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.