This is Eli

A blog about Eli. A blog about survival – and by that, I mean life!

May is cystic fibrosis awareness month! In honor of it, I will again attempt a blog a day in May, like I did last year. No contests this time around! Mommy is elbow deep in all sorts of deadlines. I decided to make things slightly easy on myself and pick a theme for each week of the month, and look around for good stuff, like the below blog, too. I want to kick off May with recipes for week 1. We spend a lot of time thinking about what we’re going to eat. Eli’s appetite is insatiable; he pounds 1,300 calories a day. Laila is picky. Mark is picky. I am always attempting some version of healthy eating, not always with success, because I’m rather snackish. Cooking is not, I repeat, not my strength. I am not Pioneer Woman. I’ve e-mailed a few relatives to help out with food ideas. More on that later.

I signed on tonight thinking I was going to go ahead and post a recipe, but instead, a blog I follow posted a piece on being a CF parent. Mummy Medic is a UK doctor, and I connected with every thought.

“I am aware her future is uncertain, and we live each day with joy and happiness.”

We are aware of the uncertainty. too. We know some things about CF, but the human body is a mystery, and the disease impacts each person in a different way.

She puts it like this:

I see pictures and stories of bonny, healthy looking babies, people climbing Mount Everest, running marathons with CF. Getting married, travelling the world. Equally I see stories of lung transplants, premature deaths, illness and campaigning for treatments deserved.

I don’t know the blogger personally, but we have a connection. In a lot of ways, as she says, the entire CF community is like a family. CF moms with new babies or young babies have found my blog, commented or written me an encouraging note. It’s hard for us to look too far ahead, because we don’t know what’s coming. As this blogger does, I want my son to marry, meet goals and lead a happy life. I don’t want him to suffer a young death. I don’t want him to suffer at all. Like the UK Mummy Medic, we all just want to be happy.

Learning about CF is a mixed bag for me. I want to understand in order to keep Eli healthy, but I can’t view the information in a cold, clinical way. For instance, I’ll hear of another child suffering in some new way, with a complication I hadn’t heard before. Children still die of this disease. I’ll hear about a girl, 13. Another, 7. Those stories stay with me. It’s cruel, and it’s not fair, to go so young with so many hopes and dreams unfulfilled. There’s no getting around that. So, I just break down and cry. I make a mental note to ask a doctor about such and such condition, such and such a bug, such and such a hospital mistake, that hurt or even killed a young person with the same disease as my son. And then I have a round of spin-off thoughts, such as – will this get any easier? Not the disease, the learning. I have a feeling it will, since when I first heard cystic fibrosis, and learned what it was, I almost passed out. I pick up and go on and try to stay in the present. Today, the vast majority of days, it is no problem for me to talk about Eli, my cheeky little fellow with his wild baby ways. Or, to explain cystic fibrosis to anyone who doesn’t understand. Anyway, I’m rambling, but I will conclude with a reminder to myself. Self: It’s OK not to have all the answers. Stop thinking so hard and go to bed. Also, I want to share a tip that Laila passed along, on how to save the earth. She told me to put my underwear in the freezer. Yeah, no idea. She’s 4. Please enjoy Mummy Medic’s post below. And is it just me or is British English just completely endearing. I mean – she said “bonny.” C’mon! Goodnight!

mummymedic

Image In creating awareness for our fundraising campaign I’ve been researching stories, inspiration and news to up date our supporters with. As a parent of a one year old with cystic fibrosis this has been incredibly hard. I see pictures and stories of bonny, healthy looking babies, people climbing Mount Everest, running marathons with CF. Getting married, travelling the world. Equally I see stories of lung transplants, premature deaths, illness and campaigning for treatments deserved. In the early days of Minty’s diagnosis I could not read or look at anything to do with CF. I was too traumatised and worried for her future. Now I have developed a shell that enables me to read these things. I know other parents with newly diagnosed children do the same. Every now and then the shell cracks and you fill with panic. What if…. what if she needs a lung transplant, what if this…

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