Thursday, April 26, 2012

Now You Know

     I should have been born an Italian- I could have been Carmella's sister on the Sopranos. I have a quick, hot temper and my venomous tongue is rarely kept in check- I prefer to let it roam freely and attack at will. Those of you who know me will be surprised to learn that I am also a master at keeping things close to my chest; I remain quiet and unassuming about a lot of things. If you are family or a friend I usually censor my strong opinions and try really hard to bite my wicked tongue. Usually. If you aren't related or well liked, watch out, because this bitch will gladly snap on your stupid ass for doing/saying something mean spirited/selfish/assholish in any way.

     That being said, I belong to two private Face Book groups for families with Isodicentric 15 Syndrome, like our daughter. It is a safe place for us to vent and listen, share and encourage, learn and grow amongst other people who not only understand our situation, but are living it as well. I often come across postings about family and/or friends saying or doing something that results in them being immediately deleted, blocked, and dismissed in real life. I often wonder if this is a knee-jerk reaction or have these people been previously made aware of their feelings and they chose to act like a dipshit anyways. I got to thinking: Do my family and friends know how I feel? Maybe they don't "get it" because I'm so tight lipped about it. Maybe Nick and I should stop trying to make it look so easy and let our guards down, letting others see it for how it really is: difficult.

Things You Might Not Know:

1. I hate the word "retard." The context that you are probably using it in is offensive and unnecessary. I won't call you on it if you use it in my presence because you are an adult and I feel that you should already know better. I'm not your mother, or your wife so it doesn't bother me that you look like a douchebag. Just know that "retard" makes my insides crawl with disgust.

2. "It's just a runny nose" makes me want to back-hand you across the room. If your child is sick, don't bring her around Noelle- or at least warn me so I can lie and make up some excuse as to why we can no longer go. What is a three day runny nose for your kid is a three week ordeal for Noelle ,in which she gets really sick and her illness always holds on, white knuckle tight with both hands. She stops eating when she's sick, and since she doesn't drink, her food is her only source of hydration- great, now we're on dehydration watch and might have to bring her to the ER for an I.V. The flu she fought last week made her lose 4 pounds- a lot of weight if you only weigh 30 pounds. Show some consideration.

3. "Really? She doesn't look like there is anything wrong with her..." I get this frequently after explaining Noelle's chromosome anomaly. I understand what they mean- their wording is just tacky. This actually doesn't bother me. Other parents of special needs kids may not be so easy going though, and will karate chop you in the face. Beware, you've been warned.

4. Declutter your house and hide all breakable, valuables when you know we are visiting. Yes, I know that this is bold to ask,but Noelle isn't great at walking, she has an uneven stride and wonky balance, and she bumps into things. She also has poor vision and trips on things (even 100 pound dogs) on the floor. If you consistently don't declutter, we usually stop visiting. It's too dangerous for Noelle and stressful for me: I can't afford to replace your great-grandmother's heirloom collection of Royal Dalton figurines from the pre-Depression era. Christ...

5. When I cancel a morning date- I'm not being a jerk. It usually means that Noelle was up all night kicking her door for fun and our entire household is exhausted. Or we had a midnight "shit-uation" and had to spend hours scrubbing crap. Literally. Off her walls, off her bed, off her door, off of her, washing her bed linens and blankets and toys. I'm tired and in a shitty mood. har har..

6. When I cancel an afternoon date- I'm not being a jerk. Noelle has many nights where she doesn't sleep. If she has a few of these back-to-back, she'll go down to nap at noon and sleep until the next morning. I'd rather hang out with Rachel Ray and listen to her laugh all afternoon than wake Noelley up.

7. It's hard to get a babysitter. Usually our parents watch our kids. We can't just pay some teenager $7/hour to watch them- we need someone who can recognize seizures and who knows first aid if she chokes on her food. If our parents are gone or booked watching other grandkids, then we have to dish out $20-$25/hour for a sitter qualified to care for Noelle.

8. Noelle doesn't chew her food and chokes easily. She also doesn't drink anything. Ever. She won't touch food with her hands. We have to cut or mash everything up and ensure that she gets enough liquids through her meals. It has taken us years to teach her to feed herself. Not every restaurant has food that she can eat; not everything on your table is suitable for her. Meal time is all-encompassing and tiring. I rarely get to sit down to eat.

9. When I say "I need a break" what I really mean is I need a fucking break. Now! I'm tired from not sleeping well, I'm worn out from carrying Noelle around everywhere when she won't walk, I'm irritated to my limit from having to snuggle her non-stop for the last 8 days and getting nothing else accomplished, and my left eye is twitching from her constant whining- which is how she communicates 95% of her needs. I can go long periods without this stuff weighing me down, but when I've had enough...if you can help, please do. If you can't, stay clear: shit is about to get nasty.

10. We never sleep well. We have a serious fear of Noelle passing away during the night. One unexplained, and devastating aspect of Noelle's syndrome is Sudden Unexplained Death in children. We check on her twice a night. If she sleeps in, we worry. If she sounds funny while sleeping, we're tempted to wake her. It's a topic that makes me feel sick; I have a hard time even discussing it with Nick. I think it's just more practical not to sleep until she is 20...

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