Saturday, October 25, 2014

It is me - Melinda

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

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

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

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

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

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

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

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

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

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

I said nothing. NOTHING

And that is why I am telling you this story.

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

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

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

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

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

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

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

Sunday, October 19, 2014

We Never Whispered Death Away

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Blessings to you!

Wednesday, October 15, 2014

Never Alone

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

And then Mike left.

But not alone.

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

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

God is so good.

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

I am so blessed.

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

I hope you all do too.

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

Blessings to you. 

Monday, October 13, 2014

It was a tough day Momsters

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

For no apparent reason. . .

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

I miss Mike.

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

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

Went into work.

Nothing helped.

Just a tough day . . .

Psalm 23 came to me.

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

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

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

I know, I know, God.

You worried and you didn't need to.

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

Instead of trusting in Me you trusted in other things.

Yea, that was really dumb, God.

Do you trust me now? Do you trust me to take that pain?
You know only I can take away that kind of pain, don't you?

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

And, hey God, thanks for gently nudging me with your rod and your
staff and not beating me over the head with it. I know I would deserve it.

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

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

I feel so much better tonight.

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

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


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

Friday, October 10, 2014

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?

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.

Thursday, October 9, 2014

Modern Technology

Hi everyone,

So much to type, so little time.

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

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

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

Of course, I wanted to make my own.

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

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

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

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

Then Bear came over and he gave me this :

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

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

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

So blessed by this HUGE family I have.

Keep loving it forward people - LOVE IT FORWARD!!

Blessings to you!

Sunday, October 5, 2014


Chief of sinners though I be,
Jesus shed his blood for me,
Died that I might live on high,
Lives that I might never die.
As the branch is to the vine,
I am his and he is mine!

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

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

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

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

Folks waiting to see Mike the day before he passed.

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

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

Why do I tell you this story?

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

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

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

More folks patiently waiting.
I want to tell you another story.

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

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

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

Folks helping out in the kitchen while I was with Mike - bless you!
I have been there and I know I am forgiven. Don't let the tempter take away your peace.

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

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

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

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

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

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

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

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