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.