Nick is laying very peacefully next to me tonight. I feel like sharing that because it has been the one thing he has wanted for quite a few days now. We have battled a lot of things, but secretions, saliva and mucous are never going to be a PALS (person of ALS) friend – especially in a cervical/thoracic collar. Even up until this morning we had every intention of getting Nick in the wheelchair to get him home hopefully by mid-week. However, the last two days have been a constant battle with a cough and some thick secretions that have required suctioning and have created enough of a panic for Nick. One of Nick’s final wishes was to not feel that fear and panic as if he was suffocating or drowning. We have had a plan in place since we first talked about end of life stuff and planned our funerals. Oxygen, narcotics and muscle relaxants are very dangerous for ALS patients because they depress the respiratory system and the drive in the brain that keeps them breathing. We have avoided these things thus far in order to keep him where he was prior to the accident. The use of these things, however are what make those ALS patients and many others most comfortable in the end of life. In most cases the respiratory system is the most fragile and what will ultimately fail for them.
Nick being the fighter he is felt like he was letting people down by telling us he couldn’t deal with this coughing anymore. He made sure that he wasn’t disappointing me and his family by taking some medication to make him feel more comfortable. His parents and I sat with him and shed a few tears, but ultimately reminded him that he wasn’t ‘giving up’ or that he was disappointing us by going along with his wishes. Today after his last two sisters arrived from Denver, and the entire family was present you could see the peace that washed over him. He talked with me alone a couple of times and had to ask me some questions about whether I would be okay etc. When he felt okay with my answers then he said ‘good, then I am going to see the joy in this time now’. A little more aloof and relaxed, Nick spent the afternoon listening to stories and slipping in his usually witty comments. At one point there was a lull in our conversation he said ’so, are there any family secrets I need to know?’ It was just the perfect line from him and for the moment.
The coughing reared its ugly head still intermittently so we got a more sedating medication ordered. This will allow him to rest and relax a bit more and perhaps he will have a larger dose tomorrow. Tonight he took his usual ambien with this med and was slurring his words within minutes. He had quite the goofy smile on his face and was talking about the most random stuff. We spent the forty minutes prior just cuddling and talking and of course sharing our tears. Those are the moments that I will remember forever. Earlier in the week he told me that even if he gets gunky and has a hard time breathing and doesn’t make it home at least he got to spend this week with me. Its almost like he knew. I am sure he is including his family in there as well. Its pretty special to be surrounded by this group.
Talking with the hospice team today they asked me if there was anything they could get for Nick or do for him. I mentioned Ylvi coming up for a visit. Those two have spent the days that I have worked, alone in the house taking care of each other. I have forever been amazed by their bond – especially Nick the cat person. Ylvi came for about 3 hours this afternoon. She jumped right up on Nick’s bed and was licking and nuzzling him. She laid right down next to him and buried her nose under his arm. She kind of whimpered a few times and then just relaxed. A little while later I had her jump up again and she fell asleep right next to him after a few much needed foot pets by Nick.
As far as not knowing how long Nick has, we are making it our mission to keep him comfortable and cough and panic free. He has been so thankful for all the comments on the blog in response to the accident news as well as to his writing in the past two years. I always wondered how he was going to handle quiting his job and staying home. He found a passion and a purpose that I am sure has touched much more than me. It pains me to write this post, but again Nick having the profound wisdom that he does, said it was only a matter of time anyways. He said he wasn’t thinking he would have made it to Christmas this year. I find it interesting to hear that since as often as we talk about end of life and planning, this never came up.
I will continue to keep our readers posted on Nick and any further news that should come up. Keep the thought of peace in your minds as that is what Nick wishes for the most.
at 10:20 pm
Nick and Ann-
My thoughts of peace and happiness are with you both. The two of you are an amazing pair!!! What both of you have shared with so many people is unbelievable and knowing you both has made me a better person.
All my love…
Peace to you my friend Nick! Stay Strong Annie Girl!
Love,
Lindsey
at 10:39 pm
Nick – I hope you’re comfortable and glad you’re surrounded by your family. Ann’s post makes me reminisce about our CoSIDA Convention trip to Cleveland. How did we ever let Blanch talk us into driving that far?? I remember Eternal Job Seeker stealing my pen, the fireworks and Cleveland Orchestra outside our hotel room six hours before we were leaving and seeing a baseball game in Jacobs Field. One of the best CoSIDA trips ever.
Peace and His blessings to you and Ann. You’re both in my thoughts.
at 11:27 pm
Nick and Ann~
We just wanted to say thank you to the both of you for sharing your thoughts and keeping us updated on your condition. The two of you couldn’t be more perfect for each other. We all have been touched by your words, your perseverance, resilience, and commitment to each other. Words cannot express how much we think of the two of you. You are in our thoughts, hearts and prayers always.
May the LORD’s everlasting love and peace be with you and your family now and forever.
John and Nicole Knodel
at 11:53 pm
Nick and Ann
Thinking and praying for both of you. You two are my definition strength. You are a daily inspiration to me and to everyone that has met you. I wish you peace buddy.
Jered
at 4:53 am
Wow, Ann you are an amazing wife, daughter and friend. I truely believe it was the plan of a higher power to bring the two of you together. You are both in our thoughts and prayers always.
Lords blessing on you both,
Gary and Deb
at 6:14 am
Nick and Ann,
No words can describe how I’m feeling right now. Ann, you are the most wonderful person, and Nick is so lucky to have you in his life and vice versa. You are both such strong and driven individuals. I’m just so glad that God made it possible for you 2 to find each other. You are definitely the perfect pair. My thoughts and prayers continue to go out to you every single day! Stay strong!
Love
Cassie
at 8:12 am
Nick since the day you were hired to BVU family you and Ann have improved our lives. From your strength in faith to champion for the cause, we’ve been inspired to be better people. I remember feeling like such a voyeur when first reading your blogs from China. We didn’t know you at all back then, and yet you were teaching us a greater lesson from your life experiences. Many nights have been spent enjoying the latest humor provided to us on the Nick Ann Street…..the mowhawk is quite a site however. Thanks for keeping us up-to-date with your health and know that you and Ann are in our thoughts and prayers daily. (And Nick Hailey sends you a “high five”)
at 8:35 am
Lots of love to both of you … although my heart is hurting for you both, I’m summoning up thoughts of peace and love to send your way …
at 8:37 am
I’m praying for you both. My thoughts are always with you.
R
at 9:37 am
Ann (and Nick) you are in my thoughts are prayers. I just heard about your accident last night while I was at Camp, and I have been praying ever since. Even though I am a ways away, please let me know if there is anything that I can do for you.
Katie (Toufar) Rykal
at 9:45 am
Ann and Nick,
Our thoughts and prayers are with you. May God’s love and peace be with you.
Kara and Vic
at 10:09 am
…continuing prayers for you.
at 10:22 am
You are continually in our thoughts & prayers. You both have demonstrated such strength & grace – may God’s peace surround you.
at 10:49 am
Nick and Ann
I am an old alumni from LPBC and have gotten into reading this blog daily. I thank you for sharing everything in this blog and letting us get to know you. I am thinking of both of you and praying for you. Nick has such strength that it inspires me to be a better person. Thank you for this. God bless you both
Laura Bergeson
at 1:02 pm
tim and I are there with both of you and ylvi….you are such special people. we send our love and prayers and wishes for peace–to you, nick and ann, most of all…but really to all of you in the “nick and ann family.” we are a most blessed group, aren’t we. Thank God for you both.
at 1:04 pm
Ann and Nick,
Our thoughts and prayers are with you both. I’m truly honored and inspired with the strength and obvious love for each other you both possess. You have touched many hearts of many people. God bless you both.
Sherry & Ryan
at 1:29 pm
Nick and Ann -
Emily (W.) alerted me to these updates on your blog. I will be thinking of you often and praying for you and your family. As others have said, you truly are an inspirational and very loving couple. Thank you for sharing your life with us.
Betsy
at 2:06 pm
Nick&Ann-
Lindsey has been so kind in calling me and keeping us up to date. When we where reading over this “peace” today I was holding back the tears. You both are so inspirational…Nick for being who you are and Ann for just being amazing. Our thoughts are with you both! May you have peace during this time!
Luther
at 2:13 pm
Nick and Ann, Powerful post, thank you for keeping us up to date. Nick, I knew this time would come someday I just really didn’t ever want it to. You have touched my heart so many times and I know you’ve made me a better man by just purely knowing you! Our Lord is calling you home, He will take away all your pain and give you true life. My prayer is that you stay comfortable until he says it is your time. My memories of you will stay with me forever. I love you, man. Ann, there’s no doubt God brought you into Nick’s life. You are such a great couple. You are a very special person and thank you for how you have taken this bull by the horns and taken care of Nick through thick and thin. You are truly incredible and my hero! May God bring peace to you both and your family.
Willie
at 2:18 pm
Nick and Ann,
I have been loyally reading this blog but this is my first post. Junior See-Gar also alerts me when there is a particularly interesting post. This blog is such a blessing and so funny, poignant and heartfelt. Know you are loved for your big goofy grin, sense of humor, and unique worldview. Such grace, dignity and resolve. What a hero you both are for all of us, your CoSIDA posse. Much love and laughter from the Gang!
Love, Nancy
at 2:38 pm
Nick and Ann,
I check in to your blog almost every day. I was out of the country for two weeks, and just returned home to find the current posts. So many are blessed by the two of you – your compassion, your attitudes, your love, your joy, you strength, on and on. Our love and prayers are with you now. Thank you for sharing your hearts with us!
Much Love, Amy Kahl
at 4:11 pm
Jofrid says:
Nick and Ann.
Thinkingof you day and night. Like Nancy Worley said in her blog you are bith heros. Thank you so much for everything you are shearing with us and giving to us in your blog.
Lots of love, Jofrid, Arild and John-Anders
at 6:08 pm
Nick,
You have been in my prays daily. Ann you have too. May the peace of knowing who your Lord and Savior is be with you during this time. Nick you are an inspiration to many and you have used God’s gifts that he has giving you to good use.
Blessing,
Gary
at 6:24 pm
Nick and Ann,
I’ve been thinking of you both quite a bit lately, and will continue the thoughts and prayers. Thank you both for everything, and peace be with you. My friends and family also send their best wishes and thoughts.
Love,
Noah
at 6:35 pm
Nick and Ann,
You two have been an inspiration to many. Your words have shown that Nick has been living with ALS, not dieing from ALS. What a legacy. Your strength is a blessing. Your love is never ending. Not many couples have that. My prayers and thoughts go with you both and your families. My wish is for peace for you all. Heaven is a place were there is no more hurt, no more worries, and Peace.
God’s Blessings,
Sheryl
at 6:37 pm
Nick, Ann, Jack, Karen and family,
Ann – What a wonderful, heartfelt post. Thank you for sharing with all of us, so that we can continue to add our thoughts and prayers for all of you.
Nick – You without a doubt, have educated, inspired, entertained, and allowed us to follow your journey in an amazingly open and honest manner. Please know that Ann, you and your entire family are in our thoughts and prayers. May peace and grace surround all of you.
Sincerely,
Rhonda Dubs
at 7:10 pm
As others have said, I too have checked this blog on a daily basis, looking to be inspired, informed, entertained, and called to action. I feel as if I know both of you, Nick and Ann! My prayers and thoughts are with you as you find your peace.
at 7:33 pm
Nick and Ann
I have been following your amazing journey for some time now. My sister is Deb Wanberg. She told me about your crash. I teach DUI classes and brought it up in class. I also teach an at-risk youth class and tomorrow our subject is resiliency. The two of you will be included in our class. Please know that you are in my thoughts and prayers each day. I admire both of you more than you will ever know.
Renee King
at 7:41 pm
Ann and Nick,
First my thoughts and prayers are with you as you face this battle. I have been impressed by both your maturity and sightfullness as you wage the war on ALS. You two have truly given your hearts to your wedding vows ‘for better or for worse, in sickness and in health’.
You may not recognize my name, Ann. Your mother, Lana, has been a friend since college. She even sang at our wedding 41 years ago. Then your sister and my son were college classmates at Luther. When Turie, my daughter, pursued the nursing program at Luther, you were a year ahead of her in the program. When your mother included your website in one of her Christmas letters, I logged on and have enjoyed reading it ever since. I learned a lot about lots of things. Nick is very good at communicating his thoughts and feelings. I had an aunt who had ALS. I watched her go thru all the stages of the disease. I will be sharing your latest events with Turie as she and her husband are coming tomorrow for the wedding of his brother. a Luther student and his bride another Luther student. Turie and David are still dealing with the stillborn birth of a son in Feb. But now with a bit of apprehension and joy, they are hoping for a healthy baby in Jan. Life is precious. Ann, you and Nick are the bravest and most courageous people. What beautiful things he says about you and you about him. You both are very special. God’s blessings to you both.
at 9:12 pm
Nick & Ann -
I’m sorry that we missed this post yesterday Ann. Our peace and love is with you both. We are so thankful to have the both of you in our lives. It has been amazing that Nick has been blogging for two years already. I don’t think that a week has gone by in the last two years that I haven’t told someone about his blog. You guys have inspired our family in so many ways. Joel and I live our lives differently because of you both. You’ve always taught me to find the peace in everything Ann. Your courage and faith is shining through Ann and it is really helping our little family to remain peaceful during this time. Our prayers are with you and your family. We love you both very much.
Cathy, Joel, & Makayla
at 9:27 pm
Ann & Nick –
I just happened to be checking the Luther Park group page on Yahoo and saw the post about your Blog… I’m so sorry to hear about your accident and am glad that things didn’t end up worse! Your love story is inspiring.. and you both are in my thoughts and prayers!
Marcie Young (Ramseier)
at 4:29 am
Ann and Nick,
The love that you both obviously share for each other during both good and bad times is truly amazing (and that’s just apparent from what I’ve read!) Thank you for continuing to share your story.
I was so sorry to hear about your accident and the events following. Please know that you both are in my prayers. I pray for peace, comfort, acceptance, support, love, among other things.
Amy Moe
at 5:55 am
Ann & Nick-
Words cannot express the admiration I have for you both. Your love for each other, your continued fight against ALS, and your persistent sense of humor have truly been an inspiration to me. My thoughts are prayers are with you both.
Lindsey Meyer
at 11:02 am
To be strong
To be strong is not – to run fastest – jump longest – or lift the heaviest weights.
To be strong is not – always to win – always to be right – or always be the one who knows best.
To be strong is being able to see the light when it is as darkest – fight for what you believe in even you are run out of power, to face the truth even it is hard. Ann and Nicholas you are so strong and we love you so much.
You are in our thoughts and in our hearts
Love, Jofrid and family
at 11:57 am
Huber – you most definitely are not giving in or disappointing anyone by taking some meds aimed at peace and comfort. You forever will be an unbelievable fighter and a symbol of strength to far more people than you realize. Thank you for your friendship and lessons on how to live.
Ann – Nick has been truly blessed to have you in his life, and I thank you for the care you have given him. I also thank you for keeping family and friends updated with postings to his blog since the accident.
I also wanted to let you know that this fantastic blog was the inspiration behind Laura and me starting a blog for family and friends when our daughter was born and rushed to the NICU on July 2nd and then went into surgery two days later – ironically on the same exact day as your accident. Our situations are not to be compared quite obviously, but I do want to thank both of you for your wonderful communication throughout everything.
We love you,
Brian and Laura
at 5:14 pm
Nick & Ann,
Our thoughts & prayers are with you both. You will truly be one of God’s most treasured angels!
Much love,
Matt, Jenn, Ethan, Kellen & Emma
at 7:46 pm
Nick and Ann,
I’ve been thinking of you constantly since I heard about the accident, and greatly admire the strength that you both posses.
Nick, I’ll also be forever grateful for the influence you’ve had on me, both way back in HS, and again since you started this blog.
Thank you, from the bottom of my heart. You are both in my prayers.
Reb
at 8:23 am
Even though you don’t know me, I feel like I know you. I found your site through Shelley’s and wow – I have loved reading it. Your relationship with each other inspires me. I am praying for you…
at 10:34 am
Nick and Ann,
Thank you for letting us all know how you have been doing since the accident. Getting to see you at the reunion was special, and I have been praying for you both and your families since I heard about the accident. Ann, I am truly amazed at your love for Nick and your being there for his every need. And I have loved reading the blog over time as well. I pray for peace for Nick as he awaits God’s perfect timing to bring him home, and I pray for comfort for everyone who has been touched by you both. God’s blessings to you!
Love,
Rachel
at 10:46 am
Love, love, love, and more love to you.
at 2:26 pm
Nick and Ann-
There are no words that can accurately sum up, explain or convey the amount of love, admiration, inspiration, joy, and peace that your friends and loved ones have for you both. I consider myself lucky and blessed to call you both my friends. All of my love and thoughts and prayers are with you always.
Love,
Tim
at 10:18 pm
Being strong and putting everything in God’s hands during these hard times is so very important. God has his own plans and He knows what is best. May you be blessed with the peace that is to come. It will be extremely hard, but let God lead the way.
Recently we lost a very close friend who made the decision to follow the path that God had lead her to. She had suffered a stroke 15 years ago and lived a life in a body that would not allow her to move or speak. She was very strong and put her life in the hands of the Lord. She touched so many people even though her communication was extremely limited.
Nick – your life has been a true inspiration to so many people, the number of lives you have touched and changed is beyond anyones belief. Like our friend, you did not let your disability get in your way of living your life to it’s fullest. If it is time to move on, then God will give you the strength to take the next journey of everlasting life.
Love you both – Laurie
at 8:52 am
Nick and Ann,
Your circle of love and strength and admiration ripples with no end in sight! Your impact has nudged each of us toward peace. Embrace your peace.
Another faithful fan,
Sally Kruse (Jered’s mom)
at 3:19 pm
Ann, I’ve been thinking of you these past days. I am praying for you and your family. This blog has been an inspiring tribute to Nick’s strength and spirit.
at 6:46 pm
I’m from Norway so my English isn’t great, but what I understood of the article it was great!