Friday, October 31, 2014

Mike's Funeral Service

I had so hoped to be able to put a link here to the video from Mike's funeral service held 4 weeks ago today. That didn't work out so I am going to post the words and music from the service as best I can.

I didn't get good audio from the Choir but I posted this because the two are very similar. WLA's choir directed by Dale Witte did an awesome job. This is a recording from our MLC college. I thought I would post this first so you could listen to it while you read the rest of the service.

FIRST LESSON                                                                            Psalm 46 (NIV84)
God is our refuge and strength, an ever-present help in trouble. 2 Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea, 3though its waters roar and foam and the mountains quake with their surging. 4There is a river whose streams make glad the city of God, the holy place where the Most High dwells. 5 God is within her, she will not fall; God will help her at break of day. 6 Nations are in uproar, kingdoms fall; he lifts his voice, the earth melts. 7The Lord Almighty is with us; the God of Jacob is our fortress. 8 Come and see the works of the Lord, the desolations he has brought on the earth. 9 He makes wars cease to the ends of the earth; he breaks the bow and shatters the spear, he burns the shields with fire. 10 “Be still, and know that I am God; I will be exalted among the nations, I will be exalted in the earth.” 11 The Lord Almighty is with us; the God of Jacob is our fortress.

SECOND LESSON                                                                 John 14:1-6 (NIV 84)

“Do not let your hearts be troubled. Trust in God; trust also in me. 2 In my Father’s house are many rooms; if it were not so, I would have told you. I am going there to prepare a place for you. 3 And if I go and prepare a place for you, I will come back and take you to be with me that you also may be where I am. 4 You know the way to the place where I am going.” 5 Thomas said to him, “Lord, we don’t know where you are going, so how can we know the way?” 6 Jesus answered, “I am the way and the truth and the life. No one comes to the Father except through me.

HYMN OF THE DAY                          “God Loved the World So that He Gave”
                                                                                                                      Hymn 391
v. 1-4 All, v. 5 Solo, v. 6 All

SERMON                                                                          2 Timothy 4:6-8 (NIV 84)
Fight the Good Fight

In the Name of the Father, Son and HS.  The word of our God that we would set our hearts to this day is the text of some of the last words that I had the opportunity to share with our dear loved one, Mike Van Deurzen.  The words come from 2 Timothy 4:6-8 “For I am already being poured out like a drink offering, and the time has come for my departure. 7I have fought the good fight, I have finished the race, I have kept the faith. 8Now there is in store for me the crown of righteousness, which the Lord, the righteous Judge, will award to me on that day—and not only to me, but also to all who have longed for his appearing.”  Those words were fitting for Mike to hear as he spent the last few days of his life in the here and now, and those words are just as fitting for us to hear, as we spend these days mourning the loss of our loved one and rejoicing that he is now at rest.

Mike Van Deurzen was a fighter. As Gina mentioned, not much in Mikey’s life came easy. Ever since the diagnosis of Cystic Fibrosis almost thirty years ago, Mike has been Fighting- fighting for breath, fighting for life. And yet, that fight didn’t get him down.  I have had the privilege of knowing Mike for the last ten years, and I can honestly stand before you and tell you that Mike was an awesome individual.  I spent a lot of time talking to Mike, either in the hospital room at UW for his treatments, up in the third floor suite at the Thiesfeldts, or in my office at church. Mike had this attitude about life that was absolutely incredible. In all of my talks with Mike, I don’t think I ever heard Mike complain. And that’s pretty incredible- because from an earthly perspective-Mike could have had a whole lot to complain about.

Mike was an individual who knew blessings, but he also knew difficulties. Mike’s life was not always that perfect bed of roses. And yet, he always seemed to have that upbeat attitude. I am convinced that one of the reasons why he had that attitude, the creative loving spirit, the giving heart-those things that the obituary mentioned-was all due to the fact that he knew that in Christ, he had everything. He knew what he was looking forward to. He knew all about the crown- that Christ had won for him.

In our sermon text for today we have the Apostle Paul looking forward to the very same thing that Mike was looking forward to: The Crown.  In this book of the Bible, we have the Apostle Paul writing to his young friend, Pastor Timothy. He is writing this letter towards the end of his earthly life.  He knows that soon, his time on this earth will end.  And so he writes this letter to help and encourage Pastor Timothy.  The time has come for my departure. 7I have fought the good fight, I have finished the race, I have kept the faith. This life isn’t easy.  Paul knew that. The Apostle Paul knew what it meant to deal with difficulties in life. He knew what hardships were all about.   

Mike knew difficulties in this life too.  He knew what it meant to fight the good fight, and to run the race.  Last Friday I was sitting with Mike and talking with him about this text in preparation for his funeral.  Mike knew that the fight that Paul is talking about here wasn’t a war with Cystic Fibrosis, it is a war against sin.  It’s a war against the world.  It’s a war against the devil.  Mike knew about that fight too. He knew that there were plenty of times when he lost that battle against sin. In fact really, that’s the real reason we are gathered here today. That’s the real reason why his 31 year old body is laid out in that casket. …it is not because of CF, but rather it is because Mike sinned. Because Mike Sinned-Mike died. And quite frankly because I have sinned, because you have sinned, we are going to share the exact same fate.  We too will die.

But friends the good news that Mike wanted you all to hear today was that, that [casket] isn’t the end of the story.  Mike didn’t lose the race! He didn’t lose the battle! He won! Mike knew that he had a Savior who paid for that sin. He had a Savior who was born of a woman, just like we are.  He had a Savior who grew up just like we do. He had a Savior who was tempted by the devil, just like we are. But this Savior was different. For this Savior never once listened to the devils lies, like we do. This Savior never once fell prey to the devil’s temptations, like we do.  And then this Savior suffered- far more than you or I or even Mike ever have had to suffer in this life. For Jesus bore every one of Mike’s sins, everyone of yours, everyone of mine on that cross.  And then our Savior- at the age of just 33, died. But he didn’t stay dead- no on that third day he rose again, to give us the confident hope that we can face the death of a 31 year old in a completely different way.

For Mike knew that his race was already won. For he knew that because Christ had won the victory for him-he could look forward to the prize at the end of the race. Just listen to hear what Mike is enjoying right now: 8Now there is in store for me the crown of righteousness, which the Lord, the righteous Judge, will award to me on that day—and not only to me, but also to all who have longed for his appearing.”  Mike is enjoying the crown not the CF.  The very Lord who called Mike to be his own when he Baptized him, is the very same Lord who kept him close to his heart through the means of grace. Mike knew that because he had Jesus’ life death and resurrection credited to his account, he could approach God’s throne of grace with confidence. He was at peace.

Mike had the confident hope of knowing where he was going. When I visited him last Friday, I asked him if there was anything he was afraid of. He looked at me, and he said-well I just want to be sure that my brothers can be my pall bearers and if they could wear their vests at church-is that gonna be OK? I said absolutely. He said-then there is this procession from the church to the cemetery-can they ride in that procession-it’s going to be really loud? I said-I can’t wait to hear it Mike. No problem. But that’s all the service-we can take care of that, but what about you-is there anything you are afraid of? Mike said, “I hope my mom is going to be OK after I’m gone.” I said, she has a great family and great friends-and an even better Lord that are all going to help her through this. But Mike what about you- is there anything you are afraid of-anything I can explain from the scriptures of what’s going to happen when you die. He said-No-I’m good-I got Jesus. He’s just going to come and get me.” I said, yes He is Mike, yes he is. Mike was one incredible guy.  

Mike knew that he had won the race. He may have lost the battle with Cystic Fibrosis-but he won the War when he got the crown and inherited heaven’s home.

Mike knew that Jesus had fought the good fight for him and as a result, he had won the war.  And it is just as important that you know that you too have won the war. It is just as important for you to know that Christ has won that crown for you. You need to know that because losing a loved one isn’t easy.  Oh sure, we can comfort ourselves by saying that Mike isn’t suffering anymore-and he isn’t.  We can comfort ourselves by saying that he isn’t struggling to catch his breath, and he is breathing easy. But the fact is, that there is still this void- this earthly separation that takes place when a loved one dies. But in the middle of our pain, we can be comforted with the same words that comforted Mike.  We know that we too have the crown to look forward to. We know that one day, we too are going to go before God’s judgment throne, and he is going to ask us the same question that he asked Mike this past Sunday, “Why in the world should I let you into my heaven?” We know that we are going to say the same thing that Mike did, we aren’t going to point to ourselves and our own works-because we are a bunch of sinful people, but instead we are simply going to point to Jesus’ life death and resurrection credited to our account. And God will look at us and say to us the same thing he told Mike, “Well done my good and faithful servant-enter the kingdom prepared for you!” Until that day comes, Keep your eyes focused on the prize- and keep Fighting the Good Fight! Amen.

I believe in God, the Father almighty, maker of heaven and earth.

I believe in Jesus Christ, his only Son, our Lord, who was conceived by the Holy Spirit, born of the virgin Mary, suffered under Pontius Pilate, was crucified, died, and was buried. He descended into hell. The third day he rose again from the dead. He ascended into heaven and is seated at the right hand of God the Father almighty. From there he will come to judge the living and the dead.

I believe in the Holy Spirit, the holy Christian Church, the communion of saints, the forgiveness of sins, the resurrection of the body, and the life everlasting. Amen.

M:        Almighty God, we praise you for the great company of saints who have finished their       lives in faith and now rest from their labors.  We remember especially our loved one, Mike Van Deurzen Jr., whom you have redeemed by the blood of your Son and received as your dear child through Holy Baptism. We thank you for giving him to us as a companion on our earthly pilgrimage.  In your compassion, comfort all who are sad in this hour.  Lord, in your mercy,

C:        Hear our prayer.

M:      We praise you for your love in Christ, which sustains us in life and death. In our    earthly sorrows, help us find strength in the fellowship of the church, joy in the forgiveness of sins, and hope in the resurrection to eternal life.  Lord, in your mercy,

C:        Hear our prayer.

M:        You do not leave us comfortless but strengthen and care for us through      your Word and sacrament.  You give us family, friends, and neighbors to help when there is loneliness             now and in the days to come.  Brighten our future with a firm trust in your promises and care.  Lord, in your mercy,

C:        Hear our prayer.

M:        Remove our fears, and make us bold to pray with confidence as our Savior has taught us:

C:        Our Father, who art in heaven, hallowed be thy name, thy kingdom come, thy will be done on earth as it is in heaven. Give us this day our daily bread; and forgive us our trespasses, as we forgive those who trespass against us; and lead us not into temptation, but deliver us from evil. For thine is the kingdom and the power and the glory forever and ever. Amen.

M:        The Lord bless you and keep you. 
            The Lord make his face shine on you and be gracious to you.
            The Lord look on you with favor and give you peace.

C:        Amen.

Because some of you have been asking:

Presiding Minister: Rev. Brett G. Naumann
Pastor Naumann Preaches at
Good Shepherd Lutheran Church
855 Martin Avenue, Fond du Lac
This is the church where we had Mike's visitation.
Organist: Mr. Dale Witte - WLA
Choir Director: Mr. Dale Witte - WLA

It was a beautiful service. I'm glad I took the time to post this today. Today was a rough day. I miss my Mikey. Sometimes you just gotta let it out I guess. 

Blessed are those who mourn . . .
Blessings to you!

Sunday, October 26, 2014


1 Peter 3:15 “Always be prepared to give an answer to everyone who asks you to give the reason for the hope that you have.”

Mike left this world four weeks ago this morning. On a Sunday. I am so confident in where Mike is.

Time of Grace 7/25/83 to 9/28/14

 When Mike was younger and before HIPPA we were asked many times if we would talk to CF families with newly diagnosed children. Mike always enjoyed this. He was always happy to share how he could swallow handfuls of pills. He would share that he did his therapy every day. It was easy to see that he was a happy child.

There was a time we were asked if we would talk to a family, but then the family really wasn’t ready. I remember that the couple who had this child (she was 3-5) was an older couple. They both had children from previous marriages and then together they had this precious little girl. Some of the older siblings had children of their own. They all came – visibly upset. The young girl seemed like she was doing really well, but this was a shock for the family.

When it came time to start the IV, the young girl was taken to a treatment room. This was standard practice. Children never had to worry that something would happen in their room. They were taken to a treatment room. The little girl started to cry and the mom (who had been waiting outside) grabbed the door to go in and found it locked. Her husband, knowing that she would not be able to handle the situation, locked her out. She began to bang on the treatment door. Mikey’s room was just across the hall. She finally stopped and composed herself. She saw me and came into our room, “Why aren’t you freaking out over this? Your son has CF!”

John 14:1 “Do not let your hearts be troubled. Trust in God; 
trust also in me.” (Jesus speaking to his disciples)

My beautiful boy
I don’t know how others might react to difficult situations. I only know what has always worked for me. Stand on the promises of God. It has never failed me. When I look to anything else for comfort, hope and answers, I am disappointed and feel alone. But when I look to God, I am held up.

The night before Mike passed away we had some trouble with his morphine pump. This was turned into a blessing because it brought Mary, the hospice nurse, to our home. She fixed the morphine pump and assured us that Mike was doing well. He had been up to go to the bathroom and even got on his computer and phone.

It was time for bed and having been told that we were at least a day or so away from Mike’s last moments (as best as anyone could tell), I decided that I needed to get some rest. Amy (God bless her) stayed in with Mike and the rest of us went to bed. I took half a sleeping pill so I would at least get a couple of hours of sleep.

If you have read any of my past blog posts then you know about Mikey’s plan. Well, despite my efforts to sleep and despite Mike’s will, God moved forward with his perfect plan.

I miss him
Early in the morning the batteries on the morphine pump started to go out setting off an alarm that woke all of us up. I came in to check on Mike and he was out. Even the irritating beeping IV didn’t rouse him. Amy was calling the hospice number to find out how to fix it. I asked her to make sure they would send someone. I didn’t want to lose the program and have to redo it, because I wouldn’t know how. I decided I would take a shower because I didn’t figure I would be able to go back to sleep. I anticipated that hospice would be coming back soon.

Now, I want you to know that I don’t startle easily. I think most people know that. I can maintain pretty well in a crisis situation. It was interesting that all of the happenings of the previous several days made me jumpy. I had just gotten out of the shower and was about to grab my bathrobe when a VERY loud bang, bang, bang came on the door. I RUSHED out the door and Amy said, “It’s Mike!”

I ran to his room down the hall. I think I heard Amy or someone say something about he had to get up to go to the bathroom. The door was pretty much closed. I opened it just as his father was finishing helping him adjust his pajama bottoms. Mike looked right at me and then fell backwards on the bed. Not knowing yet what was happening I grabbed a syringe of morphine and laid down next to him. He made a couple attempts at getting air - in small gasps. I started to reassure him that Jesus had done everything for him . . . Katie walked into the room past me and around to his head on the bed. I was on Mike’s right side. His father on his left. Mike picked up his head a bit and then turned it to the right and looked directly up and past my head. Jesus was there in the room to take him home. But Mike was still with us and I was puzzled as to why. And then I remembered . . . I told Mike I would put his hand in Jesus’ hand and so I reached down and took Mike’s hand. I looked back up at Mike and he never took another breath. He was at peace. He was with his Savior.

I don’t believe it was Mike holding back in those last few moments. I believe that Jesus gave me that last signal to let me know that he indeed was there to take Mike home and I could let him go. It was beautiful. I was so blessed to be in the room as my son was carried off to heaven. I am so confident in where Mike is right now. And this brings me such comfort when I miss him.

Hebrews 11:1 Now faith is being sure of what 
we hope for and certain of what we do not see.

I did not get to see what Mike saw. But my faith tells me I can be certain that heaven is real and that when we leave this world we will be carried to heaven by our Savior. It gives me hope. Hope for a future in heaven with my Savior. Hope that I will see Mike and Melinda and all those I love. Not because of anything I have or haven’t done but because I have a Savior who came and lived a perfect life for me and died and rose that I might live one day with him. I believe this with all my heart.
I am so confident he is in heaven.

I have my days that are difficult. I miss my Mikey. I do. But I know that this is a temporary thing. We are all asked to do hard stuff. So many people are asked to do things way harder than what I’ve had to. All I can do is continue to serve and glorify my God. I trust in him completely. Even to take away my pain. He does that with his promises of a perfect heaven when all this earthly stuff is finished. It brings me peace and joy and hope.

I hope it does for you too.
Blessings to you!

Saturday, October 25, 2014

It is me - Melinda

I ran into Melinda (literally) at a Christmas party for chronically ill kids at the Children’s hospital Mike was being seen at in Texas. She was scooting around in a wheelchair and we ran into each other as she spun around. She whispered something like, “bitch” under her breath and took off in the other direction. She left an impression. I asked around about her. This was back before HIPPA laws.

She was absolutely beautiful. She was 15 years old with long dark hair, fair complexion and a very spunky spirit. I was told she had Cystic Fibrosis. Mike wasn’t hospitalized as much back then but 2-3 times a year so I got to know Melinda because she was in quite a bit.

Melinda would tell me about how she didn’t like being in the hospital because there was no one at home to take care of her little brother when she was inpatient. She worried about her mother too. She needed to take care of her also. Melinda was the caretaker in the home. She never mentioned her father.

She was so sick. I wanted to motivate her. I adored her. I wanted her to get better. We would talk about treatments and things. One time she was particularly sick and she said to me, “Do you  . . . do chest PT . . . for your son?” She was having a hard time breathing and talking. I replied, “Oh, yes every day. At least two times a day. More when he is sick.” “Good,” she said, “because no one ever did it for me and now I am like this.” My heart broke. I started to do her chest PT when I was there to visit.

I never ran into her mother all the times I visited Melinda. I found out that her mother was a prostitute and things started to make sense. I really didn’t know much more than that because Melinda didn’t talk about her much. We talked about dreams that Melinda had and things she wanted to do. She wanted to learn to play piano. She liked music. A secret admirer gave her a keyboard for Christmas along with a warm jacket because she was worried about going home for a few days because it was so cold.

Teresa Ris and I would decorate her room for whatever holiday she would be spending in the hospital. I know we decorated for her sweet 16 and I think also for St. Patrick’s Day. She always enjoyed that so much. It seemed like I was always finding kids that needed help while Mikey was in the hospital. The women in my neighborhood were great about rallying resources to meet their needs or give them a little treat. I wondered if Lyn Prz and Teresa Ris would ever tire of my requests but they never did. Bless those women.

I remember the day I was pulled aside by a nurse and told that Melinda was in end-stage CF. I didn’t understand what that meant. She wasn’t going to get better I was told – she was nearing the end. I would go visit her every day after I took Mikey and Katie to school. The day came when I got a phone call that Melinda didn’t have much more time. I had 20 – 25 women at my house. We were talking about starting a service league in our area. I motioned for Teresa to come over and I told her what was happening. I said I had to go. Teresa took over and I left.

Melinda was struggling for every breath when I got there. It was heartbreaking. She was sleeping/not conscious. When she woke up she told me she had a bad headache. I looked on her table and I saw a pile of pills. I called someone in and they said she hadn’t taken them. I insisted they crush them and put them in her feeding tube. Shortly after that a woman appeared with a man. In short order with all the wailing I realized it was Melinda’s mother. I didn’t know who the large man with her was but he made me nervous. He just sat in a chair in the corner and didn’t say a word.

I left that day and came back the next day. By then Melinda was struggling even harder. The mother and the man were still there. Melinda was in and out of consciousness and it was hard to hear and understand her when she would talk. When she would wake up and try to speak her mother would start wailing and yelling and telling Melinda to speak up. Her (Melinda’s mom) I love yous were heartfelt and often. It was obvious Melinda was trying to communicate something. She would point at me no matter where I was in the room. I knew she wanted to talk to me and I so desperately wanted to talk to her. I came closer. This mother was so distraught. She wouldn’t budge from Melinda’s side. I was sitting on Melinda’s right side and she could barely raise her finger and she pointed at me again. With great effort she raised her chest and got enough air to expel, “I yove yew”. Maybe it was just wishful thinking but I believe that was for me but as I moved closer her mother grabbed her and said, “Oh, baby, I love you too . . .”

I didn’t want to make a scene. The man scared me. I wanted to take nothing away from this distraught mother.

I said nothing. NOTHING

And that is why I am telling you this story.

My heart was bursting in pain. I loved Melinda and I never told her. I was trying not to cross any lines with her (these are the excuses I used to console myself). I treated her like my own daughter but she wasn’t mine. I would go visit her and we talked about everything of secondary importance but not what was most important. I never witnessed to her verbally. I never told her I loved her.

I left the hospital shortly after that, as it was time to go to school and pick up Mike and Katie. I never saw Melinda alive again. There was a short obituary in the paper. It gave the address of the funeral home and hours of visitation. It also listed the church where her funeral service would be held the day after the visitation. I got in my car planning to be at the visitation when it opened. I got horribly lost in Ft. Worth. It took me an extra hour and a half to get there. I found the room that her visitation was said to be in. The room was empty. But at the front of the room was a casket and there was Melinda – just like I met her – all alone.

I looked around and couldn’t even find a funeral director. This place was desolate. I walked over to Melinda. She looked so peaceful and as beautiful as ever. She had on a beautiful red velvet dress that was about 2-3 sizes too small. My heart was broken. I was sick with thoughts of should haves. I told her I loved her and said good-bye.

The next day I went to the funeral. You can’t even imagine my relief to see the hospital chaplain there conducting a beautiful service in coordination with another pastor. Melinda had picked out all the hymns and Bible verses herself. I was so relieved. Melinda was in heaven and I know I will see her again.

So . . .It is me that I spoke about in my last post. I know what it is like to love someone and hold back telling them until it is too late. IT HURTS. I have never regretted telling someone I love them. There have been times when telling someone that has led to misunderstandings but I have no regrets. But each time I have held back - the regret is unsettling. I am very fortunate that I will get to see Melinda again and when I do I will grab her in my arms and give her the biggest hug ever and tell her how much I LOVE HER!

There is another reason I share this story. Part of this is to help spread CF awareness. Shortly before Mike passed away he told his sister, “I didn’t think it would be like this. I thought they would find a cure by now.”

Melinda passed away at 16 years old. My son passed away at 31. Please help us find a cure so no one else has to endure this dreadful disease. We are getting closer. Thank you for your help. Thank you to all those who continue this fight against Cystic Fibrosis. So much progress has been made. Donations to CF help bring more tomorrows for these kids.
I miss my little Mikey. I am healing. I hope to post more about that tomorrow.
Blessings to you! Love it forward - while it is day :)

Sunday, October 19, 2014

We Never Whispered Death Away

Mike and I have always talked about death openly. I decided a long time ago that we would not whisper about death at our house. It would have been hard to. We have lost many friends with CF along the way. The first one whom Mike was close to passed when Mike was only about 5.
Go here to read about the first time Mike and I talked about CF and dying.

I will recap part of that here.
I was folding clothes and putting them away in Mike’s dresser drawers. It was just an ordinary day. Mike was in no particular distress. He was 7 years old. I will never forget this day. Mike was sitting on his bed fidgeting with something in his hands and he said, “Mom, am I going to die from CF?” I felt the familiar stab of pain in my chest, my head scrambled to find the words… I had thought about this before….even anticipated it to some degree….but not now, not yet, my son wasn’t really thinking that this fatal disease could actually kill him was he?? Or was he? Not missing a beat I continued to place clothes in his drawer and appear to be unscathed by his question (I learned this trick from my Aunt Cheryl). “Well, I don’t know Mike,” I began to reply, “none of us really knows how or when we’re going to die. There are lots of ways people die. Some people die from cancer, some people die in car accidents and some people die from CF. What do you think, Mike?” By now I had stopped what I was doing and was sitting next to him on the bed. “Well," Mike began apprehensively, "I don’ know but sometimes I just think that I’m gonna, choke and choke and choke like this (made these horrible gasping sounds) until I just can’t breathe anymore and then I die.” How did he know at 7?

Over the years I have always promised Mike that I would be completely honest with him about the progression of his disease. Even though his learning disabilities created challenges in relaying information, he knew I would never withhold anything. Once he was an adult I was very careful as to when to intervene and when to back away. I know I wasn’t perfect and never had the expectation that I could be.
I was there for pretty much every nasty procedure Mike had to endure. I don’t know how Mike got through them all. The strength he had was truly amazing. His guardian angel was definitely on OT most of the time. God gave me strength too. There was one particular time when I had a really hard time.

Mike would get bowel obstructions and they were nasty – he was about 10 years old. Back in the day the thought was that you shouldn’t give CFers any pain meds because that slowed down their breathing and their gut. It was a total obstruction and Mike had eaten a ton of food (as all CF kids need to) thinking that the initial pain was just the normal constant hunger.
The treatment was to put a rather large tube down his nose and into his stomach to suck some of the stuff out and then pump in the golytley. On a normal kid putting that tube down would be hard enough but with Mike it took on new levels of difficult. Mike had horrible polyps in his sinuses. They tried to put the tube down a couple times without success. All without pain meds. The thought of this makes me cringe still today. He was already in so much pain from the obstruction that he was groaning/screaming out in pain. This is the only time he ever vocalized any discomfort in all the years of CF and for him to do THAT you knew the pain was excruciating. Having to sit up and tilt his head back while his stomach throbbed was bad enough. Then he had to endure the tube being shoved down his nose through the polyps, past his gag reflex and into his tummy. The tube was so large they were having a hard time getting it past the back of his throat. When they went to pull the tube back out on the third or fourth try all this stuff shot out along with blood. I couldn’t hold back a few tears. Mikey looked up at me with this shocked look and said, "Mom are you crying or did some of that stuff shoot you in the eye?!"

I could hear in his voice and see in his eye he was looking at me to see if he was going to be OK. He was scared when he thought I was scared or upset. I said, “Yes, that really got me in the face, Mikey" (and it had so I didn’t lie). He immediately relaxed. You could physically see the difference.

James 1 :12 Blessed is the man who perseveres under trial, because when he has
stood the test he will receive the crown of life which God has promised to those who love him.

So that was the role I took on as his caregiver. Mike was such a brave kid. He asked for a couple of things. 1) To always be told the truth. 2) No surprises. If something was going to be painful then tell him up front. 3) Tell him how long it would take. No surprises. If any of these things didn’t happen he was not a happy camper. If you told him, well they need to peel off all your skin with a tweezers and it is going to take 4 ½ hours and it is going to hurt like heck for two weeks until it grows back because doing that will help you get better, then if that is what truly happened then he would endure it. Totally random over the top example but you get my drift. The kid was tough.
During Mike’s final round this role of mine took on a whole new level of difficult.

When Mike went in to the hospital this last time he was really sick. Things were different. He was reluctant to go back. He said, “There isn’t anything they can do.” I knew to respect him. He waited - trying to get better without IV intervention for a few more days. By the time he went in (which was only days since he had last been in) he was pretty sick. I went back and forth to the hospital to check on him and talk with doctors. On Sunday he had conversations with his father and me about his funeral and being buried. I wrote the blog post about the final round to keep people up to date and also because I knew Mike needed to understand fully where things were.
I left that night because he wanted his girlfriend Amy to stay there with him. I went to work the next morning to let my boss know I was going to need some time off and head back to Madison. Before I could get in to see my boss I got a phone call from Brooke. She had a hard time waking him up and did the CO2 level and it was over 80. I asked her how long she thought he had and she told me 48 hours if things didn't change. I called Big Mike and headed back to Madison.

Mike was sleeping on his bipap when I got there and I woke him up. I told him what Brooke had told me. He starred into my eyes and pushed his finger downward meaning now? I shook my head yes. He looked down for a moment and nodded his head. Then he picked up his phone and started texting. Again, the events of that Monday are for another blog post at another time.

Katie came, Big Mike came, Van Deurzen’s came, Amy came back, the Brothers came, it was a very emotional day. Men and women weeping over and with Mike as they came to say good-bye. All except me. I didn’t want to smother Mike. The word mother does not start with an s. I gave people space so they could be alone with Mike. Paul and the boys waited like everyone else to get their chance to get in to see Mike.

But at the end of the day, when he was really tired, he could barely raise his arm and he motioned for me to come over to him. I had to get really close because I could barely hear him he was so quiet. I thought finally, I will get my moment with Mike. I put my ear next to his mouth and he said, “Mom, if I take the pain medicine am I going to die?” I reassured him, “No Mike. It will just make you more comfortable.” He nodded his head and continued, “Mom, if I go to sleep am I going to wake back up?” “Absolutely!” I reassured him. He said, “Oh, OK, thanks mom. Love you.”
That is when I knew I wouldn’t get my “moment” with Mike. I was OK with that. Mike and I had shared many moments. He knew how I felt about him. I knew I had said everything I needed to say and he knew how I felt. I know how much Mike loved me too. I had resolved myself to the fact that if I never got another "moment" I would be OK. If I wasn't there at the end God would take care of Mikey. I would be whatever he needed me to be. He drifted off into sleep.

We all got plenty of time to talk to Mikey over the next few days. He made his decision to come home and things took on an even deeper level of difficult.
I had researched Hospice months earlier when Mike shared with me his wishes to die at home. I wanted to be prepared. I couldn’t find a hospice who had ever dealt with a CFer. That concerned me. I knew the level of care it would take to keep Mike comfortable and I knew that would fall on my shoulders. Hospice at home is not what most people think it is. Another post for another day.

I was thankful I didn’t have to do this alone. Mike’s father stayed with me every step of the way. My hubby Paul opened his arms and his home to all. The Van Deurzens, Milners and Thiesfeldts and the Brothers all worked together.
I was the nurse in charge of meds. Big Mike was a huge comfort to Mikey. He would also help Mikey move from his room to the bathroom and anything else he needed. He also got to be his Dad and Mikey needed that.

It wasn’t easy keeping track of meds while a million other things were going on in my house and my young boys were there. Thankfully, Gail and Fred came and took David. I was exhausted and couldn’t concentrate beyond Mikey and meds. Richard stayed at a friend’s house. It was homecoming week of his freshman year.
When Mike would fall asleep there was always the question of whether or not he would wake up again. He would look at me after the nurse would leave and ask me if anything changed. How much more time. Was he still OK.  I would reassure him and be honest.

At one point as he was waking up his father was sitting on his left side and I was sitting on his right side. I said I love you Mike and his father said, I love you buddy and I continued, so, so much. He popped his eyes open, “Why are you talking like that! Am I dying?!!”
OW, now I couldn’t even say I love you without him getting anxious. His friends, his father – everyone else could come in and talk and laugh and weep and say a million I love yous and he was fine. But if I even looked cross eyed at him he was agitated.

I laughed and replied to him, “Well, because it is my turn! Everyone else gets to come in and talk to you and now it is my turn!” He relaxed.
Sometime Friday a nurse came and told me she thought it wouldn’t be very long. I told Mike and he got understandably anxious. There was medicine to help him with that. I knew the role I needed to play and it was difficult. He and Brooke and I had a plan that he would not be tormented in pain during his final hours. Yet, he didn’t want to be all foggy either. I knew at some point CO2 levels would rise and he wouldn’t wake up. I knew that the horrible coughing was causing pain.
Mike was up and about answering Facebook messages and texts. That made him relaxed. Amy stayed with him and read things to him. When he would wake up no matter what time of night Brian, Art, Scott or Bear or one of the other brothers or friends would come over to talk to him. He was content when he knew people were waiting to comfort him. (Love modern technology that allows a quick call or text to get people at your door so quickly Mike thought they were in the backyard waiting ;) – sometimes they were back there and sometimes they were just a text message away).

I was concerned that if Mike was in his last few hours that his focus needed to be spiritual. I watched him while he slept and prayed every minute. Thousands prayed, Pastors came, his Aunts Sue and Kathy would pray the Rosary over him as well. When he would wake up I would say, “Well, you are sleepy. You took a little nap.” I would ask if he needed anything for pain and his dad would be there too. I told him, “Mike, everything you need to do here is done. You need to focus on the cross now. Don’t think about anything you have done. Jesus did it all for you. You can just rest now Mikey, everything is done.” And Mike would fall back to sleep. Everyone continued to pray. People would come and go and sit next to Mike and pray.

He slept soundly for several hours. I didn’t think he would ever wake up again and be conscious. But he did. He woke up and I repeated what I said before. I wasn’t sure how awake he would get. Again, not knowing where his CO2 levels were there was always the question as to how clear his head would be. Well it was clear and he said, “Stop telling me to rest. I don’t want to sleep. What time is it? What day is it?” He was agitated.
I have been bedside in this circumstance before. I knew that level of agitation. I knew the coming in and out of deep sleep. Coherent one minute and out the next. Between the stress of the situation, the drugs and the fluctuating CO2 levels – there is no telling what could happen. Mike was distraught and he was going to take it out on me. This became the hardest moment of my life. I wanted to just suck it up and take it but I am human. I realized that if I just let this go he may pass with a rift between us. I couldn’t bare it. I asked everyone to leave the room.

I said, “Mike, I know this is hard. I can’t imagine what you are going through right now. I am here trying to fulfill every request you have. I am also trying to be your nurse and figure out how best to treat your pain and anxiety. I know if you were in Madison and I was your nurse you would have me fired because I suck at this." I paused and he kind of chuckled. I continued, “I’m just trying to do the best I can because I love you. But Mike, if you need me to find someone else to do this I will do that. I will teach someone else as quickly as I can. I want to do whatever it is that you need to make you comfortable and if I make you uncomfortable then we can change this up.” “No! no, I'm sorry Mom.” “I’m just so confused” he said as he grabbed his head because he had another really bad headache. “I just thought I had more time,” and he hung his head and I held him. “I know Mike, I know...” In a way that was our moment. The only moment I received that I got to step out of the role of being his nurse, the grim reaper and counselor and just be his mom. I am so thankful that I had that moment. God knew we both needed it.
Mikey was relaxed as long as his Dad and I were there and there were people coming and going and text messages to be answered and Pastors giving him reminders of God's promises. So that is how it went. Mary a new hospice nurse came a little later. She was such a blessing.  From then on we told him he was doing great and he had more time. At this point only God truly knew his timing.

So it was a blessing for us that we never whispered about death. If we had we would have missed out on all of these opportunities and blessings that we received that helped Mike pass from this life to eternal life. I am thankful that I have taken the opportunities to live life while thinking about mortality. It made the conversations we had at the end flow freely. Mike was able to tell us what he wanted in advance and we were able to carry those out as best we could.

Many times I see people wait until the very last second to say there I love yous and good-byes. They want to make sure that it is really the final moment before they say them. As if to say them sooner will somehow not have the same meaning or will have the wrong focus. That telling someone how you feel about them or how much you will miss them takes away their hope. I don’t know if that is true. I’m sure it could in some circumstances. I’m sure it is true if you have never talked about these things and then wait until the final round to start talking about them. I guess what I am saying is Mike lived many of his days as if they were his last. He thought about his death. He thought about what others would remember or not remember, what kind of an impact he would make and he talked about it.  He wrote about it also. I am finding those notes from Mike now and I will share some of them with you in time.

For me, writing about what I experienced is helping me heal. I also want to keep these memories for my young boys to read when they are older. They may go through something similar and learn from this experience. I learned so much from watching my mom go through a similar experience when my brother passed away. I am not writing an all-encompassing journal of events that happened. I can only write from my perspective because I can only tell my story. To try and say what Mikey or Katie or Big Mike were thinking or feeling during all of this would not be my place. But I also never want to diminish the impact of how much Mikey needed them and the important role they played during his final round. Mike needed everyone that showed up and/or prayed for him. I am so thankful God sent so many people to help us get through all of this.

I also write to continue the fight that Mikey started. The fight against Cystic Fibrosis. Through sharing pieces of his story I hope to share CF awareness with others. This is not just an insignificant disease that makes people die young. There is so much unseen suffering that is endured on a daily basis. Like most CFers we hid most of it. The silence can be deafening. I will continue to speak in pursuit of a cure.

I am very comforted by the words of encouragement I have received from many of you. I just reread Uncle Buck’s message to me. Thank you for your kind words. There was a man, I think he was a brother that stopped me shortly before I left the luncheon after Mike’s funeral. He said I was Mike’s rock and talked to me. I wish I could remember his words. This brain fog during stress like this creates significant lapses at times. Thank you to everyone who is sharing their pieces of Mikey with me now. It was so hard to carry out the role I was asked to carry.

Momsters, this role I played that I wrote about today is just that, my role. It was tough. I know each of you have your own unique role according to your situation. My role was what Mike and I needed. You will carry out your role perfectly, according to God’s plan. Trust in Him. He will see you through your journey. He will give you strength. On this side of CF and on the other side also. It is my prayer that your other side of CF will be after a cure is found and there is no more CF. Not the side of CF I am now on. God bless your journey.

My girlfriend Amy shared this with me:
"You die on one day," a hospice chaplain said, "During one moment of one day. All the rest is living!"

Love it forward. Tell someone how much they mean to you today. Send that note or card that tells someone special how much you care. Today, while you are living this life. Love, love, love.

Blessings to you!

Wednesday, October 15, 2014

Never Alone

The Bible tells us that we never have to be alone.

Joshua 1:5 No one will be able to stand against you all the days of your life. As I was with Moses, so I will be with you; I will never leave you nor forsake you.

I love this passage in scripture. It is taken from passages where God is telling Joshua that he will lead an army into the promised land. He tells him "No one will be able to stand against you!" He tells Joshua before he even goes to war, that he will come out of it unharmed. He will win the victory. I'm sure Joshua was still scared at times. I'm sure what he had to do was still difficult. He still had to go forward and fight. But I'm sure in the back of his head was always the promise God gave him . . .that no one will be able to stand against him and he would never be alone. Joshua would be the one to remain standing. Do you think it made Joshua live and fight differently?

Mike knew that same promise. Whenever I asked him, "Mike, if you died tonight, what would happen to you?"

Looks at me strangely - "Well, I'd go to heaven," he says very confidently but annoyed (Moms can be annoying like that - when we ask the same question several times over a period of time).

Mom: "Why will you get to go to heaven?"

Mike: In a tone like he is saying, well, daaahhhh mom, he says, "Because Jesus died for my sins." And then I would get a big smile on my face. Yep, never a second thought.

Just a few verses later in Joshua 1:9 "Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”

I can remember a time when Katie and Mike were about 4 and 5 years old. They would fight to get to sit in the front seat next to mom. No car seats back then. One day while Mike was sulking in the back seat because Katie got to the front seat first, Katie turned to him and said, "Don't worry Mikey! You're not alone back there, Jesus is with you!" Yep, my kids knew they were never alone. They had heard these Bible stories since they were infants.

As Pastor Naumann assured us in the sermon at Mike's funeral:

Mike had the confident hope of knowing where he was going. When I visited him last Friday, I asked him if there was anything he was afraid of. He looked at me, and he said-well I just want to be sure that my brothers can be my pall bearers and if they could wear their vests at church-is that gonna be OK? I said absolutely. He said-then there is this procession from the church to the cemetery-can they ride in that procession-it’s going to be really loud? I said-I can’t wait to hear it Mike. No problem. But that’s all the service-we can take care of that, but what about you-is there anything you are afraid of? Mike said, “I hope my mom is going to be OK after I’m gone.” I said, she has a great family and great friends-and an even better Lord that are all going to help her get through this. But Mike what about you- is there anything you are afraid of-anything I can explain from the scriptures of what’s going to happen when you die. He said-No-I’m good-I got Jesus. He’s just going to come and get me.” I said, yes He is Mike, yes he is. Mike was one incredible guy.

Mike knew that he had won the race. He may have lost the battle with Cystic Fibrosis-but he won the War when he got the crown and inherited heaven’s home.

Mike didn't like being alone for certain things. He let you know it. He didn't want to be alone for surgeries - he had too many to count. Once I didn't go down for something that was supposed to be routine and of course everything that could go wrong did go wrong. That is another blog post for another day.

He didn't mind being in the hospital alone sometimes. Many of the staff became like family to him. He especially liked it when friends and family came to visit.

But there were times when he would request to be alone. Too tired to communicate or too peopled out and just needed down time. He'd let you know.

Before Mike passed away he requested to not be left alone until he was buried. Many people helped to honor this request of Mike's. From the moment he sent this SOS text to his brother Dog:

It reads: Please come to the UW Hospital. I need you brother.

Within hours there would be so many people there to see Mikey that the hospital would be talking about it for days. Not just because most of the people who worked there knew Mike, but because of the heartfelt outpouring of love that we all were blessed to witness. Van Deurzens, Thiesfeldts, Kratzs, Milners, Brothers, dancers, friends and many, many hospital staff members lined up to support Mike during his final tell him how much he meant to them and to say good-bye. They held up Mike's arms until Jesus came. The events of that Monday are for a blog post on another day.

Within minutes after Mike passed, his Brothers came to fulfill their promise. They promised Mike he would not be alone until he was buried.

Mike went from his father and me to the hands of his first cousin Derek Van Deurzen.

Derek is a Funeral Director at Verkuilen Funeral Home in Little Chute. He had the opportunity to speak with Mike the week before and knew exactly what Mike wanted. He came and with the Brothers, lovingly carried Mike out of our home.

With all the professionalism of someone owning their own funeral home (he will own one soon), Derek took care of Mike.

With all the love that only a first cousin can give, he took care of Mike.

I don't know how he did it, but he did. I can't even imagine how difficult this was for him. He was very close to Mike.

And then Mike left.

But not alone.

The Brothers went too. They never left him. Derek was there by day and the Brothers were there by night...until he was buried up in Little Chute five days later. To keep a promise. Because promises are important.

Mike wasn't alone. He was up in heaven having a great time dancing and singing and praising God for keeping all His promises. And down here on earth Derek and Mike's Brothers from the THMC were busy keeping their promises too.

God is so good.

Some days I look back at all of this and it is hard to be sad.

I am so blessed.

Thank you God for keeping all your promises. It makes my heart happy. It gives me hope. I have joy.

I hope you all do too.

Deuteronomy 31:6 "Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you nor forsake you.” 

Blessings to you.