When my daughter was first diagnosed with cystic fibrosis (CF) she was just a tiny, 6-day-old baby. I had all the fear in the world hanging over me regarding keeping her healthy. Even just a cold can be detrimental to a child who has a lung condition like CF. So when she got her first cold a few months ago, I was nervous. Luckily, that cold lasted about two days and she never developed a cough. The last two weeks, however, have been different. After developing a fever two weeks ago, she ended up with a very runny nose, an … Continue reading →

I am sitting here, listening to my almost seven-week-old little girl cough and wheeze. I hate it. What’s worse is that her big sister is sick too. She’s two-years-old and as many of you know, she has cystic fibrosis. I have kept her healthy for two years knowing that someday she would get sick. That day came last week when she started sneezing and coughing for the first time. But, I was so focused on her and her health because of CF, that I didn’t protect my non-CF child from the same germs. So now, my non-CF child is in … Continue reading →

Since I found out I was pregnant with baby number two, I have worried about her having cystic fibrosis like her big sister. I put it in my head early on that she had it in order to try to keep my emotions in check if she was diagnosed with it once she was born. I convinced myself that it would be good because her big sister would have someone in her life that understood. After she was born, her newborn screening was normal. That was step one. The next step was doing the sweat test, the best way to … Continue reading →

In my two years as a mom to a child with cystic fibrosis, I have me many other parents of children with special health care needs. Each child’s need has been different, from cerebral palsy to epilepsy and spina bifida to Down syndrome. One thing seems to remain the same between these parents, their faith. While each one has been given the challenge of raising a child with a disability, each one also has had the strength and the faith to endure, and to create a safe and happy life for their child. So what came first, the child or … Continue reading →

So, daughter number two made her entry into the “real world” on December 8. Katie is a quiet, sweet baby and her big sister Maggie just adores her. It’s been a good week – aside from the hormones and emotions that are wrecking havoc on my body. Oh, the crying. It doesn’t help that I have been filled with anxiety over the results of Katie’s newborn screening test. Maggie has cystic fibrosis. And any other child we have will have a 25% chance of having CF as well. So, granted, I’ve been nervous. However, I spent the entire pregnancy trying … Continue reading →

Thanksgiving is one of the best holidays, in my humble opinion anyway. The turkey, the gravy, the stuffing, and the pumpkin pie layered in whipped cream are never too much for me. I could eat that meal at least once a week. But in addition to the large feast, Thanksgiving marks the beginning of the holidays and the festivities that they bring. I love spending the cold days inside by the fire and searching for the perfect gifts for friends and family. This year, I’m thankful for the fact that Maggie has stayed so healthy, despite having cystic fibrosis. She … Continue reading →

Winter is officially upon us. I have always dreaded the snow and the ice. The freezing winds aren’t my favorite either. But since Maggie’s diagnosis of cystic fibrosis, my distaste for winter has grown into a fear – of all the germs and illness it usually brings. Maggie has had her flu and pneumonia shots, but there is still that darn cold virus that no one seems to be able to cure. In a few days, we will be seeing Maggie’s four cousins for Thanksgiving. Three of them are in school and so obviously, they get the occasional cold. I’m … Continue reading →

When planning for our first child, we figured that I would take some time off but eventually head back to work at least a few days a week. I didn’t want to send my baby off to daycare, but we didn’t think we could manage to pay our bills unless I did. Then fate threw us a curveball. Our daughter couldn’t go to daycare, at least not for the first 6 months, and after that, it would still be better if she didn’t. Having cystic fibrosis means avoiding people with colds and respiratory viruses at all costs and, as we … Continue reading →

Today was a big day for my husband and me. One of the key ingredients in our plan to keeping Maggie’s lungs healthy, and slowing down the progression of cystic fibrosis, is to keep as many toxins out of our home as possible. Since we all need new mattresses – us because we are severely overdue for one, and her because she is moving on up to a toddler bed – we went to Green Mountain Organics in St. Johnsbury, Vermont to look for certified organic mattresses. While more expensive than a traditional mattress, certified organic mattresses don’t contain the … Continue reading →

Yesterday I learned that a fellow CF (cystic fibrosis) mother’s second baby also has CF, just like her first. This hurt. She, like me, found out she was pregnant with baby number two while struggling to decide whether to get pregnant again at all. CF is genetic, which leaves a 1 in 4 chance of any of your children having CF if both parents are carriers of the defective gene. She, like me, refused any prenatal testing due to the risk of miscarriage and went forward with the pregnancy with all the hope and fear in the world. For her … Continue reading →