For the Last Time!

Ok, I am now going to get on a soapbox for a minute or two. I don't normally do it, because well to be honest, I just let things ride. I let things roll off of my shoulders and onto the ground where I step on it a  lot, and then forget about it completely. But I do have to say something when I get blamed for something I had absolutely no control over - period.

So, the story. I am a decently active in a number of online support groups (and I will admit I have not been to them in a while...the holidays, you know?) for moms and dads with cleft babies. Not just unilateral clefts like Kaylee's, the groups kind of encompass the whole of the types of clefts that are seen. So, while I may not know what some moms go through in terms of a bilateral cleft lip and palate (where the cleft affects both sides of the lip and roof of the mouth) I am able to help a little in just knowing what it is like to have to answer the same questions over and over again (what happened? why? did you take xyz while pregnant? etc, etc.). So, when someone asks the aforementioned questions I am well prepared with my answer and am able to deliver my answer with confidence. *ahem*

"Clefts are formed within the first six to seven weeks of gestation and can be caused by many factors, and the fact is they don't know all of the factors. It has been suggested that clefts can be inherited genetically, that they can be caused by environmental factors, and /or that clefts are formed because of a medication that is being taken. In our case it appears to be genetic as there may be multiple family members on both my side and my husband's side who are cleft affected in one way or another. In no instance is it something that a mother "did" to purposely cause it. That is ignorant and rude to even suggest."

That is what I say. That is how I present it. I don't think it is rude, or condescending. If it is, hell, someone tell me so I can find a way to reword it. Anyway, today I got an email from a woman who has been reading this blog (and many other blogs, from what I gathered) and it says:

"While I enjoy reading your blog, it seems you are purposefully trying to impart incorrect and misleading information on your blog. Firstly, about how it can be genetic. From what I have researched there has been absolutely no studies to support that theory. 

Secondly, drugs cause these kinds of deformities and when babies are born with this type of deformity it is well known that the mother has had to have been doing drugs. I am talking about illegal drugs. Only mothers who abuse their bodies in such a horrid fashion have babies with this kind of deformity. You can lie all you want to, but you and all the other mothers on this blog and on the support groups will be found out in the end.


Thirdly, the way you talk about your daughter on your blog makes it sound like you were just an innocent woman having a baby and ooops! the baby just happened to be deformed. You KNOW why that baby is deformed and you (and those other idiot drug addicts) are not innocent women. You purposely tried to hurt your children, so you could get all the attention in the world. You did your babies no favors and now they are the one's who must pay for your drug abuse.


Please, just give your baby to someone who deserves to have it. Someone who hasn't done anything wrong. It will be better for you and your child in the end. Please, for the love of these beautiful babies - let them go.  These children will be in my thoughts. Always, Sarah."

So...there you have it. Apparently, myself and the thousands of other mothers who have cleft affected babies are drug addicts. I have already blocked her from viewing this blog and  I have already reported her email address to the admins of all of the support groups including babycenter, cafemom, and whattoexpect. So, hopefully we won't see her in any of those groups. I don't know if I am the only who got an email from her or not, but I will be damned if I let this go.

So, for the sake of other random people who are of the same mindset - please educate yourself by viewing any one of the links on the right hand side of this blog. These links will provide you with up to date accurate information from verifiable sources both in print and on the interwebs. Please don't be an ignorant human being. Read, and learn and then have an intelligent conversation with me.

People, that email infuriated me to the point of tears. Because I am an innocent woman. My baby doesn't deserve what she was born with. She never should have to go through this. But I will tell you one thing - I love her no matter what. I loved her when she was just a second line on a pregnancy test. I loved her just the way she was. And I love her just the way she is now. I love everything about my monster. That is all that any of it comes down to.

Also, just to add....I don't know this Sarah woman. I have never met anyone who thought like she does. But I will say that I do not have to justify anything to her or to anyone else. I have nothing to prove or hide. Period.

Happy Tuesday ladies and gentlemen. Happy Tuesday.

The Monster Knows!

We went to the doctor yesterday for the second part of her flu shot. It was not fun, and Monster was not happy. Monster knows what those little tubes are that have orange tops. Those are the needles that poke her in the leg and hurt a lot. There were a couple of things that happened at this visit.

We get to the clinic at the proscribed appointment time. We check in and sit down to wait. In comes a mom with her daughter. Kaylee was immediately fascinated with this little girl's hair because it was really curly and kinky. So, this little girl and Monster are playing an Monster decides to pet this girl's hair. She didn't pull, she put her hand out and brushed the top of one of the girls pigtails. The girl decided she didn't like it at all and she pushed Monster on the floor. Monster hit her head and started screaming of course. It was sad.

The other little girl started crying because Monster was crying. I made sure to let the little girl know it was okay - they are children after all. But that mother was like "you should teach your child not to pull hair," and then she walked away. I was watching. Intently. There was no hair pulling. So, whatever. I was scolded by a mother not much older than me - no big deal. But it still made me mad because I apologized as she walked away and she didn't even say sorry to me for her bully of a daughter pushing Monster to the ground, hurting her head. :( Rude lady.

Anyway, after I calm Monster down, we are called to get her shot. I laid Monster on the exam chair thing and start to pull off one of the legs of her pants when the nurse turns around with the needle in hand. Monster literally jumped out of this chair into my arms because she didn't want it. The nurse took advantage of that, because I was holding Kaylee, and got her in the leg real quick like. But the thing is this: before - Monster didn't care what was going on she'd just lay back and let what needed to get done, get done. Now, however, she knows. I have a feeling that the White Coat Syndrome* is going to start soon.

So, long story short: flu shot. On the upside she got a new hat out of the deal! Enjoy, and have a good night! <3 Jess

I'm from here.

So, does it look ok?

*White Coat Syndrome: The fear of the doctors office because they've been there once too many. I've got it, when it comes to the dentist. I hate dentists. Le sigh.

Week 18 - Part Three: Kids Can be Cruel.

When I think about the fact that my daughter is going to have surgery soon, I think about all the harder things: feeding with stitches, the no-no's, Kaylee's discomfort, worry about anesthesia etc, etc. Today, I had to say it, I am going to be thankful when this surgery is over, so we can finally get rid of the NAM, and the tape. I am going to be so relieved.

It all started where things normally start for me: Wal-Mart. I hate Wal-Mart, with a passion. It seems like every single time I go to that damned store I get harassed, or embarrassed in some way. One time, I was waiting in line, and my pants decided they no longer wanted to stay on, the whole of the front end of Wal-Mart saw my flowery undies. Once, I was expressly told that I was an illegal immigrant who couldn't read. Those things didn't really bother me. I mean, I was embarrassed that my pants fell down, and I have certainly been called worse things by better people, but it was a child (no more than 10 years old) today, that actually made me sad.

I took my darling girl grocery shopping with me, I like to get her out of the house and I just like taking her with me. While in the check out line, I was emptying my groceries onto the moving belt, minding my own and popping in to make Kaylee smile when a mother with her four children got in line behind me. I could tell they were all related because they all had the same sandy hair, freckles and bright green/blue eyes. As I finished loading my bagged groceries into my cart and moved to pay, I noticed the boy looking in at Kaylee. I didn't mind she likes it when people peek in on her, she is friendly like that.

The following words were passed between this little boy, and his older brother, and his mother:
"Hey, this girl has something on her face." he said, rather loudly.
"Shhh, you're being loud." replied the brother.
"But look how ugly that is. What is wrong with this kid's face? Ewww, [enter evil child chuckle here]." He looked at me directly, knowing that I had heard him.
"Seriously, shut up. You are embarrassing us." his brother scolded, with a look of apology on his face.
"Yeah, but look how gross it is, it's in her nose!" the boy said.
"Mom, tell him to stop." the older boy told his mom.
"What? I didn't hear anything." said the mother while absentmindedly thumbing through a magazine.
"I wonder what is wrong with her..." the young boy thought out loud.

"NOTHING is WRONG with her. She's just fine thank you very much." I said in response.
"Excuse me, you don't talk to my child like that." The mother scolded.
"If you taught your child to shut his mouth, I wouldn't have to talk to him like that. Teach your kid some manners." I walked off, head high yet heart heavy.

How could someone not teach this little boy some semblance of manners? His mom was right there. I remember when I was a child, if me or my sisters or my brother said anything like that we would get a pinch so hard in the arm or leg that it would shut us up. Our parents taught us how to behave in public. If you don't have anything nice to say, don't say anything at all. We were taught that.

I guess it just made me think of how grateful I will be when my daughter will be able to sit in her car seat at the store and someone can just pop their head in and say "Ahhh, what a cutie." That will be the first thing they say. I guess one could call it superficial, they could call it vain, but I just want people to look at the beautiful tiny human I was blessed with and not have to see all the tape, the nasal stent wire, and the duoderm on her cheeks. I want for people to see who she really is, not what she looks like.

I'm sorry, I know my posts have been a little depressing as of late. I am really emotional about this, more-so now that surgery is in two days. I just wish some people would teach others about kindness, and manners, instead of letting snooty nosed brats open their mouths and make fun of a defenseless baby while her mother is in ear shot.

Sorry, I guess I just got upset today. Anyway, that is all for now. I will talk to you all later, you will get a picture posting on Monday night, before bed - pictures of the Kaylee girl's last wide smiles. Thank you, whoever you are, for reading through this entire thing.

JESS

This is how excited she gets when she sees Ronan the Destroyer. They love each other so much!

Week 14 - A Little Bit of Heartache.

Well, I've had a week. Kaylee has been perfectly fine. Other than one day of ouchie due to a diaper rash, she's been great. She is getting so big, and so vocal. It really is adorable. It is actually really hard to believe that she will be five months old very shortly. I can't believe how much being a mom has changed me, and my life.

However, this week I became distraught and I thought I would tell all of you why.

I was sent a comment on this blog (which I have to approve/deny) which I deleted because of it's very sensitive nature. I was sent an anonymous comment which had a picture of a deceased infant. Underneath that picture was a comment: "Be glad this isn't you. Quit complaining."

For the record, I am completely thankful that my daughter is alive and I feel for any mother who has lost a child, I cannot imagine anything more horrible.

That being said, I don't feel as though I "complain" about my daughter. I am merely expressing my feelings about our own situation, which is unique enough to warrant discussion. So, I will continue to do what I do for my daughter's sake. This is a blog more for her than anything else, and for others who find themselves faced with the challenge of having a cleft affected baby. To help those who read this to understand what I have gone through I offer this:

c1987 by Emily Perl Kingsley. All rights reserved


I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy.

You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and
Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Here you can find the original poem/story -Welcome to Holland.

And to end our day or start our morning depending on where you are at in the world:

Kaylee Monster in the Ocean Swing of Doom.