Showing posts with label Craniofacial Awareness. Show all posts
Showing posts with label Craniofacial Awareness. Show all posts

Thursday, September 9, 2010

September is...

one of my favorite months. The weather (sometimes) starts to cool down from the summer heat, but isn't chilly or cold yet... the leaves slowly start to turn on the trees to pretty colors around this time... school is back in session... and it's Craniofacial Acceptance Month!

It's amazing all the misconceptions you can have about a condition until you actually have to deal with it yourself. Frankly, I never really gave a thought to what caused clefts. Until Miss Sunshine was born with one. And then I went through the most typical reaction of any parent who has a child with a birth defect - GUILT. Guilt is such an ugly word. But I blamed myself. What did I do wrong? I must have done something to cause this. Why else would she have it? Did I eat something I shouldn't have? Drink too much caffeine? Not take enough vitamins? Not enough exercise? Was it all the morning, noon and night sickness I had the first six months? It HAD to be my fault.

The reality is - it wasn't my fault. I didn't do anything wrong. Sometimes there is a reason for cleft - genetics can play a part. But many times, most often, really, there is no rhyme or reason. It just happens. The doctors don't know why. They know it's a formational defect. They know roughly when, during the development process it happens. But they don't know WHY. Some studies have shown that increased folic acid before and during pregnancy (above what your typical prenatal vitamin has) can lessen the chances of cleft. But it's no guarantee. There are other medical conditions that are related to cleft, meaning that if someone has this condition, they typically also have a cleft. But they are another one of those no rhyme or reason things.

The way I see it, God gives us these children for a reason. To teach us something. To make us stronger parents, to learn, to educate ourselves and others around us about the realities of having a child with a birth defect. Whether it's severe or not, it still affects you as a person, deeply.

I would give anything to not have to watch my daughter have struggled with eating, to have to go through the pain of surgery and recovery, to face other potential procedures, to have to deal with speech therapy and other therapy down the road... but at the same time, I don't think I'd change anything about this journey. As hard as it has been for us to deal with all of this, as hard as it is to watch her go through all of this, as much as I have blamed myself and struggled with depression over it - so too have we grown. As parents. As partners. As people. As a family. And I don't think I would trade that for anything.

Tuesday, August 31, 2010

Nearly that time again...

You may remember my blog post from LAST year about September being Craniofacial Acceptance Month. Maybe you weren't yet reading my blog at that point. If you weren't or you want a refresher you can head here and read up.

Miss Sunshine's cleft palate is only one of MANY craniofacial defects. While cleft lip and cleft palate are certainly the most common, (in fact, they are one of the most common birth defects PERIOD, occuring in roughly 1 in every 500 births) they are by no means the only. All of these defects affect a child's face and head. Most of them will endure numerous surgeries in attempts to correct problems that may arise from the defects, and many of them will have visible scarring or abnormalities long after surgery is completed.

The time to educate ourselves about these things is now. More than ever I have come to realize that you just truly never know what can happen. Miss Sunshine's cleft certainly threw us for a considerable loop as we had no prior family history and no indications on any of the (many) ultrasounds I had during my pregnancy that she had a defect. (And again, a post for another time on how I hate that term...) These things just happen. Doctors don't know why, parents don't know why. Only God (or whatever you happen to believe in) knows why our children are born the way they are, be they "normal" or not. It certainly doesn't make them any less of a person or less important or just less. If anything, I think it makes them MORE. The bonds that are developed when you go through surgery with a child are so much stronger than I ever imagined they could be.

I can tell you that if we had it to do over, I don't think we'd change a thing about Miss Sunshine being born with a cleft palate. Granted, we certainly wouldn't want her to have to endure the pain of surgery like she has, but beyond that, I don't know that we'd change it. This whole experience has made us stronger as people, stronger as parents, stronger as a couple, and most importantly, stronger as a family. It doesn't get much better than that.

Friday, September 25, 2009

Still Disappointed...

Well, I STILL have not heard back from a single one of our local news resources that I contacted last month regarding Craniofacial Acceptance Month. At least send me a "heck, no" response, you know? It's not like this is a town of 5 million people and you have no time to respond. But boy, let my grandmother write you a letter telling you she won't be watching your network any more and you'll respond to her. It's such a huge let down.

I'll be sending a letter to the editor of our local paper, we'll see if they publish that. Bet they do it in like the Tuesday edition, watch and see. Heaven forbid that something like this should recieve ANY recognition at all. I even emailed the person in charge of "human interest" stories at the newspaper DIRECTLY. Not so much as a freaking PEEP. I am disgusted, to say the least.

Saturday, August 15, 2009

September is Craniofacial Acceptance Month!

Thanks to my support group in my online birth club for notifying me of some very exciting news - September is Craniofacial Acceptance Month! This seems especially fitting as Miss Sunshine has her first visit at Shriner's hospital on September 2nd. I am hoping this is a good portent as far as getting her surgery approved.

One of the members of my support group created a GREAT picture in honor of this month. I have added it to the blog on the upper right hand side. All of you mommies who have babies with any kind of craniofacial deformity, please feel free to snag it for yourselves!

Take a little time in the month of September to make some people around you aware of the difficulties children with craniofacial deformities experience in everyday life.