Saturday, April 18, 2009


And, then, there's Jeffrey... Dan has been dating a tall, handsome, goofy boy named Jeffrey for well over a year now. He has become a regular installation in my household and a part of the family. We all love him. But, I didn't count on having to figure out how to comfort or explain this beast that is cystic fibrosis to a boyfriend.

When the girls were small, and even before Dan was born, I educated myself. I read all about CF. Someone gave me the book, Alex: The Life of a Child to read while I was pregnant with Dan... (Which, by the way, is a freaking horrible book to read if you are 23-years-old and pregnant with a baby you know is going to be born with CF.) I think the person was trying to show me all the realities of daily breathing treatments, medications, and chest percussion therapy (CPT), but all that particular book did was frighten me into my bones. It really is a touching, heartfelt story about a father, Frank DeFord, who lost his daughter to CF in 1980 when she was only 8-years-old. Maybe I will go back and read it someday. Not today... But, someday.

On February 23, Danielle was admitted to the hospital for an overnight stay to have a mid-line catheter placed. This is rather routine for us. What wasn't routine and just a matter of course was the lack of progress she made on I.V. antibiotics. But, much like the Energizer Bunny, Dan just kept going and going until she couldn't go anymore. When we went to a follow-up appointment, her lung functions had dropped to 38%, and she was hospitalized. So, Dr. Sindel changed I.V. meds and kept her in the hospital for a week. She made slight improvement, but nothing to jump up and down about. She came home on I.V. and that little mid-line was like "The Little Engine that Could" because it kept going until we pulled it last Saturday. Mid-lines are really only supposed to last a month or so, and we were just so absolutely over it. But, one week later, Danielle is awfully puny again. She is very winded and breathing heavy and fast even when she is asleep.

However, tonight is her Jr. Prom, and by golly, she will go. We will dress her up and she will be lovely. Her dress will match Jeffrey's tie and cumberbund exactly. I don't know that they will dance the night away. Maybe they will dance and sit and dance and sit. But, CF can't have her prom.

So, on Monday, I will call Dr. Sindel and see what we can do. She is scheduled for a follow-up appointment on April 24, but that won't be soon enough. We'll do what we have to do, and now that I'm writing again, (Thank you! Sanity!), I will post the updates here.

But, I really didn't mean for this to be about the medical side of CF. This is about that sweet, smart, silly boy who shows up at my house regularly, and even brings laundry down and helps take care of Micah. Jeffrey loves Dan, and Dan loves Jeffrey. And, I'm glad. I wanted Danielle to experience everything that life has to offer, and teen love is part of that everything. In fact, when you are a teen, it is everything. However, when Danielle was a baby and I was struggling to make her choke down enzymes in applesauce, I never considered there would be a boy someday who would love her and worry and feel helpless and be looking for answers too. I never considered there would be a boy who would ride with me to the hospital to visit and who would want to go to CF clinic to see how it all works and meet her doctor, just like when he had to stomach the courage to meet her dad for the first time. I never considered Jeffrey... And, I SO wish that I could be more of a comfort to him. Last night, he looked at me and asked, "Is she O.K.?" How do I say, "I don't know"? We have never had a time like this when the illness has just lingered for months. We have never had a time when Psuedomonas Aeruginosa hasn't been tamped down by antibiotics. Usually Dr. Sindel puts on his cape and brandishes his super powers and is able to keep Psuedomonas at bay.

Right now, I'm immersed in a program called Conscious Discipline by Dr. Becky Bailey. I won't go into that now... That's a whole 'nother blog on its own... But, one of the things we are encouraged to say to children instead of "It's O.K." is "I know it's hard. You can handle this." But, I don't want to say that to Jeffrey. I DO know it's hard. I know it's hard to be scared. I know it's hard when Dan is cranky and short tempered and you think, "I don't care if you do have a chronic disease, don't bite my head off like that!" Yes, we all know it's hard. What we don't know is, can we handle it? I believe that God will give me the strength to handle what is mine to handle. I believe that God will give Jeffrey the strength, too. But, somehow saying, "You can handle this," seems to negate the understanding that I know how he feels. I, too, hold my breath and wait to see if I can handle it. I watch myself wondering what I will do and how I will walk through the trepidation and fear... What I really want to say to Jeffrey is simply this... I don't know what is going to happen. This has been a fantastic emotional journey, and I am so happy and grateful that you have come to be a part of my family. Thank you for loving my daughter. And, no matter what, I will be in this with you. This is hard, but we are in it together.

Monday, April 13, 2009

Republishing My Blog

I am going to repost my blog for a while. My lovely co-worker and assistant teacher, Ms. Leggett, has chosen to write a paper about cystic fibrosis for school. Thus, she may find some of my information useful, or perhaps just plain zany. I have missed writing, so I may add a couple of thoughts here and there. Be on the lookout! ;-)

Speaking of CF... This has been a rough couple of months for Dan. Please hold visions of perfect health for her. She is recouperating, but we have really reached a plateau with regard to the effectiveness of the I.V. antibiotic therapy. This is when I start running to the Health Food Store and studying up on VooDoo Chalk Circles and such... If it might work, I'm willing to try it. But, this is also when I rest in that quiet place... When I try as much as I can to "Be Still and Know". I'm not always great at it. Friends help me, know with me and love me in my infintile spirituality. And, I so appreciate it.

Namaste'~ Christy