The First CF Tear

Mike Update: Mike is all packed and ready to go. Missy took him out for dinner. Wings, at a little bar type restaurant. He won't eat much. Knowing I wanted to post a blog soon, I asked him what he would like me to tell people about how he feels. This conversation followed:

"So Mike, what should I tell people so they understand how you feel?" I said.

"Like crap?" he said softly, kind of half jokingly, propping himself up on the counter in the kitchen.

"Coughing a lot, and tight chested?" I offered for clarification. He nodded.

"Tired and hard to do stuff?" he nodded again.

"Not able to eat much because you are afraid it won't stay down?" he continued to nod.

"Just feeling yucky and sick, basically?"

He nodded and then with a smirk on his face he said, "And thankful that there are rest stops on the stairs." (landings) He smiled and kind of laughed shallowly not wanting to start coughing. He ALWAYS looks on the bright side. I love that boy.

So Mike is exhausted and the infection is out of control. Time for a tune-up. He will be admitted tomorrow. I will post his numbers in the next few days along with the address of the hospital if you would like to send him a card :). We appreciate your prayers and support.

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I started to write a blog post the other day and didn't get back to it. I was remembering back to when we first found out Mike had CF. I was thinking about all this because it came to my mind how different my emotions have been on this CF journey. You would think that I have spent most of my life sad or in tears, but in actuality it is just the opposite. I have never had any trouble laughing. In fact, when I ran in to a co-worker the other day, a woman I had worked with for almost 10 years and haven't seen for a while now, we started to reminisce and instantly started laughing really hard. She said to me, "Gina, that is what I miss most about working with you, your laugh!" What a nice compliment. I love to laugh. I love life. I can have such a good time without much effort. But tears - now that's another story. Those have never come easily. How odd. I thought about this and I remembered my first tear about CF.

Mike had been admitted to the local hospital. He was three and a half months old. He was so sick. He was literally starving to death in my arms. The nurse did a sweat test. The results were inconclusive but questionable. I asked the head nurse if she could find me some information about the sweat test and CF. She brought back a medical book and I started to read. The book said that if Mike had CF he probably wouldn't live to be 18 years old. It said that the majority of children died well before then. The more I read, the more I knew this is what was wrong with my son. I wasn't instantly sad, as I was just so relieved that perhaps they could do something and he wouldn't die in my arms. He was so close. He had been through so much, but that is an entire blog post in itself for another time. I called my mom and she said she would come and watch Mike for a few hours so I could run home and pack. The doctors told me I needed to take him to a CF center which was 2 hours away. The doctor said they would be able to tell me if he had CF. They said to pack and plan to stay for at least 11 days.

As I was waiting for my mom to arrive, I played and comforted Mikey hoping he would fall asleep and stay asleep until I returned. I fed him and then sang him the song I sang to all my kids from the time I knew they were inside me until they were adults.

I am Jesus Little Lamb;
Every glad at heart I am,
For my shepherd gently guides me,
Knows my needs and well provides me,
Loves me every day the same,
Even calls me by my name.

Day by day at home away,
Jesus is my staff and stay.
When I hunger Jesus feeds me,
In to pleasant pastures leads me;
When I thrist, he bids me go
Where the quiet waters flow.

Who so happy as I am,
Even now the Shepherd's lamb?
And when my short life is ended . . .

I chocked, my voice got stuck and nothing more would come out. I didn't even have a diagnosis yet, but I knew, as a mother knows. I knew that Mikey had CF. A tear rolled down my cheek and I wiped it away. Maybe, just maybe, the CF center would be able to save him. I had hope.

Life became a whirlwind and our lives were changed dramatically. Breathing treatments, chest poundings and lots of medicine, doctor visits, and trips to the hospital. And he was alive. And I was thankful. And I am still thankful. There were no more tears. Not a one for years. Not until I watched the movie, Alex the Life of a Child. I cried so hard after watching that beautiful little girl lose her battle to CF at only nine years old.

Sometimes I feel like 27 years of emotion are trying to bubble up to the surface. Sometimes the tears just come now. Pain is, the difference between what is, and what we want it to be. Spencer Johnson. Such a telling quote. There is pain. I want CF to stop making my son and others suffer. Tears and hope. Hope for a cure. Hope for the future and tears. It is hard to talk about CF now without tears. But I still have hope. And I still love life. And I still love to laugh really hard. Mostly, because I can. I am so blessed. But there is pain in watching your child suffer, even if he never complains. There is still more hope than pain and I am thankful. Thankful that the medications are still able to help Mike feel "better." Thankful that I have friends like you who encourage me and help me and Mike on this journey. Thankful that God continues to guide us on this journey.

I have small journals where I have recorded things I am thankful for. I have a book I carry in my purse or briefcase of “happy” pictures. Pictures of people and things that make me smile. Sometimes I have to LOOK for the blessings among the pain and suffering. It is always right there ready to be grasped, just within reach, there for the taking –if only I choose to reach out and grasp it. I am renewed and refueled. My spirit is strengthened and I am full. Thankful. Hopeful. Grateful. Peace.

P.S. And how does the hymn end?

And when my short life is ended,
By his angel hosts attended,
He will fold me to his breast,
There within his arms to rest.

I am comforted.
Blessings to you!