BOO . . .

. . . from our little monsters.

This is what the hood looks like on Halloween!

And these were treats for the boys from the neighbor! Thank you Cindy!

The boys had a good time!

Now what are we going to do with all of this?

Joy, Joy, Joy, Joy, Joy! Peace to you.

Raw Honesty

Some days aren’t so bright and shiny as our friend Sarah says. I guess today is my day to be not so bright and shiny. Actually, it has kind of been my weekend.

Friday night I got to go to school and be a chaperone. I was looking forward to it - right up until Paul couldn’t join me because his back was hurting, meaning – yet one more thing we would do separately (not to mention missing the wedding we were invited to). Then I got there and a woman started to talk about how she was still sick after being sick all week. My thoughts started being selfish. I started wondering if I would be exposed to nasty germs. Someone had to go upstairs and help with concessions. I got out my anti-bacterial lotion and dosed up. The woman next to me said something and I was blunt. That’s not like me. She got big tears in her eyes. People can’t handle our pain and they shouldn’t have to. I felt badly for having said anything. I was thankful she offered to go upstairs. I could stay by myself and be the hall monitor. Pretty germ free.

I had a conversation with Mike yesterday. To be perfectly honest, Mike hasn’t made his decision about transplant yet. He is keeping his options open. He originally wasn’t all that keen on the idea. He remembered our CF friend named Doug who had a transplant and never made it out of the hospital. Doug spent 11 months in ICU. Mike had old, bad information. I felt badly. I didn’t realize that at only 8 or 9 years old he had picked up on some of what was going on. During Mike’s original transplant conversation his doctor asked what he thought. This was his response, “Well, some people say it’s great and others say, why build yourself back up just to go through it all again. I don’t know,” he shared honestly. He was trying hard to articulate his thoughts. I knew exactly what he was saying. So did the doctor. Mike is very thankful to have more time to think about his decision. It is a huge decision. He is not taking it lightly.

I told him that I would give him information. I promised to be real and let him know the good and the bad. We have been following Jim and Piper. They have had struggles and triumphs. They are heroes to me and I am thankful that they are allowing us to follow their stories. I found another perspective. I promised to share it all so this is what I shared with Mike:

I just felt today - again - like I feel so often. When will this end? When do I get a break? When can I feel better for a little while? And after seeing so many friends die, horribly, post transplant, I've ruled it out for myself, for now... after long deliberation. I reason that I want to die of CF, not of kidney failure or rejection - or worse, on the table as they slip in my lungs-to-be. I don't want to have to get so sick I am nearly dead... and to hope and pray for someone else to die. But on days like today I wonder... should I die twice, so I can live once?

Mike repeated the words, “should I die twice, so I can live once? That’s a really good way to put it,” he said as he smiled, pleased to have words now to articulate his feelings. I told him that a few months ago someone wrote in one of the forums that they wished they could see the “other” side of transplant. She explained how she could find a lot out about having a transplant but couldn’t find out a lot about the people who chose NOT to have one. Someone typed back something along the line that there wasn’t a lot out there . . . well, because a lot of those people are gone – stating the obvious. Mike and I laughed really hard. Now we’re not dissing anyone here. I guess you have to truly live with this day in and day out to understand. Everyone in the forum totally understood. No one was being a smart a$$ or anything. It just is what it is. I asked Mike if he had made a decision. He shrugged his shoulders. “Sometimes I think yes, it all sounds great and everything and other times . . . I don’t know,” as his voice trailed off. I told him I understand (as much as anyone without CF can). I will support whatever choice Mike makes 100%. I do NOT want to sway his decision one way or another – I really don’t know what my choice would be if I were in his shoes.

Today was church. The sermon was about forgiveness. I am thankful I am forgiven. There was a bake sale after – we steered clear. We took the little guys out for brunch. It was a buffet and I about had a meltdown. I can NOT do buffet’s anymore. Everyone touching the same utensils, no shield over the food. David spilled his milk and I swear we can’t leave a restaurant unless he has slid under the table or booth, touched the complete underside of the table, found and picked up every nasty thing on the floor . . . basically, being a normal 5-year-old boy.

We got home and I was agitated. I am tired of the thoughts that cloud my mind. Tired of the thoughts that can turn into temptations and sin. Thoughts about things like germs. Thoughts of the memories about the day we started talking about transplant and the doctor pointed at David and said, “That is your biggest risk.” I don’t want to think about risks of infection. I don’t want to think about insurance and Medicare. I don’t want to wonder how long we have until decisions have to be made. I don’t want to think that my son has to make life and death choices. I don’t want to think about how long he has left. I don’t want to think about whether or not I can or can’t help others because I might share germs with them or they might share germs with us. I don’t want to think about. . .

And I look at Mike and he is such an inspiration. He continues to fight. He continues to be positive. He continues to be real. And I learn from his example and I am forgiven. Just like the sermon reminded us. Mike is brave and he is a soldier. I am reminded to be thankful.

Today I am mourning the loss of innocence. The loss of freedoms and choices.
It isn’t good or bad.
It is real.
I will continue to pray and my heart will be healed – through forgiveness. Tomorrow is another day.

Psalm 28:7 The Lord is my strength and my shield;

my heart trusts in him, and I a helped.

Blessings to you.

P.S Sorry Becky for being so blundt. I was overwhelmed in these thoughts. Thanks for your understanding. And Seven Stars, who wrote the words above, thank you for your raw honesty.

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.
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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.

The Agony of Defeat

Unless you have an awesome coach like Mr. Zunker. Today was one of those tough lessons in life. One of those occasions you wouldn't wish on your child. Yet a time where you see a defining moment for your child unfold in front of your eyes. Would this be a positive or negative experience? Most likely lasting . . . either way. As a parent you understand the importance of life lessons - no matter how hard to endure.

Richard had a soccer tournament today. David was running a fever so Paul stayed home with him. I got to go to the game. It was so awesome to see him play. The kids all played hard, worked well as a team, and no one got hurt. The third game was tough. After two games the kids were getting tired. They continued to play their little hearts out. Fifth and sixth grade girls and boys. So fun to see the progress they have made through the season. Richard had never played soccer before this year. He loves it and it shows. He tries very hard and gives his all. In the third game the score was 1 - 1. They had won a game and lost a game. With the score tied and only seconds left in the game the ball was down in front of the goal. Richie jumped high into the air and headed the ball into the goal for a tie breaking score . . . . . for the other team. Yep, you read that right. With only seconds left in the game he headed the ball in the wrong direction, over our goalies head and into the net. I saw the goal but didn't see his header.

I walked over to get Richie and his look told me something was very wrong. I thought he was hurt. He said something about the ball hitting his head and going into the goal. I still didn't get it. He could hardly talk. He put his things in the trunk of the car and would hardly look up. I tried to ask again what happened and he said never mind and slammed the car door shut. This wasn't my Richie. As I started to get in the car Mr. Zunker came running up to the car. "Is Richie all right?" he asked. I thought oh no maybe he IS hurt. Mr. Zunker continued (he didn't see Richie was already in the back seat), "I don't want him to be upset about what just happened. He's had such a great season, I don't want it to end on a bad note." He then realized Richie was in the back seat and looked at him and continued, "Richie, that could have happened to anyone, it wasn't your fault. It just happened. This happens sometimes. You had a great season and played really well. I don't want you to think about this when you think about this season. I want you to think about what a great season you had." He then looked at me and asked, "Richard hasn't ever played soccer before this year?" I told him no. "That's really amazing because he has really done a great job. It has been a pleasure to coach him. I really hope he can put this behind him and think about what a great year it has been."

Now I'm not remembering the conversation exactly word for word, but that was pretty much the gist of it. What an awesome man. What an awesome coach. What a caring person to come and catch us at that exact moment to ease Richard's pain. It changed Richard's entire attitude. On the way home Richie said, "Well, I guess I go home now and start to practice basketball." Wow, this could have been a completely different 45 minute ride home.

Thank you Mr. Zunker!

Thank you for taking the time to make a difference in my child's life.

Thank you for taking the time to coach these kids. What a wonderful example you are to them.

At this age, an experience like that could have made Richard afraid to put himself out there and decide not to try again. Instead it was a learning and growth experience. A positive experience. He is looking forward to trying to play basketball. All because a man saw value in touching the life of a child. I am so thankful Richie had this experience. Thank you, thank you, thank you, Mr. Zunker.

Great season Panthers!

Gail and Karrie - thanks for coming to the game! It was great to see you!

Off of IVs and thankful

Mike got off of his IVs today and they pulled the needle from his port. He is thankful to be at the end of another round. The numbers came in as follows:

FEV1 = 46% 1.98L

FVC = 50% 2.932

FEF 25-75 = 25% 1.189L/S

Weight is still down. No more to say here. Wish it could be better but we are thankful for what we have. Thankful for peace. So much to be thankful for and we will focus on that. Mike just left to go work out. A fitness club in town gives him a free membership every year. See what I mean - so much to be thankful for.

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In other news - I thought I would share some pictures.

These little guys participated in a mutli-school cross country race the other day. For Gage and David it was their first one. They all did great. Very proud of their ribbons!

David nonchalantly running across the finish line - he took 7th place.

Gage ran his little heart out - he got a participation ribbon.

Proud daddy over to the right watches Gage get his ribbon.

Richie had to run a whole mile! He took 5th place.

There were 30 - 40 participants in each class so I'd say they did a great job! Congrats boys.

Thanks for continuing to support us on this journey. In the past several weeks I have enjoyed some incredible fellowship with many special adults. I love my kids - can't ever deny that but I am thankful for these times to be able to get out and about without the little ones. It has been refreshing. It has been a long time. A couple of weeks ago I got to have dinner with grandma Nettie and grandpa Bob and grandma Kristi. We had a really long wait for our food but it gave us an opportunity to chat and laugh. Nettie made us an awesome cake which the boys devoured promptly - thank you grandma Nettie. And Kristi gave me the nicest birthday gifts and Badger shirts for the boys - thank you!!

And mostly, thank you all for understanding when I fall off the map and lose contact and get overwhelmed. I owe some people a phone call or a visit. Thanks for understanding and hanging in there with me. Love, love, love to all. Take care - blessings to you!

I Prayed for Him

This is what over $6,000 worth of medicine and IVs

in your refrigerator looks like :)

Mike update: He is home. He came home on Monday and I'm really sorry I didn't blog and tell family sooner. I'll try to do better in the future so you know where he is and can make plans to visit or send a card. He is still on IVs and will go back to Madison on Tuesday and repeat his PFTs. I will post those numbers this week. We are playing the game of; ask the doctor - call the insurance; call the insurance - ask the doctor - game. Really not much fun. Mike needs a new neub machine and cups etc. He asked at the hospital and they told him to call his insurance company. Are you kidding me. Since when do you call an insurance company to get new medical equipment. I guess I will have to do the 20 phone call thing to get it going. Another opportunity for me to practice MY patience.

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I prayed for him. But not just in the way you are probably thinking. Yes, I pray for Mike and all my kids on a regular basis keeping them close to my heart. But I mean I prayed for Mike. Let me explain.

I was 22 when I gave birth to Katie. What a blessing a child is. She was an exceptionally good baby to boot. I was blessed. She slept through the night at a couple weeks old, was perfectly healthy and happy all the time. This parenting thing was the best. I remember going into work one day a little teary eyed and bewildered. Four other women there had just had babies also and they came to work pretty ragged. One of them quipped to me, “Oh, what’s the matter, did your perfect baby finally keep you up last night for a change?” “No,” I quietly offered back, “actually, I got home at 5:30 last night and she was already asleep for the night.” “What is your problem?” the young mother quipped sarcastically but in fun, “I’d love it if my daughter slept at all!” “Well,” I continued a little choked up, “when I left this morning at 6 she still wasn’t awake. I never got to see her.”

I spent Katie’s first three months of life at home with her. It was so much fun being a new mom. One of the nights when Katie went to bed early I turned on the TV (I know shocking for me I really have watched the thing a time or two in my life) and a documentary was on. It was about special needs/handicapped children. The images are still in my mind. They gave story after story about special needs or handicapped children. They told how many of these children were physically and emotionally abused from infancy on. Exasperated parents unable to cope with the painful screams or behavior of these special children cracked under the pressure and hit, kicked, neglected and otherwise abused these children. Blind, deaf and diseased, defenseless children. I was sickened. I walked into Katie’s bedroom and peered over the crib. She was beautiful. How could anyone hurt a baby?

I went to bed that night and lay awake thinking about the images I had seen. As I was praying, before I fell asleep I can remember praying these words, “God, if you have to send a special baby down here, then give him to me, I’ll do all that I can to see that he isn’t abused." The words of a special poem I had once read ran through my mind. I couldn’t remember all the words to the prayer/poem but I knew it told of how special these kids were in God’s eyes. ------I was either just pregnant or about to get pregnant with Mike.

I remember all the screaming as Mike was slowly starving to death in my arms. I can remember winding up the baby swing and pushing the swing while he was screaming. I would talk to him to try and calm him as I hurried to feed Katie. I would finish and hurry back and pick Mike up as he was still screaming. Screaming from hunger. I can’t imagine the pain he was enduring. It almost broke me but I continued to pray. I prayed for Mike – for the relief of his pain and a diagnosis to make him better. I prayed for strength to continue to care for and comfort him. I prayed for all those other parents – my understanding was new and less judgmental. I still pray. I have not been a perfect parent but God continues to forgive me and bless me. I love being a mom. I wouldn’t trade any of it.

God continues to answer my prayers. He continues to give us just what we need when we need it. These last few years have been long and lonely. They have been full of love and laughter, sorrow and stress. And God continues to provide. Yesterday I checked in on my sister Lynn to “see how the other half lives” and we laughed really hard. Kristi sent me a joke that made me laugh until I cried. I got to go to a party with a bunch of people I work with and got to talk with real live adults. It was fun. John and Sue were wonderful hosts – they had a band and food and cake. It was awesome. Thank you! Thank you Sara and Nicki and Pete for encouraging me to go. I am refueled and full. I am grateful for all my blessings. I got a few emails from people who care and share their love. I am humbled. Thank you. Each and every one of you – thank you for taking the time to bless my life.

And in closing I will share the poem/prayer. When Mike was diagnosed with Cystic Fibrosis they told me he was considered to be handicapped because he had a fatal disease. I remembered the poem – I went on a search that took more than a year to find it. I no longer have the little card it came on, but the words are written on my heart. So from memory here is Heaven’s Child (sorry if I miss a few words – the memory isn’t as good as it used to be ;) Hope this blesses someone today – it did me:

Heaven’s Child
A meeting was held quite far from earth
It’s time again for another birth
Said the Angels to the Lord above
This special child will need much love.

He may not walk or laugh or play
His thoughts may seem quite far away
In many ways he won’t adapt
And he’ll be known as handicapped.

So let’s be careful where he’s sent
We want his life to be content
Please Lord help us find the parents who
Will do a special job for you.

They may not realize right away
The leading role they’re asked to play
But with this child sent from above
Comes stronger faith and richer love

And soon they’ll know the privilege given
In caring for this gift from heaven
Their precious charge so meek and mild
Is Heaven’s Very Special Child.

If you are caring for a “Heaven’s Child” – God bless you richly in your walk. Remember the words of 1 Corinthians 10:13 “No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear.”

Thank you God, for entrusting me with this Heaven’s Child - for giving me the guidance and strength to continue to serve You. Amen.
Shalom.