Sunday, November 21, 2010

Managing and Surviving Guilt

EVERY parent deals with guilt. Some parts of our society thrive on it. I had a pretty good handle on Mommy targeted guilt until CF came into the picture.

Guilt is one of the stages of grief. Somehow, I thought I could skip that step in the process by holding hands with my old friend logic. Logic told me, in no uncertain terms, that Guilt was silly. That we had no known family history in our very large families of CF, that we had no reason to think we might be carriers. My wrestle with Guilt on that issue was very small and very short lived, and I believed the two of us had parted ways with the knowledge that Guilt was certainly not a welcome guest.

In the long run, it's not so simple. There are other places Guilt sneaks in, both logical and shockingly ridiculous. I have to be vigilant not to let Guilt in, because he has a tendency to make himself at home, pee on my rug, and punch me in the eye. And Guilt pops in at the least convenient times. Having a child with a life threatening condition like CF can also lend you to survivors guilt and post traumatic stress, very real and serious things to struggle with. And since parents like us are fighting to keep our babies healthy and live as normal lives as possible, those feelings can easily be denied and ignored. In an effort to normalize the things we cope with, and may be feeling, I'm going to do the most uncomfortable thing I can think of and let you in on my little mental breaks. It happens to all of us.

I always thought my coping skills were far above the norm. I am intelligent and have a good understanding of my sons disease. I work every single day on maintaining a good attitude and instilling the same in my children. I try to be a good example for other parents stepping into this world of uncertainty. I have a very happy life and a stellar family, J is maintaining an excellent level of health thus far. Really, what do I have to be guilty or sad about? (Here goes)

My child needs me even more than 'normal' babies, so I can't ever focus on anything else or I'm not taking good enough care of him/her:\par

I feel guilty that I still care about things like my looks. I feel guilty for taking the time to fix my hair or work out.
I feel guilty about how much of my time is spent having to choose which of my children needs my attention more, and that by the default of the time necessary to complete J's daily care, Em is often on standby
I feel guilty that Em suffers from CF, not from having it, but from fear and worry about her brother, and that now for her too, these feelings will never go away.
I feel guilty that someday I may have a moment in my life not dominated by CF, because Jackson never will.
I feel guilty when I'm weary.
I feel guilty that when I share everything about Jackson but keep more to myself about Emily in an attempt to keep CF from dominating SOME aspect of her life, it looks like I care less about her.
I feel guilty that I think about a day that isn't dominated by pills, vials, ampoules, masks, and reaching insurmountable caloric goals.
I feel guilty for my relatively easy health.
I feel guilty that I spend so much time thinking about my own feelings.

I KNOW, these feelings are impulses, not logical thoughts. I know I am a very good mother to both of my children. I know it's perfectly normal to struggle with how you 'should' feel about things. I also know I am not alone in dealing with this. WE as CF parents have some unique challenges, one being the sheer quantity of possible issues and complications we face. If I was running a business and had more work than I could handle alone, I would hire someone to help reduce my load. I have adopted the same philosophy towards caring for my mental health.

I hate talking about it. I don't like to admit that sometimes I can't handle it alone. But I think it's incredibly important to normalize these struggles as part of our CF lives. Don't be afraid to talk about it, or get some help for it. Regardless of your financial or insurance situation, there are resources. In order to be the best parent and caregiver you can be, you have to continue to take care of yourself. If you want to be the tree from which your family is nourished, don't forget to water your roots.

Are you struggling to cope? Think you might be experiencing symptoms of PTSD? This page has many links that might help, including a crisis hotline:
How to Find Help

Monday, November 8, 2010

Bacon Blitz and BMI (the journey to the top, and back down, and why I'm definitely not overfeeding my kid)

Today was a big success. After two months of weight loss, infection, hospitalization, and near breakdowns on my part, we finally got some tangible evidence that our vigilance against CF is again paying off. Some of the story I have to preface, as I don't really feel all parties understand why or how we approach some aspects of J's care.

Check out the pic of his growth chart. At his first appointment at Cooks, Jackson was skidding along the bottom of the charts, not growing in either length of weight. We tried more frequent feedings, increasing my breastmilk supply, still he didn't gain. Flatline. In late May I sat with his dietitian and talked about supplementing my breastmilk with some powdered formula- just enough to put more calories into him, at three feedings a day. I was an avid breastfeeding advocate, teaching classes at my local WIC office. It was HARD for me to do, but I knew we needed to take a next step. Let me also say I had an incredible support network, not a single doctor, specialist, friend, or family member ever even hinted that I should stop trying to nurse. Jackson immediately began to climb the growth charts. After a couple of months, his little old man muscly legs turned into sweet round cherub chub. By August he tipped the scales, clocking in at the 90th percentile for length and the 75th for weight. We were all positively basking in it every time somebody said "he doesn't look like a CF baby!" Growth Chart

When the infection that ultimately hospitalized him set in, he lost over a pound, and quit growing lengthwise. All of his graph plots steadily declined. We knew that would happen if he got sick, which is why we are so intense about keeping his weight up when he's healthy. He needs some wiggle room, if you will. And body mass correlates directly to lung function, so we're not giving an inch on our intense feeding. It's not dangerous or tragic that he lost weight, but it's also not an acceptable place to stay. I want my son to reach his maximum growth potential. I don't want him to be healthy "for a CF kid". I want him to be HEALTHY, period. I'm not going to let one rebellious protein determine everything. We are going to get back where we were, at the top of the charts, and maintain a 'healthy for anybody' BMI, height, and weight.

I have to explain my motivation, because sadly, it's not met with unanimous support. I have had some great exchange with other CF mamas about getting extra calories into our kiddos, and believe me, even with a one as robust as J, it can be a challenge. Some of the things we do- add heavy cream or half and half to food or drink, add coconut oil, flavored fish oil, and olive oil wherever possible. Bacon. Nutella. High calorie formula (for those of us that use formula). We still get in all the healthiness of fruits and veggies, and keep almost 100% organic. J's recent love affair with bacon has raised some eyebrows. Mostly I say, bugger off, you don't know what you're talking about and I do. I've been here since the beginning, I've done the math, I know that at 8 months old, I have to get 1500 to 1800 calories into him EVERY DAY to get him to grow and gain normally. That's more than I eat in a day. And he doesn't eat MORE than other babies, usually, so that big number has to be fit into little portions. It's hard, unending work. I also want to point out, the unhealthy effects of excess fat in a diet don't affect Jackson. To his body, it's not excess, it's just enough. I'm not giving my baby a coronary, so relax. It's kind of astounding that it takes that much to sustain him, so I understand that not everyone is going to comprehend it. The difficult part is when I get less than awesome support from fellow CF parents. AT that point I try hard to understand that even though they work every bit as hard, not all are as successful in the venture to gain, and it may be difficult for them to watch someone else do it more easily. I can understand that.

The moral of the story, kids, is that doing some completely counter-intuitive things is our key to health. IF you don't understand, or are curious, ask me why we do it! I won't be offended, and I'll TRY not to talk your ear off. Until then, let my baby eat bacon in his applesauce, and dip his fries in olive oil mayo, in peace.

I post today in celebration. Jackson has been cleared to go six weeks until our next clinic check up. Love and light.

Sunday, November 7, 2010

Hospital Photo Journal

At long last, the photographic diary of our misadventures in the Pulmonary Ward, as told by Jackson himself.

Day 1 was pretty easy. A few pokes, a lot of papers...

Day 1
And everyone who came in really, really fussed over me.

Room With a View
I stayed in the Presidential Suite, we had quite a view of the Atrium, and saw lots of things down there!

Some of them made us a little sad.

But the symphony made us happy!

One Down
I went through 5 IV's during my stay, and since I'm on the chubby side and my veins are small and like to 'roll', it was a lways a challenge to place the next one.

I was glad the people who did it are so good at their job.

Hard Day 2
The day I got my bronch was long and hard.

Both of my Grandma's sent me flowers to cheer us all up!

Flora 2
How many babies get flowers? They brightened up our room and looked so pretty!

I liked when people came to visit.

I was finally starting to feel like my silly little self again, so...

Discharge papers
They decided I could go home! Dad signed the papers....

Dad take out the IV
...and then he took out my IV. (He's a paramedic, he can do that!)

Saying Goodbye
We said goodbye to all of my new friends...

And my Mom and Dad have never been happier than when we walked out this door. Lots of other stuff happened too, but sometimes Mom was too busy to take pitcures.