New Wheelchair

I got a new electric wheelchair several weeks ago.  It took a few weeks to get it adjusted to where I felt like I could use it and be safe.  (A man had to come to our house to do it for me.)  i practiced around the house, but that is a lot different than being out in public....

On Saturday, we decided that it was time to bite the bullet and force myself to use it. We found a van around Christmas time that has a ramp to drive a wheelchair in and out of.  That is really scary to me!  Anyway, I lived through getting into the car. Then we took it to school, and found that it could fit in my classroom and the bathroom.  That was a relief.

After that, we went to Maddox (in Brigham City) to eat dinner.  That was terrifying to me!  On the way out of the elevator, my chair hit the edge of the wall.  Then we went to the table to eat. I was trying to get close enough to eat comfortably, and the joystick that controls my wheelchair got stuck under the edge of the table (in the forward position)!  My hands were stuck under the table, too!  My right hand was too squished for me to move it at all, so I couldn't do a thing to stop moving forward!  Poor Roberta was across the table from me, so I was pushing her backwards in her wheelchair!  Our waiter came running, and so did the manager.  Roberta was (appropriately) yelling, "Stop, Rebecca, stop!"  I was yelling, "I can't," back at her (as much as my voice can yell these days). Finally, it dawned on me that the power button for the chair was above the table, so in between yelling at Roberta, I started yelling, "Alan, turn off the power!  Turn off the power."  Thank goodness, he did!  That is one meal I will not forget!  Now it's funny, but I about lost it that night.  I wondered if I should ever go out in public again!

 

Angels Among Us: Part One

I started this post quite awhile ago and haven't taken the time to finish it.  Now is the time.  Ever since my mom's diagnosis, we have been overwhelmed by the outpouring of love that has been shown to our entire family.  We have felt your prayers and support and appreciate it so much.  It has been hard for me to live far away and know that I can't help my parents as much as I would like to, just due to the distance, but I am so grateful to know that they are being taken care of even if I can't personally be there all the time. I hesitate to start making a list because I know there's no way to mention every little thing that has been done, but just know that no act of kindness has gone unnoticed.

Prayers: First and foremost I would like to thank everyone for the prayers that they have offered on our behalf.  This is one of the most, if not the most, difficult trial our family has ever been through.  I have heard so many stories over the years of how people can feel the prayers of others when they are going through hard times.  I believed it, but had never personally experienced it.  I can now say that I have personally experienced it.  

The day my mom was told she had ALS and even before her diagnosis when all we knew was that her health was declining but we didn't know why, I felt such a hopelessness.  I didn't want to watch my mom go through everything she was going through and then when it was confirmed to be ALS I can't even describe the emotions that I experienced.  We waited to tell people for another day or two following the diagnosis.  Then once we started to share the news, my feelings changed.  Yes, I was still sad (and still am) but I have felt an undeniable strength and peace come into my life that I can only attribute to the many hundreds of prayers being offered for me and the rest of my family.  I can only speak for myself, but I'm sure the rest of my family would agree that the prayers are what have given us the strength to make it through this trial.  

My parents live on a busy street and everyone who lives in their area passes their house to get almost anywhere they're going.  One friend said that she had been pondering what she could do to help our family and she realized that about all she could do for them was pray.  She decided that every time she passed my parents' house she would offer a prayer for them.  We have since shared that with a few others and I know that there are lots of prayers being said as people are on their way to the grocery store, school, gas station, etc.  THANK YOU!

Phone Calls, Visits, Cards, etc: More often than not, it seems like when I call to talk to my mom, my sister answers the phone and says that someone is there visiting so they'll have to call me back in a little bit.  I have also personally seen all the piles of cards and notes that people have sent to my mom expressing their love and friendship for her.  I know every little phone call, email, visit, card, bouquet of flowers, etc, has made such a difference in brightening her spirits.

 

Meals:  It seems like whenever people are going through something, food is the first thing that people think of to do to help.  It is so basic, but makes such a difference.  My mom is unable to cook anymore, and my dad is so busy taking care of my mom, working, and being involved in the Mormon Tabernacle Choir, that is makes it hard to take care of the basics.  I know that if necessary that dinner would be brought in daily, and that may become necessary in the future, but for now we appreciate all those who have so willingly provided meals from time to time.  They have even had their freezer well-stocked with freezer meals, so that there is always food in the house when they need it. 

Co-Worker Support:  My determined mom has always loved her teaching job.  Even when most people would have quit at the onset of health problems, my mom has determined to stick it out.  I know she makes a difference in the lives of her students, and they make a difference in hers as well.  She has 2nd graders that fast for her monthly.  The other faculty and staff at her school have done so much to support her as well.  They heard that my parents and sister would have to live in a hotel for two weeks while their house is being remodeled and they arranged to bring meals for them each day.  They have also given her flowers and gifts and more than anything a shoulder to cry on when needed.

My dad's co-workers have also been very supportive too.  He leaves work multiple times a day to help my mom get to the bathroom and take care of whatever else needs to be taken care of that day.  Luckily my dad has been so healthy over the years that he has an almost endless supply of sick leave, but that doesn't get his work completed.  His co-workers have willingly picked up the slack wherever possible to try and lighten the load.  One week he was feeling particularly stressed and overwhelmed and he arrived at work and was called into a "meeting."  At that meeting he was presented with a nice card and some gift cards to help offset the cost of the gas he spends driving back and forth so much and to help purchase food when necessary.  Everyone in his office had contributed money to make this happen, which was much appreciated, but even more than that he (and the rest of us too) appreciated knowing that they cared and were thinking of him and what he's going through.

I think I will split this into two posts and finish later so I can get this part posted now.  Honestly I could make a whole blog on the acts of kindness we have been shown.  Words can't express our appreciation.  Stay tuned for more in the near future.

 

Second Lesson Learned

My ALS is progressing a lot faster than we'd like.  My legs are extremely weak.  To stand me up, Alan bends at his knees, goes down quite a ways, and then pulls me up as he stands back up. It's hard enough that Emily can't do it any more.  (I fell once while she was trying, then I fell again four days later  when Alan was trying to transfer me. Now we use transfer boards śome of the time.)  Once he pulls me up, I can only stand for a little while if I'm holding onto something.  It's harder and harder to get in and out of the car, but somehow Alan does it.  Every morning I pray that Alan and I will both be safe through the day.  God has been very kind to us, we have been. My hands and arms are starting to feel it, too. I  can print, but I write slow now.  I can't lift my hands up very well at all.  In fact, Alan now curls my hair!  (That's given us lots to laugh about.)  His latest worry is when I get to where I can't put on my own makeup:). My voice is starting to change.  I have to be careful not to talk too much at once.  (My brothers would have loved for me to have had that problem when we were growing up:))

A lesson I learned in October has been really helpful.  We had a fire drill at school, and I face planted! (If you ever want to feel like a real klutz, try falling in front of 600 people:) ) I hurt my shoulder, so I started going to physical therapy.  I had the most incredible therapist named Becky. She is shorter than I am, and she is nice and thin, but she's really strong. I would try to help her move me by using my arms. She would tell me, "You need to trust me.  Put your arms around my neck, hold on to me, and let me do the work.  Trust me!"  She had to tell me that several times before I finally realized she was right!  I'm not sure when it happened, but one day I realized that I need to put that kind of trust in Heavenly Father.  Now when times get scary or hard for me, I think of Heavenly Father saying, "You need to trust Me.  Put your arms around My neck, hold on to Me, and let Me do the work.  Trust Me!"  Somehow I am convinced that this disease is an important part of my life here on this earth.  I don't know why I have to go through it, but I am sure God will keep the promise He made in Romans 1:38: "All things will work for good for them that love the Lord."