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. 

Sincerely,
an offended parent.

My beautiful, cleft-affected daughter. 

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. 

It's July.

Normally in July I'd be complaining about how ridiculously hot it is out.

Only, it's not right now.  It has been beautiful here.

This year, I'm focusing on Cleft Awareness.

Did you know that cleft is one of the most common birth defects in the US?  It occurs in roughly 1 in every 600 births.  They have no idea what causes cleft.  It could be environmental, it could be genetic.  They just don't know.

Cleft occurs when, during the formation of the facial structures, the lip, palate or other facial structures do not "meet" to fuse together. 

Miss Sunshine's cleft is commonly associated with a syndrome called Pierre-Robin's.  Miss Sunshine does not have Pierre-Robin.  We have no family history of cleft.  (We have family history of a lot of other medical issues.  But not cleft). I did not take any medications commonly thought to cause cleft during pregnancy.  I took prenatal vitamins, did not consume any "forbidden" foods, was not exposed to radiation, or any other "toxins" during my pregnancy.  We really do not know why she has a cleft.  She just does.

You learn a lot when you have a child with a birth defect.  (I'm not going to get on my soapbox right now.  Maybe later).  Things you never had any concept of before that happens.  I had no idea how common cleft was.  I had no idea there were different kinds of cleft.  In fact, I remember when we were in the delivery room and the nurse announced she had a cleft palate.  I had a C-section, so I was pretty much tied to a table.  I told Daddy Mac to go look at her and see what was wrong.  He came back to my said and told me "I don't see anything different about her.  I don't know what the nurse is talking about.  Her lips are fine."  It wasn't until we were in the recovery room, and I was holding her that I realized what the nurse meant.  It wasn't until she cried for the first time that I saw something was different than with Monster Boy.

But she was still beautiful and perfect to me. 

Crazy Summer Days

It's been a beautiful summer around these parts.  I had planned to spend a little time updating, but we've been running non-stop since school let out, and it just hasn't happened.

However - July is Cleft Awareness month, so I'm going to attempt to write at least one post a week (hoping to maybe get something short up each day) about cleft and our journey.

For my first post - I'd like to talk a little bit about Miss Sunshine's cleft.  She was born with an incomplete cleft of the soft palate and bifid uvula.  Her type of cleft is not visible unless she opens her mouth wide.  It does have a great impact on her ability to eat, however.  Because the roof of her mouth was completely open into her nasal passages, she could not create suction in her mouth.  So she had to use a special type of bottle - in her case, a Haberman (also called a Medela Special Needs Nurser) - which didn't require as much suction.  In fact, her bottle had an elongated nipple with a chamber that we actually squeezed to help her eat until she was big enough to have a little bit of suction and eat on her own.  She also had many ear infections and persistent fluid in her ears because her Eustachian tubes were completely open.  In fact, she failed four different hearing tests before her first set of tubes were placed, and does have minor hearing loss in one ear due to scarring.  Her overall hearing still tests within normal range, but monitoring her ear tubes is an important part of her care, as she made need them for several more years.

Miss Sunshine has had a total of four surgeries - including five sets of ear tubes and her palate repair.  When her palate repair was performed, the surgeon cut along her gumline on the inside of her palate, as well as along the cleft.  He then pulled the loosened tissue together in the middle with sutures, and the rest of her mouth was packed but left open to heal on it's own.  The muscles in the roof of her mouth also had to be repositioned during this surgery.  In a normal palate, the muscles cross the roof of the mouth from side to side.  Due to her cleft, Miss Sunshine's muscles actually ran front to back, with a gap in the middle where her cleft was.  So all those muscles had to be cut, and turned and repositioned so that they ran across the roof of her mouth like they were supposed to.  That is a necessary part of the procedure, as it allows for proper speech, and also helps to protect her Eustachian tubes, meaning eventually she will no longer need tubes in her ears.

Miss Sunshine spent three years in speech therapy, before being released.  Prior to her palate repair she was not able to make any hard consonant sounds.  She could make MMMM and NNNN sounds.  So, her first word was Mama, because it was one of the few sounds she could successfully make without a repaired palate. She wasn't much of a babbler, and I think a lot of that had to do with her inability to form certain sounds. 

That's the basics behind her cleft.  There is much more detail, which I will be sure to make posts about as the month progresses, but that's the beginning of our story.

 

Miss Sunshine's palate - before repair

What her special bottle looked like.
 

Her palate one week post op - kind of blurry but you can see where they opened the roof of her mouth to get the needed tissue for the closure of the cleft.

Miss Sunshine's palate three years post-op.  Unless you know what you are looking for you can't even see the scarring.

                                             

Catch up

So, life has been crazy here. School is a lot of pressure this semester - but I am loving it (not the pressure, but everything I am learning). Monster Boy has been doing really well at school lately. Miss Sunshine is as spoiled as ever, and just graduated to a "real" bed. Daddy Mac is as busy as ever with work and school board meetings and Boy Scouts and life in general.

Both the kids want to play baseball this summer. This will be Monster Boy's third year, and Miss Sunshine's first. I was surprised she wanted to play, since she is the epitome of a girlie girl, but she was insistent that she wanted to do it. So we signed her up. This should be interesting.

Here are some recent pictures of the kids from a trip to the zoo over Spring Break, Easter, and one of our many crazy snowstorms this year!

Slacking

So, the last two months have been something of a blur.  We have been so busy around here that nothing much has gotten done - if that makes sense.

We did get a week long break between the end of last week and beginning of this week, thanks to two major snowfalls hitting our city.  14+ inches on the first round, and nearly 7 on the second.  Craziness!  So, the kids and I enjoyed some playtime outside, and nobody got anything done around the house during the six day weekend (eight for me, since I don't have classes on Wednesdays) that we had.  It was well worth it, though, to have some good family time together. 

And now, pictures!

Of course we had to build snowmen - it's not snow without snowmen!

Monster Boy (Yeah, he's definitely going to need braces...)

Miss Sunshine! (We are officially in the wierd faces instead of smiling phase)

Snowfall #1 - this is about 12 inches of snow - we got another 2 inches before the end of the day!

Snowfall number one - somewhere between the single tree and the set of two trees is where our street is normally located.

Snowfall #2 - it was a much wetter snow that stuck to EVERYTHING!

 

All ears

So, life has been insane. 

Miss Sunshine is now FOUR.  Man, how time flies.  She's unbelievably cute (admittedly, I may be biased), way too smart for her own good, talking like a professional speaker, and generally driving us crazy.  She has imagination in spades, is in to all things princess, ponies and pink (and purple!).  I need to schedule her four year well child check, and her six month follow up with the ENT.  I am not looking forward to that appointment, as one ear is totally occluded with wax (her tube isn't even visible) and the tube has come out of the other ear, but is still sitting in her ear canal, trapped there by wads of wax.  She won't let me look at it for very long with the otoscope, and I'm not sure how to get that tube out of there.  She will NOT appreciate the ENT taking care of it either.  So, I'm not looking forward to that appointment.  I am hopeful that the ENT will let us go for a few months without replacing the tubes, to see if she develops fluid again.  I'm sure her ears would appreciate a break.

That's pretty much it for us right now.  Things are just crazy busy with school and work and school and all that extra stuff that comes with school-aged kids and college! 

Three years (and 1 day!)...

Yesterday marked three years since Miss Sunshine's palate repair.  I would have posted yesterday, but I'm sick with the plague (not really, but I am really sick) and just didn't feel up to it.  Honestly, I don't feel up to it today either, so no promises on the quality of this post...

I think I touched on most of emotions regarding her surgery in my last post.  So, I thought I'd do a little update, and then give you all some pictures of her journey to date.

Miss Sunshine has FINALLY made it on to the charts - she's roughly 25% in weight and 40% in height.  It only took us three years to get here!  She's been done with speech therapy for a year now - and while she does still substitute W for R, she is getting better about saying it correctly when it is modeled for her.  We have no other developmental concerns - she's well above age in pretty much everything.  Including imagination, it seems.  She's got that in spades.  I can hear her right now having a serious conversation with her stuffed Bullseye toy and our cat, Dante, in the living room.  It's so great to watch her grow and flourish and turn in to this amazing child.  Her personality is BIG (Diva doesn't even being to do her justice), she is FULL of drama of all kinds (good and bad), she loves to sing, her favorite colors are pink and purple, and she is the princess of the house, no questions asked.

The day she was born - you can sort of see her cleft here.

My first glance of her!

Her cleft palate

Another Palate shot

Waiting for surgery (Sorry, I can't seem to get this to go the right direction!) That is a Haberman (or Medela Special Needs) nipple in her hands.

Post-op, right after she woke up.  You can see the thread through her tongue taped onto her cheek.

1 week post-op - the white patches are where they opened her palate around the gumline to meet it in the middle.

One year post op - she would NOT open her mouth.

Two years post-op (with her Monte's Bears for Clefts bear)

Three years post-op!

Three years post-op (she was surprisingly cooperative for these shots!)

Three years post-op (she was not so cooperative when I wanted to take a normal picture...)

I remember...

Next Monday will mark three years since Miss Sunshine had her palate repair.  Three years!  I can't believe it's been that long already!

I'm not sure where the time has gone.  I swear it seems like just yesterday we heard the words that would change our lives (and hers) forever.  "She has a cleft palate.  You are going to have a hard time feeding her."  Those words are etched into my memory.  As out of it as I was, having just undergone a cesarean section, I CLEARLY remember hearing the nurse say that.  She has a cleft palate.  She has a cleft palate.  She has a cleft palate.  Like it was ringing in my ears, over and over and over and over.  I remember urging Daddy Mac to his feet.  Go check on her.  See what the nurse is talking about.  What does she mean, cleft palate?  I remember him going to see Miss Sunshine, coming back to me.  "I don't see anything.  I don't know what she's talking about.  She looks fine."  I remember them bringing her to me, searching her face, checking her over.  It wasn't until we were settled in recovery (and I'd had an insulin shot - they pump you full of sugar water during surgery, and my gestational diabetes didn't appreciate that!) and I saw her cry for the first time that I actually saw her cleft.  As soon as she opened her mouth to cry, there it was.  Almost like it was staring at me.  Daddy Mac wouldn't even have known what it was had I not pointed it out to him. 

I remember trying, valiantly, to prove that nurse wrong about her feeding.  I could breast feed her.  The lactation consultants even said so.   They brought me some outdated information regarding only cleft lip, which all said the potential was there.  She latched perfectly.  Her latch was amazing.  I could feel her sucking.  But she couldn't suck hard enough to stimulate a let down.  I didn't want to give up.  The nurses offered to bring me bottles for her.  I refused.  They told me I could nurse her.  So I would.  Finally, after two days, I conceded defeat.  She lost too much weight, if I didn't get her to start gaining, they wouldn't let her go home.  I pumped.  Colostrum doesn't really pump well, and it was extremely painful.  I gave her formula out of a cup.  I was still hoping, praying that maybe once she got a bit stronger she could nurse.  I cried.  Ugly, sobbing, hysterical cries.  I hid it from everyone.  Daddy Mac stayed with us, so I cried into my pillow at night, while he slept.  Nobody seemed to notice, except our family physician.  But I lied, each time he asked how I was.  "I'm fine.  Things are great.  We're ready to go home."  He asked, over and over.  I shot him down.  I was afraid.  Afraid to admit how upset I was.  She was our miracle, our beautiful, precious, prayed for little girl.  How could I admit that I felt like something was wrong with her?  How could I admit that I felt like I had done something wrong to cause this?  I kept lying.  We went home, and I kept pumping.  After two days, I admitted that she had to have a bottle.  We tried everything we had in the house.  Daddy Mac went out and bought other kinds.  I enlarged holes, we dripped formula and breast milk into her mouth.  She HAD to gain weight.  My step mom went online and ordered us Mead Johnson nursers, and Habermans (now called Medela Special Needs feeders).  They came in and we started using them.  She didn't like the Mead Johnson nursers - I had to fight with her to get her to take them.  I kept pumping.  Finally, she took the Haberman.  She ate more than an ounce in an hour for the first time in her life.  Success.  I broke down to my mom, three weeks after we came home.  At 2 in the morning, when I couldn't take it anymore.  She worked second shift, and I called her to come over so I could sleep.  Only, I couldn't.  And when she got to the house, I just cried.  I held my beautiful, precious, perfect daughter, and I cried.  I couldn't even feed her, because every time she needed to eat, I had to pump.  I hated that pump.  It represented everything that was out of control about the situation to me. 

I remember meeting with the local plastic surgeon when she was two weeks old.  Being told that, since it was "only a cleft palate", he wouldn't recommend that she avoid having children of her own.  I remember being horribly offended by that, astonished by it.  Even as he said it wouldn't be an issue for her, I remember thinking, so what if it was?  I remember being told they would do nothing until she was a year old.  I remember being told about Shriner's.  I remember Daddy Mac and I agonizing over whether or not to apply, discussing it with our doctor, each other, our parents.  I remember turning in all the paperwork.  I remember getting the call that they wanted to see her.  I remember getting hearing tests done that she failed.  Going to the ENT.  Having tubes placed - her first surgery.  I remember thinking how hard that was, and how terrifying her palate repair was.  I remember flying to Chicago, meeting the cleft team.  I remember crying right there in the team meeting when they told us they were going to take her on as a patient.  I remember getting the call a month later to schedule her palate repair.  I remember agonizing over which date to chose - two weeks before Christmas or two weeks before her birthday?  We decided to wait.  I remember flying out for the surgery.  I remember being a bundle of nerves.  Staying with her in the hospital the night before, I think I slept maybe two hours.  I cried again.  I cried a lot then.  I remember them giving her versed in pre-op, then taking her back.  I remember walking out of pre-op and crying again.  I remember feeling lost - where should I go?  What should I do?  Daddy Mac was with me, so was my mom.  I remember them paging us that she was out.  The ENT came out first - they replaced one tube, the other they left.  Then the plastic surgeon.  Everything went great, they will come get you when she's ready in post op.  I remember seeing her for the first time in post-op.  I cried some more.  Saw the black thread they looped through her tongue, so that if they needed to work on her airway they could quickly get her tongue out of the way.  That was scary.  I remember her screaming, crying as she came out of anesthesia (she has never liked anesthesia).  I remember holding her, crying more.  Someone made me go eat.  My mom held her.  Daddy Mac held her, held back his tears.  Maybe he cried at the hotel.  I remember they let me feed her that first day with syringe.  She was much happier after she ate.  I remember the nurses telling me that babies rarely ate that well after surgery.  She drank 20 oz the first day.  I remember taking her down to the cafeteria for breakfast the next morning - she ate yogurt, applesauce, oatmeal, formula.  More than she'd ever eaten.  They let us go at lunch time.  By that night, she was back to herself, mad about the arm restraints.  I remember the stares in the restaurant we ate at that night, in the airport the next day. 

I remember every second.  I still cry about it, sometimes.  At night.  When I write these posts.  When we get good news.  When we heard she needs surgery again, she doesn't need surgery, she needs speech therapy, she doesn't need speech therapy anymore, she's normal.  Normal.  What is normal?  That always runs through my mind.  SHE is normal.  She is our normal.  She is perfect.  I remember that.

New Year, New Us

You know those pesky things called resolutions?  Millions of people pledge to change things about their lives on the first day of the New Year.  Generally by the first week of February, 99% of those changes have fallen by the wayside.

I generally avoid resolutions.  I don't like the idea of setting myself up for failure.  Resolving to make major changes generally results in failure.  You are much more likely to be successful if you start small and work your way up to big than if you jump straight to big.  This year I am going to make some big changes, hopefully by making small ones.

It's no secret I have struggled to lose weight.  I used to be skinny.  Age and kids and stress and life have added up to about forty extra pounds that I currently need to shed.  Last year, I tried.  I failed.  I lost about seven pounds and never got any further.  This year, I hope to change that.  But instead of making a resolution to lose forty pounds, I have chosen to make a change in my LIFE.  So my "resolution" is to eat healthier, and exercise every day.  It's easy to let yourself get caught up in excuses (as I have already done - however, in my defense, I have been sick for the last four days.  Like, don't want to get out of bed because your body feels like it got hit by a truck sick.).  I'm hopeful that, instead of having an end goal number in my mind, if I have a plan to change my lifestyle, I will see better results.

I'm also resolving to spend more time with my family.  The last two years have not been easy, for me or for us.  There is a LOT going on in all our lives, and sometimes it feels like I'm doing everything I can to just make sure I don't drop the ball, rather than actually playing with it.  I don't really know how I'm going to do it, what with work, and school, and activities, and work, and kids and, well, LIFE.  But I'm going to try.  We are going to designate "family night" every other Saturday, where we play games, or watch a movie together, or go to the park, or a ball game, or something.  We are also going to start doing "date night" between Daddy Mac and I once a month.  Even if it's just having the kids go to Grandma and Grandpa's and renting a movie, we are going to make an effort to have time for us.  Time we have struggled to make in the last two years.

The last thing we are resolving to do is to save some money.  We have a lot of necessary expenses, some rather large, which are unavoidable.  But at the same time, we need to start trying to budget more.  Or better.  I'm hoping this will resolve some of the stress in our lives.  We are doing the weekly savings plan - the first week you put $1 in savings, the second week you put $2, and so on.  By the end of the year we should have roughly $1300 in savings.  It's not a lot, but it's a LOT more than we currently have.

So, what are you resolving to change this year?  Oh, and HAPPY NEW YEAR from all of us!

Hello 2013!

I don't know where the time has gone. This year really zoomed by for me.

Monster Boy turned EIGHT last week. I can't believe he is already that old - it seems like just yesterday that he was born. He broke his wrist the middle of December. He fell off the vertical ladder on the play structure at his school. That was quite the adventure - but I am really proud of how well he handled the whole thing. We go next week for X-rays and hopefully cast removal. I know we are both ready to be done. He will have to wear a brave for a couple of weeks, but that will be much easier to deal with.

Miss Sunshine is coming up on the three year anniversary of her palate repair, followed quickly by her fourth birthday. My babies really aren't babies anymore, which makes me a little sad.

The holidays were quite busy and we are all still trying to recuperate from the craziness. It was a very nice year for us with family time. Just lots of running around. Our normal routine starts back up on Thursday. Of course, once we get settled in, the routine changes again when my classes start. But we are ready for it.

I hope everyone had a wonderful New Year's Eve! 2013 is going to be our year, I just know it!