Tuesday, August 3, 2010


I can finally exhale. The crazy weekend is over and we're back to reality. We had Ella's second birthday this weekend [even though her birthday was a month ago] and the twins baptism as well. About 25 family members from out of town were here for the festivities, along with about 25 friends for the birthday party. I feel like I hardly got to visit with anyone! There was so much planning and organizing and managing and worrying that I feel like the weekend just slipped by. I think its fair to say that good time was had by all. And frankly I think I did a great job, on a number of fronts! :)

I was a nervous wreck going into the weekend. Having that many people at our house threw me into a tizzy of worry about Drew. The biggest crowd he'd been around since birth was about 6 people, and now we were multiplying that 9 times. We sent out this note to family the week before the party:
As you all know, he was back in the hospital a couple weeks ago and thankfully is doing fine now. That said, it has highlighted how important it is for us to help him from getting sick to the extent possible. Therefore, if you have, or feel you are getting a cold, please let us know. We have masks that you can wear if necessary, and you'll need to keep your distance (doctors recommend ~6 feet) from Drew. I know that's sort of weird, but it is truly an important aspect of his long-term health. Also, please understand that we're going to avoid passing him around, particularly during the birthday party. Kids are dirty and there are going to be a lot of little ones running around touching things and each other. Other times throughout the weekend, you'll be welcome to hold him and play with him as you wish, but we'll require that you clean and sanitize your hands first - by necessity this is now our standard operating procedure. Please don't be offended if we repeatedly ask you if you have or if you will wash your hands. While it's sort of become second nature to us, it takes some getting used to to remember that anytime you are going to touch him, you need to sanitize first so we'll only be doing it to remind you. Rest assured, he is now a very stout kid who loves to be held and played with and there are no real restrictions on any of that!
I'm glad we sent it. People were great about washing and sanitizing before touching him, but I felt like all weekend I was a nervous wreck if he wasn't in my sight (he was for most of it). But there was still a lot of passing around and it all still made me nervous. I tried to act "normal" but in reality I wanted to keep him all to myself, guarded and protected (maybe I should get a tatoo like crazy Casey of a heart covered with a shield "i'm here to guard and protect your heart" HA!). I'm just struggling so much with that right now. I want to treat him like we treated Ella when she was that age! I want to show him (them) off and let people hold him and love him, but at the same time the fears I have of him getting sick are so overwhelming I feel like I'm gonna go crazy.

You just don't understand. You can't possibly understand unless you have a child who takes one step backwards every time he gets sick. Getting a cold for most kids means a runny nose, maybe being a little cranky. Getting a cold for Drew means a trip to the hospital. It means mental, physical, emotional, financial strain for us. It means less time with our whole family together as we are split spending our time between Ella & Lily at home and Drew in the hospital. It means the beginnings of chronic lung disease. It means CF is winning.

After the parties, we (Meme and Grandpa and Gaga) Clorox wiped every square inch of the playroom (and there are a LOT of toys in the playroom). We wiped down doorknobs and spigots and phones and remotes and tables and chairs. We disinfected everything. We have to. I'm not naive, I know colds and other illnesses are in our future, but we've spent 6 weeks of the last 4 months in and out of the hospital, and to the extent possible, I'm going to prevent another stay. And I still feel guilty for not protecting him better. Hes not sick...yet. But I feel like I could have (should have) done a better job. And at the same time I thought I did a good job letting go a little and letting our families hold him.

I just don't know how I'm feeling. I'm all over the map. It's just different now. Things are just going to be different. And I have to stop caring what other people think. I have to stop worrying about being judged for the way I handle this, that or the other thing. You can judge me when you walk a mile in my shoes. No one has said anything to me at all, I just feel like sometimes I'm being judged and I hate it. Things are just different now.

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