Unselfishness

I'm here in Birmingham with Dan. She was discharged from the hospital on Thursday, but we have determined it was probably too soon. Dan takes courses online, and she had scheduled a proctor to administer her Psychology exam on Friday. And, even though I told her we could just reschedule, she insisted that she be discharged so she could go take her test. I can't even begin to tell you how much I admire the kid. She's not asking for any special treatment. No extended time, no reduced requirements, no fussing over her...

However, once she got home on her own, she began feeling extremely nauseous. She is on a rigorous I.V. and treatment schedule, so the routine has been rough. It's hard to care for yourself when you are sick and, well, unable to care for yourself. So, I rocketed up on Friday night, leaving Micah behind for the rest of the family to care for while I came up to help Dan. I'm glad to do it. In fact, I already asked for Monday off so I can help her get settled in the hospital again if that is what she needs.

Tiffany and Jason, Dan's long-time friends, are here visiting from MSU. We have had a nice, low-key visit. I know Dan has felt bad for not being able to really spend a lot of time and enjoy them. It's hard to do when you are throwing up in a trashcan trying, at the same time, to keep your oxygen flowing freely. But, Tiff and Jason have been great sports, and we have made the best of it.

The thing I was thinking about this morning is how much richer my life is because of cystic fibrosis. (Just so the Universe is clear, though, I am entirely open to a burning bush kind of miracle in which the girls are completely healed of all symptoms and go whistling off into the sunset to live happily ever after.) Cystic fibrosis has made me think about what it means to be unselfish. It also helps me to reflect on how some of my most selfish times with CF have been during hospital stays and times when the outside world looks on projecting that I am the most unselfish Mom in the whole world.

There are moments with this whole journey when I am so sad. Usually when I drive away from Streetman Circle in Birmingham, the tears start and I'm unable to contain my sobbing. There are other moments too. Yesterday, Tiffany, Jason and I went to Wal-Mart and Tiff was telling me all about how she searched for a cat costume for Dan. Tiffany didn't know it because I was driving along with my sunglasses on, but my throat got tight and my eyes started to burn with that lurking sadness threatening to overtake me.

However, the thing I have really learned is to look at the sadness before it invades to figure out where it is coming from. There are so many times when I realize the sadness stems from a deep-seated selfishness. When I leave her behind in Birmingham my sadness sometimes comes from the thoughts: I love her. I miss her. I want her home with us. This isn't fair. I'm not sure how much longer I can do this. If you'll notice, all those thoughts are riddled with "I". Focusing on me has not brought me any solace, peace or happiness, generally. Unless I am able to find a way to focus on my gratitude in the situation instead of what I have lost or what I am afraid of losing.

Sometimes, though, my sadness is not about me. It is about true empathy, compassion and love for my child. And, probably if I give myself a break, my sadness is usually an intermingling of a focus on my losses and fears and a true sadness for my child. The sadness I felt yesterday when Tiffany was telling me about searching for a Halloween costume was just because I want so much for her to experience the joy of Halloween parties and dancing and living a care-free life at college like all of her friends. And, while my sadness doesn't stem from a selfish place, it doesn't help our situation in the moment.

So, in moments when the sadness looms, I have to turn my eyes to God and say, "Thank you." God is all-loving, all powerful, omnipotent and Good all the time. When I remember the nature of God, I can rest in the perceived difficulties of our circumstances. Thank you, God, for a husband and parents who are able to care for my three-year-old. Thank you, God, that I have such a tremendous young woman in Danielle who is blessed with a positive outlook and spirit of overcoming. Thank you, God, for Danielle's friends who love her and visit her regardless of what she is able to do. Thank you, God, for my friends who listen, never really knowing what to say, but always providing strong support upon which I can lean. Thank you, God, for Danielle and Sarah's dad who has become CF Dad Extraordinaire in his own right. Thank you, God, for healing Danielle in your perfect way. Thank you, God, for taking care of Sarah and watching over her health. Thank you, God, for Micah who provides love and laughter to our family. Thank you, God, for this life that was perfectly designed for me to bring me the most love, the most joy and the most blessings of any other life I could have had.

Jeffrey

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.

Child Life Specialist

Anna Cat
Amy Brown is her Child Life Specialist.

Sarah started running a fever on Wednesday. I took her to Dr. Sindel, she was hospitalized on Thursday overnight, and discharged on Friday. Currently, we are doing I.V. at home... Fortaz and Azactam for those who are interested in that kind of thing. She is still running a fever off and on, so we are playing it by ear with regard to when she will return to school.

That's right! School started back this past Monday. It has been really hairy-carey trying to do everything necessary to get the school year started off on the right foot, and then having to regroup with Sar. I know for sure, though, that there is never a good time. I have not once, in the fifteen years I have been dealing with cystic fibrosis clapped my hands together and jumped up and down exclaiming, "Oh goody! Let's get going to the hospital!"

Still, focusing on being grateful that medications are available to help my kids helps put me in a better frame of mind. Somehow the mind usually wants to look at what's wrong before I am able to shake it and shift the focus to what's right. Whether I like it or not, it is always about my perspective on things. Learning to be grateful in the midst of calamity brings much more peace of mind than becoming mired in the turmoil of all the challenges CF brings.

Sarah isn't feeling her best right now, which makes her a WEE BIT CRANKY. This makes it more and more difficult for me to maintain my supportive, spiritual, CF-Mom Extraordinairre persona. It's hard to lovingly comfort someone who is snapping your head off every time you ask something. Thus, my primary focus has been not to beat the child with the life threatening illness. So far, we're all hanging in there.

During this last, brief hospital stay, I met a new lady recently hired who introduced herself as a "Child Life Specialist". My ears perked up... "What was that title?" She explained that her job is to assist the children who are hospitalized in whatever way they need assistance. So, if they need extra help with school work, through Class Act (the hospital school), she does that... If the children need comforting during a procedure, she does that... Whatever children need to help improve the quality of their overall life experience in the hospital is what she does. This is what I do at work... Anything to try to improve a child's life experience in school. I love the title. I'm thinking of adopting it for myself.

I give myself new titles all the time.... Mainly because special education is full of acronyms that no one understands anyway. I am the LSC for my school. What's that stand for, you ask? "Local Survey Chairman"... What in the heck is that? Exactly. To parents I say, "I am the special education coordinator for our school." But, to people I work with it means something else entirely... "AAAKKK! I have a form to fill out and I don't have a clue..." Ask Christy. "AAAAKKK!!! This parent is a pain in my elbow. She is threatening to sue us..." Call Christy. "AAAKKK! There is a kid throwing a whopper of a fit in the hallway." Get Christy. (Although, I'm not complaining. I rather like the excitement of conquering those types of challenging situations...) I just don't like the stress of trying to do all of that and teach.

But, I like the idea of "Child Life Specialist"... It is so descriptive, and it works to describe my job at school and my job as CF-Mom Extraordinairre. My job is to do whatever is necessary to improve the quality of life for children... Whether they are my own children or someone else's. One of the ladies on our SpEd team even coined a phrase that people use throughout the building... Occasionally, a child will need an attitude adjustment, and I happily provide that for them. My friend, Debra, when asked what happened to bring about the change says, "Oh, Christy 'Maxwelled' him." I suppose that goes right along with the all-encompassing title of "Child Life Specialist"... As does, doing the laundry, making dinner, running to band parent meetings, praying with my kids, shuttling my child to gymnastics and dance, and reminding Sarah that it is within my very special power to remove every priviledge she ever thought about having if she talks to me in that tone one more time... "Child Life Specialist".