The weather today is rainy and miserable. I feel rainy and miserable as well which is funny because yesterday I was thinking about how happy I have been the last month or so and Evan's CF possibility is very far in the back of my mind. Then I got the mail and my mood took a turn.
Everyday after I pick the kids up from daycare there are two things that happen. We look for the donkey that some people keep chained in their yard (why?) and we go to the mailbox so as to avoid the temper tantrum from Connor that ensues if we do not. There wasn't much in the box but I noticed a letter from CHOP addressed to the parents of Evan H. I figured it was another donation request. When I opened it I was surprised to see it was a flyer for a Parent Education night from the CF center and Parent Advisory Board. I guess they have these once in a while and they speak on the relevant topics of current research and other things CF. This one is titled Research and Clinical Trials and they are having a quest speaker from Vertex which I believe is the drug company that is working on the drug combo to help those with gating mutations, particularly the DDF508 population. So my first thought is this, "Why would they send this to us? Evan doesn't have CF. Did I miss something from the doctor? " and basically started to have an internal freak out that he is on their "diagnosed" list. In reality I'm sure they do not have him diagnosed unbeknownst to me and they sent it to us because we are in the unknown area and might want to educate ourselves and meet other people in the local CF community. Then I thought about whether or not we should go. I always get nervous talking to Michael about this because Im certain he has written off the risks of Evan having CF completely. He's like that. I'm not. No matter how healthy our little boy stays I will forever worry about the "maybe" of his situation. Forever. And ever. I question whether I should go to this Parent Education night for several reasons.
1.) Evan doesn't have CF technically. We live life as if he doesn't have this question hanging over his/our head and in an effort to maintain my sanity I try to not constantly dwell on the what ifs. I feel like if I go to this it will spark more worry and more questions and ignite more doubt in my mind about his future health.
2.) If I go to this and start networking with parents of really sick kids will I make them feel resentful that I have a healthy child as I sit there learning about meds that really won't benefit him if he does get sick since he isn't homozygous DF508. This is the same reason Michael brought up to me when I mentioned having a team in the Philly Great Strides Walk. We kind of feel like we don't have the right community where we fit in.
3.) I'm scared. I'm eager to educate myself on this horrible prpgressive lung disease but I'm terrified that one day I'm going to come across some tidbit of information that is going to scream "your baby is going to be very sick" at me. Like I'll find the game changer or something definate.
There are some pros of going.
1.) Education while scarey can also be good and cathartic. It takes the unknowns out of the equation and if there is one thing I have learned through all of this is that CF is chock full of unknowns. But once you find some givens then you can work on them which is like finding a piece of the puzzle. Right now I feel like our puzzle pieces are still scattered on the coffee table.
2.) I might actually meet someone in our same predicament. Evan's CF doc told us that in the last few years we are part of a growing population of people who, through the newborn screen, get caught in this awful grey area. When we had one of our first few appts with him last Spring he said there were a couple other families at the clinic right there with us. I'd live to know how things are turning out for them. Maybe they'll show.
So I'm torn. I don't know what to do. I'll give myself until the end of the month to figure it out and I'll have to talk to Michael about it. I hate that I feel so nervous talking to him when he should be the one I can confide in but for some reason he's so blase about it it makes me uncomfortable.
As for Evan he is still healthy and smiley and happy. I'm totally in love and I couldn't ask for more in a baby. He sleeps through the night and drinks his bottles like a champ. He's loves his puree food but don't you dare put a puff in his mouth because to him that is akin to attempted murder! He's not fond of the sippy cup but will kind of try to drink from it if you hold it up in his mouth. He also started crawling last week. Time to put the baby gates up again. This week we've been going though teething hell. Hell I say! I never had an inkling that Connor was teething until the tooth broke through. Complete opposites these two! Hoping his fussy days pass soon because the 1230am wake up and the clingyness is getting tiring!
Off to finish work, go home and clean and greet my parents from their month in Hawaii visiting my sister and my new niece Scarlette!
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