sometimes I post about the bad things, and forget to update. I have been thinking a lot about how to update on this issue...here goes...
Jim has been working SO hard to try to be here for me more. He is doing things he has never done, helping much more, complaining MUCH less. He drove a van full of 15 wild kids 2 plus hours without a single whine yesterday. He has been helping SO much with Ciarra, taking her to camp in the mornings and helping get her ready. He is finding time for all of us, and being much more fun to be around. We had a good long talk a few weeks ago (around fathers Day) about trying to balance HIS time with OUR time. Without going into too much detail, he didnt have a great role model in the daddy department, and he isnt one of those in touch with himself guys who analyzes his own behavior. It took me really sitting down and talking (talking...yep..that was it lol) to him to make him see. He was repeating the same things that hurt him as a child. He was not aware of any of it. Things arent perfect, obviously, yet. They may never be perfect. But I feel like we have made huge progress recently, and I wanted to brag about him a little.
Sunday, June 29, 2008
sometimes I post about the bad things, and forget to update. I have been thinking a lot about how to update on this issue...here goes...
Saturday, June 28, 2008
We had a GRA+EAT day today. Ciarra had her birthday party...she turned ten yesterday. We decided to have it at a water park about an hour away. We rented a 15 pssgr van to haul the kids that needed rides, and some other families joined us there. It was a VERY busy day. We rode gokarts, climbed the climbing wall, did the trampoline slingshot thing, played mini golf, did the water slides, had pizza and cake and ice cream and LOTS of fun.
Ciarra has 13 kids in her class, ten of the thirteen came! 2 others canceled this morning, one was sick :( We had those ten, plus Hunter & Amara, Andrea & Aislynn, Kristin, her friend Davey, Jesse and his friend Peter, Ciarra's friend Margaret (who also has DS!) and several other friends: Wendy, Emily, Betty Ann, Margarets big sister (forgot her name)...and me and Jim.
LOTS of people needing cake! Good thing we had a HUGE HUGE Hannah Montana cake! Ciarra got piles of awesome, thoughtful presents, and the kids all had a really good time. I was able to find a playstation 2 game of Monster House, which is her new absolute favorite movie...she was SO excited!!
I was so pleased to see how they included Margaret in their group. Even though she doesnt go to their school, they know her through Ciarra, she did Special Olympics with her and came to some practices at our school before playdates with Ciarra...so they knew her. It was neat to see them grab her hand and bring her right into the circle. I think inclusion has so many awesome gifts for us, and today margaret was one of the gang because a whole classroom full of kids does not fear Down syndrome. Neat!!
I am SO tired. But we had an incredible time. I hope the kids enjoyed it as much as they seemed to. It was a really fun way to celebrate double digits. Did I mention that my kid has NO fear!? she was loving the water slides. And the temp here today was 63 degrees and overcast, lol.
Friday, June 27, 2008
how to entertain a 12 yr old boy? Bowling with Mom? No. Movies? Nope. Bike ride...did that. How about....lets make some coke/mentos bombs!! OHhhh yeah. Jesse's coke/mentos experiment needs work. Daddy's potato gun on the other hand? works JUST fine. Boys.
Ciarra recent pics.
Thursday, June 26, 2008
It was hot here yesterday. I laid down on my bed next to the fan to cool down. Pretty soon Jesse came in to chat, and he laid down too. Then 2 dogs, then Ciarra. We were all laying there relaxing when Ciarra, who was in the middle, started getting irritated at Jesse, who was apparently "TOUCHING HER"...oh dont ya love mommyhood sometimes? ;)
So I move into the middle, and Jesse proceeds to start "TOUCHING ME"...he is a 12 yr old boy who likes to be as annoying as humanly possible. I tell him to stop being a pest (he is prone to tickling anyone whose back is turned) and lay still. I settle back in. All is quiet. Then Ciarra says, into the darkness...
"Jesse is a pain in the ass."
OOPS. "Ciarra, we dont use those words, those arent nice words."
"Oh. Is that a potty word?"
"Yes, it isnt a nice word, ok?"
"Ok. Potty words arent nice."
"I know some potty words."
"Mom. I know some potty words."
"Yes Ciarra, but we dont use potty words, ok?"
"Like oh my F'ing word, Mom, like that?" (guilty as charged. Nuff said.)
Ummm..."Ciarra, that is a BAD word, please dont say that."
"I know that word mom, OMFW. That one? Thats a potty word, you said that word mom."
"Yes, Ciarra, I should not have said that, please do NOT say that word."
"Is what the hell a bad word?"
"Ok, time for bed guys...."
Uh...methinks we need to watch the language around here a LITTLE better.
Monday, June 23, 2008
Ciarra started summer camp today, she will go for 2 weeks...her camp is Camp CaPella, and it is a day camp. She leaves at 7:30 and gets home about 5:30. She LOVED it!
Cant believe Im sharing this, but here is a news clip, we were interviewed today. She missed the bus, so I took her in. No makeup, wild hair, raining lightly, and humid...I look AWFUL...(and So fat!!) but man shes cute.
edited to stop the annoying load as soon as downblogger opened.
Wednesday, June 18, 2008
Saturday, June 14, 2008
summer is here in full swing! Ciarra had her baseball tournament today...they got 4th place. You wouldnt know it by the kids though. I love this age. It has been a wonderful season for her, she has made huge gains, learned the rules a lot more, and got some tremendous hits too. Once again, I am thinking this might just be the last year for her, but time will tell.
After the game we had a swimming party and BBQ at a friends house. It was a blast. It is HOT here today, 80 degrees and not a cloud in the sky. Just beautiful, but sunburn weather for sure.
Jim is gone to Mooselookmeguntic fishing, up in the western mountains. He says it is overcast and coolish there today. I miss him but I agreed to let him go fishing this weekend with some friends. Sometimes I hate that he wants to be outside on the go so much. I drove by some families having BBQs together, lawn chairs and volleyball, and I resent it that he isnt that kind of guy. Sure, we have our times, but for the most part he is off doing his thing. Sometimes I am really mad about that, sometimes just resigned to it, other times really sad. It is his loss. He is such a good guy but still hasnt figured out just how fast these kids grow up. While he is off doing his fun stuff, we are here, together, making memories. It is lonely sometimes. I cant believe Im blogging about it. The truth, I guess. I am grateful for my kids and my home and friends and activities to keep us occuppied. But I wish I had someone to spend my days with, too. Im jealous of those of you with men in your lives who are always there, doing the family thing. Jim is a great guy, someday he is going to look back on this time and wish he had been here. Oh well...life goes on.
When we got home, the phone rang. It was Ciarras friend taylor calling. I put it on speakerphone, cause I like to be able to see whats being plotted ;) and it helps me to know what they are planning and help Ciarra if she gets stuck talking and cant be understood speech wise. anyway...Taylor had come over yesterday and wanted to call and say she had had a lot of fun. She wanted to come back today but its late and been a long day already. We made plans for Monday. It is so nice to see these friendships blossoming. Every since we have been limiting time spent with her best friend (and she still IS her bf, it is just much more limited) Ciarra has been really having a lot of friends over and doing so much more. The friend is a tiny bit (ok, a lot) controlling, so we hadnt been able to do much of that before, it was always her Ciarra wanted here. Now, it is as though her options have opened up, and also many of the kids have really been rubbed the wrong way by the friend, but now feel much more welcome. So, she is a busy girl. What an amazing thing it is to see these friendships bloom. School ends Monday, and then the summer starts. I hope they will stay in touch, and that some will be in her class next year too.
Ok, enough rambling and whining...I need a nap!
Friday, June 06, 2008
I am so proud of my girl! We have been working on NOT running all the bases in baseball, when she gets a hit she just tears around the bases, not stopping for anything or anyone, passing her teammates, and just doing things HER WAY. Generally, she is tagged out, and runs them anyways. The fans always cheer for her, which wasnt really helping us teach her anything. It is very sweet how much they support her, regardless of team the kids and the parents celebrate everything she does on the field. But we truly believe that if she is going to play, the feel good stuff needs to lessen a bit and she needs to play by all the rules, just like the other kids. It is HARD sometimes, because even I naturally want to give her a little leeway, to always make sure she feels good about what shes doing, and to help her succeed.
Tonight my heart just soared. This darling little girl of mine struck out the first time she batted, and knew after 3 strikes she was done. She took it in stride, walked off the field happily, knowing she had done her best. But then...then she got up again. And this time she clocked that sucker, and ran straight to first base without stopping to see where the ball went..safe at first..and she STAYED there! You shoulda heard her "fans". They cheered as usual, but this time it almost seemed more respectful. Ciarra is really learning the game, and as much as they want to see her smile, I believe they get what I am trying to do. I want Ciarra to earn her way, like every other kid, no gimmies. Seeing her take first base, turn and give me the thumbs up makes me so proud. She listened, she stopped, she waited for instructions, and she paid attention just like any other kid out there. When the next batter hit the ball well into left field, off she went, and she made second...and stayed. Then the same routine, only this time she was told to run Home, and she did..a run earned with good listening, great ball skills, and absolutely no gimmies. Ciarra got a run tonight, but even more, she showed us all that she doesnt need favors, she just needs the chance to play. She can do this, and we can too.
Thursday, June 05, 2008
I was thinking about our lives, the upcoming DS Conference, and the thrill I get listening to people like Karen Gaffney speak. I think about how I get so much out of trying to "be there" for new parents, and how incredibly moving it is to see them go through the process...when they finally get to acceptance it is so cool to see.
And I was thinking about the future. The news of this new 100% accurate drug test leaves me wondering. Abortion rates for DS are already well over 95%. What will happen when this simple bood test is readily available, and people panic and end their child's life based on a prenatal diagnosis...will not having to undergo ultrasound or amnio mean it is even easier to disassociate themselves from their baby, and end its life because of fear? of course it will. People dont like amnio because of the risk of miscarriage. That risk will be removed, and it is obvious that the abortion rates will climb even higher.
Why do Doctors want so badly to erradicate an entire group of people? What did someone with DS ever do to be seen as so inferior as to need to be killed? Who is driving this crazy push to seek and destroy the most vulnerable among us?
And what will OUR future be like? The DS Conferences will become less about new babies, there will be far fewer precious soft babies passed around, there will be fewer excited faces in the audience when Karen speaks, or when the next generation does. "The next generation"...is likely the last generation. Ciarra's generation. That breaks my heart.
Wednesday, June 04, 2008
~Ciarra, standing in right field during her most recent ballgame...singing "Take Me Out To The Ballgame" as loud as she could...especially the "1,2,3 strikes YOU'RE OUT!!" part. And hearing 50 people chuckling at the sight of her.
~ The absolutely astonishingly cruel words of some people who commented on a youtube post I have of her. It hurts to hear the words, sometimes, even when you think you are prepared.
DEATH TO DOWNIES! DEATH TO AUTISTICS! HAIL PURITY!
These sub-humans labelled as "Down's Syndrome retards" are worthless, ugly, and a waste of the world's resources. Sure, you can say "OH WHAT A BEAUTIFUL GIRL LOL" but in the long run, do you really think they will succeed in the cold, whirling abyss of the real world? Political correctness is the only thing making these... these freaks of nature from being exterminated.
~ Still trying to overcome the heartache of Ciarra's best friend here. We talk about it, trying to help her understand that sometimes we have to make choices as parents that hurt...and seeing her lip quiver. God, help her understand...please?
~ Summer vacation starts June 16th here. Today it was in the low 50s. summer??
~ Ciarra got accepted to summer camp for 2 weeks, her good friend for only 1 week...should I even bother trying to send her if she wont have a friend there?
~ I need to get to work planning her birthday....I still cant believe my baby is almost TEN.
~ I signed up for the NDSC Conference in Boston for early July. My best friend was going to go with me, but cant now due to work. I dont think I really even want to go alone. I love the conferences, and I learn so much. But...I hate being alone.
Sequenom Announces Results of Screening Studies for SEQureDx Technology - Update
6/4/2008 8:45 AM ET
Shares Of Sequenom Spike Higher On Positive Trial Results of Down Syndrome Test
Sequenom Inc. Climbs In Pre-Market On Strong Clinical Trial Results
Sequenom reveals positive results from screening studies using SEQureDx - Quick Facts
Sequenom (SQNM) announces positive results from screening studies using SEQureDx
Sequenom says Johns Hopkins University purchases its MassARRAY Platform - Quick facts
(RTTNews) - Wednesday morning, Sequenom, Inc. (SQNM: News, Chart, Quote ), a provider of genetic-analysis solutions, announced positive results from screening studies, using the noninvasive circulating cell-free fetal or ccff nucleic acid SEQureDx Technology.
The company said current standards require invasion of the uterus to sample the amniotic fluid surrounding the baby to detect fetal aneuploidy including Down syndrome. SEQureDx Technology extracts Fetal Nucleic Acid material from a blood specimen collected from the mother to determine the genetic status of the fetus.
Sequenom said, in blinded studies involving about 200 clinical samples, its proprietary test for Down syndrome correctly identified 100% of all Down syndrome samples without any false-positive outcomes. Down syndrome is a chromosomal abnormality characterized by the presence of an extra copy of genetic material on the 21st chromosome.
The company expects to continue its development activities through the end of 2008, and will transfer the technology to laboratory partners. The company plans to initiate a multi-site validation study of several thousand samples in the fourth quarter this year and launch its Down syndrome test as a Laboratory Developed Test in the U.S. in the first half 2009.
SQNM closed Tuesday's regular trading session at $7.66.
Sequenom rallies in premarket on positive Down syndrome test results
NEW YORK (Thomson Financial) - Share of Sequenom Inc. rallied in premarket trading Wednesday after the company announced positive results of screening studies for Down syndrome using the company's SEQureDX technology.
In studies involving 200 samples, the company's test for Down syndrome correctly identified 100% of all Down syndrome samples without any false-positive outcomes.
San Diego-based company said current serum-testing options have detection rates of 70% to 90%, with false-positive rates of as high as 5%.
The stock ran up 14% to $8.75 ahead of the open, a level not seen during regular trading hours since Feb. 14. (SO exciting, isnt it, playing God?!)
The company's technology enables the detection of Down syndrome from maternal blood, using noninvasive circulating cell-free fetal nucleic acid. Tomi Kilgore tk1
Tuesday, June 03, 2008
The truth about Down syndrome.
Still smiling in the face of adversity
By SUSAN SHERRING
For many Ottawans, Marc Tuschak Day might have gone unnoticed last week.
But for Tuschak, his family, friends and colleagues at the city, it was a very special day.
Tuschak, who has Down Syndrome, has worked at the city and region for 17 years, working in the print shop half days.
With an engaging personality and a quick wit, Tuschak has inspired those around him and brought smiles to their day-to-day lives.
At a lunch honouring Tuschak last week, Innes Coun. Rainer Bloess read the proclamation, declaring it Marc Tuschak Day on behalf of Mayor Larry O'Brien.
"WHEREAS, Marc Tuschak has inspired fellow staff with his courage and tenacity in overcoming all barriers to employment in the service of the Ottawa community.
"WHEREAS, Marc Tuschak has further served the Ottawa community by joining with friends and family members in the development of the Down Syndrome Association National Capital Region.
"WHEREAS, Marc Tuschak has marked himself as an outstanding athlete in the Ontario Special Olympics.
"WHEREAS, Marc Tuschak is an enthusiastic hockey fan of both the Ottawa Senators and Ottawa 67's. He is a longtime season ticket holder of the 67's and his high-fives are appreciated by coaching staff and players.
"THEREFORE, I, Larry O'Brien, Mayor of the City of Ottawa, do hereby proclaim May 29 as Marc Tuschak day in the City of Ottawa, in recognition of Marc's important role in serving our vibrant community."
For his colleagues in the print shop, the 39-year-old Tuschak has not just been a valued employee, but someone who helped to add joy to their work day.
"He's been excellent, almost a dream employee," said Bill Scharf, his supervisor in the print shop.
"He makes sure he knows how to do a job, gets it done and then goes looking for more work. He was just one of the guys."
City clerk Pierre Page, whose department includes the print shop, said Tuschak is very special.
"He means a lot to people around here. Obviously, it's partly an issue of giving (someone with Down Syndrome) an opportunity. It shows they can be very independent when you provide them with that opportunity," Page said.
It was clear at last week's luncheon Tuschak really is just "one of the guys" as Scharf described him.
Joking at the microphone, Tuschak gave instructions on how to use it properly, and quickly took over the master of ceremonies from Page, drawing laughter from all in the room.
Missing from last week's luncheon was his wife of 10 years Julia, who also has Down Syndrome. She was away at a swim meet.
Sadly, the luncheon and day honouring him wasn't held simply for a job well done, or even to admire his many accomplishments.
Tuschak has recently been diagnosed with a deadly form of leukemia, and while chemotherapy has bought him more time, his prognosis isn't good.
While everyone is hoping for a happy return, that day isn't expected.
True to form, Tuschak is remaining upbeat.
"Thank you everyone for all of this. I'm hoping everything works out. Now, let's have lunch," he said to the crowd.
The news has left his colleagues and family reeling.
"It is devastating news. The prognosis is the worst. He's been quite brave about it," said Krysia Pazdzior, his sister-in-law.
FACED WITH ADVERISTY
While this story is sad, there are many reasons to write it.
It shows what some individuals, faced with adversity, can do with their lives. And Tuschak has been exemplary.
It reflects well on the city as an employer, and on Tuschak's colleagues, who clearly embraced the likable employee as one of their own.
Bloess said people of Tuschak's integrity help remind us all about what is possible.
"Everybody has different lives, you see a guy like him, he makes the most of it. He rises above it all."
The truth about DS is this: it is a gift.
Monday, June 02, 2008
I wish I knew a way to get everyone I know and love to participate in the fundraiser we started for Parker, over at Pages4Parker. A few beautiful items have come in, but so far the interest has been pretty minor. I don't understand that, I guess. Many of us who blog and have kids with DS are SO lucky. Our kids are healthy, we have decent enough insurance. How can so many people see his beautiful little face, know what he is going through, and still not take the time to even reply with "Sorry, I cant help, but good luck."? I think so many of us are just emotionally drained. There is SO much need, and we certainly see a lot of it in our own community.
But this is different. It doesnt cost anybody anything really. Its a call for craft items. Sure, we would gladly and gratefully accept money donations, too. But most of us have some craft or hobby that we do that we could send a sample out on his behalf. Even if it is just to help spread the word, wont you please help me help him?
I feel so blessed in our lives, we have dodged the biggest bullets so far. Ciarra is relatively healthy. But I know that that could change at ANY moment. I know the things we dread can consume our childrens lives in the blink of an eye. I pray that if our day ever comes, that there will be people there who want to help us. Mostly, I want to know that I did whatever I could do, for the ones I could help, when I had the chance. Maybe it will count as positives in a life with plenty of negatives? I dont know. I do know it feels good to try. It feels right. I think of that little kid...and surgeons just a week or so ago split him stem to sternum and rearranged his insides....that is one tough little kid. It isnt fair that his family should be hit with SUCH tremendous medical bills. Everywhere they turn, there simply is no help. Why is that? They arent poor enough...yet. They still own their house...for now. They pay the bills that flood through their door in a never-ending tide...they are not deadbeats. WHY cant they catch a break?
Please just reconsider helping. Just pass the word on to friends. Parker needs us. His family needs us. If we dont all stand together when one of us has a need, who will stand for us down the road? It takes so little to help. He is doing his part, guys, he really is. Just help me spread the word. Blog about this project. Share it with your crafty friends, on your message boards, via email. Just stand with me to show this family that we hear the struggle and we respect them for staying in the fight. We really can make a difference. What do you think?