Sunday, July 06, 2008

update on us

I just wanted to say...YAY! Jim has REALLY been here and with us for the last few weeks, not here wanting to be elsewhere, just HERE. We have been on vacation for a week, it will be awful hard to go back to work tomorrow. But this has been a good time for us, we didnt do a lot of anything, just enjoyed each other and puttered around the house. Went out to eat this afternoon, and played around here. His moods are better, he is less stressed, and he seems genuinely to enjoy being here. I dont know if it is because of the talk we had, or just finally opening up to me about his own childhood. Whatever it is, thank God it happened. I love him, and life is good right now. We have been together since I was 15, and I am 40. Took long enough, huh? :)

Saturday, July 05, 2008

Godspeed, little man

Friday, July 04, 2008

my heart is broken-again



When Jesse was born 12 years ago, I was a Girl Scout leader for Kristin's Brownie troop. I loved it, loved the kids (who are all 19-20 now) and had so much fun with it. One of my girls was a darling little girl named Andrea. You may notice a recent picture of her in a post titled "For Andrea". It is a picture of her with Ciarra. Andrea is like my own in many ways, and her new baby Aislynn is family, too. They became my family when Andrea's mom (and dammit, I will admit, I knew the tears would flow writing this one, so forgive me as a I type with blurred vision) when Andrea's mom Wendy became my co-leader. Wendy was a single mom, kind of a redneck girl like me. We hit it off so well, and our girls did too. She doted on Jesse, was his wrestling buddy and biggest fan. She went with me when we picked up Alex in Connecticut, and when we buried him. She was there for me when Ciarra was born. We have gone through puberty in 2 sets of kids, I held her son before she did. I took the first pictures of her holding her first grandchild. Over those 12 years, we have become very close. It is that comfortable kind of close, where you can fall asleep watching tv late at night and she does, too. Where a weekend when they havent been here is rare. When the high sweet voice of her precious 4 yr old son Hunter isnt wailing "I wanna stay at Chelle's house!!"






Wendy is the best friend I have ever had. We look alike, we think alike, people either think we are sisters or lesbians, and I laugh more with her than I ever have in my life. She has listened and talked quietly many times, she let me tell her to "grow a backbone" and then listened to me whine when she did grow one and used it on me. She is my BEST friend.



We introduced her to our friend Rob years ago, and they have been married since about 2000. Jim was their best man. Hunter joined Wendys daughter Andrea and Robs daughter Amara, and was the glue that bound them all together. A few years ago, things got really tough financially, and they moved to Florida, to stay with Robs folks. I thought I would never breathe again. We had dinner with them the day before they left, and as I came through town with the groceries, I passed their house, and the piles of trash and throwaways waiting at the curb, and the sight of the trailer with all of their stuff in it undid me. I came home, cooked dinner, then tried to sit and eat, but I couldnt swallow. I left the table, and they left and drove away with hardly a word spoken. What words do you use? "I'll miss you"? It doesnt come close. For 12 years, we have done everything together. She is the sister that was taken from me through adoption. She and the kids come every year to help decorate the tree. Thanksgiving isnt Thanksgiving without our famous apple dumplings and all of us crowded around my little kitchen table laughing and eating till we want to die.
Rob and Wendy lasted about 8-9 months in Florida that time. They hated it. Too hot, too city, too far away. We stayed in touch, went down for a week and hung out, but the hole they left was so big that I could easily have fallen into it. I missed Hunter's voice, I missed Amara...who stayed here with her bio mom but might as well have been on the moon. I missed Andrea. But mostly I missed the best friend who made me laugh so hard I cried, and cry so hard I couldnt breathe. They came home finally, restarted their lives, brought back the baby boy who is a part of all of us...filled the hole in my sons heart that will always be Hunter's.


Life was good again. There have been fishing trips, camping trips, paintball parties, Christmas's, birthdays and illnesses, train rides, Halloween hanuted houses, a new Grandchild, Buddy Walks, life...







A few days ago, Jim told me that he had news for me that would break my heart. I thought somebody died. They might as well have. Rob and Wendy and Hunter are leaving again. Winters in Maine are grossly expensive, Rob is on disability and Wendy cant do it alone financially. They are broke, and behind. Once again, the allure of Floridas weather, Robs parents and a free place to stay to get back on their feet has won out. and we have lost. Once again, I am planning a gathering of goodbyes. But this time...Wendy hasnt said a word to me. She must know I know, but it isnt because we are chatting about it. We havent. I know only because Jim told me. I think she knows it is too painful for me to take without being angry and resentful and crying my damn eyes out. She isnt just my best friend, she is my family. This time feels like it will be forever, and HOW do you fill that kind of hole? How do I just smile and say it will be ok when all I can think of is how much I will miss hearing "Hi Chelle!" from that boy, and missing my best friend and almost-sister peeling potatoes on the weekends, hearing the guys BBQing on the porch? How do I just smile and say it is ok when i KNOW how much she doesnt want to go? when Andrea will be here, and Aislynn...and i know she will cry all the way there wondering how she can drive away from first steps, first words, first birthdays? And what about Amara? will she be lost to me, too? I cant breathe for thinking that half of what feels like my family is being taken away. This time, I think, Florida will become their home, and they will make it work. And I will never walk away from maine and its woods and mosse and people. We can talk by phone, no doubt. But in my heart, this is the end of one of the best parts of my life. I never had much for family, as a kid. Certainly never anything/anyone I could count on to be here whenever I needed them. (extended family I mean) My only sister was given up for adoption.

but this is not just me hurting. Rob is Jim's best friend. Wendy is mine. Jesse & Amara have been buddies since the days we dressed them up in "wedding clothes" and married them off. Hunter and Ciarra are best of friends. Kristin and Andrea....it is all of us. We match. We understand one another, get each others jokes. even our dogs are siblings. How do you just lose all that? I know people survive this, but right now I cant breathe. My heart feels like it is on standby, and the tears have flooded my nightgown. And I have to go get groceries and gather up kids and dogs and bathing suits and head out to camp to face whatever awaits me, to say goodbye a thousand times, in my mind. To watch Hunter play knowing that the next time I see him, he will probably be much taller, much older, and not so excited about "Chelle" anymore. To watch Jesse slowly get used to the fact that his beloved Hunter, and Wendy (who has been a HUGE part of his life since he was born, closer than family) will really not be coming over to play WII tonight, or make him blush, or get him to smile. To hear Ciarra ask, over and over because this is simply too big to really understand.."When is Wendy coming home?"

And I have to do it all while trying to remember to keep breathing and not cry. Im not sure I can do that. Who was it that said big girls dont cry?




Tuesday, July 01, 2008

my summer reading



New Directions in Special Education: Eliminating Ableism in Policy And Practice (Paperback)by Thomas Hehir (Author)

Just finished reading this this morning. It is very informative, although somewhat generalized to all disabilities. It gives some very good arguments and research in defense of Inclusion (although also very clear that Inclusion is not for all kids) It really delves into ableism and universal design. I very much enjoyed this book, it is not tremendously long, and is very informative.




War Against the Weak: Eugenics and America's Campaign to Create a Master Race (Paperback)by Edwin Black (Author)

GREAT book, although extremely big and very hard to put down. This terrific book delves into the American roots of eugenics, and is very eye-opening.

The plans of Adolf Hitler and the German Nazis to create a Nordic "master race" are often looked upon as a horrific but fairly isolated effort. Less notice has historically been given to the American eugenics movement of the 19th and early 20th centuries. Although their methods were less violent, the methodology and rationale which the American eugenicists employed, as catalogued in Edwin Black's Against the Weak, were chilling nonetheless and, in fact, influential in the mindset of Hitler himself. Funded and supported by several well-known wealthy donors, including the Rockefeller and Carnegie families and Alexander Graham Bell, the eugenicists believed that the physically impaired and "feeble-minded" should be subject to forced sterilization in order to create a stronger species and incur less social spending. These "defective" humans generally ended up being poorer folks who were sometimes categorized as such after shockingly arbitrary or capricious means ! such as failing a quiz related to pop culture by not knowing where the Pierce Arrow was manufactured. The list of groups and agencies conducting eugenics research was long, from the U.S. Army and the Departments of Labor and Agriculture to organizations with names like the "American Breeders Association." Black's detailed research into the history of the American eugenics movement is admirably extensive, but it is in the association between the beliefs of some members of the American aristocracy and Hitler that the book becomes most chilling. Black goes on to trace the evolution of eugenic thinking as it evolves into what is now called genetics. And while modern thinkers have thankfully discarded the pseudo-science of eugenics, such controversial modern issues as human cloning make one wonder how our own era will be remembered a hundred years hence.



In the first half of the 20th century, more than 60,000 Americans-poor, uneducated, members of minorities-were forcibly sterilized to prevent them from passing on supposedly defective genes. This policy, called eugenics, was the brainchild of such influential people as Rockefellers, Andrew Carnegie and Margaret Sanger. Black, author of the bestselling IBM and the Holocaust, set out to show "the sad truth of how the scientific rationales that drove killer doctors at Auschwitz were first concocted on Long Island" at the Carnegie Institution's Cold Spring Harbor complex. Along the way, he offers a detailed and heavily footnoted history that traces eugenics from its inception to America's eventual, post-WWII retreat from it, complete with stories of the people behind it, their legal battles, their detractors and the tragic stories of their victims. Black's team of 50 researchers have done an impressive job, and the resulting story is at once shocking and gripping.

For anyone who is interested in the battle against modern day eugenics, or who is raising a child with Down syndrome, this is an important read. It will help explain the roots of the current problem, and absolutely help you argue against what is happening to our children.






Sunday, June 29, 2008

the good things

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.

Saturday, June 28, 2008

Birthday party!!





















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

our days

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

Happy Birthday baby girl




the not-so-funny-vocabulary quiz

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."
"Nope."
"I know some potty words."
silence
"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."
"Ok." ..."Mom?"
"Yes, Ciarra."
"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

Summer Camp

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.

http://www.wcsh6.com/video/default.aspx?maven_playerId=immersiveplayer&maven_referralPlaylistId=playlist&maven_referralObject=776765662

edited to stop the annoying load as soon as downblogger opened.