Yes, I AM strong, thanks

January 31st, 2016

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A comment which I sometimes get as the mother of a child with special needs is, "You're so strong!" Sometimes, this is also accompanied by, "I could never be as strong as you." I gotta be honest - I used to roll my eyes at this (well, mentally anyway, as I wouldn't want to be rude). My feeling was that hey, I'm no stronger than the next person, and you could do this gig too if it was your child. I felt like this was a way of the person distancing themself from me; almost a self-assurance thing - "Since I'm ...

The meaning of “rare”.

January 24th, 2016

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I've had this experience more than once... I'll be sitting at my computer and looking at Facebook, and my daughter Miranda will come along and look over my shoulder. She'll ask if such-and-such friend has FOP, or if their child does. Quite frequently, there IS a connection to fibrodysplasia ossificans progressiva. I think this gives Miranda a pretty false sense of how few people in the world actually have FOP. It's not just Miranda, though. I often forget this myself and tend to think of the FOP community as being pretty big. And then, something happens which reminds me of the ...

A birthday, and who she is now

January 17th, 2016

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Haylp, have a big 11 year old girl at my house! Miranda's birthday was this past Friday, and I have to say, I'm very much enjoying this "big-girl" phase. My daughter is really a lot of fun right now. She is one great kid. Every year around Miranda's birthday, I like to do a "focus on Miranda" type of blog post. This is both because I like to brag about my terrific girl (ha ha), but also, to be serious for a moment, because I think it's invaluable for people to realize that there is an actual, true, amazing person connected to ...

Those moments when everything changes

January 10th, 2016

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There are times when dealing with fibrodysplasia ossificans progressiva is nothing short of a nightmare. Imagine you have a child with FOP who's enjoying life, involved in various activities and having fun with friends. As a parent, when all is going well, FOP can sort of fade into the background and you don't think about the havoc it can wreak on your child. But this sense of serenity never lasts too long... Because one day, the child will say that a body part is hurting, or she suddenly can't move that body part like she used to. You check it out, ...

FOP hopes for 2016

January 3rd, 2016

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Happy New Year, friends! Can you believe it's 2016? That seriously blows my mind. There's now a whole new, fresh year ahead. So many things to wonder about... As always for me, this includes a whole set of questions around my daughter Miranda's fibrodysplasia ossificans progressiva. Too bad I can't wave a magic wand and ensure that everything turns out the way I want. With that in mind, here's what I'd like to see happen (or not happen, as the case may be) in 2016: - This one's a real biggie, and it's personal. You see, Miranda will be 11 years old in ...

FOP in our world – 2015 edition

December 26th, 2015

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We're now less than a week from the end of 2015, so it's fair enough to sum up the year in FOP... In fact, I can do it in one word:  MORE. This year, there was just more of everything about fibrodysplasia ossificans progressiva. Some of it was just "more" for my family - my 10 year old daughter has FOP - but a whole lot of it was generally for the FOP community. At the beginning of 2015, I was thrown head first into the world of the International FOP Association - I was elected as a board member, and ...

The flu shot and FOP, round 5

December 13th, 2015

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This is my 5th almost-annual post about the flu shot and fibrodysplasia ossificans progressiva. Having YET AGAIN had a... "challenging"... experience with getting my daughter Miranda her flu vaccination, I've resigned myself that it will be a struggle every year. Why is this so hard? The background issue is that because of her FOP, Miranda can't get an intramuscular injection. An injection into muscle creates trauma to the tissue, and that in turn can lead to an FOP flare-up which causes bone to form at or near the area of the injection (NOTE - to be extra confusing, this doesn't always ...

FOP and, yes, fun

November 29th, 2015

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Life with fibrodysplasia ossificans progressiva can be very, very difficult. But that being said, even something as frustrating and challenging as FOP can offer good things. Take, for example, opportunities for... FUN! In dealing with my daughter Miranda's FOP for the past several years, we've actually had some really good times - experiences we wouldn't have had, but for FOP. During the past week, for example, we did a couple of enjoyable things. I'll start with last Sunday. That's the day when Miranda and I grabbed our passports and our American cash, and took a little trip across the border to do ...

Knowing what to expect with FOP

November 15th, 2015

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In 2007 when my then-2-year-old daughter Miranda was first diagnosed with fibrodysplasia ossificans progressiva, I remember reading about how it would likely progress. I learned that for the 97% of people with Miranda's type of FOP, the following could be said: - About 50% of people have their first flare-up before age 5, and the outside limit for the remaining 50% is around age 20. - Flare-ups first occur on the back and later on the front of the body (dorsal to ventral pattern) and also begin on the trunk, which is the centre of the body, and later move down the ...

What to say and not to say

November 8th, 2015

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I've been thinking about the subject of this post for a while now, sort of mulling it over in my head. To expand on my title, the topic is, "What to say and not say when you find out someone's child has been diagnosed with FOP (or any other significant medical condition)." Over the years, people have said a number of different things to me upon finding out that my daughter has fibrodysplasia ossificans progressiva. (In case you're reading this for the first time, FOP is a very rare disorder which causes progressive soft tissue swellings in which part of the ...
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