What If… The 65 Roses Parent Journey

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 time she needs IVs, what if I’m not doing the physio correctly, what if she catches this bug or that bug. I’ve also developed a feeling of hope for the future, a hope that is driving my wish for a cure. I want to see her marry (if she wishes!), achieve all her goals and live a happy and fulfilling life. I am aware that her future is uncertain and we try to live each day with joy and happiness. I am grateful for the support we have received in our fundraising journey. The many people with CF and their families I have met on social media. We are like a big extended family in someways. Thank you. If you are a parent reading this and you have a child just diagnosed, know that there are hundreds of people there to support you. Things will be OK. That’s it for my emotional outburst this morning! Have a good day. May if CF Awareness Month in the US. What if… everything turns out OK. What if… a drug is announced that will help Minty. What if… a cure is found!

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2 thoughts on “What If… The 65 Roses Parent Journey

  1. Reblogged this on This is Eli and commented:
    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. My weekly themes will relate to cystic fibrosis. but not be all about a disease. 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. 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 no the Pioneer Woman. (She’s the best!) 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. I connected with every thought, especially “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. I don’t know the blogger, Mummy Medic, a UK doctor, 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.

    Sometimes learning, temporarily, gets in the way. If I hear of another child suffering in some new way I hadn’t thought about before, I just break down and cry. I make a mental note to ask a doctor about such and such condition. Then I pick up and go on and try to stay in the present. 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. 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. Goodnight!

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  2. As a 22 year old sufferer this is very touching! And how beautiful is your daughter? I have recently started blogging and my intentions are for support and to utilise my life experiences, especially with people like yourself. What ifs are such a common thing for CF mums I am sure, but just remember nothing is set in stone! Give your daughter all the love and care she needs and I am so sure all will tick along. The bumps will happen but I am so sure they will be dealt with in the best way possible. The CF world has improved so much more and so quickly since I was born. There are much better treatments and so much care and teams to guide you. Enjoy her, her life will be beautiful. Goodluck xxx

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