Sunday, August 30, 2015


“What am I good at?”
“How come Annesley can look at her memory work and then say it and I have to look at it and look at it and look at it and I STILL don’t know it!”

Mrs. Wagenknecht was a wonderful advocate in Mike’s life. When he was a small boy he struggled as I continued to work at getting his learning disabilities diagnosed. He was in second grade and he still couldn’t read. He uttered the words above in frustration. Mrs. Wagenknecht knew all of the students in the classroom. She was telling me about all of their attributes and I asked her, “What about Mike?” Without hesitation she said, “Mike is a good friend.” 
Mike is a good friend!
How true. That statement would be reiterated from almost everyone he met for the rest of his life. Pretty much everyone liked Mike and he was a good friend to many. When he was working full time he felt he was contributing. When he was dancing he felt accomplished. Especially when he was doing charity work with Julie.

Learning to paint on the clown face
from our family friend Pam
As time went on and Cystic Fibrosis weakened his body, he began to question his purpose. We talked about this on more than one occasion. We had lots of time to chat on the drives back and forth to Madison or during my visits while he was in isolation. It never seemed like it took much to encourage him. He would talk about stuff but you never really saw his struggle. I think it’s because Mike lived his life with such intention. He had to purpose every day to continue to thrive.
A few months after Mike passed away I went up into his mostly untouched third floor room. I started looking around. Just kind of nosing about. I became quickly frustrated not really knowing what I was looking for and gave up my quest.  A few days later I found myself up in his room again. Just looking around from corner to corner thinking about Mike and his life. I started to search once again . . .this time a little more intently. I picked up a couple of his things and then walked over to his book case. This is where he kept pills and CDs and things that were close at hand . . . and there it was.
I didn’t remember it when I first found it . . .I had to read and study it. It was exactly what I was looking for.
Let me write you a few of the words I found in this letter I had written to Mike in March of 2013:
We talked about plans and the future. Do you ever wonder why we are here? Why God put us here in this very spot, at this very moment?

I believe we are all here for the same reason and that reason is to glorify God. Some of us will do that by being a Pastor, some by being a policeman and some by riding a motorcycle, being a good friend etc.

So in other words, it doesn’t matter what we do as long as it glorifies God. Can we do that by being disabled and riding a bike? You bet!
You said you don’t feel like you do anything to be proud of anymore. Maybe that is the problem - - it’s not about you. When our focus is on ourselves we don’t glorify God. When our focus is on God, then everything we do is for Him. We glorify Him by making the best with everything He gives us and that is what you do! And that is what people see and admire in you. Your perseverance. The fact that you get back up and keep fighting no matter how hard life has kicked you down. You stumble and fall like the rest of us but you get back up and press forward with more determination and motivation and that motivates and mystifies others.

You have a disabling disease and learning disabilities but you have so many more gifts than disadvantages. You are creative. The stuff you have done with music and dancing are remarkable. Just beautiful. Your inner strength shines brightly. Your thoughts are so deep. You have such an understanding of people and life.

I could go on and on. I couldn’t be more proud of you if you were a brain surgeon or astronaut. Keep doing the best you can with what God gives you like you always have. That glorifies God and is exactly what his plans are for you. I love you so much! XXOO Mom

Circumstances in life might temporarily or permanently change and tempt us to feel useless ( I don’t like that word) . . .  But that is not truth. We are never useless! When one door closes I believe another one opens. God tells us we have purpose. We might need to re-purpose ourselves but we will always be able to contribute if we choose to do so.
Proverbs 19:21 Many are the plans in a man’s heart, 
but it is the Lord’s purpose that prevails.
Whether Mike was making balloon animals for the kids down the hall in the hospital, juggling for kids at church or charity events, dancing in competitions or choreographing for charity, or just riding around on his bike with his brothers – Mike was purposeful with his time and talents.
He loved riding his bike with his brotha Dennis and other brothers

When I went searching up in Mike’s room I guess you could say I went searching for my purpose. I found it. What purpose did I have in Mike’s life . . . during his final few years here on earth? So many times I wished I could do more. I wished and prayed I could take away his pain. I would have done anything to stop the progression of his disease. But my purpose came in encouraging him. It came by helping him to hold up his arms . . . as did so many of you. It was God’s purpose for me at that time. It was obviously important to Mike too or he wouldn’t have kept that letter so close at hand where he could see it every day.
1 Thessalonians 5:11 Therefore encourage one another 
and build each other up, just as in fact you are doing.
I encourage you to take the time to write these things down. To write letters to the ones that you love. Tell them how much they mean to you. Record it. If you find yourself down and out for a time maybe you are being given that time to write a letter to someone who needs the encouragement.
It may be the only thing you have left when they are gone. And trust me that will encourage and lift you up when you need it.
Juggling flaming torches at the family reunion

Should something happen to you, your words will encourage the receiver forever. There is something special about the written word. 
I am thankful I took the time to write this letter to Mike even though things were crazy busy the last couple years of his life. Finding this helped me in my healing process. Almost as much as some of the things Mike gave to me or wrote to me. 
I hope none of you ever have to walk in Mike’s shoes but I know many of you will. A few of Mike’s friends have recently found themselves in a hospital bed staring at the ceiling. I have been praying for each of you. I am proud of the way you keep going. I hope that Mike’s story continues to be an inspiration to you as it is to me.

Each of you had a purpose in Mike's life and that purpose is complete. How will you re-purpose yourself?
Blessings to you! Love, love, love.

Psalm 57:2 I cry out to God most high, to God, 
who fulfills his purpose for me.

WI State Championship 2007

Monday, July 20, 2015

Honoring Mike's Legacy - A Big Hug

Thank you Nugget and all the Top Hats for a special remembrance of Mike
Click on any of the pictures to see them bigger :) 

On Saturday a bunch of Mike's brothers and friends got together to honor him by placing a stone at the Wisconsin Motorcycle Memorial in Sturgeon Bay.

The group left the clubhouse and headed to the cemetery to pay their respects. But before they all left Peggy gave me the most awesome t-shirt that says "I MISS YOU" on the front. On the back it says:

I think about you
I think about you still
You have never been
And you never will
I hold you close
within my heart
And there you will remain
To walk with me
throughout my life
. . . Until we meet again

Still chokes me up to read those words. It isn't just the gift of the t-shirt. It is that she thought of me, then asked Katie what size to get, got it in PURPLE, and had it there for me on such a special day. It takes someone truly awesome to do something like that. Thank you Peggy Gray! You bless me!

If that wasn't enough Peggy had purple bandannas for anyone who didn't already have one. Some of the Lady Top Hats wore purple shirts and other purple accessories. They knew I haven't been around a lot so they came up and gave me a big hug and told me how much Mikey meant to them and how happy they were to be going on this ride. Even though there had been severe thunderstorms just hours before, the turnout was fantastic.

Richie wanted to come along and meet Mike's friends. They were all so sweet to Mikey's little brother. Richie is getting over some of his shyness around them. Like Peggy says, "They don't bite! Unless you want them to! lol" Bear said the nicest prayer for everyone's safety and blessing. Nice to have an ordained minister in the group.

We left the club in a procession and started the over 2 hour trip. Several of us were in cars behind the motorcycles. We stopped a couple of times along the way. I said to Richie, "Do you think you'll ever ride on a motorcycle again?"
May 2013 - I chose this picture so you can see Mike's patch. It was one of the
first ones sewn onto his vest. I am my brothers keeper.
Click on the pic to see it bigger.

"YES . . . I want too!" came his quick reply. He had only gotten to ride with Mike one time. Mike made a point to pick Richie up on the last day of school and give him a ride home. Richie loved that short ride.

We stopped at a gas station about 15 minutes from the cemetery. I thought to myself that it would be cool if Richie could get a short ride (he's only 15 and his arm still hasn't healed so I didn't want him to go very far). I asked around and Jenni said she would give him a ride but we didn't have an extra helmet. I called Big Mike and Kay said she had one he could use once we got to the cemetery. Katie and her dad cleaned up Mikey's grave from the storm that had just blown through.

The brothers pulled Mikey's bike up to his grave. They silently all went up to pay their respects. I couldn't watch. I was last. It melted me down . . . Richie went with me . . .I told him - don't ever leave me . . .he shook his head. I gave Richie one of Mike's patches to keep. I was a puddle . . .and then one by one my other boys came and gave me big hugs. That helped a bunch.

Then I froze up . . . I kinda talked to Richie about getting a ride and he was excited but the next leg of the ride would be an hour. I wasn't really ready for that and he's so shy and his arm . . . I looked around at all the bikes and the ones with the wrap around seats with handles were full with pretty Lady Top Hats :)
Richie getting ready to ride :) 
Gitter said he would be honored to give Magik's brother a ride - what a sweetheart. I was a little concerned about my Richie being so shy and super nervous about his arm. Uncle Don said, "I have a grandpa bike if he wants a ride. I won't even feel him back there." I looked over and saw exactly what I was looking for - still a little nervous but I could see the excitement in Richie's face. Richie knew Derek's dad, Uncle Don, from Mike's parties and he seemed relaxed and anxious to go. I said yes and he got the biggest smile on his face. Yes, Mikey's cousin Derek was there too. He is the cousin who put Mikey to bed until we see him again.

More folks joined the group (including Big Mike and Kay) and it was off to Sturgeon Bay.

Unfortunately, a couple of bikes broke down on the way but brothers look out for brothers and they were prepared with the trailer.

It was a HOT day. It didn't matter to anyone. I didn't hear one complaint. Richard road in with the same big smile. Big M rode Mikey's bike into the Memorial park.

The Door Devils had the stone all ready. We were joined by some folks from Rite 'O' Ways and Outlaws too. Did I mention it was HOT? The group gathered and Radar spoke on behalf of the club.

He had ridden with Mike the 45 minute drive when Mike chose to come home to die. I'm so glad Mike got to spend that time with his brother rather than with a stranger. Shannon hadn't shared information about their time together until Saturday.

I was so touched. They were all there living out Mike's legacy of love. Joye shared how Magik wanted all of his brothers to have a patch like his. He had shared that with me also. One of his dreams that he wasn't able to fulfill but his brothers will for him and Joye will see that it gets on every vest.

Peggy placed a purple ribbon
under the stone.
Then it was time to place the stone. They let Mike's father Mike put it in place. He knelt down and placed it in the ground . . .and he couldn't get back up. And the boys came and gave him big hugs to help him. And they toasted their brother Magik and went over to visit Chopper Jim across the way. Becky came along to honor Mike. I am so touched.

Katie and Richie bonded in a new way that day. I can't put it into words but I think it helped both of them heal a little more. I am grateful for that opportunity.

Richie talked to me on the way home for the first time about losing his brother. I think watching all the other brothers express their love and grief helped him to know it was OK to share his. I will forever be grateful that this group of men and women shared this with us. And as I was saying thanks Nancy said, "You're family now!" Thank you for your kind words Nancy. And happy birthday to you and lil bit today :)

Mikey's girlfriend Amy helping to place the stone.
I know there will be other times for Richie. He is getting over his shyness and Gitter, Shine and others offered to give him another ride whenever his arm feels better. Thanks for being patient with him you guys.
Katie and Amy - and everyone went back to
the clubhouse to celebrate the July birthdays
including Mikey's :)

We had a lot of fun remembering our special son, brother and friend. No one may ever look at this post . . .but years from now a younger little brother will find it.
A little brother who was only 9 years old when his brother passed . . . who is hurting and confused.
A little boy who won't go past his brother's room without the door being closed.
But one day David will be stronger.
One day he will come here because he will want to remember and learn more about his brother Mike . . .
and his big brothers will still be around . . .
and they will tell him how much Magik meant to them . . .
and they will give him a ride . . .
just like they did for Richie.

Then the LORD said to Cain, "Where is your brother Abel?" "I don't know," he replied. "Am I my brother's keeper?"

And Mike is up in heaven saying to Cain: Dude
I AM my brothers keeper!
I am one blessed momma - love, love, love

Blessings to you!

Sunday, July 12, 2015

The Most Loving Thing

A long time ago, a woman who I respected very much said, “In all situations, I ask myself, “What is the most loving thing I can do here.”

I think about that all the time. Between stimulus and response we make a choice.

I also really like this passage:
Out of the overflow of the heart, the mouth speaks. Matthew 12:34

Recently, I have been taken back by the violence and unrest on social media. Mike’s friend Paul articulated it very well this week as he too contemplated leaving social media behind.
I have a huge family and there are good things about social media that I enjoy so I will stay. But I don’t have a problem blocking things when necessary.

There is one thing that can bother me. That is when someone gets upset about something that has happened – verbalizes it vehemently and then turns around and does the very same thing to someone else. Hmmm. That one gets me every time. This is where my choice comes. This is where I hear the little voice in my ear saying, “What is the most loving thing you can do in this situation?” I usually seek to understand.

I ask lots of questions. I always have. I enjoy hearing the perspective of others. How will I ever truly understand if someone doesn’t tell me their side? When I ask it is because I seek to understand. Not because I necessarily disagree. Not because I want to be swayed to change how I may feel on the subject. Sometimes I want more information because I haven’t really formed an opinion. There are lots of reasons for my questions. I usually ask people I feel will have some insight that I can go from. Or I wonder if they have thought it completely through . . .

Unfortunately, often times my questions are met with pugnaciousness (sorry, it is still the best word – argumentative, anger . . .). That makes my heart sad. I can’t even ask to better understand without hearing things like, “Oh, I’ll go there . . .” How do you even start a conversation with that? I made a choice. I still wanted to understand – even from this person.

I appreciate hearing the perspective of others when spoken in love and I am thankful there are folks out there who are willing to do that. I’m sure it’s not the most comfortable thing, but I appreciate the genuine effort. How will we ever understand each other if we don’t know where people are coming from? Can we continue to speak – in love? (And please, don’t take my lack of response to mean that I agree – wanting to understand does not automatically mean I agree.)

What I do hope is that I will always have my right to be heard, have my right to voice an opinion, even if it isn’t popular, and have my right to disagree. I think many have fought for their right to be heard so I’m hoping they will understand me wanting to keep mine. We are a great big country and we are never going to agree on everything, but hopefully we will all agree that we each have the right to voice our opinion – spoken in love.

I don’t blog as much anymore. I am mocked for my blog by some. I am hailed by others. I don’t think I deserve either.

This world is getting to be a tougher and tougher place to live and I hope we can all find encouragement along the way. I have been told that my blog encourages others. I am humbled. That is why I continue to put myself out there.

If you are tempted to anger by reading anything I post on social media or if you don’t like my curious nature – feel free to unfriend, unfollow or delete what I share. We can agree to disagree. I will still think of you fondly.

If you meet someone who is not responding in love . . .what will your response be?

I choose love.

When you are tempted to anger think about your response - consider - What is the most loving thing I can do in this situation . . . 

And now these three remain: faith, hope and love. And the greatest of these is LOVE. 1 Corinthians 13:13 

Saturday, May 16, 2015

Battles – CF Awareness – May 16

This is a picture of Mike with his favorite nurse Erin. This a picture Mike
would allow you to see. There is so much more that hasn't been shown. I share
this now to help people understand what CF really is.
May is national CF Awareness month. I've been pretty quiet on the subject. It is hard for me to talk or type about it. 

Daily treatments. Hours upon hours. This machine was a blessing and
no more pounding on Mike's chest. It gave him independence.
I thought there would be a cure by now. 

Mike fought this battle hard for 31 years. There were many battles. Each one with its own set of challenges. 

He lost the ultimate battle – but Mike won the war.

One year ago today Mike wrote this:
A routine port placement became life threatening when
his lung was nicked and collapsed. No more veins
available on his right side. Would this port hold?
I've been thinking a lot about what to type. It's been 15 days since I was last in the hospital and now I'm on home ivs for a week. Then another 2 weeks in the hospital. Pain is all the time. On oxygen all day every day. I’m not righting this as a poor me but to show people what they don't see when they look at me. It's CF awareness month and if you are not aware u wouldn't know why u should give. It’s to help some1 have a better breath. Please take the time to look it up and help so many ppl. Thank u for reading this.

Thinking back to the suffering my son endured is almost unbearable.

So many weeks spent in the hospital in isolation – so many alone. Years of his life inside a hospital room. On a hospital bed.

Drugs, drugs and more drugs.
Side effects that would make a chemo patient cringe. The knowledge that the only true end to it will be death. No remission. No cure.

Constant pain.

Constant annoying sinus drainage – sore throats, uncontrolled coughing. Interrupted sleep. Chronic fatigue.
Taken after his lung collapsed in 2007. Mike was at his healthiest. You
can see how thin he was. Again, this was his BEST,

Almost constant hunger, diarrhea, rectal prolapses (these are excruciatingly painful). Feeding tubes and nausea from the formulas that are meant to be the remedy.  

Testing – horrible, embarrassing, degrading, PAINFUL testing.

Patience – enduring all the doctor and nurses who have their agendas. Well-meaning but though to endure over and over and over again. Year after year for 31 years.

December 2013. Intubated. Only God's grace gave
all of us the extra year with Mike.
The constant threat of death and separation.

Invasion of privacy.

Lack of choices.

Judgement from others – well-meaning or not – some folks feel it is there right to verbally articulate those judgments rather than keep them to themselves. 

Insurance nightmares, keeping track of all the appointments.

Daily compliance with airway clearance that takes hours everyday. 
The GUILT when a treatment is missed.

The constant psychological warfare – am I doing enough? Am I getting sicker because I’m not doing more? Are people judging me? I’m so tired. I just want to have some fun too. Does it all have to be about CF? How long will I live? Is this my last hospitalization? Am I dying? If I make a new friend am I going to have to explain all this? If I do try will they pass judgement and be one more person I have to fight for understanding? Will this bless me or is this just one more thing I will need to endure?

The loneliness – no one understands what this chronic illness is like. Even other CFers. Some don’t have it as bad as me and they strut around like they are so much better. Like somehow they can control this disease and it is only because I’m not doing something that I’m declining.

Financial pressure – there never seems to be enough money. Will insurance drop me? I want to buy that part for my bike and the doctor says I need a new medicine. Will CF take everything? How can I manage it all? How long will this continue?

CF was a battle Mike fought every day of his life.

Like all of us he fought other battles and made choices. We all have battles to face. Some are worthy and some are worthless. I’ll have more to say about this another time.

Holidays and birthdays spent in the hospital.
He fought with everything in him. He made the best of a really crappy situation. He lived his life fully with the circumstances he was given. He picked himself up time and time again and pressed on. He had some good friends and family that helped him on his journey.

I know, like my son Mike, I will win the war. I know this because Jesus won the ultimate war for me. Because He lives I too will live eternally and in that paradise I will be reunited with my son. This I believe with all my heart.

If you are so blessed and can donate money to help this fight against Cystic Fibrosis we would appreciate your support. It is a terrible battle that so many children and young adults are fighting.

Thank you for considering to donate to CF. 
As Mike said above “It will help someone have a better breath.”
Diabetes - another side effect of CF. Daily monitoring and shots.
I probably shouldn't have distracted him while he was doing this.

Writing this post is so much more difficult than I thought it would be. I guess that is why I have procrastinated this long. My family and friends know how hard we fought this battle. We raised so much money and a cure was not to be for Mike. I can hardly look at an article about CF right now. For us it is too late. But please, there are so many beautiful people out there who need our help. Please continue to support CF. CF awareness was so important to Mike. He walked that fine line of not wanting pity but wanting people to understand how horrific this disease can be. Please give. In honor of Mike and all those fighting this battle. Thank you.

To paraphrase a quote from Mike: 
May is CF awareness month.
I have My son lived with CF and I am very aware. 

Yes I wrote that correctly. My son lived with CF. You don't die with CF - you live with it. Please help us spread CF awareness. Share this or a story you have. We won't stop until CF stands for CURE FOUND and no other human being has to live with this disease. To find out more about CF visit. Thank you!

Blessings to you. Love, love, love!

Monday, May 11, 2015


We all make choices.    Everyday there are choices.    We all make them differently.

I am very saddened by what happened this weekend. What makes me so sad?

Wounds will heal. We are so blessed that Richie's and his friend's guardian angels protected them from severe injury. But the loss of innocence is saddening. It wasn't just Richie and his friend that lost this, it is each and every one of us. Everyone in our Community. Each of us will have to rethink the choices that we make and the choices we make for our children. I spoke to several people today. I could see each person was contemplating choices in their head. Maybe someone reading this is revisiting choices they have made in their small town. This kind of stuff only happens in "big" cities?? It makes me sad. We want our child to be responsible and it seems we have to monitor closer and closer and withdraw more choices because of the poor choices of others.

I thought about that - the choices of the three young people who did this. Did they have choices? I had to trace back the steps. I had to talk to Richie and his friend to put the pieces of the puzzle together. The report that came across the radio was inaccurate. I haven't seen the police report but I know officers are busy and they can't get every detail. 

Choices. Were either of the perpetrators under duress? Does their life circumstance make them feel like they have no other choice? Were they bullied into this? 

Richie keeps asking why. Senseless. There may never be an answer to why. 

Just like these 3 young people, I am a sinner too. I have made some really poor choices. I made the worst of them when I was about their age. At times I convinced myself I had no other choice.

Isaiah 30:21 Whether you turn to the right or to the left, 
your ears will hear a voice behind you saying, 
"This is the way, walk in it." 

We can not judge the hearts of these three people. We can only judge their actions. I pray that they stop this violence and make better choices. Do I want them to be found? Do I want justice?

I have not had to pay for every sin that I have committed. I did not get caught at all of them. 

What I have done is confess all of my sins. And I do know that each and every one of them - no matter how horrific - have been forgiven. I've never claimed to be perfect - just forgiven. That same forgiveness can cover over an assault. We forgive as Christ forgave us.

What I want most is for these three people to stop and never do this again. I want them to repent and feel the freedom that I have. I want them to learn the truth. However God works those things out is OK by me. I don't need to know how it is done. 

Many people are once again praying us through this unfortunate situation. Thank you so much. Richard and his friend appreciate the prayers and support. I know it is difficult but please pray for these young people too. Only God can change a heart. I pray God uses this experience to draw them closer to Him. I pray that if they feel like they have no choice that they listen to that voice in their ears telling them which way to go. I sure wish I would have listened more closely to that voice when I was their age. There is always help. Reach out and get help.

I pray that the knowledge of this awful experience my son had to endure helps someone else to stay safe. I pray we all make good choices. I pray that sharing this on social media has not caused any consternation for anyone. 

Ezekiel 33:6 "If the watchman sees the sword coming 
and does not blow the trumpet to warn the people and 
the sword comes and takes the life of one of them, 
that man will be taken away because of his sin, but 
I will hold the watchman accountable for his blood."

New choices I will make? Tell my children more about the bad out there that they need to be aware of. Once they start out on their bike or a walk they need to continue until their destination. No stopping or dallying (They had stopped to call home and tell us they were on their way.) A child can help someone else by getting them help. They can call 911. I will be more aware of my surroundings and point that out to my kids. We will rethink things and make new choices as we need to. I will continue to encourage others and not live in fear. I will continue to TRUST HIM.

There is only one answer to end senseless, random acts of violence and that is love. Pastor Parsons articulated it perfectly this past Sunday. I share it with you below.

I am still sad but God can heal that too. 

In case you had lost any faith in community, my family and I are receiving tremendous support once again. Richie's dentist Dr. Botsford got in touch with us to say he would check on Richie's oral health (he got his mouth pretty banged up by getting hit with braces on.) Erin the wonderful woman who saw the whole thing and contacted the police has also contacted me. God bless these people in our community you give us all hope. Fond du Lac will stand strong - together.
Surely it is God who saves me, I will trust in him and
not be afraid. For the Lord is my stronghold and 
my sure defense and he will be my Savior. Amen
Blessings to you! Love, love, love.

Sunday, May 10, 2015

Mother's Day 2015

This is the only year I actually took a picture of us AT the "c" church

Every year my kids ask me what I would like for Mother’s Day and every year I give the same reply. The other day Katie asked me and I just looked at her and when she looked up to see why I hadn’t answered I said, “Katie, what do I always want for Mother’s Day?” And with a big smile she said, “I know. All your kids in church with you.”

At work on Friday, many folks wished me and all the other moms a Happy Mother’s Day weekend as we left for the day. I work with some special people! As I was driving home I thought about my yearly request. And for a brief moment I thought, wow, I won’t get my wish this year. But as I looked up at the beautiful sky and thought about my Mikey up there in heaven I remembered that there are two churches. There is the “church” or small c church as Pastor Wagenknecht used to say and the capital C “Church.” The small c church he referred to is the earthly church we belong to here that has 4 walls and a ceiling. The capital C Church is the Church triumphant which includes all believers here and in the Church in heaven. So for Mother’s Day I will continue to get my wish – all my children with me at CHURCH! I am one blessed momma indeed.
This was a gift from Mike two years ago.

Everyone has a mother so I wish you all a blessed Mother’s Day as you celebrate this holiday in your own special way. I am very blessed to still have my mother here. Her example will always be a blessing to me. For those of you who have had to say goodbye to a mother I pray you find peace through the knowledge of a blessed reunion one day. And for those women who yearn to become mothers and wait for God’s direction in their lives, may you also find peace in God’s perfect plan for your life.

To my fellow grieving mothers who have lost a child or children I pray God’s presence in your life. The pain you experience is one only God can heal. I know each journey will be different but I know the only way to peace is through Him. I pray that you will find support and community to help you through long days. I pray that as we struggle, stumble and fall that people will be patient with us. May we forgive others and they forgive us.

I have to admit it was another trying week. How can things be so cloudy and then go so clear? All I know is that God is so good. He blesses us with just the right people to help us along our path. And there is ALWAYS forgiveness. Thank you God for forgiveness.

As I finished this post the phone rang. It was my son Richie. He called to tell me that as he was walking home with his friend a car pulled up and he was attacked. Richie received two blows to the face and head and then kicked after he was down on the ground. Right here in our town. A couple blocks from the Lutheran High School he attends. Thank you God for keeping him safe. God help those troubled young men. This should not be happening. 
Unprovoked – random . . . senseless. 

My son is gentle and respectful and still has a broken arm that he can’t use much. No words. So thankful God is much bigger than these young men. These young people are someone’s children. Are they celebrating Mother’s Day today? I hope so . . . Father forgive them . . . and help us to also.

Praying for peace. Blessings to you.

Sunday, May 3, 2015

I get by with a little help from "his" friends . . .

I received this email last Wednesday - I didn't see it until Saturday (yesterday):

A while back I sent you the email below. But I wanted to update. Our baby is now almost 3 months old and in honor of our good friend, we made his middle name Michael.

Attached was this beautiful picture:

His name is Connor Michael B
He was born on February 9, 2015
He weighed in at 8lbs 4 oz.
What a cutie he is!! Don't you just want to mug on those cheeks!

Sabrina attached her original email which I don't remember ever seeing. She had sent it to me on the day Mike passed away and I guess I just lost track with all that was going on. It follows:

I am so sorry for your loss. It should never be that a mother has to bury her child & as a mother of 2 I can only imagine your pain and grief.
My husband met Mike about 7 years ago because they both had bikes and would ride together. I went to the gas station when Mike and my husband were there and we all became friends. That night Mike, a friend of mine, and I hung out together and stayed up late talking. I asked him "So why doesn't Matt have a girlfriend" and Mike said, "He just hasn't met the right girl yet, but you are probably it!" ... Mike was full of it because Matt actually did have a girlfriend haha. But Mike was right, when Matt hung out with me the next time he said "I actually did have a girlfriend, I went home and broke up with her after I met you." If it wasn't for Mike saying what he did I probably wouldn't have hung out with Matt again. And if it wasn't for Mike I wouldn't have married Matt.
Mike was the best of friends. He has enough health problems of his own that he didn't bring drama or problems into his friendship with his friend. He never once was rude or uncaring towards us. He was always there when we needed him, always listened, and always cared. We even had him be part of our wedding party. We loved him like a brother, he was always good to us. And for that I wanted you to know that I am pregnant and due in February and my husband decided that we wanted to make our son's middle name Michael after your son. We'd like to have a piece of him live on.
You did an amazing job raising Mike. You must have been a wonderful mother to raise such an incredibly kind and loving son. And I am so utterly sorry for your loss, but I do thank you for bringing a wonderful person into our life even if it was only for a few years. Thank you. Thank you very much.

I just wanted you to know that you are in my thoughts and my prayers.

Attached to the email was this picture:

Sabrina and Matt's wedding in May of 2009

As I was holding these printed pictures and emails in my hand choking back the tears of sadness and joy and bewilderment and pride - the house started to rumble and it sounded like the flight for life was coming toward the hospital down the street but I knew it was my boys . . .

Shine had something to show me . . .

Shine told me that Mike meant a lot to him and had touched his life. He wanted to have a piece of Mike with him always so he had RIP MAGIK painted on his bike. I am so touched that people remember my son in such special ways. Each person has their own story to tell and it is always truly magic Magik. . . :)

The boys know it is important to me that Mike's little brothers get to hear these stories. They all shook Richie's hand and then gave me a hug and were off to a Cancer ride. 

You can see in my hand I am still holding Sabrina's email . . .

It was a particularly tough week in that through judgmental words, I was thrust back into unwanted memories of some very challenging decisions I had to make as a mother of a special needs child and normal kids. They weren't easy decisions to make the first go around and to go back and revisit them was not healthy. It only leads to pain and despair. That was not something Mikey was fond of. So much so that he had it tattooed on his body. Julie shared these pics and it reminded me that suffering is optional!

This, along with some really awesome counsel from Christian friends, helped me through another rough patch.

I have done lots of things wrong in parenting these 4 blessings God has given me. This I know for sure. But, according to Sabrina and others, I guess I must have done a few things right also. Katie assured me by saying, "Mom, you weren't just a good mom to Mikey. You were a good mom to all of us!"

God is so good. Thank you to all Mike's friends who continue to share their pieces of Mike with me. Bless each of you.

1 Peter 1:6-7 In this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that your faith - of greater worth than gold, which perishes even though refined by fire - may be proved genuine and may result in praise, glory and honor when Jesus Christ is revealed.

Blessings to you! Love, love, love.
P.S. Please don't judge parents of children with special needs. I pray you never know what it is like to walk in our shoes. Reach out and lend them a hand. Love it forward! Peace.

Thursday, April 16, 2015

Who I Am - by Mike

Disclaimer: Mike’s learning disabilities made it hard for him to sequence. Extremely hard. So when you read his writings please don’t think, well, he forgot me when he said that. Mike would talk about whatever he was thinking about at the time. Not as an exclusion of other things – not always in a particular order of priority. When I am asked a question I give it deep thought. Too much thought most of the time. It is who I am. Just like that, so it was for Mike only without the sequencing. Enough said. J
Finding the better side of things - Mike 2012

Mike and I spent a lot of time together in the hospital. Things were hectic while he was inpatient. But I would try and do things to change it up while he was there. When he was a kid he had lots of homework but there would always be time to throw balls in the hallway or catch a movie or think up a shenanigan or two to play on the nurses. God bless those nurses.

I am a good dancer - Mike 2012
I took a scrapbook class that I thought would be fun to do with each of my children. I told Mike he was going to be first and be my guinea pig. He reluctantly agreed. He didn’t want to write so I would have to do that for him but he would dictate. There was a series of questions. Each of us would write our answers. Then I would scrapbook them and we would be able to see how alike and different we are/were.

Who I am Today
Mike Van Deurzen 2012

I’m a 29 year old CF survivor. I’m a brother to two younger blood brothers, half-brothers and I’m a brother to brothers in a motorcycle club Top Hats. I am trying to be an inspiration to other people through my journey with CF. I dance, play guitar and prospect. I try to do more than people expect of me. Who I am today lives within the day after facing death. I realize how precious the people in my life are and what a gift it is to have them and have this day to live! I appreciate people and life. I appreciate the time God has given me. I didn't plan for my future because I didn't think I would have one.

This is what I’m good at
I am good at trying to find the better side of things when things don’t look so good. I’m good at guitar and riding my motorcycle and dancing.

Notes said he is a loyal friend, good at reading people, trusting and disciplined - stuff we never finished writing about.

We never finished this exercise . . .there were several other questions that were left unanswered. I never answered mine.

I am going through Mike’s stuff and I am finding precious nuggets like this one. It reminds me what a wonderful son I had. He was a good person. I am blessed.

We are thinking about selling this great big house. It suited our needs perfectly when we had our blended family. But Katie moved out and Mike is gone so we don’t need this big huge house any longer.
As I drove home from work today this thought ran across my mind . . . “I wonder if God will bless us with a buyer for our house so we can move . . .” Then I stopped and corrected myself, “I wonder HOW God will bless us through this process? Will we get a buyer for our house and move to a new home or will we be blessed to stay here for a few more years . . .?”

I play guitar Mike 2012
I am good at trying to find the 
better side of things when things 
don’t look so good. Mike 2012

Whatever God’s plan is, it is to bless us. If there is one thing I have learned it is that. God uses everything he allows to happen in our lives to bless us.

Who I am Today
Gina Thiesfeldt 2015

I am a Christian, a wife and a mother. I am a stronger Christian, a more loving wife and a better mother because of that young man and his influence on my life and the way God blessed me through him.

Missing me some Mike . . .as Katie would say…..missing me some Mike.

It is very difficult to go through all of his stuff and clean out his room. I was upstairs the other day taking pictures of an almost empty room for the real estate ad. Camera in hand I was pretty somber . . and then I heard the pipes and I ran. I got all the way to the porch and waved like a crazy lady. My boys had stopped at the corner, just like I asked them too. . .they waited for me and waved and then off they went. It took my somber moment and turned it around. That’s what we can do for each other – lift each other up. That is where the hole in our hearts that Mike left seeps out and blesses others. Well, you know me, I wasn’t going to let an opportunity like that pass me by with a camera in my hand. . . of course I snapped a picture.

I try to do more than people expect of me. Mike VanDeurzen 2012

Last night Amy and I were up on the third floor going through Mike's stuff and Art drove by - vroommm.

Tonight I was in Mike's room again and someone drove past – a couple. This time I only made it to the window at the top of the stairs but I saw the vest! Coincidence? Karma? No - blessing. God gives me exactly what I need to have peace. Sometimes that is in memories . . .sometimes in writings that I find and sometimes by a bunch of bikers ;) . . .but always through HIM.

I hope whatever you are facing that you get to see the blessings God is sending with the trials. If you can’t see them then I pray you can trust Him. Trust that He is working this out for your good . . .just like he promised. There is nothing bigger than Him – not even CF.

Blessings to you. Love, Love, LOVE!

Thursday, April 9, 2015

The Difficult - the hole in my heart

I think of the analogy of the tree firmly planted will take root and bear abundant fruit. Mike was one of those trees in my orchard (and boy did he bear abundant fruit). When he left my life, roots and all, it left a big gaping hole in my heart and in my life. The tears I shed created mud slides that slowly began to fill the hole. God draws near to the broken hearted, indeed. (Psalm 34:18) I realized quickly I would need to fill in as much of that hole as possible. The hole will never be completely filled. I am hopeful that by filling as much as I can then at least when I wander over it I won’t fall in so deeply that I won't be able to climb back out.

There are things that are more difficult than others. There are triggers that I am learning to stay away from. There are triggers I’m learning that I just need to hold on to.

Things that have been difficult.

Grocery shopping is a trigger. 
Going to the grocery store and not buying all the things Mike loved. 
CFers have an enormous appetite. To help them us Momsters will tantalize with all their favorite foods when they don’t feel well. We have lists of ingredients that go into their favorite meals - special snacks and the like. Food is a big part of any life but to a CFer it is a HUGE deal. Going to the store is still hard. I am thankful Paul does most of the shopping. I have the most fantastic hubby on the planet.

Cooking – for most of the reasons stated above - I am ashamed to say - I have cooked very little since Mike passed away. He was good in the kitchen and would help me a great deal. It makes me miss him. I am thankful for all the food people brought while Mike was on hospice. It was a blessing to our family. I’m working on this . . .

Scrapbooking and pictures. They were my distraction as CF got really ugly these last 10 years. Now I want little to nothing to do with any of it. Does anyone have a match . . .

His smell. It only took a couple of weeks and the smell of Mike was gone. Katie noticed it first. It made us both very sad. We searched, but it was gone.

Basically anything that I felt deprived of while Mike was alive and CF was ravishing our lives, I have a hard time with now. It brings up this emotion that is hard to explain. Some guilt, some sorrow . . .I’m hoping one day I can articulate it. So just taking the time to put a dress on for Easter brought up that feeling. I haven’t gotten dressed up for church, let alone Easter, for years. Like last year for instance, Mike was in the hospital. I threw something on so I could leave right away and go see him. So having time to do that now, I guess, is a reminder I have time but I don’t have Mike. Maybe it doesn't make any sense to others.

Another example is David’s kitty. I told him he could have a kitty when they found a cure for CF. We tried to give him a cat but Mike felt it was making his symptoms worse. Now we have a kitty but we don’t have Mike.

I have a very big house. I got really far behind with everything as I made all the trips back and forth to Madison and tended to all the demands of CF. Now I’m finally getting time to clean up and sort through things. I have to fight the sick feeling in my stomach – because I have time to do this – means I don’t have Mike.

Stress. This could be an entire blog post all on its own. I can't handle a lot of stress. Physical, emotional, or mental. I have to be very careful. Even getting too excited about something can set me back. I don't want to be numb but I do want to be careful. Panic attacks can be a side effect of trauma. I can feel them. I know the tempter would love to take away my peace and send me into despair. But I will fight him. I will fight that urge to numb. Numbing is yet a whole other blog post! I can't remove stress from my life but I can learn to control my reactions to it. I'm sure I'll be talking more about that in the future.

Things I can’t let go of yet. Things I need to continue to stage to be OK.

A coat in the closet. I keep one of his coats in the front closet. For some reason it brings me peace when I open the closet door to grab my coat and I see his. I made sure his father has one for his closet too. Katie has one also.

His enzymes. As the hospice nurse was packing up she offered to take Mike’s meds. I think she is required to take all of the drugs hospice supplies. I just looked at her like . . .What? You’re kidding right? I was tired and that would be a big job but with little kids in the house I thought well, this will help me out. Within a couple of minutes we had produced a garbage bag full of drugs. She looked stunned and said, “Oh, now I see . . .” Someone had brought one of Mike’s big bottles of enzymes and I grabbed it back and said, "NO!" Mikey couldn't eat without them. Enzymes have been in my home every day for 31 years. I could not let go of every bottle. Nope, not yet.

His vest and machines. I am hoping someone will help me out with this. I can’t throw away two machines that helped keep my son alive for years and cost thousands of dollars. I CAN NOT do it. I've asked the hospital if someone needs them and no luck. I was hoping another CFer would want them so they could keep one at a college dorm or summer home and not have to lug one back and forth but no luck. I’m hoping someone will come and take them and I never know what happens to them. . . . . . . . Please?

Things I have to fight

I have to fight the urge to focus on the negative. Between stimulus and response we have a choice. By the grace of God and through the prayer and support of many I am thankful that most of the time the positive wins. And (said gently and with sensitivity to those also on this path) I can choose not to let it consume all of my thoughts. One thing I realized right away is that when I am filled with gratitude there isn't as much room for pain. When I focus on grace I lose sight of grief.

My time of grace did not end, Mike’s did. God still has plans he wants me to fulfill before my time of grace is over. I need to figure out what those are and press on toward the goal. Yes, I can think about the fact that Mike is not here, that I will never get to see or talk to him again as long as I live. Or I can think about how blessed I was to have been given 31 years with him. Blessed to have had all the blessings he and CF brought into my life. There is a quote I love, that says:

When we appreciate what we have, we honor what others have lost. 

I still have my health and God blessed me with other children and even a grandchild. How can I return those gifts unopened and unappreciated. I press on. I miss my Mike and all that he brought into my life. One thing I know for sure:

You don't have to look for trouble, pain, sorrow or difficulty
They are right there when you are NOT practicing gratitude. 
They are there when you are NOT looking at the blessings in your life. 
They are right there when you are NOT looking for beauty.
They  are  the absence of grace.

When I am living my life with grateful 
intention I am not in pain. Period.

I will grow accustomed to this new normal. There is still Joy and Love and Peace in this new normal and I am thankful. My heart is so full. It has a hole where the piece that Mike took with him used to be. That is where all the good stuff I was given as a result of Mike in my life seeps out and is given to others and makes me a better person. It’s called Mike’s legacy. That is the only living thing that Mike leaves behind. I know others have it too because they are telling me about it.

James 1:2-3 Consider it pure joy my brothers whenever you face trials of many kinds 
because you know that the testing of your faith develops perseverance. 

Blessings to you! Love, love, love. 
P.S. For all you grieving mothers and parents out there also on this journey, may God give you peace. I hope you have the support of friends and others. Reach out to them and let them lift you up.
Diane, let's get together soon :)
P.S.S. Did I ask if someone could come and make his machines disappear so I don't know what happened to them? I will just believe that they will be helping someone else sustain life , , , PLEASE?