No Guilt Here

I think I may be the only CF mom who doesn't feel guilty that my child has CF. (Please note: I am not trying to deny or belittle the emotions of those who do feel that guilt, I just want to share how I do feel about it and why.)

Now, as I've written about before, I do sometimes feel guilty about other things, like her slow weight gain. But the fact that she has CF? I have never felt an ounce of guilt over that fact. But she got the gene from me, right? I passed that mutated gene on to her, giving her CF? Well, that's not the way I see it.

What have I given my daughter? One half of her DNA, 8 months in the womb, 10 months of nurturing and meds and treatments. It's not a stretch or a boast to say that she owes her life to me, as everyone owes their life to their mother, and once over again, as many children with CF owe their lives to those who care for them.

Yes, one of those genes in the DNA I gave her causes CF. But for Gwena, what other options were there? The only other options were never to be conceived, or to die before she was born. I don't think those are better options than living, even living with CF. For me the other possibility was to have a different baby, one without CF. But there is no "Gwena without CF", the odds of conceiving a baby with the exact same DNA as Gwena, minus the CF mutation, are mind-blowingly small. If I had a baby without CF, it wouldn't be Gwena. Gwena is unique and amazing and you know what? She has CF. And I am so glad that she's my daughter.

The other reason I don't feel guilty about Gwena's CF is that while, like all CF parents, I know I didn't choose to pass that gene on to her, I also believe that Someone did. I believe that God designed my daughter and chose every gene in her DNA, including the CF genes. That is sometimes a hard truth to accept, but at the same time I am comforted to know that this was always His will for Gwena's life and my own, and He will work in it for His glory!

Psalm 139:13-16 (NIV)

" ¹³ For you created my inmost being;
you knit me together in my mother's womb.

¹⁴ I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.

¹⁵ My frame was not hidden from you
when I was made in the secret place.
When I was woven together in the depths of the earth,

¹⁶ your eyes saw my unformed body.
All the days ordained for me
were written in your book
before one of them came to be."

July Clinic Visit

This is my second belated update post!

Last Wednesday we went to the CF clinic. Gwena's lungs are doing great! The nurse told me I'm doing a great job. :)

Her weight wasn't too good though... she weighed only 15 lbs 5 oz. Two weeks before, at the pediatrician's, she had been 15 lbs 8 oz. I know it's two different scales, but we had also weighed her on our home scale, and she seems to have lost a few ounces in those two weeks, instead of gaining! Her growth curve had a little dip in it.

So the plan is to feed her more and richer foods. Right now she's nursing 5 times a day. In addition to that, they want us to give her the foods we're eating blended up, give her more rice and pasta and crackers, cook for her using butter, oil, or cream, or add those to her foods directly. We are to weigh her every week on our scale and email that figure to the dietitian. They will see us back at the clinic after 4 weeks to see how she's doing.

It's kind of disheartening to find out she hasn't been gaining well, that we have to fight harder to get her to grow. Getting extra calories into her hasn't been too hard though, and I can already tell from her stools that we've outstripped the amount of fat that her enzymes can handle, so we might need to increase her dose as well.

I can't believe she's 10 months old already! It's crazy to think that without enzymes and treatments, she might not have lived even this long. She's standing in her playpen right now waving at me, and she just looks so old!

Organization: Week 1

This is the first of two belated updates I should have written earlier this week!

My first week of attempted organization/cleanliness went pretty well. We got everything cleaned up on Friday (the 9th) before Jon's brother got here to hang out for the weekend. This was nice as it gave me a basically orderly apartment to work with. As of Friday the 16th, one week later, I am proud to say that the apartment actually looked the same, if not better, than the Friday before!

I was able to keep things basically tidy from day to day, and keep up with the dishes. I always want to put this off, but I hope if I force myself to do it every day long enough, it will become a habit. In addition, over the course of the week I managed to do laundry, vacuum, dust, clean the counters, sweep, and mop. The toilet and the stove each got a superficial cleaning, not as thorough as I had wanted to give them. Jobs I had on my list that I didn't get to at all included cleaning the shower, mirrors, and windows.

So it wasn't a perfect run this first week. But it was definitely an improvement over my normal housekeeping performance, so I'm calling it a success!

I also made some headway in the less obvious behind-the-scenes work of organizing things. There is one big thing I've been re-examining because of the book my grandma lent me - where things go. I'm now trying to have a definite place where each thing goes, and to have that place be in the most convenient location.

I'll use Gwena's meds as an example. I used to keep her enzymes in the living room, because that's where I usually feed her. It seems convenient, but there were always empty enzyme capsules all over the coffee table. Now I've realized, even though I feed her in the living room, I get her food ready in the kitchen. So now I've started keeping the enzymes in the kitchen, and pouring them onto the food before I move to the living room. Now the coffee table is much cleaner!

I still have a long way to go before I can call myself an "organized housewife", so we'll see how long I can keep this up. In other exciting news, my grandma says she has another book she wants to lend me! Why am I excited to read about housework??

This Day In History

One year ago today, Jon and I went to the midnight showing of Harry Potter 6, then went home and got a few hours of sleep on the floor of our empty apartment.

One year ago today we woke up, packed the last of our things, did our last minute cleaning, and turned our keys over to our landlord.

One year ago today we got the call telling us that Jon's CF carrier test was positive, that any child we had would have a 25% chance of having cystic fibrosis.

One year ago today, my eyes already red from crying, we boarded the plane for our red-eye flight and said goodbye to Hawaii.

Getting Organized

I'm going to be honest here... I'm a messy person. I leave things on the floor, in front of books on shelves, on the counter, just wherever... I tell myself I'll do the dishes "later" or sweep the floor "tomorrow"... pretty soon our home looks like a disaster. I've never learned to pick up after myself as I go. My husband is the same way.

For a while now I've been struggling against the bad habits I've been cultivating for 25 years. It shouldn't be hard to keep a small one bedroom apartment clean, right? But somehow, it is. I've been fearing the day (probably in a few months) when we move into a house. If I can't keep an apartment in order, how can I ever manage a whole house? If I can't do chores when I've only got one child, what will I do when we have two, or three, or four??

The other day at my grandma's house I noticed a book on her shelf and asked if I could borrow it. The book is Confessions of an Organized Housewife by Deniece Schofield. It is full of great ideas on how to have an organized home, keep up with the housework, and have time left over for fun! The book was published in 1981 so the version I read is a bit outdated in some areas (index card files??) so I'll probably pick up the updated version from the library, Confessions of an Organized Homemaker.

A lot of the things in the book seem like common sense, in fact I've thought of a number of them myself. But the book has made me realize how much easier it would make my life to do these things, how much time I could save. I'm inspired now and determined to get my home and my time organized! And if there's one thing that NaNoWriMo and natural childbirth have taught me, it's that if I'm determined enough, I can do nearly anything!

More posts should follow about my desperate fight against disorganization and my own terrible habits, with more specifics about ideas from the book that I'm implementing.

Our New Pediatrician

We went to see Gwena's new pediatrician on Thursday for her 9 month checkup. We had been driving down to Aliso Viejo to see her old one, and I finally got around to switching doctors to one that's closer to us. How does that make sense, I'm too lazy to switch doctors so I've been driving 45 minutes for checkups? Anyway, she weighed 15 lbs 8 oz, which was great news! The new ped was very happy with her growth and development.

Dr: She's doing great! She's petite, but she's growing well.

Me: The CF clinic said they want all of their patients to be 50th percentile in weight.

Dr: Yeah, but this is the real world!

Yep, I love him already.