One Year

On October 7, 2014 I woke up feeling things that are hard to put into words. It was almost like I had a sense of impending doom. I didn't know what that day held, but something kept telling me it would be life-changing. I knew my mom had an appointment with a neuromuscular specialist at the U of U to go over her latest test results. We didn't know what the future held, but deep down I knew it wasn't going to be good. 

I tried to go about my day as normal and try not to worry about what my parents would be learning at the doctor that day. I had a doctor appointment for my 6 week old baby who was struggling with reflux. The doctor suggested that since he was mostly eating breastmilk that I should try eliminating dairy from my diet in case he had a food sensitivity. That was a hard thing for me to hear since I love my dairy products. As I drove home I kept thinking that maybe that was the only bad news and the reason for all my negative feelings. I tried to convince myself, but I still somehow knew that something worse was about to come. 

Needless to say it was a long day. I kept waiting for my parents to call and figured they should be done with their appointment. I tried calling a couple times and kept getting voicemail. Finally I reached my dad. He asked me to hold on for a second and then I could hear him talking to people in the background. When he came back he said he was asking my mom if he should tell me. I could tell by his tone of voice that what he was about to tell me wasn't going to be good. 

I don't remember much of what he said other than that they had just diagnosed my mom with ALS. My heart dropped. I wish I could say I was surprised, but Jeff and I had watched our bishop's wife in California go through ALS and that had been in the back of my mind as my mom kept showing more and more symptoms. 

Our call was pretty short. I was still trying to process everything and I know my dad was too. I got off the phone and called Jeff who was sweet enough to leave work early so he could come home and be with me. We talked and decided we didn't want Mandy to hear over the phone all alone so we decided to drive to her house and break the news to her in person. I felt for my dad in that moment. How do you tell someone that their mom has a horrible disease and that it's terminal?  It wasn't easy but we spent some time together trying to process it all. 

The past year has definitely been life-changing for my whole family. One of the strange things about ALS is that you spend a lot of time grieving. It's not like when someone passes away unexpectedly and the grief hits at once. With ALS you grieve when you initially get the news. Then you grieve as the person loses her ability to do certain things. We grieved as my mom progressed from having to use a walker to a scooter to her full electric chair in only a matter of months. We grieved as she lost her ability to use her hands and then as her speech started to go. We will grieve when she dies for sure, but in a lot of ways it will be a relief knowing that she no longer has to be trapped in her body that doesn't function. 

I don't mean to make it sound like we spend our days grieving because we absolutely don't. One of the big blessings of ALS (or any other terminal illness) is that you get the opportunity to tie up loose ends and say the things you might not have said otherwise. 

When my mom was diagnosed with ALS I told myself I was going to take as many opportunities to spend time with her as I possibly could because I didn't want to have any regrets. I don't even know how many times I loaded my little baby and all his gear into my car and headed up North. Up until July of this year I was going at least once a month. Sometimes just for a couple days and one time as long as 10 days. Jeff was so supportive of me leaving him behind and going up there. 

When I started having complications with this pregnancy my doctor told me no more traveling. I specifically asked him about going to see my mom and he said no. He knows the situation but he said it is way too risky and that me sitting in a car that long could cause me to hemmorhage and bleed out very quickly. My sweet parents have made an effort to travel here and see us even though it wears my mom out a lot. I know her traveling days are extemely limited and that most people in her situation would have stopped traveling months ago. But time is precious right now and I'm grateful for every minute that I get to spend with my mom. 

One of my big worries when I learned my mom had ALS was that she would go into a deep depression and not want to leave the house. She has done just the opposite. She has been determined to live each day to the fullest and she has surely done that. I know I have posted all their trips previously but they also went on a cruise to Alaska (with the whole family except for us due to my complications), they've come to St George and done all kinds of fun things close to home too. It has made me look at my life and wonder how much time I waste on things that just don't matter. Life is short and we need to make the most of it. I'm grateful to my mom for setting that example. 

I could write a whole book on the ways our life has changed in the past year, but for now I'm going to sign off. I know I've said it before but I'm going to keep saying it. I am SO grateful for the prayers and support that have gotten us through this past year. When my mom was diagnosed she was asked what kind of a support system she had. Without hesitation she responded that she had a great one. We knew she did, but people have been so much more amazing than any of us could have comprehended just a year ago.  I just hope that I can pay it forward and find ways to love and support others in their trials. 

Greatest Forces

"When God wants a great work done in the world or a great wrong righted, he goes about it in a very unusual way. He doesn't stir up his earthquakes or send forth his thunderbolts. Instead, he has a helpless baby born. ...And then God waits. The greatest forces in the world are not the earthquakes and the thunderbolts. The greatest forces in the world are babies." -E.T. Sullivan

I came across this quote somewhere around Christmas time and snapped a picture of it.  I didn't think too much of it until I came across it on my phone a month or so ago.  It struck me that even though this past year has brought the biggest trials my family has ever experienced, it has also brought the biggest miracles.

It's crazy to think about, but at the end of 2013 my parents had 2 grandkids.  By the end of 2015 they will have 7.   I can't help but think that it is not a coincidence that Heavenly Father would choose the hardest time to send so many of these sweet miracle babies to the Earth to bring so much happiness and joy into our lives.  I'm pretty sure that I can safely speak for my parents when I say that these sweet little ones have brought so much contentment and helped them focus on what matters most: family. 

Forgotten Blog

Okay, so contrary to the title of this post, I haven't really forgotten about this blog and I really don't have a good excuse for not maintaining it, so let's see if we can get back on track.  I know most of you have most likely seen my Facebook updates, but here's what has been going on for the Niederhausers since I last updated in February.  Sorry for the lack of pictures.  I will have to try and get some from Emily to add later.

•  Washington DC: One of the places my parents have always intended to take Emily was Washington DC.  They took the rest of us kids there when Emily was pretty young so they wanted to get to take her during a time when she could appreciate everything and understand the significance.  Over Spring Break my parents and Emily and Trevor went and spent a week there.  They were nervous about the logistics of my mom being able to travel, but overall things went pretty smoothly.
• Retirement Party:  About a month before school got out my mom's school decided to throw a nice retirement party open house for her.  They showed a video that the kids had put together for it and had some of the teachers get up and talk about how much they had enjoyed working with her.  She was really nervous that nobody would show up, but there was a huge turnout and a long line of people waiting to talk to her.  All my siblings were there except for Mandy who wasn't able to get work off, so it was neat to be there in person and meet all the people we've heard so many stories about.
•  Grandma's Funeral:  A day or two before my parents left for Washington DC my grandma Niederhauser tripped and fell in her bedroom.  It was her second fall in a short period of time, but this time she broke her arm and found out she would need surgery.  Without going into too much detail, they discovered at that time she had some other health issues as well.  They went ahead with the surgery and then she went to a rehab facility.  Unfortunately she never really gained enough strength to recover from everything she had going on and passed away in May.   I am so grateful that I happened to be up at my parents' house a lot during that time and was able to visit her multiple times both at the hospital and the rehab facility.  We will all miss her more than we can say, but we know that it was her time to go. 
• Last Day of School:  My mom was able to reach her goal of finishing the school year.  It was not an easy feat, especially toward the end, but she did it.  We are so grateful for all those who helped her be able to make that happen since it was so important to her.
• Trevor and Misty's Wedding:  Trevor and Misty got married on June 10.  Their wedding turned out really nice and we are so grateful to all of those who traveled to Lindon to show their support.  We also had so many people make food for the reception which took a huge burden off of my dad, so thank you so much for that.
• Disneyland Trip:  My mom decided that she needed to try and fit in one last trip to one of her favorite places...Disneyland!  So in June she and my dad took Emily and Scott's family to the happiest place on Earth.  My parents even splurged and spent a couple of nights in the Disneyland hotel.  Although there were a lot of rides my mom couldn't go on, they were pleasantly surprised that she could wheel her chair right onto some of her favorites like It's a Small World and the Little Mermaid ride in DCA.  They had a great time watching the parade and the World of Color show and being a part of the Disneyland Diamond celebration.
• Visits From Family Members:  My mom comes from a very large family.  Many of them have made an extra effort over the past few months to get to Utah and see my mom.  I know she loves the visits, so thanks for all who have stopped in.
• Lake Tahoe:  As I type this my parents, Emily, Scott's family, and a lot of my extended family are at their annual family reunion at Lake Tahoe.  Yes, they camp.  Yes, my mom is camping.  I have talked to them a couple of times this week and they did end up spending one night in a hotel due to major rain and hail storms, but other than that my mom has managed to sleep in a tent.  My Aunt Mary actually brought a bed for her to put in the tent, and I can't imagine it's been easy, but my mom was determined to make it happen and sounds like she has.  

I know this is really long, but hopefully not too boring.  They still have one more big thing planned in about a week, but I will post more on that later.  As always thanks to everyone for their love and support.

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."

A Busy (But Wonderful) Holiday Season

I meant to write something every Thursday night while Alan is at Mormon Tabernacle choir practice. Obviously, I have not done very well with that goal:).  I guess it's time to start again.

Our family had a wonderful wonderful Christmas season.  We have wonderful neighbors. We don't know who, but two different families did 12 days of Christmas for us. They gave us incredible gifts each night, and we looked forward to whatever they would bring. We also were sent notes and cards from many different people. One neighbor couple sent us a beautiful, beautiful bouquet of flowers. Other people visited and brought flowers. We felt very very loved and cherished, and I will always appreciate everything that was done for us.

Then as Christmas got close, we got to spend time with our family. We started by having a Christmas Eve dinner with my sister, Roberta, Alan's parents, and our family. We had a great time.  Scott, Hailey, Shaylee, Eli, and Jax all spent Christmas Eve night at our house. That was great because we got to see them wake up to see what Santa brought. Then on Christmas morning, Nicole and Jeff came with their baby Jeffery. They drove through lots of snow, but made it made it safe and sound. After they got here, we got to enjoy their  company and then open Christmas presents.

Nicole gave me the most amazing gift!  She had asked people to send letters to her. Then, she put the letters in plastic sheet protectors, and put them in a binder. I was amazed at the beautiful things people said. I cried and cried, but they were good tears, not bad. I know that those letters will help me in days ahead, but they already have been a big help to me. I appreciate every person who sent something to Nicole and I appreciate the hours and hours then took her to compile everything. It will be something I will always treasure.

Then a few days after Christmas, we were planning to go to Colorado to spend New Year's Eve and New Year's Day with my brother Bryan and his family. We tried as hard as we could, but realized we just couldn't do it. We called Bryan to tell him, and within 12 hours he and his family were on their way here. It was so much fun to have them. We visited lots, ate lots, and played lots of games.

The Saturday after that, we went to St. George to see Mandy and Andy and their baby Olivia. Olivia Louise Rhodes was blessed on January 4 by her father, Andrew Jay Rhodes. Again, all of our kids did what it took to get there. We had lots of fun visiting with each other and enjoying each other's company.