Friday, October 21, 2011

The good, the bad and the ugly of CF

Let's get the ugly out of the way...

The ugly is cystic fibrosis itself – the hideous monster that attacks our children's lungs, pancreas, digestive system and more. I hate it! I hate that it makes my child hurt. I hate that there's no cure. I hate that no matter how well we try to control it, the monster attacks – without warning – and leaves us exhausted from fighting it back into a cage, until the next time it rears its ugly face again! I hate CF ... period!

The good and the bad...

Well you can't have one without the other. There are a lot of good things about being in the CF club, and these good things are what help me deal with the ups and downs that CF brings. But like I mentioned, you can't have one without the other. Here are some examples:

Family and friends: when bad news strikes you quickly find out who will be there for you and who won't. The good part is that those that truly want to help DO. They are the ones that call and ask how they can help. They send letters, emails, flowers and shower you with love. They think of ways to help raise money. They donate lots of money. They donate their time, volunteering hours throughout the year at multiple events. They listen and hug you and cry with you and they definitely don't judge you!

Then there are those who can't (or won't) handle someone else's hardships. They are the ones that get on your case for asking for help or donations. They are the ones that will blame you for making them feel obligated to give (as if I were to have that much power...I wish!). Many won't donate one dollar to the cause of finding a cure. They won't ask how you're doing or ask how they can help. But you know what? At least I know who they are, so I know not to count on them; and in the long run ... it's okay. We're all different and the biggest lesson I've learned about this area is to accept them as they are. I may not like it, I definitely can't change it ... so I just accept it for what it is.

My husband: Jeff is the number one great thing to have with me in the CF roller coaster ride. There are so many good things about this man I can't list them all. He helps with anything and everything I ask of him, from holding his own money-raising events to licking envelopes shut for mailing campaigns. He puts up with all my crazy ideas and with my mood swings. How he didn't divorce me within the first 3 years of learning Andrea had CF is beyond me. I was one down and depressed mama and he was my punching bag. He's a wonderful daddy and really helps teach the kids that there are different ways of dealing with horrible news. He's my perfect counterpart, with enough differences that we just work.

And what bad thing can I say about him and CF? Is that he too has to deal with the beast that CF is. To see my man cry over the thought of possibly losing his daughter to this disease was almost unbearable. It was heart breaking to see him suffer, yet it was astonishing to watch him move past it so quickly (in my opinion). I envied him so much and still do to this day ... he handles bad news so much better than I do; when it come to CF related things. Now, watch him deal with putting up the Christmas lights AND that's a whole different story!

My children: Definitely more good than bad here. Andrea has taught me more than I could ever have imagined a child could do. She didn't have to deal with CF since birth, because she wasn't diagnosed until she was 4-1/2. She took to it like it was nothing. Treatments, pills, therapy sessions, and doctor visits were just one more thing to do and no big whoop. She did everything she was asked of and to this day she's still very compliant with her CF protocol. David (who does not have CF) was born with sensory neural hearing loss and has had his own set of issues to deal with; multiple surgeries with ear tubes, adnoids and tonsils, working with speech therapists and sign interpreters, and intergrating into the hearing world. He too has done all of this without much fuss and continues to amaze me daily.

Just like with their daddy, the bad thing here is knowing how trying it is for them to deal with all their special needs. No matter how awesome Andrea is with doing all she needs to do, she does have a day or two [a year] where it just becomes overwhelming and she "lets loose" with lots of crying. To see her in such pain brings so much sadness that it can be almost too much for me to handle. Thank goodness for the husband, friends and family that come to the rescue. As for David, he is just starting to understand what CF is and what it does to his sister. He has days too where he feels very sad and wishes he could make everything better. Luckily these days are far and few in-between.

Faith: Ah, a subject that can be taboo ... but it's part of dealing with CF. I personally am full of faith. I have so much faith in everything mentioned above, plus more. I have faith in the world and what it provides. I pray daily to life, and thank life for all the greatness it brings. I am surrounded by people full of faith too. Theirs may be different than mine, but if it works for them I'm all for it. I personally do not pray to a God (unless you want to call life God). I don't believe in a God that provides us with good and bad. I cannot find it in me to "feel/believe" that God is looking out for me, I've tried and tried lots but it's just not in me.

The things people have said to me in the name of God has astounded me. I've been told that I need to go to church so no more bad comes to our lives. Someone even made reference that because we didn't baptize our kids it was God's punishment that Andrea got CF. And as much as they mean well, I've been told multiple times that it was God's plan to give me a child with CF and that that was a good thing. Well to someone who does not believe in a God that allows harmful things to occur in ones life ... it is definitely not a good thing to me. We have had friendships fade because we don't share the same views in faith/religion, and it's something that has troubled me. I try to not put forth energy on this subject but it can be difficult, especially when I go out of my way to respect their way of life but they can't reciprocate. It just plain makes me sad.

CF friends: What would I do without my CF pals? We help each other out so much. We meet for drinks and to let loose of our CF woes. I have met some awesome CF parents and I'm so thankful to have them in my life. They are the good, no the GREAT thing about CF. And what about the cysters and fibros? They too are an awesome bunch of people to know and have around. They are inspiring and so giving. Many blog or have their own "foundation" or Internet support sites to help others in the same boat. They help make my job as a mom to a CFer a little easier, because they bring a truckload of knowledge and support I can't provide. The best, most wonderful thing about CF is the people you meet that live it or have it. I'm truly thankful for all of them.

Of course the bad about this is watching them deal with CF during times of crisis. Watching parents hold their child as they take their last breath of life (TEARS!!!), learning of those that are in the hospital A-GAIN, hearing of those that are frightened and ready to give-up ... this ultimately has to be the baddest of the bad. And as hard as I try to not think about this aspect of CF, unfortunately it's there and forever will be ... until we find a cure!

Me: Yep, me ... Susana Guadalupe Fernandez Rider. What good am I in the CF world? Well, I'm a great advocate for my children. I consider myself a decent fundraiser and a go-getter. I'm ready to do what it takes for CF yet know when to pull back if it's getting in the way of raising my children and being a good wife. I'm really good at asking family and friends to help out and thank goodness I have many that agree to do so.

And with all the good I do, I too suffer from the bad CF brings. The first 3 years with CF in our lives was horrible. I cried daily, I was rude, I snapped at the littlest of things. Oh how I wish I could find all those poor pharmacists that had to deal with me when medication errors would occur. I had a chip on my shoulder so big that it took a long time to knock that sucker off. Every once in a while it creeps back on but I'm better at knocking it back off. I still cry and think of the worse case scenario CF could bring. I know it's stupid, but I do it. I've allowed CF to consume me and it's a challenge to overcome. I figure I'll fight with these negatives off and I'm grateful of the good I do have to help me through the bad.

Oh there's more I could add but I won't. I think I've blogged enough about the main ones. So until there's a cure for CF ... 

And to all the bad and the ugly? Well ... 

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