It was a tough day Momsters

I guess some days will be like that. . . tougher than others

For no apparent reason. . .

I went to church and it was wonderful. Pat S is always so kind and supportive. Bless her.

I miss Mike.

I thought about how he always coped. I got busy. Stayed on task.

My number one coping mechanism through all of this has been and is thankfulness. Thinking about things I'm thankful for and writing them down. I still struggled.

Went into work.

Nothing helped.

Just a tough day . . .

Psalm 23 came to me.

Yea, though I walk through the valley of the shadow of death, I shall fear no evil. . .
Thy rod and thy staff they comfort me . . .

I started to feel comforted. I could imagine what my Savior would say to me. . .

Gina, you didn't trust me. I told you I would work all this out.

I know, I know, God.

You worried and you didn't need to.

I know, I know, God. You were right.

Instead of trusting in Me you trusted in other things.

Yea, that was really dumb, God.

Do you trust me now? Do you trust me to take that pain?

You know only I can take away that kind of pain, don't you?

Yes, I do. I've seen you do it before God.

And, hey God, thanks for gently nudging me with your rod and your

staff and not beating me over the head with it. I know I would deserve it.

That's what went through my head. Along with forgiveness. I know I am forgiven.
That's a cool God thing.

And then I thought about Mike again and how he always coped. I did the phone a friend like he did.

I feel so much better tonight.

And now I will leave you with something that is sure to make you smile. It does me :)

If you don't want to listen to the whole thing scroll to the 2:30 mark :)

My little David . . .singing for his brother, one last time.
God is so good! Blessings to you.

Mikey Comes Home

My sister was over this past weekend. She had been in Florida to see her son Gary (the Green Beret) who recently returned home from serving in South America when all this happened with Mikey. It was hard for her to be so far away and try and follow what was going on. I know she prayed constantly. Thankfully, she made it home in time to say good-bye to Mike. 

She was helping me collect addresses for my thank you notes and as we were talking she made a comment about the Brother that brought Mike home from the hospital. I don't remember how she said it but I remember thinking something was odd. She asked something like how did he hold on. I said well he's trained to know how to hold someone sick. Terri said, "Yes, but all that way . . ." I looked at her funny and then realized that she thought Mike came home on the back of a motorcycle! LOL

So to alleviate any rumors ;) I thought I would tell you all how this came about.

The story of how we got to the point that Mike requested to come home is a whole other blog post for another day. We will start here with the decision that Mike had made to come home to die.

Grandma comes to say good-bye to Mikey.

Brooke, his NP knew Mike's wishes. She had the day off but arranged to get everything moving as quickly as possible. Timing was very important.

To fully understand what happened you need to know that Mike has spent years of his life inpatient at UW Madison. YEARS. I stopped counting after 5 full years of inpatient status.

Playing cards with his favorite nurse for the very last time. They both had a good cry
together and then they did what they always did - they lived fully.

I can honestly say that probably about 95% or better of the people Mike came in contact with were very supportive and loving of him. But there was that 5%. Some of them down right cruel. It happens. Mean people exist. There were also times when Mike had trouble understanding where a doctor or nurse was coming from and that caused friction. He wasn't perfect either. He dealt with it amazingly well and like I said, 95% of the time there was no issue.

It made me appreciate the good - the doctors and nurses who treated Mike with dignity and respect. God bless these men and women. Thankfully, they were all on board during Mike's final round.

Mike had incredible coping mechanisms - he played guitar to ease the tension

The morning after Mike made his decision, he was sitting up and doing what he always does, planning his day and living it fully. When I asked him how he was doing his reply was, "Well, I woke up today so I may as well finish it out." LOL, that kid!

Mary came in mid morning and told him that she was trying really hard to arrange his trip home but that they were having trouble finding a way to get him home. She said, "Mike, it may take us another day to work this all out. You see, you need a lot of oxygen and then there is the bipap. We need to find a hospice that will accept this and then a transport crew that can deal with getting you home. We don't want anything to happen while you make the hour and a half trip." Mary was very compassionate knowing that Mike had the expectation that he would be home that day.

It was tough to see his IV slowed to a maintenance dose. No more antibiotics.
Just enough to keep his line from clotting while they waited for heparin to unhook Mike from the pole.

Mike looked over at her and in his weak voice said, "Oh, well my brother can take me home." Mary looked at me and I looked at Mary and I'm sure we were both thinking the same thing - he obviously wasn't understanding or didn't hear her correctly. But with all the dignity and respect of a saint Mary replied, "Well, Mike we need to find someone with an XXX/??certification to be able to release you."

Without missing a beat Mike said, "Yeah, my brother can do helicopters and stuff so he's good" and then he picked up his phone to try and text his brother. With wide eyes Mary said, "Mike, do you know the name of the company he works for?" Mike said, "Ahhh, Life something . . . it's in Waupun."

Mary left. It wasn't that much later and I believe it was Mary again who came back and told him, "Mike, we contacted Lifestar and your brother Shannon (Radar) is working today. He has to bring someone to Madison so we are checking to see if he can take you home when he is finished." 

Things were pretty crazy. I had lists of things that had to be done so I was busy calling to get our house ready and things delivered. Katie left to go help get the house ready. My girlfriend Gail came in an instant from Neenah. Paul was home rearranging furniture and almost blew out his back.

I was waiting to get prescriptions. Once I got them in my hand I left UW Madison for the very last time as the mother of a patient. It was surreal. Mike's father (Big Mike), Uncle Bob and Mikey's girlfriend Amy stayed to follow with Mikey. Traffic was awful. In 31 years I had never come to a complete stop and had to wait like I did that late afternoon. I thought about Mike in an ambulance. Would they get stuck? Would they have enough oxygen? Was Radar going to be able to get him? Would it be a stranger? Would Mike make it home?


Brothers

I got home about 30 minutes before Mike. He arrived and they brought him out on a stretcher. They wheeled him up to the steps. Yes, STEPS. Yikes we have a bunch of them. This man bent over and helped Mike up and as he turned I said, "Radar! It IS you! You made it! I didn't recognize you without your vest!" He just smiled and stayed on his task of gently carrying his brother into his home.

I am my brother's keeper!

Carrying out the request of his brother to die peacefully at home. Not at a hospital.

Not on the way in an ambulance.

At home, surrounded by the people he loves.

Because brothers do stuff like that for each other.

Radar, Mike's brother, is a Critical Care Paramedic with flight endorsement. God bless him!

From the moment Mike made his decision to come home to die in peace, until he was buried in the ground a week and a half later, Mike was continually surrounded by people he loves. Never left alone - per his request. Never in the hands of a stranger.

Proverbs 18:24 "A man of many companions may come to ruin, but there is a friend who sticks closer than a brother."

And that my friends is how Mike's final request to come home was granted. God bless each and every one of you who helped make this possible. All the people mentioned in this post and all the people who prayed.

Blessings to each and every one of you!

Love, love, love.

Modern Technology

Hi everyone,

So much to type, so little time.

I went back to work this week. It feels good to be back. I also wish I had more time. Life is always a balance.

I am still experiencing so many blessings. They just keep coming. I want to share them all with all of you. You have helped our family so much. All in time.

I am working on my thank yous. I know all the etiquette books say to let people help you . . .

Of course, I wanted to make my own.

Of course, I want to write them myself. I wish I could send you each a personal letter. I know I can't right now. But I can tell you the stories of how you and others have blessed us, by writing about them on this blog. I am still in awe of how God has worked through all of this. We are so blessed.

Momsters, I don't know what to say . . . I can not allow myself to wallow. When I get sad because I miss my Mikey I immediately think about what he is experiencing right now and my heart feels joy. I have such confidence in where Mike is and who he is with. I feel so honored to have a child in heaven. It feels like an accomplishment but I know it has nothing to do with me. God did this all and allowed me to be a part of it.

At work today I noticed that my phone was not on my desk. My boss allowed me to keep my phone with me so Mike could get a hold of me when he needed me. I took my phone out and looked at it. I realized I still had voicemails from Mikey. When I got home I Googled how to get them off my phone and keep them. I love the internet and modern technology.

I found a voicemail Mike sent me on my birthday. I was able to record it onto my computer through a free program called Audacity. I love hearing Mike's voice telling me happy birthday and saying I love you. I will treasure that always. If any of you have voicemails from Mike I can help you get them recorded if you would like to keep them.

 

I am thankful I am a bit of a techno geeky granny :)

Then Bear came over and he gave me this :

Bear took a screen shot of his text with Mike when he came home from the hospital for the last time. Then he texted it to me and I figured out how to get it to my computer. Whew, that was a lot of figuring stuff out for an old grandma!! lol

If any of the brothers can take screen shots like the one above I would love for you to text them to me. Thanks for sharing your pieces of Mike!

Thank you Bear and the THMC brothers. What you did tonight lifted such an incredible burden from our family. Another blessing that I will tell you all about soon.

So blessed by this HUGE family I have.

Keep loving it forward people - LOVE IT FORWARD!!

Blessings to you!

Forgiveness

Chief of sinners though I be,

Jesus shed his blood for me,

Died that I might live on high,

Lives that I might never die.

As the branch is to the vine,

I am his and he is mine!

I'm a sinner.
Mike was a sinner too.

Mike was a very loving kid. He had a big heart. Sometimes that worked against him in that he was taken advantage of by others at times.

I hope you don't mind if I share a couple of stories with you.

When Mike was in grade school he struggled. Between the learning disabilities and CF he had a lot on his plate. But he never wanted to give up. We hired lots of tutors for him. He had a speech language pathologist who came to the school everyday to work with him. He adored Debbie. He also had another tutor who came everyday to help him with his other academic classes. He literally worked around the clock with homework and breathing treatments. The doctors were concerned and noted in his chart that he would allow "cruel" schedules in an earnest effort to be like other kids. So he would only get to be with his classmates for religion, phy. ed., art, recess and lunch.

Folks waiting to see Mike the day before he passed.

One day on the playground three boys attacked Mike. Two held him down while the other one punched him in the stomach. They told him that was because he always got special treatment and got "out" of doing classwork. Of course, Mike didn't come home and tell me about this. I found him holding his side before bed that night and saw the mark on his tummy before he fessed up.

I said a prayer of thanksgiving that night. I was thankful that Mike was not babied by his classmates. I knew in a way that this meant that they viewed Mike like any other kid - just one that they decided was getting out of some work. In essence this is what Mike had wanted. To be just like everyone else.

Why do I tell you this story?

I think perhaps many of us have been those three boys on the playground. There were times when I pushed Mike hard when I should have been more loving and understanding - when I should have "listened" to what he was trying to tell me and didn't.

I think right now there may be others who are struggling with similar issues:

I wish I would have gone to see him more when he was in the hospital.
I wish I would have known that your family was struggling.
I wish I would have said I love you to Mike one more time.
I wish I would have sent him a card when he was in the hospital.
I wish I hadn't accused him of not trying hard enough.
I wish I would have understood how hard he was trying and not compared him to others.
I wish I had believed him when he said it wasn't his fault.
Maybe I pushed him too hard . . . I was only trying to be supportive. . .

More folks patiently waiting.

I want to tell you another story.

The Bible tells us about Joseph. He was one of 12 sons of Jacob. He was Jacob's favorite and his brothers resented it. So much so that they sold Joseph into slavery and told their father he had been killed by wild animals.

Years passed and Joseph was imprisoned for being wrongly accused of a crime while in slavery. While in prison Joseph continued to do good and won favor from his peers and captors. Even after doing nothing wrong to deserve any of this. Eventually, a great famine came upon the land and Joseph, being lead by God, prepared the country ahead of time and saved many lives. His brothers came looking for food and found their brother. In fear for what they had done wrong they worried Joseph would retaliate. But instead Joseph told them, "Don't be afraid. Am I in the place of God? You intended to harm me, but God intended it for good to accomplish what is now being done . . ." Genesis 50:19-20.

My friends there is forgiveness.
God worked everything that happened in Mike's life for his good.
Period.

Folks helping out in the kitchen while I was with Mike - bless you!

I have been there and I know I am forgiven. Don't let the tempter take away your peace.

Momsters, can you thank God even for the heartaches? Do you trust him enough to know he is working all this out for you and your child's good?

1 Thessalonians 5:16 Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus.

Romans 8:28 And we know that in all things God works for the good of those who love him, who have been called according to his purpose.

Yesterday was a really tough day. I put one foot in front of the other. I prayed. I thought about the other things God is asking me to do in my life.
He still wants me to be a wife.
He still wants me to be a mother.
He still wants me to be a grandmother.
I am still a child of God and I need to glorify him with my life.
I press on toward the goal . . .

Today I joined my sisters and brothers in Christ in worship, praise and thanksgiving. Through communion I was assured once again of the forgiveness I have through Christ.

I have peace. I have joy. I am thankful. I have renewed strength.
I hope you all do too.

I have started my thank you notes. I am enjoying reflecting on all the blessings God has given me over the past few weeks. I'm hoping to share some of those with you as time permits.

Last night was the first homecoming dance for our Richie. He had a blast. Thank you Becki and Becky for helping with Richie!

Love these guys!

Blessings to you!

Momsters

Hey Monmsters. Yep, that's what I'm going to call you. I know our kids sometimes feel like that N should be there instead of the M but I don't agree. We have Cysters, CFers and you I will affectionately call Momsters.

So Momsters, here I am on the otherside of CF. I know you are wondering what it is like. I know I always wondered but then most of the Momsters I knew would disappear. I had very little contact. So this is not something I have had any pre-experience with.

I assure you there is still peace.

I'm not going to start to lie to you now so I will tell you there has been some stress. Trying to work out the logistics of a funeral that involves very large families, and logistics that span travel time of nearly an hour, wasn't easy. But each time I thought I would crack trying to figure it out God put someone there who gave me the perfect answer. Pastor Naumann figured out the timing and then a place for visitation. Pastor Weigand figured out the logistics through our church at Faith. Dale Witte is working out the music and the Van Deurzen's figured out the place to have the Eulogy. Bear is figuring out the ride and Mike's final requests. Derek, Mikey's first cousin, is taking care of directing the whole thing. He is doing a beautiful job. When I mess up he just fixes it for me. How strong he is to do this for Mikey.

There have been little snags in the plans. Things we will have to let go of like the belt with the belt buckle Mikey wanted to be buried in. I wish I could find it but it is a temporal thing and Mike is in Eternity now. I'll just keep doing the best that I can.

My heart feels so full. I have so many blessings. I have fond memories. There are little leaps of joy followed by tears of sadness.

The tempter is still here because the tempter is gonna tempt. He wanted to give me a good poke yesterday but my hubby Paul gently guided me. And I could feel that my brothers and sisters in Christ are still praying for me. Big Mike assured me too. The tempter wants my focus to go to me right now. He wants me to think about all the things I did wrong. He wants me to second guess the decisions that had to be made. We don't have to put up with that NOISE. God promises forgiveness even when we make mistakes. God promises to take those thoughts away and he did. So far I can assure you that God has kept all of his promises. I have focus and peace. I want to mourn and honor my son and my God.

What there isn't here on this side of CF is despair. No despair. Yes, there is sorrow. Yes, there are tears. But there is so much comfort from the comforter. No worry. No anxiety. But there is still love and faith and hope.

I have heard from a few new Momsters, welcome. I will get back to you soon.

Keep praying. Peace and blessings to you!

P.S. Dear God, There are lots of people mourning down here. Can you give them comfort too? I know you will if they ask you. The funeral is going to be beautiful God. Pastor Naumann is going to use some of your words to comfort all of us. And per Mike's request it will be short, which doesn't seem fair because now he is with you and he gets to pray and praise all day.

People are saying Mikey's an angel. I know that's not true. You told us you created the angels and you created us separately. We have a soul and Mike's soul is in heaven. I know he's not looking down on us either God. That would be torment and Mikey is in heaven. Thank you for putting that great chasm between us. (Luke 16:26) I know Mike wouldn't want to see our pain, he finally got to leave all this pain and we are so happy for him.

I know only you hear me Lord. You take good care of my little Mikey. Oh, my little Mikey, my little Mikey. I miss him God. I cant wait to see all of you. But I will be here, faithfully finishing out the plans you have for me. Joyfully, God, joyfully.

One of the brothers just drove by God, did you hear him? They promised me that when they are in the area they will go by and rev the pipes a bit. You see, whenever I would hear those loud pipes I would say, "Mikey's home." And God I still say that when the brothers do that because MIKEY IS HOME. Thanks for taking care of him God. You're the only one who could do a better job than his father and me.

That's all for now God. Thank you for keeping the tempter away from me. I have lots of other things to thank you for but that will be for another time. You see my heart.
Amen

P.S.S. I am overwhelmed by the outpouring of love and blessings to our family. Thank you is not enough for all the blessings we continue to receive. Bless you, bless each and everyone of you. Thank you for continuing to support us while we mourn. Love, love, love.

Obituary

On September 28, 2014 at the age of 31, the soul of Michael Richard Van Deurzen, Jr. was taken to our Lord in the arms of his Savior Jesus Christ to share eternity with our triune God. This did not happen because he was good, or because he had suffered enough; but because of the grace of our God. Heaven has received a bright, precious soul. His spirit has been set free, no longer to feel the pain or challenges of Cystic Fibrosis.

We will miss Mike’s creative and loving spirit. We will miss the entertainment he provided with his juggling, balloons, dancing, singing, motorcycle riding and playing guitar. He was always quick to volunteer to help out others, whether that was stopping at the children’s ward to entertain the kids with juggling or hopping on his Harley for a charity ride with his Brothers. Mike loved to give back.

But the thing we will miss most is the example he was in living. Mike exemplified life and this will be his lasting legacy. He lived life even when there appeared to be no more life left to live; purposefully, intentionally and with great passion. Mike was inspiring to many with his “One More Round” attitude. His constant upbeat mentality made us better for having known him. We have been privileged to witness his walk toward home.

Many were drawn to Mike’s easy going nature. He accepted everyone as they were. He had many friends from all walks of life and treated them all with the same dignity, respect and love that he cherished from others. Loved dearly by his family and friends, he will be greatly missed.
Mike was a 2002 graduate of Winnebago Lutheran Academy and a member at Faith Lutheran Church of Fond du Lac.

Family who await a blessed reunion with him in heaven are his mother, Gina (Paul) Thiesfeldt of Fond du Lac; father, Mike (special friend, Kay) Van Deurzen, Sr. of Little Chute; sisters, Katie Rae Van Deurzen and Amber Rettler; brothers, Richard and David Thiesfeldt; Grandparents, Jeanette Van Deurzen of Little Chute, David and Shirley Milner of Omro; and a nephew, Gage.  Aunts and Uncles are: Cathy (Jean) Van Deurzen, Sue (Jim) Spierings, Bob (Johnna) Van Deurzen, Don (Vicki) Van Deurzen, Steve (Chris) Van Deurzen, Scott (Tanya) Van Deurzen, David (Renee) Milner, Lynnette (Phil) Priebe, Terri (Mark) Gauthier, Darick (Anne) Milner, Douglas (Jo Rae) Milner, Dennis Milner, Dan Milner, Duane Milner. Mike is also survived by many cousins and his Brothers from the Top Hats Motorcycle Club in Oakfield WI and friends.

Mike was preceded in death by his grandfather, Robert "Rags" Van Deurzen; Uncle, Darrell Milner and cousin, Devon Milner.

Visitation will be held on Thursday, October 2, 2014, from 4:00 p.m. until 8:00 p.m. at Good Shepherd Lutheran Church, 855 Martin Ave., Fond du Lac. Visitation will continue on Friday at Faith Lutheran Church, 55 Prairie Road, Fond du Lac, from 9:00 a.m. until 10:30 a.m. Funeral services will be held at 11:00 a.m. on Friday, with Rev. Brett Naumann officiating. Interment will be in St. John Cemetery, Little Chute, immediately following the service. Condolences can be expressed at www.verkuilenfh.com. A memorial has been established in Mike’s name.

We would like to thank the staff at UW Madison’s D6/5 unit. We especially thank NP Brooke Lachance for her personal attention and professional care. She willingly took extra time to explain things to Mike in a way that helped him understand. Thanks also to Erin Patten, who was not only his primary caregiver and advocate while hospitalized but also his friend and confidant. May every chronically ill patient be blessed with such dedicated support! Mike was blessed and comforted by their compassion. We would also like to thank Mary W. from Heartland Hospice for her comfort and care during Mike’s final hours.

Breathe Easy - miss you so much