Friday, November 22, 2013

An open letter to The League

To whom it may concern,

I am sure that you have been bombarded with outraged emails, comments, and contacts in the last day.  I suppose you can add this one to your list.

I am the parent of a cleft-affected child.  I do not watch your show.  My husband, however, does.  I understand that the basis for your show is crass humor, with crude comments highlighting poor behavior.  Regardless of the basis for your show, there is a line between crass and flat out wrong.  I have heard about your comment regarding cleft children.  I understand you called them ugly.  Let me assure you, ugliness lies not with outward appearance.  I can see ugly, and it is not my child. 

Were you aware that cleft occurs in roughly 1 in every 700 births?  That it is one of the most common birth defects in the US?  I did the math for you - congratulations, you managed to insult roughly 453,012 people with your comment yesterday.  That number includes only the number of people living in the US with cleft.  It does not include their family members, friends, and others who may have found your comment offensive. 

I think sometimes we forget that there are real people out there living with disfiguring conditions every day.  I'd like to educate you a little bit about cleft.  Children with cleft face multiple surgeries in their lifetime, beginning when they are only a few months old and continuing through adulthood.  Each of these surgeries are extremely painful and require weeks to months of recovery time.  While cleft can sometimes be linked genetically, whether through a syndrome (and there are numerous syndromes that can cause cleft) or through family history, quite often there is no known cause for cleft.  This is the case with our daughter.  There is no reason.  It just is.  She can't help it, I can't help it, her dad couldn't help it.  This is not some thing that she made a decision to have.  YOU, however, made a decision to ridicule her for it.  I fail to see where the humor lies when an adult (in a script or otherwise) makes derogatory comments about an innocent child or children.  I have spent the past nine years teaching my children that words hurt, and that making fun of others, especially their appearance, is never okay.  Your show just told all of it's viewers that it is okay to make fun of other's appearances.  I hope that makes you proud.

Here is a list of famous people who are cleft affected for you:  Cheech Marin, Tom Brokaw, Jesse Jackson, Mark Hamill, Carmit Bachar (of the Pussycat Dolls), Stacy Keach, Annie Lennox, and the one you might recognize the most, Peyton Manning.  Are these people ugly?

Shame on the writers who wrote the line, the actor who said the line, the director who filmed the line, the producers who backed the line, and FX for airing the line. 

You may never read this letter - and that is your decision.  However, rest assured that the thousands of people I have contact with through social media, public blogging, and news stations I am sending this letter to, will.  I hope you never have to face the possibility of a loved one with a defect.  But if you do, I hope you remember this moment.  Maybe then you may feel some remorse. 

an offended parent.
My beautiful, cleft-affected daughter. 

Tuesday, November 5, 2013

Catch up

I started off the summer with the best of intentions about keeping up on here, but as you can tell, I failed miserably at that! 

I've started a new job (in my new career field) and between that and school, I meeting myself coming and going.  I just keep telling myself it will be worth it in the end. 

So, catch up. 

Monster Boy is nearly nine now.  Time truly flies.  He is amazingly smart, and astounds us on a regular basis with what he can do.  We found out at parent teacher conferences that he is testing at a fifth grade level in math - without any lessons on the material he tested on.  The kid figured out basic algebra ON HIS OWN!  He is definitely too smart for his own good.  Unfortunately, my insane schedule is starting to take it's toll as well, and he is struggling behavior wise in school right now.  I think there is also some teasing and such going on at school (he is the shortest kid in his class, for one thing).  I wish I knew a good way to address it.  He complains about it a lot, and we've spoken with the teacher regarding it, but she either doesn't see it happening or isn't taking it the same way he is when it does, because she doesn't seem to think it's a problem.  His acting out in the classroom is rapidly becoming a major issue, however.  We are racking our brains trying to come up with ideas to deal with that. 

Miss Sunshine is doing well.  She love, love, loves preschool.  She is so excited to go every day.  Her teacher says she is doing great, and learning just as quickly as Monster Boy seemed to do.  We took her to the ENT last month, and it was a mix of good and bad news there.  I dread these visits - her ears and hearing are my biggest worry right now.  There is always that looming specter of more surgery hiding in the background, but it's only a possibility, not a given.  But her ears - this is an ongoing concern.  And hearing loss is often not correctable.  So, the good news first.  That ear tube that was already out and in the ear canal finally came out of her ear.  And that eardrum healed on it's own (this is always a concern when you have ear tubes for an extended period of time) and there is NO fluid in that ear!  Hooray!  This means her palate is functioning, and keeping the fluid out of her Eustachian tubes.  And that the tube doesn't need to be replaced.  Now, for the bad news.  The tube in the other ear is impacted in her ear drum.  It is completely encased in wax, which is pressing against her ear drum and likely causing the itching she frequently complains about.  The ENT really wants the tube out, but he's giving it six more months in the hopes that it will come out on it's own.  If it comes out on it's own, there is a much better chance that her eardrum will heal on it's own as well.  The ENT thinks it is likely she is going to need reconstructive surgery on that ear, though.  Some type of patch, probably, for her ear drum.  This is not optimal because it can cause further hearing loss.  But even worse than that - the mild hearing loss she was already diagnosed with in that ear has progressed.  It could be due to the wax around her tube causing pressure, it could be due to more scar tissue inside the ear, it could be a lot of things.  On the one hand, if she has to have surgery to get this tube out, they can go in and potentially clear out some of that scar tissue, perhaps restoring some of her hearing, but at the same time risking not being able to save it.  On the other hand, if the tube comes out on it's own and the eardrum heals, this hearing loss will likely be permanent.  This was not news I was wanting to hear.  But, it is what it is, and she can still hear, so we just deal with needing to use a louder voice when talking to her.  I have also noticed that she is developing some negative speech habits, which I have to wonder if it's related to the hearing loss.  We will likely have her reevaluated during her Kindergarten screening to see if she needs to resume speech therapy.

So, that was a long update.  I've been kind of avoiding it, but now it's done.