March has come in like a lamb....we're having beautiful, warm weather today but have another impending snow storm due in on tuesday. This is the worst winter I can remember!
I would be out enjoying it, raking the leaves off my little yellow spring flowers poking thru....but molly is down again. I hesitate to call it the flu...but she's been spiking fevers (102) and could drown in those little liquid lungs! Given it's viral...we have to wait a few days before we make the trip to the doctor. The 'mommy-waiting-game' ..too soon? no antibiotics... Too late? Pneumonia!
I was stroking her hair this morning as we waited for the IB to kick in. It is so hard trying to explain "sick" to her. Instantly my thoughts and heart went out to Amy, and Nicki, and Susan, and Renee and Nancy Levin, and Mimi...and all the other moms out there that have to deal with so much more than 'the flu' They have to try to explain to their innocent babes why they are allowing doctors to pour poison (chemo) into their bloodstreams.
Please take a second in your busy days, and remember these children and their parents in your prayers. We offer up all our discomfort and worry for them.
Kudos go out to Gabe, who is taking advantage of the nice weather and moving his new family-in-progress to a better living enviorment. I'm very proud of the daddy he has already become...and proud that he continues on with his college studies. He's taking care of the future. Sorry I couldn't help Gabe, totally intended to, but sick-duty calls.
When a 'typical parent' sees a family with a child of enhancement in public, there seems to be 4 general types of reaction. They all involve 'the looks'
I should say my sons coined the names of most of the looks we get, and trust me, when you were making 'that' look at us...you were getting your own 'look' back!
THE PITY FACE
This is from the well-intentioned, liberal-minded, faith based looker. They know that they should love all creatures of God, and *sigh* isn't it just too bad about that little kid. We deserve lots of pity prayers.
Now, don't get offended...im a liberal, faith-based individual, and probably threw a few 'pity faces' of my own before Molly...that being said...GET OVER YOURSELVES!! We need no pity, nor deserve it! There is NOTHING 'sorry' about the birth of this child. SHE'S PERFECT!! really. I know you don't understand it....but to us she's perfect! She IS what the Father imagined when he wanted to create the perfect human. She may not ever be a rocket scientist.....but if more were like her....rockets for war would never be need to be built.
No, she is not a circus side show. Stop craning your neck. Stop whispering behind your hand to your cohort. If I thought you had a serious need to know, I'd invite you over for questions, but you don't want to know...you're stuck in high school, and are looking for material to perform at your next cocktail party. Stay away or be punched!
Unfortunately, we see these more than you would imagine, and I know more than I'd like. Do us a favor, reader, and when you see/hear someone ridiculing the challenged?? Express your disgust and just walk away. IT'S NOT FUNNY!!
THE "I HAVE A DOWNSY COUSIN-IN-LAW"
These guys really jerk my jaw. They come running over anytime they find you out in public, YELLING about someone in their family/at their job with a similar chromosomal enhancement. They think because they are related to someone, they are experts, but continue to use the outdated and offensive language that makes all parents with kids with special needs just CRINGE! They unfortunatly, can be YOUR relatives, and spout their 'knowledge' at family funcitons or celebrations. I have even had a young physical therapist walk up to me at a ballgame, and tell me he works with down-si-an adults!!
Please learn what's acceptable language and TEACH IT to your representatives. You know I'm NEVER gonna use THAT establishment, and I'm going to steer my friends away from it! CALL ME! I will be happy to guide you along the way.
These are my favorites. If you're a seasoned people-watcher, you catch the glimpsers. These are the people I want to talk to. Their sister has just got the results of the amnio. Their first baby's triple test came back with elevated numbers. They have a need to know. They just glance your way, trying not to get caught, but earnestly seeking out your family's dynamics and interactions. If you watch them long enough, they eventually will glance up at you, and you can invite them over with just a glance of your own.
I had a man walk up to me at the store and ask me about Molly. My "protective" instinct went into code red, and I blew his question off with my usual "she's a real skunk" phrase, and followed up with an appropriate story. (Molly ALWAYS has a new appropriate 'skunk' story)
He backs off a little...seemingly to RECOGNIZE my little dance...explains to me that his daughter was in the other class at school, and was THAT class's representative for 'spring queen'. (Molly, as you all probably know, was elected to represent her TYPICAL kindergarten class, as a princess candidate, at the spring festival) He continues on and says he video-taped the whole thing, and captured a little of Molly....would I like a copy?
Now, at this contest, Molly hit the stage and as a TOTAL surprise to us HAMMED IT UP!! she bowed, she blew kisses...she spun around and totally WON THE CROWD OVER with her 'queeness'. Our camera died right in the middle of it, so I JUMPED at the chance for a copy!
He brought it to me, and we plugged it right into a tv/vcr combo at the store. His film panned around the crowd and he introduced me to his family..."that's my wife" pan pan "that's my daughter" pan pan and STOP. The camera stops on an older man, who happens to have down syndrome.
I turn around and look at my new friend behind me, who is beaming "That's my big brother"
Yep, I'm not an expert at reading EVERYONE, but I've learned to keep a keen eye, and have my speeches ready so that I'm not caught off-guard. Sometimes I get pleasantly surprised.
Today's topic comes from 'talking' to all the women I do online. They have HORROR stories of ridiculous things that family members/friends have said regarding their child with DS.
These "nuevo-experts" scan an article in the reader's digest, and all of a sudden become geneticists! They "know" that this happened because of 'sticky eggs' or 'sticky sperm' (redundancy?) Usually, the parents are SO SHOCKED they couldn't speak.
When the offended parents come into the privacy of their peers, they are horrified not only at the statement itself, but at their own impotency in rebutting it! They feel as if somehow they just failed their child.
So, moms and dads, this one is for you. Print it out, leave it lay around,or maybe cut out the thing that relates to you, and stick it into the offender's windshield!
For the rest of you? Come and ask me right up front if you have questions. I'm going to know if you have the need, and am happy to help. We WANT you to know what's going on, and how we feel. Our kids are just like your kids. Molly is just like her sibs. She has the same quirks, the same humor, the same flu. The only thing different about her is my protectiveness. It also seems to be enhanced with this child.
Just remember, these children are more precious to us than life itself. Treat them as such and we'll all get along jussssst fine!
Another year older!
7 months ago