I am ANGRY

I tend to avoid writing on here when something is particularly upsetting to me.  I might come back after a day or two to address what happened, when I am more calm and able to tell it in a funny or otherwise not angered way.  Today, I cannot do that.

I rarely use my blog to "address" things.  But something got called to my attention last night on Facebook that I simply CANNOT ignore.  I can't wait and let myself calm down about it.  It's something that NEEDS to be addressed, now.

In case you haven't seen what I'm about to go on a tirade about, well, here it is...



It is from New York Magazine.  They commissioned several cartoonists to make caricatures of Lady Gaga.  Most were typical - make her look like some kind of alien, robot, superhero.  Why THIS particular artist (Tim Hensley) chose to illustrate her with a cleft lip is BEYOND me.

I first saw this last night.  I didn't click on the image link when it appeared on my Facebook page, as I felt that the picture itself was offensive enough.  I made the mistake of clicking on it this morning.  Yes, the image is offensive.  But even more so, is the caption that the artist felt necessary to include.  Really?  REALLY?  "Birth  defect through elective surgery"??????  First of all, it CAN'T be a birth defect if elective surgery created it.  Secondly, we, as parents of cleft children, watch our children struggle SO MUCH with the surgeries to repair this and you are going to glamorize it?  This isn't even TOUCHING on my feelings about the phrase of "birth defect"  (I've said it before, and I'll say it again... My child is NOT defective.)

I know people speak before they think.  It happens.  I expect THAT.  This.  Well, there just aren't words strong enough for my distaste of this.  This is something that took time.  And thought.  And planning.  And never once, along the way, did it occur to you, Mr. Tim Hensley, that THIS was a BAD idea????????????  This isn't some fictional scenario.  People, children, are born, daily, with this condition.  A condition that requires numerous surgeries, starting as young in some cases as SIX WEEKS OLD.  Six weeks!  And you are going to make a cartoon out of it?  Our children face enough bullying and ridicule in this world, without taking in to consideration their clefts.  You, sir, have opened the door for even MORE opportunity for ridicule.  My daughter does not have a cleft lip.  She has a cleft palate.  But we are all one community, and I know I speak for many when I say "SHAME ON YOU."  Seriously, for shame.  To glamorize, to bring down, to ridicule, to make a joke out of what our children face every single day - the stares, the whispers, the surgeries, the pain, the scars...  I don't know your situation, sir.  I don't know what lead you to believe that this was somehow an appropriate thing to do.  But I can tell you that in all the cleft groups I belong to, there is an almost universal outcry of outrage over this.  That alone should tell you something.

I certainly hope that New York Magazine takes a step back to reflect on this.  I hope Tim Hensley reflects even more.  And then, I hope, that they issue an apology, an explanation of why he drew it and why they allowed it to go to publication - even if only online - and then I hope they do something productive, something POSITIVE, to highlight cleft awareness and what our children face daily.  Do NOT minimize this.  Do NOT push it under a rug.  We demand respect, for everyone who faces life with cleft.

Show me yours...

So I had this little mental goal in my head of posting at least one cleft related blog each week during the month of September. I'm not doing such a good job of that, but I'm going to try.

This week I figured I'd give you some pictures.

A lot of times, what people envision in their heads when they think of cleft just isn't the reality, especially in Little Miss Sunshine's case. So I thought I'd post some before and after pictures so you can get an idea of what her cleft palate actually LOOKED like.

Miss Sunshine's formal diagnosis is an Isolated Cleft Soft Palate with Bifid Uvula (meaning her uvula was split as well). To date, we are not aware of any possible genetic contributions, as we are waiting on insurance to kick in so we can have genetic testing done to eliminate any disorders, but she does not have any markers of any of the more common disorders associated with cleft, so our cleft team believes she simply has the isolated cleft. I will go into more detail about what the different clefts are and even touch on some of the possible disorders that can be associated on a later blog. For now, we'll concentrate on the ICSP that she has.

Here is what her palate looked like before surgery: (Bear with me - it's darn near impossible to get a clear picture of the inside of an infants mouth, much less the roof of their mouth... so these aren't the highest quality, I know)

It's kind of hard to see from these pictures, but you could see straight into her nasal cavities (which always made for fun eating time)

And this is what her palate looked like one week post op...



Again, sorry for the quality. When you look at these pictures, you can see where they cut on the sides of the roof of her mouth to release the tension in order to sew the cleft together. There is a lot more involved in cleft palate repair, including recreating the nasal lining, rearranging the musculature of the roof of the mouth, as well as the closing of the roof of the mouth. I'm working on some diagrams, etc, to help explain all of these and will post it on a future blog.

For now, I hope these pictures were able to make it a little bit more clear to you what a cleft soft palate looks like and what we have been through with our Little Miss Sunshine...

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.