Mom!

Today our mom turns 82.  She had already left the house this morning when I called.  She was with Tina at the hospital.  Tina had eaten a half of a muffin and then wanted to lay on her side.

Picture taken on their 60th anniversary 

I wondered this morning what mom would have been doing if she wasn’t at the bedside by her youngest daughter.  She would have probably gone out for breakfast and hopefully got a free one due it being her birthday.  They may go out for lunch since a lady from mom and dad’s church was coming to sit with Tina.

Mom has been so faithful to be there for Tina.  She is on the top of Tina’s list to call when she needs anything.

Happy birthday mom from all of us!  We love you!!

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If you are interested in going to sit with Tina at the hospital she would love to have you there for a few hours to give her a drink or two, feed her a meal and try and make her comfortable.  You might be able to give mom a break some time.  We appreciate your support.

Tina was moved to a semi-private room so if you have been there before….she has moved.

Oh….and Happy Birthday to Hilda who shares the exact day and year for her birthday.  Two special ladies born on this day 82 years ago!

STEELE Standing….

Birthday Celebrations

The birthday girl made it to her party.  When they first started planning, some of us were sceptical that she would not be feeling up to it.

The queen was rocking her crown for the festivities and had lots of smiles through the day.

Jenn had sent us pictures of the decorations.

There was a nice turnout of friends and family to wish Tina a Happy 55th birthday.

Cake was served and there was lots for everybody and enough for the nurses at the hospital.  They have been so good to Tina.

Tina did really well keeping up with the celebrations but she started to fade at 3:45. 

She loved the visits from people.  She has lost a lot but she has her smile and laughter back. 

She was ready for her bed back at the hospital after the afternoon festivities.

Thank you to everyone that helped plan and to all those that came to say hi to Tina.  I know that you made her day by being there.

Tina, with help, put this note on Facebook, “Thank you for the many Birthday Wishes .. It was wonderful to see so many and I enjoyed each one and the time you took to share with me this special day.”

We are STEELE Standing and she’s probably sleeping!

Happy 55!

Today is Tina’s 55th birthday.

Who is Tina? She started off by being mom and dad’s baby of the family and our little sister. She came into the world to meet A LOT of cousins! She was the youngest on the STEELE side.

She became an aunt and a mother in the years to come and a friend to many.

Tina is so much more than ALS. Today, we celebrate her.

If you are able, please join in the celebrations this Saturday!

When: Saturday October 01 

Time: 1-4pm

Where: Roblin Wesleyan Church

Hwy 41, Roblin, Ontario 

Cake and snacks will be provided! 

She is STEELE standing…we love you!! 💕 

The Queen is Back on her Thrown

Tina is still in the Napanee hospital awaiting her transfer to the Kingston hospital.  She had a bit of a panic attack through the night.  Mom went in the morning and then Jenn came later to let mom go home.

Jenn did a three way call with Carol and I to give us the update.  Once she is transferred to Kingston (maybe tomorrow), she will have the feeding tube inserted surgically, and then when she is able, she will be sent back to the Napanee hospital.

Jenn said that she was in good spirits and ate some chicken pot pie and a muffin through the day.  She will be getting ensure to supplement calories until she can get nourishment through the feeding tube.

The Queen seems to be back on her throne as she is starting to give orders about the birthday gathering on Saturday.  The hospital has okayed her leaving for a few hours to enjoy the celebrations.  If you are able to join in on this day, Tina will be thrilled to see you.

When: Saturday October 01 

Time: 1-4pm

Where: Roblin Wesleyan Church

(Her actual 55th birthday is the 29th)

Cake and snacks will be provided! 

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Carol is counting down the days when she can be with Tina and the family.  I hope the fall colours are brilliant this year for her time in Ontario.

We are on our second last day with Stephen and Kylie.  This visit has been just what I needed.

You can’t let the rain storms of life constantly beat you down.  Sometimes, you just need to put the raincoat on and enjoy life.  Sometimes it will start to rain harder and sometimes you just might see the rainbow or maybe just a beautiful place to be.

We are STEELE standing…one day at a time, one hour and sometimes by one minute.  As Casey posted on my Facebook page, “ Happy Birthday Penny! May you live all the days of your life! 😉”  I’m trying to get back to that…to truly make the most of every day.  We don’t know what tomorrow will bring.  We have found that out!!

Not Much To Say

I don’t have much to update.  Tina doesn’t feel like talking most days.

Carol had to postpone her trip to Ontario due to getting Covid and we all know that we need to keep Tina from that. Carol is feeling better but had a couple of days of feeling under the weather.  

Carol has rebooked and called to tell Tina but was told that Tina was under the weather and couldn’t take the call.

We hope that when she finds out that Carol is coming it will give her a little spark.

Jenn has asked me to share this top secret news…I’m told that she doesn’t follow the blog so hopefully we can keep this secret.

SURPRISE! Birthday Drop in for Aunt Tina! 

When: Saturday October 01 

Time: 1-4pm

Where: Roblin Wesleyan Church

Please help us in celebrating aunt Tina’s birthday! (Her actual 55th birthday is the 29th)

Cake and snacks will be provided! 

We look forward to seeing you there!

If you are able to come and say hi, please do.

Emma’s Birthday

Emma had her first few days of school and then came back to Aunt Tina’s for the weekend.  She wanted Nana and Papa to take her to Denny’s and I think she really missed being with Tina.

Emma is celebrating her 11th birthday today.  She’s an old soul that has a lot of energy.

Happy Birthday Emma!  We love you!! 💕 

My daily information on how Tina is really doing has kind of dried up with Emma not giving us a report.  Mom fills me in when I am talking to her.

We really miss our daily video chats.  I think we needed them even more than Tina did.  If you drop in to see Tina, please send me a message on how you see things.  Tina asked me to document her journey.  It hasn’t been easy to type the truth but I want to do everything I can to follow her wishes.

I don’t know how any of us could get through this without you all standing with us.  We really appreciate those that have helped and are helping Tina.  Words cannot truly say how much the army of helpers is appreciated.

We are STEELE a standing because of you!

Happy Birthday Carol!

 Today is a special day in our Sister Three World.  Our oldest sister, Carol is celebrating her birthday.

Carol is a wonderful sister.  She was amazing at the cottage looking after Tina's needs.  She is a beautiful person and I always enjoy the times that we can spend together.  

She enjoys it when people stop in to her beautiful part of Canada. I am sure that her Prince Charming will do something to spoil her today because she deserves it.

She's got a great family that loves her as she opens her arms to her own children, Mike's kids and Tyler.  The house is often food and there is lots of love and food to go around.

This year has been very hard and Carol adopted a new little friend to give her love when she needs that unconditional love.

Happy Birthday Sister One....Carol, we love you!

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News from Tina's world....

Janie, or Jane, as others call her stopped in and sent me this report:

"Hey FYI saw Tina quick today and I thought she looked great all things considered.  I even got to have a quick chat with Carol!  And your mom was there & Anthony....I didn't talk to Tina long as she was videoing with Carol."

Janie didn't come empty handed and I'm sure that they all enjoyed her visit and her goods!  She made sure that Dad was to get some for his belated birthday treat.

Carol and Tina were able to have a short video chat on Monday.  Carol said that it was so good to see her and hear her voice.  Unfortunately, I wasn't able to join in due to an appointment.

Last week, Jenn brought a hospital bed for Tina.

Tina is now set up in the back sunroom and Janie said that it seemed comfy out there.  She can now supervise all those that hang out clothes in the backyard.  

We talked to Emma and Jenn a couple of minutes ago and they are on their way to Tina's.  Casey and a PSW were there to help Tina with a shower.  It has now become a two person care for Tina.

Judy continues to do her Tuesdays and it is so appreciated.

I just talked to mom and dad today and they said that Donna B. was just there dropping off some Royal Coachman dinners and a homemade raspberry pie. She was on her way to visit Tina and drop something off there.  

I may have missed some of the people that have helped, visited or brought food as Tina doesn't feel like chatting as much these days.  Please feel free to send me a message if you visit, help, bring food in order to help us continue to document Tina's journey.

We want to say that we STEELE appreciate all of you.  This disease is moving fast and sometimes we find it hard to breathe when we hear the progression.   When I told Carol yesterday that I was having a hard time catching a breath, she said, "But we must.  We will get through this together."

So together we stand.  Thank you for STEELE standing with us.  We may be leaning a little harder on you these days.

Yard Sales and Napanee Connections

On Saturday, Howard H hosted a garage sale and all the proceeds went to Tina to help them.  Emma, Abby and Anthony did their part by running a lemonade stand.

They are pretty cute salespeople!

I was told that the day brought in just over $1000!  Tina was able to make it to the garage sale.  Hilda said that it was so nice to have a visit with them for a bit.

Thanks Howard and Hilda and all those that helped!

They were also able to get a ramp from the Gananoque church so that Tina can be wheeled into the bedroom instead of having to do the one step up.

Nursing has been changed to a daily visit instead of just twice a week.

Tina's beautiful blanket with the heart warming story behind
it a previous post.

There is still a struggle with the PSW and Respite times but this should be (hopefully) resolved within the next two weeks.  Saint Elizabeth has now got their Director involved to try and resolve the no shows or coming later than expected.

Tina continues to struggle with a lot of anxiety and panic attacks and so her medication has been increased.  Her anxiety is due to the workers not showing up and the progression of the disease.

With nursing coming daily, her care requirements will be reported more frequently and hopefully more care will be added.  A request was put in that the PSW time be changed from 1 1/2 hours a day to 2-4 hours and that Respite be increased to 4 days a week.

Today when I talked to Tina for a quick minute she said that she had gone to Dairy Queen for ice cream.  It's so good that she can still get out for these little treats.

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In Carol's world, Dustin (her second oldest boy) came for a week or so to visit on the island.  Carol got to have both of her boys around for a bit and it was good for the soul.

Ron and I drove north to a friend's birthday party.  It turned out to be a Napanee reunion.  There were lots of connections.  

The birthday was for Kevin, an OLD friend. 

Remember the Alberta boys in a previous post?

Kevin had recently been in Napanee to visit his mom, Thelma. Kevin's sister, Nancy has blessed Tina with meals and tarts.  I now have her recipe to try. Kevin had also stopped to see Tina a couple of times. Leanne, Kevin's wife, was friends with Tina when they were in their teens and apparently had a few experiences together that we laughed about.  I couldn't get a good picture of Leanne because she was busy hosting and looking after her little grandchildren.

Gary S. was also there.  He was quick to say that we were his Sunday School teachers way back when...

Ashley was there and the connection was two fold.  I don't think I had met her before but she is married to Kevin's nephew, Tyler.  Tyler's mom, Donna B just started following this blog.  Ashley's parents were youth pastors' in Belleville when we lived in Frankford, Ont.  

And then, in came friends of Kevin and Leanne's, Gord and Kendra.  We had never met them before but found out that Gord is a brother-in-law to Carolyn, another blog follower. They just moved from Napanee to retire in Alberta.

This may be all a little confusing to people that aren't connected to Napanee but I thought it was fun to share for the many that follow the blog that live or are from Napanee.

When we left Kevin and Leanne's, we went to stay overnight at Dustin and Katie's.  Dustin is our nephew and happens to be Kevin's 2nd cousin from the other side of the family.  Mind blown?  Let's just say "It's a small world."

We were thankful for some friend/family time in the west.  There were many questions about how Tina was doing.  Tina's journey continues to grow as people follow her story through these posts.

We have not been having our morning Sister Three chats and they are missed.  Mom and Dad told me that they continue to be amazed at how many people have poured out time, money, food and gifts to Tina.  

So we continue to STEELE Stand...sometimes we are lonely, sometimes we don't feel like talking but we are STEELE here.  We STEELE appreciate your thoughts, comments and especially your prayers.

Oh ...and one more thing, Howard (the garage sale host) was originally from Napanee!!!

She's a Motorin'

August started off with Tina not feeling well and ended up in Hospital requiring IV fluids twice.  Both times in Napanee on Wednesday and Thursday.  The nurse was not happy that she was not admitted and we ended up in KGH on Saturday.  After 3 1/2 hr wait in emergency she got a bed and meds.  She would be admitted and test showed she had a virus.  More meds and IV and released the following Friday doing wonderfully better.  On Wednesday last week she got her replacement lift chair and her lift.

Today she had her power wheelchair delivered.  After a test ride I had to do some adjustments to make it more comfortable for her to use and that took about 2 hours to disassemble and reassemble and no spare parts.

Homecare has been the norm no calls and no show Sat. Sun & Tues this week so far.

On Monday, respite was there for the day.  Tuesday, Judy came and spent her regular day with Tina. They took the chair out for a test drive.

Picture by Emma

Lynne M. stopped in for a visit.  Pastor Burt also dropped in to say hi.

Today, we got a video chat from Jenn who was spending the day with Tina.  Tina hardly would stop to say hello.  She was buzzing along in her electric chair and even doing circles in the road.  She looked pretty happy moving on her own.  Emma was running along beside and at one time sitting on Tina's lap.  Jenn finally gave up trying to video because Tina was getting too far ahead of her.  It was nice seeing Tina move on her own, giving her some independence.

We are glad that Tina finally got her wheels.  She's leaving people in the dust and doing donuts.  She had to take a driving test to handle the chair and she passed and now she is flying down the roads of Napanee.

You go, girl!  Do the donuts and the speeding.  Watch the curbs and don't do any wheelies!  You don't want to lose your license.  We loved seeing the smile and the sense of freedom in your eyes.

We are STEELE Standing and Tina is now wheeling.  Thanks for continuing to pray and visit and sending us your comments.

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Thanks for all the birthday wishes to Dad!  I'll make sure and share them all with him.

Carol has been enjoying some time with Dustin.

We've been celebrating birthdays at our house.  Sarah turned 13 on the 6th and Ron turned 59 on the 12th.  One is a teenager and one has one more year to retirement.

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He's STEELE Standing

The patriarch of our family turns 86 today.  Dad is celebrating his special day in style....going to Denny's Restaurant.  

Dad retired from work 16 years ago after a long career with Dupont.  He said at that time that he wanted to get out of there to enjoy life after work and he did.  A number of years later, he suffered a couple of heart attacks but even that didn't seem to stop him.  He has slowed down the past few years with his legs giving him trouble.

Dad was called "Sparky" growing up.  He always had lots of energy.  In his younger years, he played hockey and mom was there to cheer him on.  I have heard lots of stories about the purses coming across the boards when dad would check someone close to where mom and her sister were sitting.  I think mom might be the reason that they put plexiglass around the rinks now.

When we were young, dad was the one that would organize a baseball game in the backyard for the neighbourhood kids.  I will always remember him shouting to one little guy on third base to run home and the boy took him literally and took off home (to his house).

On hot days, he would come home from work and tell us to get changed.  We would hurry to get our bathing suits on and head to the local quarry for a swim to cool off. 

In the winter, he would shovel some of our back yard and water it regularly so that we could have our own ice rink.  I remember once him even building an igloo.  He was always kind of a big kid.

He enjoyed travelling up to about 13 years ago.  They travelled by plane, car and motorcycle seeing Canada from coast to coast. 

He is now known as Papa to lots of grandkids and great grandkids.

Happy Birthday Dad from The Sister Three!

I was pleasantly surprised this morning when talking to dad that my ipad rang and it was Tina.  We haven't been able to do our regular chats because of Tina being sick.  

Carol didn't make it on this morning and the chat was very short.  Tina just wanted to let us know that her emotions are out of whack.  While she was sick, before going to the hospital, meds were overlooked and now she needs things to regulate.  She is doing better physically but emotionally is not doing well. 

Emma is back at her side to help out.  Today the homecare worker came in the morning and respite was soon to arrive.  The nurse was coming to check her vitals.

Please continue to pray for Tina.  This is a journey that no one wants to take.  

Tina is STEELE Standing....she just needs a little more support.  Thank you for supporting Tina and our family in your thoughts, prayers and generosity.

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Thankful For The Cottage

STEELE Standing

We survived last night’s storm and even kept our hydro this time. We were thankful for the girls this morning who jumped in to help with moving Tina around.

Sarah helped Emma with the exercises.  They usually take about 30 to 45 minutes and are supposed to be done twice a day. Sarah made sure the stretch was good.  She pushed until her nose touched Tina’s finger and then she knew the stretch was good enough.

After breakfast, Tina asked us to all write down on a piece of paper what we are thankful for and then she would read them and we had to guess who wrote each one.  Tina couldn’t write hers so we did it for her.

Emma and I went for a morning swim.  It was a cooler morning and quite windy but the water was super warm.

The homecare worker, Adrianne came this morning and gave Tina her bath.  Shortly after that Angela, the nurse came for check in.  It’s great that the cottage is so close so that Tina can keep up with her routine…it certainly is a busy one.

Dad and Ron came for lunch.  I think they brought more food than they ate.

After lunch, Kate came and brought her little sweet girl, Willow.  She enjoyed the water for a bit. 

And then Willow got to work on Tina’s nails.

She really did a great job (actually Kate did the manicure) and Tina really enjoys this little bit of pampering.  We spent the rest of the evening with a little swim and then watched some home videos.  We smiled a little and laughed a lot.  There are lots of memories hidden in those old pictures and videos.

Tina had a full day of visitors and is a little more tired than she has been.  She sleeps in her chair that was brought from her house.  They have been experiencing with the sleep assist machine to make sure there is enough moisture and not too much.  Tina tires easily but doesn’t sleep too much through the day.  She can move a little freer right after morning exercises but stiffens up through the day after sitting in one position.  Her food needs to be soft and moist or she can choke.  This disease robs so much from a person but so far it hasn’t taken Tina’s positive attitude and that means a lot.

We are STEELE Standing and STEELE hoping and praying for a miracle.

Thanks for standing with us!