God's Perfect Timing

God’s timing is always perfect.

Sometimes that is hard for us to see.

Sometimes we have to wait to see it. Looking back it seems so clear.

But those who wait on the Lord shall renew their strength;

They shall mount up with wings like eagles

They shall run and not be weary,

They shall walk and not faint. Isaiah 40:31

One could say that having babies less than 13 months apart isn't good timing. But looking back, having Katie and Mikey so close was a blessing. They were like twins. They loved and cherished each other even after they grew individual personalities.

If you have ever danced you know how important timing is. When a couple like Julie Wilson and Mike danced it was beautiful. They danced as one. If one of them had even been a second off it would have been less than desirable to watch (and probably wouldn’t have gotten them a State championship).

Mikey told many of his peeps that he didn't want to die in a hospital bed. That was part of his decision to come home on Hospice. He even refused the bed that Hospice brought when he first arrived. But after a few days his back started to hurt. He needed to be propped up to be comfortable and that was hard to do in a regular bed. I finally talked Mike into using the bed that was downstairs. “It just allows for you to raise the head up and down, Mike,” I bartered. He agreed. But now how was that going to happen? Mike was getting weaker. The bed that was in that small room was full size. This wasn't going to be easy. Timing would be everything.

His father and I met in the hall and I said, “I think . . .”

“I’ve got this,” He interrupted.

“But . . .”

“I’ve got this.”

“But you know we can . . .”

“I’ve got this!” Big Mike interjected again.

I relaxed. I said, “OK.” I sat back and watched Big Mike’s perfect timing play out.

This needed to be orchestrated. I’m sure Mikey is proud watching the choreography of his father that went on behind the scenes, as he watches the replay on that big screen TV up in heaven. Big Mike rallied the troops that were here. One quick call to Mikey’s friends and family members and everyone was ready to go.

Aunt Cathy cradled Mikey ever so gently in her arms while Amy held the morphine drip. As they sat Mikey down in a chair in the room someone set off a timer.

A group came in and disassembled the bed and rushed it out the door and down the hall. Scott, Bryon, Bear and others led by Big Mike came in and assembled the Hospice bed and plugged it in. Sheets and blankets were already on it and within 6 minutes from the time Mikey got up he was back in bed.

It’s amazing what love can do. So honored that all these people were part of Mikey’s life.

Looking back, I see God’s perfect timing for Mikey’s departure to heaven. We had anticipated many months of dependence on oxygen. Being tethered to a tank. Mike didn't want that. We talked about it a few times and I could not get him out of that mindset. Mike was always so giving. He gave until there was no more left to give. I would tell him that this would be our time to give back to him. But he would get agitated about it.

For we are God’s workmanship, created in Christ Jesus to do good works, which God prepared in advance for us to do. Ephesians 2:10

I have said to people, “If there were ever such a thing as a beautiful death, my son was granted it.” All of his loved ones there to support him. He was able to speak up until the very end. He said his goodbyes and I’ll see you laters. Never alone.

I am so thankful for God’s perfect timing for Mike. For me. For you.

‘O Lord, you have searched me and you know me. You know when I sit and when I rise; you perceive my thoughts from afar. You discern my going out and my lying down; you are familiar with all my ways. Before a word is on my tongue you know it completely, O Lord. For you created my inmost being; you knit me together in my mother’s womb. Your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.’

Psalm 139

Blessings to you. Love, love, love.

Lifted Burdens

There are things I look back at now and see through the eyes of reflection that make me very thankful. They also make me hang my head and wonder why I allowed worry to engulf me at times.

Psalm 50:15 Call upon me in the day of trouble; I will deliver you, and you will honor me.

Having a child with a genetic disease means most life insurance companies will not insure them. For years this thought would creep up into my mind. How would I have the money to bury my son if he died before me?

CF is a very expensive disease for families. Lots of medical bills and medications. Travel to and from medical facilities, stays in hospitals and hotels, equipment and the list goes on.

There were times I trusted and there were times I worried.

So many of you have helped ease our burdens. Thank you. We are so grateful for all the support we received and are still receiving.

• Thank you to all those who lifted us up in prayer. They were all heard and answered.
• Thank you Derek for giving of all of your time for Mikey's funeral preparations. He would not allow one second of his time to be charged.
• To Radar who would not allow us to be burdened with any amount insurance didn't pay for the ambulance ride home.
• Thank you to Grandma VanDeurzen who allowed Mike to be buried on their plot.
• Thank you to so many friends and relatives who gave money to help pay for Mike's medical and burial expenses.
• Thank you to Uncle David, Aunt Renee and my girlfriend Jean for helping financially with Mike's expenses these last couple of difficult years when the expense became overwhelming.
• Thank you to Brandi and Julie for helping raise awareness and money to help with Mike's expenses.
• Thank you to my girlfriend Gail who came immediately and stayed until the end. Working tirelessly even though she struggles with her own chronic illness.
• Thank you to my girlfriend Pam who brought food and shampoo and things I needed.
• Thank you to the many people who brought food to the house. I don't even know who you all are. I didn't see anyone who brought food except my mom and Brandi (Julie brought salsa and cookies). It was just there when I would come downstairs. Bless you.
• Thank you to all of the friends and relatives who helped us take care of Richie and David.
• To Johnna, Cathy, Kay and others who took charge and put the food out for others to have. I was so out of it I didn't even offer Mike and Kay anything to eat or drink when they first came. When Mike and I talked to Mikey and I told them his dad could come and stay, I was extending an open invitation but then we got to our house and things got crazy. Thank you for your forgiveness you guys.
• Thank you to Kay who brought water and hand sanitizer and all sorts of stuff.
• Thank you to Amy who ran to the store or errands on more than one occasion yet was still there every time Mike called for her.
• Thank you Amy S for the Chapstick.
• Mike and Dianne P who counseled with Mike so many times and talked him through many rough patches in his life.
• Thank you Rhonda, Amy, Pastor Parson's, Beth and others for my cokes.
• Thank you to Mike's brothers who would come at a moments notice if we needed anything. Some ran to the pharmacy for drugs, others on errands, some came in the middle of the night because Mike just needed to know that they were there.
• Thank you to Scott who came in the middle of his work week and camped out in the hospital parking lot.
• Thank you to Dennis for making the trip so many times. Mike needed you and you were there.
• Thank you to the women who made the purple ribbons.
• Thank you to the folks who made bracelets.
• Thank you Julie for the flash mob. . . unbelievable memories.
• To the Pastors and staff at Good Shepherd Lutheran for allowing all of us to have Mike's visitation there.
• To the Pastors and staff at Faith who allowed us to fit around tight schedules. Allowed Mike's bikes to be kept there with him. For understanding the brothers needed to keep watch.
• Thank you to Pastor Naumann for an incredible sermon that has brought peace to all of us.
• Thank you to Pastor Parsons, Haugley, Weigand and Naumann for the devotions. Thank you Pastor Haugly for giving Mike Communion.
• Thank you to Uncle Bob and Uncle Scott for honoring Mike's request to sing Breathe. I can't imagine how hard that was to do at Mikey's funeral. But they did it.
• Thank you to Auggy and Mongo who wrote poems for Mike and shared them with the rest of us.
• Thank you to everyone who spoke at Mike's funeral.
• Thank you to Madyson for the Hero speech she shared with Mike and then with all of us.
• Thank you Erin and Brooke for your counsel
• Thank you to Uncle Jim's sisters and others who helped organize and serve the lunch after the burial.
• Thank you to everyone who brought food for the lunch.
• Thank you to everyone who sent plants and flowers. They are all lovely.  Thank you to Mike Bassett for the two trees. They are planted in our yard. I couldn't find your address to thank you.
• Thank you to the THMC for honoring Mike's last request that the club have his motorcycle. This was a difficult request to fill. It was Mike's only asset and with medical bills and such it would not be easy to fulfill this request. The club purchased the bike for well over its value to fulfill Mikey's request and to help alleviate some of Mike's expenses. God bless you all.
• And to Heartland Hospice for the storm we created. It was no easy thing to get Mike home and make all the arrangements in a moments notice. There was not time to work things out perfectly. They took him anyway and we all did the best we could. They came back every time we needed them. They continue to call and offer comfort through our grief.

Thank you to everyone who showed up - no matter how you did it. You showed up and gave support. I never could have imagined how God was going to work this all out and how awesomely he would do it. I didn't need to worry. I only needed to trust him. How silly I was.

Matthew 6:33-34 But seek first his kingdom and his righteousness, and all these things will be given to you as well. Therefore, do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

Thank you to all of you for helping to lift our burdens. God bless each and every one of you. Peace.

I didn't get the entire song but I will share the piece I did get. So awesome of these Uncle's of Mike's to do this for him. 

Keep loving it forward with us. 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.

The Talk

Mike Update: Mike is going downhill quickly this round. He got off of IVs two weeks ago yesterday. Today he got back on oral antibiotics (well he is always on some but now they pulled out the big guns). He started on 750 mg of Cipro and 500 mg of Dicolxacillan today. He is coughing until he almost throws up - it seems almost constant. He went to visit Katie at her work (more about that in another blog post) and she FORGOT to tell him they have an elevator, gshhh. He is helping teach dance at a local high school. He wants to stay out of the hospital until the performance. Two weeks - hang in there Mike!

Left: Mike with his new little brother Richie at 1 month old.
+++++++++++++++++++++++++++++++++++++++

I broke the golden CF rule. What is the golden CF rule? It is - blame CF, not the CFer, or the mom or the dad . . . CF stinks, not Mike or me or anyone else.

I had "the talk" with Richard. Richard is 10. Paul and I felt it was time. Richie has been dreaming about elaborate vacations as a normal 10 year old does. He wants expensive toys/electronics and asks to have kids spend the night. We have never had an extensive talk about CF. He hasn’t had many questions. But as he is getting older and more responsible Paul and I felt it was time to give him more information, to enlist his help. To ward off the possibility of him hearing something from someone else and not us first.

Mike's Senior pictures. He took his "little buddy" with him.

I took Richard out to lunch. I began, “Richard, do you know what Cystic Fibrosis is?”

“Yes,” he answered. “Mike has CF. That’s when your lungs are too small. So he (Mike) coughs a lot. . . (his thoughts trailed off for a moment) and he has to go in the hospital a lot because of that.”

“Well,” I began as I collected my thoughts, somewhat shocked at his lack of knowledge, “It does have to do with Mike’s lungs but they are not too small. . .” I then proceeded to tell him what CF is. He heard words like, infection, 50-100 pills a day, starvation, fatal, and money. His eyes kind of bugged out of his head as they got as big as saucers. He hung his head when I told him Mike’s life could be cut short by CF. I explained that we might not get to go on vacations to Disney World because CF can be expensive. I continued that Mike has to go to the hospital about every 6 weeks now and it costs lots of money. I explained about infection and that it is hard to have kids over. I explained how we have to be careful about germs and that is why mom always pushes the antibacterial lotions. I explained that he can help by helping to get things done around the house because Mike can’t help as much anymore. I told him he will be able to help his brother with things. He seemed to feel better that there was something he could do. I then told him to please not discuss this with the neighbor boy because he has two young sisters with CF and I told him it was up to his parents to talk to him. He said he understood and said the neighbor boy had told him his siblings had CF too. He seemed comforted that he wasn’t the only one dealing with a sibling with CF but understood not to talk about it with him.

I could tell he had had enough. I reminded him that God would provide and that we have our faith to lean on. He wasn’t sad but quiet. He is kind of a quiet kid. I was uncomfortable and didn’t feel like the talk went very well. I said a silent prayer and asked for the right words about half way through. I ended the conversation because I sensed it should end. We went home. Richard started his homework a few hours later. While he was doing his homework Mike came into the kitchen to get something to eat. He proceeded to have one of the worst coughing attacks he had ever had in front of Richie (next to where Richie was working). I was in the other room and peered around the corner. It wasn’t an intense attack that Mike sometimes has - the kind that makes him almost collapse and/or throw up, it was just kind of long. I noted the look on Richard’s face. He wasn’t looking up at Mike but intentionally looking down at his books and I knew.

I was online later with another parent (my age amazingly enough) who has a son who is 10. I wanted advice earlier but they weren’t online. I told this person about what I had done. As I typed, the thoughts of the day clouded my conscientiousness and remembering the look on Richard’s face disturbed me. I started thinking I had made a really bad decision to have this talk with Richard. I started thinking about how I had taken away his innocence. I thought about how Richard would probably never look at Mike the same again. Mike’s cough that had once seemed none threatening would now mean so much more. I felt I had burdened Richard’s little heart with too much. I started to melt down. The flood gates started to open and I could hardly see the computer screen. I was barely conscience of what I was typing – or trying to type at that point. I only remember this person typing the words, “He will be brave. He will be a soldier.” I got off the computer as quickly as possible because I needed to pray. I prayed and God immediately reminded me of the golden rule.

I had always taught Mike and Katie that it was OK to get mad at CF. It was OK to hate CF. I taught them that it wasn’t Mike disrupting our family or causing any pain – CF did these things and it was OK to not like CF. I was beating up on me. I was blaming me for burdening my son’s heart. God has allowed CF in our lives and he promises in Romans 8:28 that this will all work out for all of our good. God has a purpose for Richard to have CF in his life. Far be it from me to try and change that by putting up barriers to God’s will or God’s plan. I thought again of the words, “He will be brave. He will be a soldier.” Yes, he will be whatever God wants him to be because he seeks to do God’s will in his life. I am here to support him. I’m glad someone was there that night to support me and remind me of the golden rule during my momentary lapse in judgment. Thank you friend.

I hadn’t shared the golden CF rule with Richard in our talk – it’s the missing piece that made me uncomfortable. We will talk again.

God provided me with good counsel when I was ready to break. I opened my email the next day and there was such a nice message from Dana. She complimented me on my parenting after reading the post about Richie’s soccer experience. God continues to show me that HE is in control and providing for me and my family. Not me. He continues to give me exactly what I need when I need it.

I love Mike. I don’t like what CF is doing to him. God has a plan. We humbly submit to His plan. We trust in His promises. I am full. Shalom. Love, love, love.

P.S. I have a dream. More to come.

It's Official . . .

. . . I'm a soccer mom. Yikes. But as promised a Mike update first.

Mike update: Thank you to all those who have called, emailed, facebooked or gotten a hold of us somehow. We are glad you are here and we appreciate the support. Mike is having a hard time with patience. It is hard to spend as much time as he does, isolated, in a small room, 2 hours or more away from home. The woman in the room next door keeps him awake and has made rude comments that, of course, he can hear.

Mike went to take a walk yesterday and some teenagers stared at him when he got on the elevator. Mike has to wear a mask etc., when he leaves his room. You know, it's kind of like anything else, if I'm in a bar and someone treats me rudely or makes an inappropriate comment, I may get upset but I do take into consideration the fact that I am in a bar. Now, if I were at work and that happened I might not take it so lightly. Know what I mean? Mike doesn't appreciate rude stares and nasty comments while in a hospital. It is a hospital! I know he is sensitive to all these new things he has to do because of CF - oxygen, masks, ports and tubes in his chest and stomach - who wouldn't be. But truly I want to believe others look and wonder out of concern. It is just hard to deal with as we all know. We pray for Mike's patience.

He also didn't sleep well Friday night. He woke up with a stomach ache and had to stop the night feedings. This was Mike's facebook entry from yesterday:

Mike Vandeurzen: hates the weekends in the hospital they go by so slow

And his blog post from the day before he was admitted:

Mike Vandeurzen: u have nocked me down many times i have goten back up i no u come agen to nock me out but i will tuck my chin in put up my hands n fight i am a cf fighter n this round is mine

Many of you have asked about visitors. Yes, Mike can have visitors. Please, please, please be careful and use the antibacterial hand lotion outside his room and gown up to protect Mike. The cold and flu season is upon us and that stuff is all flying around the hospital. We need to keep it out of Mike's room. Go to this post for more info. Mike is bored right now and would appreciate the company. He said he feels badly when people visit because he figures they must be bored too. Let's help him stop feeling that way. I explained that when his dad and I come we love having the opportunity to spend time with him. We don't need to be entertained. We don't feel bored at all. I am always disappointed when I don't get to go.

To keep our CF freinds in the loop Mike's routine right now includes:
Up at around 5-6 for vitals. (He goes back to bed)

IV Tobra and Zosyn one is every 6 hours (4 x daily) and the other is 2 x daily.
Do the math on that one. Each IV runs about an hour with another 15-20 min flush. He is hooked up a good percentage of the day.
He does chest PT or IPV/Vest 4 times per day. Those each take about 15 - 30 minutes.
Aerosol treatments before like Pulmozyme, albuterol, HTS, saline, etc.
Insulin checks and other CF meds like enzymes etc. Throughout the day.
And then by 9-10 p.m. it is time to get him hooked up to the feeding tube that runs 8-10 hours and oxygen that runs all night.
This is a weekend-type day. During the week tests and procedures can interrupt and add to the schedule.

The best time of day for Mike is generally afternoons. He gets unhooked between 1 and 2 and usually has another Med around 4ish and then is unhooked until 7-8 p.m.

That's about all for now on Mike. Facebook him or drop him a card or a call if you get a chance. He so appreciates the support and pray for his continued patience through all this. It is hard to be so tied down. It is hard to be sick. It is hard. Peace. Peace. Peace. Love you.

***************************************

Richard had his first soccer tournament yesterday and yep, I'm a soccer mom! What next an SUV? Just kidding. It was fun. The team took 1st place in their Division!! Go Panthers! Richard scored a goal in the first game that I missed. I was able to catch the last two games. As I walked up and saw all these moms in blankets, hats, and mittens I knew I was out of the car pool loop. Man, the things you gotta learn on the streets. Thankfully, by the time I got there people were shedding their mittens and hats. I will know next time. The kids played awesome. Better yet, I

was so impressed with their sportsmanship. (In the picture above Alissa snuck one past the goally and into the net!) Not one bad incident. The parents behaved very well too. ;) Lots of energy on the sidelines. I sat next to Regina so I would know what was going on. Thanks for the constant screaming, I mean updates :)!

This is the first year Richard has played soccer. He seems to really be enjoying it. He scored two goals at the game Wednesday night. I was so happy I had the day off and got to see him. The kids are all really working hard as a team. (Love the pic below - the boy can jump!) Parents click on any picture if you want to see it larger.

Proud soccer mom :)

P.S. We were so thankful to hear at church this morning that Ginger received her new lung. Blessings to you and your family for a continued speedy and full recovery. Peace.

Please consider being an organ donor. Blessings to you!

No mama, Mikey is SICK!

I’m so sorry I missed the comment/question from my post “Am I going to die from CF?” SSK wrote, “I am fielding these questions from one of our older children regarding our little guy's CF. Did you have these type of questions from your child's older siblings? How did you handle it? Blessings....” Yes, I have had these questions and I approached them the same way I did Mike’s (my child with CF) similar questions. It is funny, really, how smart and intuitive children are. They really know and see so much more than we would expect. Oddly, I can remember the very first conversation I had with Katie about CF. Probably because it was so profound and she was so young. Katie and Mike are less than 13 months apart in age. She really doesn’t know life without her brother Mike. They were extremely close as youngsters, almost inseparable, except for the CF, until about age 12. Katie was extremely articulate at a very young age. It was amazing that Mike ever learned to talk at all because Katie always wanted to do all the talking for everyone – especially Mike.

Anyway, this particular conversation happened when Katie was between 3 and 4. Mike would have been 2-3. I had just finished giving him therapy (pounding on his chest for about 35-40 minutes) – you all remember the days of manual chest poundings several times a day. Mike was getting sick and we were in what I termed “crunch mode.” Crunch mode meant Mike was coughing more and more and I was pounding 3-4 times a day and sometimes in the middle of the night if he couldn’t stop coughing. We didn’t have pulmozyme in those days. We were finished pounding and Mike ran off to play. I was sitting on the floor. Katie walked over and said, “Mommy, Mikey is sick.” And I said, “Yes, honey, Mikey is sick,” very nonchalantly pretending it was no big deal. Katie put her arm around my shoulder and said, in a very low, informational tone , “No, mama, Mikey is SICK!” I looked up at her and I said, “Yes, honey, Mikey is sick,” in a very compassionate voice. Our eyes met and there was an unsaid understanding between us that he wasn’t just “normal” sick but SICK. She knew. She understood. But the conversation that followed was truly amazing and again I can only praise and thank God for giving me the words and leading the conversation to where it went.

“Mommy, if you can’t make Mikey better, than we will take him to the doctor and the doctor will make him all better?” she said, with a hopeful tone. She had endured many hours at doctor’s offices being patient while Mike endured tests and procedures. “Yes, if Mikey gets sick and Mom can’t make him better then we will take him to the doctor,” I said as reassuringly as possible. “And mama,” she continued in a somewhat matter of fact yet inquisitive voice, “if the doctor can’t make Mike better than we will take him to the hospital and the hospital will make him all better?” Katie had also watched mom disappear for weeks at a time as I took Mike to the hospital and she would come to visit. I was amazed at how well she understood the routine. I was almost saddened and sickened that this “routine” was obviously seeming “normal” to her. Was I really talking to a 3-4 year old? “Yes, honey,” I continued to reassure her, “when the doctor can’t make Mikey all better we will take him to the hospital and they will make him all better." And then came the question I was unprepared to hear from a child so young, “But mama, if the hospital can’t make Mikey all better, who will make Mikey all better?” Her voice was very serious as those big blue eyes pierced my soul waiting to hear the comfort that all was well. In a very cheerful yet decisive voice I said slowly, “Well, when mama, and the doctor, and the hospital, can’t make Mikey better, then Jesus will take Mikey and make him all better!” A big smile came across her face and she almost jumped off the floor with excitement. She said in a jovial voice, “Ohhhhh, Jesus will make him all better! OK, mom!” Almost as if she were thinking, oh, of course, how did I forget? She ran off to play.

She was comforted that God was in control. She never asked anymore questions. It was understood. She is 28 and now she comforts me with similar words. I can’t tell you how reassured this makes me. When God gives you the “right” words there isn’t a need for a lot of words. I believe she never brought it up much after that because she has a strong faith and she saw the same in Mike and me – she understood. I’m sure the understanding of those words has changed as her faith has grown and matured but there was never a need for further explanation. The words would have been the same. The words are the same. 1 Corinthians 2:13 “This is what we speak, not in words taught us by human wisdom but in words taught by the Spirit, expressing spiritual truths in spiritual words.”

I believe anyone could use similar words for any age of child. My son Richie is 10 and he is just beginning to ask questions about why Mike is in the hospital so much. Because Mike is an adult and takes himself to many of the doctor and hospital visits, my younger two haven’t felt the impact like Katie did. I haven’t had this conversation with Richie or David yet but getting close with Richard. I anticipate the conversation to be similar. God willing, He will give me the right words.

Skk, I hope this helps you. One way or another Jesus will make it all better. I don’t know what the future holds but I know who holds the future. God is working this all out according to His plan. We are not sure if that means a transplant, or a cure here on earth or in heaven but we are confident in His plan. Peace. I am thankful for the continued strengthening God supplies me through His Word. He supplies us daily. Blessings to you!

One Day at a Time

It has been a while since I updated my blog. Goodness so much is going on. I started my new job; we decided to sell our house, Gary got married; Mike went back in the hospital; Jean came to visit from Dallas; Mike came home on IVs for a week; we decided NOT to sell our house; David had eye surgery; and school started. It all took me so very close to the edge but God is so good. He is faithful and provided the strength and people exactly where and when we needed them. I am again, grateful and humbled by the goodness God shows us through people he puts in our path.

First, as I promised, I will keep Mike at the top of my blog to update everyone. Mike went into the hospital this past time (July right after his birthday) with an FEV1 of 28%. Heartbreaking. He was disappointed that his function got so low. He was trying to get in before they got so low, hoping that he would be able to stay more on top of things in hopes of coming up higher at the end of his course of IV antibiotics. Unfortunately, his cough started getting so bad he couldn't keep much food down. He dropped a lot of the weight he had been working so hard at gaining. He said he could not handle another two weeks in the hospital in isolation. He did one week inpatient and came home and did another week at home. He is a fighter. I was overwhelmed by my new job and didn't help him at all. I know Missy is a big help and I so appreciate others that pitch in. Thank you all. Thankfully, when Mike returned to have his port flushed and do PFTs his FEV1 had come up to 50%. While living daily on only 50% of the lung function we are all used to, Mike is always so thankful to be out of transplant range. There is a big difference between that 28 and the 50%. That is for another blog post. We continue to appreciate all your prayers of support and words of encouragement. Mike is dancing again. He has been doing protein shakes and using his feed tube and has gained back some weight. He looks good. He has a couple of great opportunities with dancing coming up and I'm hoping to find some balance so I can see him dance. God willing. And if you ever get the chance to see Mike and Missy dance, take it. It is awesome. They dance as one and it takes my breath away. I am going to try and video tape it soon. Frank and Julie you have done an awesome job! Missy and Mike - keep up the hard work!

My new job is great and hard and overwhelming and fun and . . . The learning curve is difficult. Partially because I am a bit of a perfectionist and I want to know it all now and be as productive as possible. The other part is because it is a new position so there isn't someone there to "train" me. I am trying to find out where I can best help and support my boss. I'm learning as much as possible and applying my experience. I have to say I have a wonderful boss who is very supportive and complimentary. We seem to really connect and work well as a team. I am also blessed to work with some incredibly talented people. It truly amazes me. Most companies I've worked for have at least a couple people who can kind of be annoying because they don't care, or they just lack skills or drive. I still haven't met anyone like that where I work. I am in awe of the talent I get to work with on a daily basis. I'm learning a ton from all these people. What a blessing for me.


In July this beautiful couple got married. Congratulations to Gary and Chelsea. It was just a beautiful day, a beautiful ceremony and a memorable day of family and fun. Gary and Mike were in the same class in grade school. During the video when I saw pictures of Mike and Gary together as kids I got choked up. I looked over at my sister and could see by the look on her face the emotion that only another mother could sense. So happy for your child and his accomplishments - all tangled up with the emotion of closing a chapter in your life while another one opens. Gary will always be special as I got to see him grow up more closely than I have gotten to with other nieces and nephews. I remember the computer lab I monitored while Gary and his friends practiced typing. Seems like yesterday. May God bless your life together Gary and Chelsea!



The end of July a friend of mine came to visit from Dallas. We haven't seen each other in years. It was difficult to try and plan time together given all the things that can come up that can't be controlled in my life right now. But Jean and I decided to just go for it. We set a date and she got airline tickets. It was funny because sure enough, as soon as the flights were booked I was offered my job. Mike was in the hospital when she came but we planned for this too and Jean flew into Madison. I picked her up at the airport and we headed right to the hospital to see Mike. I had been at work all morning and then at the airport. Jean had just been stuck on an airplane for a few hours so we needed to gown up to be sure Mike was safe from germs. I didn't want to take any chances. But we still had fun and grabbed a quick picture. Of course there wasn't a nurse around but we got a goofy picture. Thanks, Jean and Mike for putting up with my photo fetish. Jean and I left the hospital and walked up and down State Street. Jean bought me dinner and then we ran to the grocery store and she bought some excellent wine and beer and we came home. We just hung out and had such a wonderful time. It has taught me that I need to take time to refuel. I am so thankful to have friends like Jean who help me slow down and smell the roses (or the incredible red wine ;)). On Saturday I allowed myself to be pampered. (Thank you to Angie and her family for the gift certificates - they were finally put to good use!) We had massages and I got a pedicure and Jean got a manicure. We laughed and caught up and reminisced. It was awesome. On Sunday she helped me figure out my benefits for my new job. That was so kind of her to help because I was overwhelmed with it all at the time. The advice she gave to Paul and I is so appreciated. Thank you so much for all you did Jean. Love, love, love you girl! I can't wait until you come again!

The beginning of August was hectic with Mom working full time. David needed his fourth eye surgery and I was torn. Again, God provided. My friend Gail came over and spent the night and she and Paul left with David at 5 O'clock in the morning and headed to the hospital in Sheboygan. I went into work. This was such a difficult decision. David came out of surgery kicking and screaming like he did the last three times. Gail's help was immense. She and Paul worked together to keep David from rubbing his eyes and settled him down. After being drugged and taking a long nap they were able to bring him home around lunch time. Gail is a saint for giving her love to my child in this way. God has blessed me with such awesome friends. David was bright eyed and untraumatized by the experience by the time I got home from work. While I wish I could say his eyes are perfect now they are still better than they were. We are praying he won't need any additional surgeries and that too is a blessing. Thank you for all the help Gail! Love, love, love you!

August means the beginning of school for us. This also meant another transition. Paul went back to work and the boys are all off in school now. Here are some pics of the yearly tradition in our house.

Richie is a big "upper grader" now. He started 5th grade with Mrs. Albrecht.

Gage is 7 now and in 1st Grade with Mrs. Lauber. I also got a picture of Gage, with his Mom (my daughter Katie) on the first day.



And yes, my baby started Kindergarten. His teacher is Mrs. Wilsman. God bless her!

For those of you new to my blog, Katie is my oldest and her son Gage goes to the same school as his uncles. It keeps life interesting. Gage and David get to see each other at recess and Richard gets to help by getting milk for the Kindergarten class when it is his turn. Below I snapped a picture of Richie, hubby Paul (right) and Mr. Woldt the principal. Jon and Paul were classmates in college. He also taught Katie and Mike years ago. It is a small world.



The blessings we have been given are immeasurable. God has seen us through so much and continues to provide for us on a daily basis. We are thankful. These past few months have been particularly hard for me as I have started my new job and so much has gone on. So many people have been there for me. A couple of friends of mine, Leslie and Pam, brought over dinner one night. I was almost to the breaking point as Mike was getting ready to be admitted to the hospital and things were so hectic at work. What a blessing to come home and find a kitchen full of food and goodies. Thank you ladies! You are the best!

The demands on my time are greater than they have ever been. I have a lot of work to do. But I am having fun. I have the most awesome friends and some of you I have neglected lately. I thank you for your understanding during this trying time. I hope to be able to connect soon. Peace and love to all of you! Your support means so much.

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To an old acquaintance, Joyce, please know I am praying for you as you again battle cancer. God give you peace, strength, and healing.

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And in closing, if you have a moment please watch the following clip. And please consider being an organ donor. THANK YOU!

http://www.mlive.com/news/grand-rapids/index.ssf/2010/08/sparta_mom_awaiting_lung_trans.html

Blessings to you!

Good times with Family - Happy 4th

Happy 4th of July everyone! Just wanted to share some pics quick from the family gathering we had on Friday night. Erica and Bart were in town with their 4 children. Here they are pictured from left to right: Elsa, Hans, Bart (Pastor) Erica, Eva (on her lap) and Elena. Sorry if I misspelled the names. Erica lives in Michigan now and we don't get to see her very often. I think the last time I saw them Elena was a baby. So fun to see how much those little girls look like their mom!

The kids had fun in the sandbox and on the swing set and getting to know each other. COUSINS - took me back to when I was a kid. Visiting cousins was the best!!

Turned on the sprinklers and the kids had a blast. Kids and water - fun start to a holiday weekend.

Paul is heading out with Richard to buy some "thunderworks" for the boys! David is wondering if he will get sucked into the sky if he watches them tonight. He is also concerned that he will get more ba-skeeto bites. Oh to be five!

And even grandma Joyce came to the party!! It was a great night!

Happy 4th everyone. We are so blessed to be Americans. God bless America!! Enjoy your weekend!!

I am humbled and honored! And Little Chute

Praise God, Praise God, Praise God. I have so much to be thankful for. God's mercies are new every morning. I received and accepted a job today. At an awesome company - J.F. Ahern. Just a wonderful opportunity and a blessing for our family. They have excellent benefits and have been a top choice for places to work in this area for the last several years. I am just in awe of how God has blessed us. While so many companies have cut back they are growing. They are fire and mechanical contractors at the top of their industry. I am almost speechless.

Among other blessings received - Piper got her lungs. I wrote about her in a previous post and God has blessed her with a new chance at life with the gift of donor lungs. This young woman near death was spared because of someone's selfless act to become an organ donor. My prayers are with the anonymous donor and family. Through their tragedy they found it in their hearts to bless Piper. God bless them. Again, I am almost speechless. And Piper is not taking this gift lightly. She is working extremely hard to use this gift to its fullest. She should be out of the hospital soon. Check out the link to her website (click on her name above) to read more about it. She is already posting on her blog.

And yet another blessing, neighbors. But not just any neighbors, neighbors from Little Chute. Facebook is such an incredible blessing when you can connect with people who at one point in your life were such a blessing but then with time and space you drift apart. When I think of the parable of the good Samaritan I am reminded of my neighbors in Little Chute. This small community embodies the true Biblical sense of neighbors. I can remember it like it happened yesterday the days leading up to Mike's diagnosis with Cystic Fibrosis. Katie was less than 13 months old when Mike was born and I had my hands full. Countless hours were spent walking the floors with this screaming baby who was literally starving to death in my arms. When he was finally admitted to the hospital, his father Mike, Sr. and I were exhausted. We needed people to watch Katie so we could be with Mike. Everyone pitched in. Family, friends - we were covered. And then a few days later we heard the words Cystic Fibrosis. I quickly looked it up - we were devastated. Mike was slipping away. Doctors told us we needed to get him to the hospital in Madison (2.5 hours away) first thing in the morning. "Be packed and ready to stay for at least two weeks!" I remember my mom staying in the hospital with Mike so I could go home and pack. I got home and looked at the HUGE pile of clothes on the basement floor next to my washing machine. Pack for 2 weeks? I would need to get Katie ready too. I was so far behind. All those sleepless nights - I was exhausted and I only had a few hours. I was emotionally drained wondering if my son really had this fatal disease.

The doorbell rang. It was my neighbors asking what they could do to help. They had heard Mike was critically ill. My neighbors, Megan, Kay, Julie and others I can't remember, picked up my dirty laundry and took it home and brought it back in less than a couple of hours - folded and ready to be packed. That is love - cleaning someone else's dirty laundry! Yes, that still brings tears to my eyes. They did that for me and my family. I have just recently found Kay on facebook. Big hugs and blessings to you. Below are Katie and Mike with their first friends from next door. God is so good. He gives us just what we need, when we need it and I am in awe tonight of his continued blessings in my life. So excuse me for gushing and thanks for listening/reading.

And to our old friends and new friends welcome - it is good to see you!

Blessings!

Stacey, Katie and Mike -Katie, Stacey, Adam and Mike

The 5th Anniversary . . .

Of the day Dr. Massick saved this little boys life.

That is how Paul usually refers to David's birthday. And rightly so. Actually, it still sometimes amazes me that he is here. Divine intervention for sure. We are thankful.

After 5 miscarriages I said enough. We tried so hard to give Richard a sibling close in age. In fact Katie and I were pregnant and due just a few weeks apart. Everyone thought this was the next generation of Duane and Shellie. But then I miscarried and said enough. I felt that God had blessed me with a grandson and I was happy with that. Richard would have a nephew close in age instead of a brother. Truly a blessing but God had another plan.

I was more than just a little surprised to find myself pregnant at 44. It was a little scary going through the pregnancy. But all seemed fine going into the delivery. There I was with my friend Kamala as my doula and Paul there for support, certain that even though I was 20 days away from turning 45 I could get through natural childbirth one last time. But again God had another plan. Davids chord prolapsed and there we were uncertain of the outcome as I watched his heart rate drop dramatically. Dr. Massick moved quickly and doctors and nurses ran. A nurse pushed back on David's head to relieve the pressure that was choking the blood and oxygen from his chord. Minutes seemed to drag as I waited for his cry. There was a small complication and Dr. Massick pressed on. Finally, as Paul was walking into the room (thanks to Kamala) we heard his faint cry. They took him away and I told Paul to follow him. He would know what to do if anything went wrong. David was fine. He perked right up and they watched him for a while and said there didn't seem to be any problems. Divine intervention for sure. We still praise God for his blessings.

So for David it is another birthday. A special birthday turning 5! A birthday that means he will get to go to school next year with his nephew and brother. A birthday that he was sure meant LOTS of presents! He wasn't disappointed. Unless you count the fact that a couple of the bags contained clothes that he wasn't thrilled about. But he won't even remember that next year. He will just remember that he got lots of presents. Some of which we may use again next year when it comes time to anti up "lots" of presents ;). And in years to come when I look back at the video I don't know which will be more endearing, hearing him say, "What, you gotta be kidding me!" (when opening, to his dismay, the shirt and tie) or his proclamation, "This is a great birthday!" while waiting for the next present to be handed to him. He is such a character!

Thank you grandma Kristi, grandma Nettie and grandpa Bob, Uncle Mark and Uncle Jeremy for helping to make this a special day for David. Hard to believe the planning didn't start until late on Wed night when Mike called and said surgery wouldn't be until Monday. I couldn't have done this without all your help!

Blessings!

Last Day of School

Can we have a couple of thumbs up for that?! This is SO Richie (on left - friend Kyle with him) - happy it was the last day of 4th grade. He is ready for summer! He is now an official upper grader!! (Well after the closing service tonight!) I'm still hoping to get a pic of Gage with his teacher tonight. It is on to 1st Grade for Gage :)

Dad will finish tomorrow.

And it is a special day for Grandpa Bob - Happy 70th Birthday!! Nettie and Bob are two very special people who have been helping with David through all of this. They have been such a blessing to our family. David loves his little trips to Grandma Nettie's and Grandpa Bob's house! Thank you so much for helping and making David feel so special! XXOO

Mike got a room! And a really nice room at that! It has been a really long time since Mike had a decent room. This may not seem like a big deal but when you have to stay in it with the the door closed (isolation) for 14 days it really is a big deal. For the past several hospitalizations Mike's room hasn't been big enough for two chairs. With all the equipment in the room you can't walk and when someone comes in the door you have to stand up and move stuff out of the way.

Do you like my new button to the left? I still have one more to go. More on that later.

It's a new day

It is a new day and I am so thankful to have peace.

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Started the day with a quick trip to Wal-Mart to get all those things that Mike likes to take with him when he goes on his two week trips to his favorite Wisconsin Resort. Yep, Mike is getting ready to go. Click here to read about how that works. (If you click on the picture you should be able to read the journaling.) We are all stocked up on ketchup, hot sauce, pay day candy bars, oreos, Kleenex, chapstick and chips.

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I am armed with a list of questions for his docs - thanks to the wonderful CFers we have met online. Hoping to get more answers. Mike is hoping to get relief from the hurting port and get his feeding tube changed to a MUCH smaller one. And of course he wants to breathe better - he is having trouble going up and down the stairs so it is time for IV antibiotics.

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David is all set to see another pediatric opthalmologist in June. My mom helped me by researching and finding the telephone number so I could make the appointment. That was such a huge help. It is little acts of helping like that, that encourage me and lift me up - helping me to feel like this is all manageable. God is so good. He gives you exactly what you need exactly when you need it.

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My sister Terri stopped by last weekend and brought me a book. Something to read just for fun - what a novel idea. Okay that was really over the top but seriously, I never read for enjoyment.

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Today when I opened my email there was a lovely message from someone who just wanted to encourage me - what a blessing.

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I have so many questions about CF and the aforementioned wonderful CFers online are taking time out of their busy lives to answer my questions and help me understand. Bless them.

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What we are going through seems so trite compared to what others are facing. Go here to read (and say a prayer for) Jim a CF patient who is going through his double lung transplant recovery. And you all know others who are having a rough time. It is just so reassuring to know that no matter what we are going through - big or small - there are people here to encourage and support us. So thank you all for the encouragement and help. This is a huge step for me - asking for help and accepting it.

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This is what made me smile today.

Mom: David, what do you want for lunch?

David: Spaghetti O's!!! (I throw them in the microwave)

David: Blows, and blows and blows on them.

Mom: David, eat your lunch before it gets cold.

David: Mom, I need you to put it in there (points to microwave) and make it warm!

Mom: I just did make it warm.

David: No, you made it hot! I want it warm!

His innocence and inexperience always warms my heart. I'm trying to take his advice and laugh more :). This little guy will turn 5 next week. Five is so special. I better be getting busy planning a special day. Today he says he wants a pool. This will change every day until next Friday I'm sure!

This is David showing me what he learned to do at school when the tornado siren goes off.

It's a new day - make it a great one!