Thursday, July 24, 2008

17 years...

Yesterday marked 17 years since Lynn has passed. I grew up with Lynn, I can't remember a time without her in my life until that day 17 years ago. She was like a sister to me, we fought like sisters an loved eachother like sisters. I remember her guinea pig and her barber shop playdough set. I remember her asthma and her machine. I remember her thumb sucking. I remember her love for life and the Lord. I remember the day we went to the hospital and saw her laying there with machines hooked up to her, keeping her alive. I remember her grandmother had her picture and she said she knew how hard it was for me to see her like and that's why she had the picture there, as a reminder of who she is. I never knew death before this, I have never lost anyone before and haven't lost anyone that close since. I think of her often and wonder who she would be now, what she would name her children and if they would be at my house playing with us this very minute.

The day before the burial I had a dream. I was at camp, where I had been when Lynn had her asthma attack, and was walking down the path and there she was waiting for me. I was shocked, I knew she was gone. I asked her what she was doing here. She replied with something bizarre like they needed her arm. But that night, before I had to watch my best friends body be placed into the ground she said goodbye and she told me it was ok. There was a certain peace about the whole thing, I no longer feared for her.

I will never forget the day of her funeral. Lynn was in the Drum and Bugle Corp. and the band was there, playing Taps in the backround. They handed her mother her team jacket and that's when everyone lost it. Her sister dropped to her knees sobbing. There must've been hundreds of people of all ages there saying goodbye. They say only the good die young, it was all to true with Lynn.

I think about her often, wondering...

Wednesday, July 23, 2008


We went to Mystic this past weekend. We had a great time at the aquarium where Rudy saw bawooga whales (baluga whales), penguins (he can walk like them) and lots of fishy friends. We drove to Misquamicut (spelling?) and got there about 5pm, it was just a joy ride but we stopped to play mini golf, ride on the spinning barrel of monkeys, and play ski-ball to win a whistle and a snake. We left Friday night and returned Sunday afternoon. It was nice to get away.

Nothing else new. Just hanging around in the house because of the rain.

Sunday, July 13, 2008

Boston DS Convention

Sorry I didn't update while I was there but I was so tired by the end of the night and my computer wasn't working there.

AMAZING!! I had such a great time, met so many people and learned a little too. So I will just do this day by day I guess.

Friday: We had nothing planned for the afternoon so we slept late and then went to register at the convention center (across from hotel). After we registered we took a look at the different vendors and got some flyers. We then went for a car ride to find some flip flops for Lucy. We got lost on the one ways in Chinatown and I decided when I saw a sign for the MA Pike I would take that until we could see something that looked like shops from the Pike and then get off. BAD IDEA! We end up in Wellesely and drove forever to find anything and then got lost and FINALLY found Boston again and took forever to get back to the hotel, NO FLIP FLOPS. We arrived at the hotel at 4:45pm and had 5:00pm dinner plans with the people from the online group I chat with. We changed and got there in record time.

Dinner Friday: It was a little crazy having so many kids and adults in a small place but it was a great time. I met briefly with the moms, children and dads who have been such an inspriation and support to me through the past few months. The children were so beautiful and I can't wait until Vinnie is old enough to join in all the mischief.

Friday Night: There was a cocktail/cash bar reception where they honored Dr Crocker and many others. One person that stood out to me was the woman who sent me all the information I needed when I reached out to the MDSC (Massachusetts Down Syndrome Congress). I have e-mailed with her back and forth and she was great to talk to in the first few weeks after Vinnie was officially diagnosed with DS. There was a dance for the young adults and bothers and sisters, we peeked in on that and it was pretty fun!

Saturday Day: We attended a session on speech 10:45am-noon. It was ok, not in depth and mostly things I knew. The we met with some of the people from DownSyn (my online buddies) for lunch. The 3 families knew eachother pretty well but they were very welcoming to us and I appreciated that so much. After lunch there was a little time before the next session at 3:45pm so one mother (and her 11 month old) came back to the room with us (she was staying with family so she was on her own with no place to hang out). She has 2 daughters with Ds. After her first was born the chromosome analysis showed a 21/21 translocation (Vinnie is 14/21 translocation) so her and her hubby were tested and both came back with "typical" chromosomes. So when her next daughter came with a 21/21 translocation it was a little shock. She is a medical mystery and is looking for a genetics specialist to see where this could have come from, obviously not just a fluke! So that was amazing talking to her and hearing her thoughts on future children. He daighter is about the same sizer as Vinnie, I guess he really is BIG for having Ds. We went to another session "New Parents Survival" hosted by Jennifer Graf Groneberg (author of Road Map to Holland) and Kathryn Lynard Soper (editor of Gifts). They did an amazing job but I think it would've been something to look into having the diagnosis new or prenatally. They gave out books so I now have 2 extra copies of Road Map to Holland and 1 extra Gifts.

Saturday Night: This was my most favorite night. We went to the big dinner reception. I sat with my DownSyn friends but I was mostly excited to meet one mother and her daughter (10yrs old) because they have been so much an inspiration not only for me but for so many others. This woman has put herself and her daughter out there to show people that our children are more alike than different. She has YouTube videos that have really saved lives of unborn chidren. The admiration I have for her is huge. She has made me believe that it WILL be ok.

So the weekend was so cool. Along with the above happenings there was that sense of family all around. Everywhere you turned there was one of OUR children. The features like Vinnie's, nobody to stare (not that this happens a lot with Vinnie he's too young). Everyone there knew he had DS and I didn't have that awkwardness when they told me how beautiful he was. The awkwardness of "do I tell them or not". I heard stories from mothers new and old. I met a couple that had just gotten engaged and they just happened to have DS. She was so excited telling everyone and showing off her ring, so typical, so beautiful. A young man with Ds in an elevator ticked off at his mom giving her the "talk to the hand" and brushing his shoulder off when she tapped him, so typical, so beautiful (in my eyes). A young couple with DS walking across the street back to the hotel from the dance, arguing about something. SHe walks ahead and when he tries to talk to her she turns away in protest, so typical, so beautiful. Children of all abilities dancing and laughing together...soon will be so typical and it WILL be so beautiful. I will be looking forward to next years convention for the next 382 days.

Friday, July 11, 2008

We're here!

I am posting this from Boston Massachusetts. We arrived about 9pm so we haven't gotten to really meet anyone. We ran into two people from the forum I post at but I was in such a crazy place trying to get checked in that we didn't get to chat. I can not get my computer to get online here so I am on Jayson's and hopefully I can post some pictures from tomorrow. So, we're here, we're safe.

Thursday, July 10, 2008

Getting ready for Boston...

Bags are almost all packed up and the anxiety of it is flying all around. We (Me, Vinnie and my friend Lucy) will be leaving tomorrow evening for the Ds convention in Boston. Friday we will meet up with about 30 (?) other families (about 80 people including children) from the Down syndrome I post at. I am VERY excited to meet everyone that has helped me be in the place I am now with Vinnie. AMAZING people really. I have a HUGE bag packed because I couldn't decide exactly what I wanted to wear adn having Vinnie around you always need extra clothes. Only bad thing is I can not find my wallet. I will search tomorrow while Lucy is at work. I guess I could bring my passport to register at the hotel?? Ugh what a pain.

Tuesday, July 8, 2008

Rudy's funny and other thoughts

The other day we were driving to my grandmother's house (over the river and through the woods...) when Rudy said "God Dammit". Shocked I tried to figure out what he could've said, surely it was not "God Dammit". I look at Jayson and we both look confused. I asked Rudy "what did you say?" his reply "God Dammit". "Rudy, we don't say that it's not nice". "God damn this cup" Rudy says. I pulled the car over and talked to him and haven't heard it since. Where does this boy get this stuff, surely not from his truck driver mouthed mama.

Why is it 1am and I am still awake? Because the vicodin I took 5 hours ago hasn't dulled the sound of Vinnie snoring. We're sick again, well the boys are. I am pretty sure that I will get sick sometime Thursday just in time for the Ds convention in Boston.

I may be getting tired so maybe I should quit now.


Sometimes I try to relay my feelings and don't mean to come off the wrong way but I do. Thanks for the heads up. It was outta love really.

Sunday, July 6, 2008

Viewing my blog?

I am so new to blogging so I am sure there is some way to see who is looking at your blog beside the "Livefeed" thing I found but I don't know what that would be. Anyway, through the live feed you can see the area in which the person reading is from and how they got to your blog. Most are from my favorite forum EVER but I also today saw one through Google, searching for Echogenic Focus. So I wanted to write a little to the people who are searching for answers, who are scared and who are lost in finding out that their child may have Down syndrome or some other chromosomal abnormality.

First off, congratulations on your upcoming or recent arrival. Your child will amaze you, "typical" or not. You are probably scared, I've been there. I may be new to this but I have found that most of us have the same feelings. Obviously you are searching for information, for hope. I too searched the internet into the wee hours of the morning. Not fun and some of the stuff you will read...OH MY! NDSCCENTER.ORG is the National Down Syndrome Congress website and they have great UPDATED information, so much out there is outdated and scary. There's also many parents out there waiting to tell you all about their wonderful children and lots of blogs out there too. I have found that most people who have children with Down syndrome are so approachable and are more than happy to help you understand DS and most of us are here to listen to you vent, remember...we've been there. Most people don't say "Hey, I think I would like to have a child with a disability" so anger and disappointment is normal and common. I welcome you to reach out to me if you'd like and I can help with whatever I can and share the wonderful sites I have found that have helped me. You're NOT alone.

Thursday, July 3, 2008


There's a very special place that I post. It's a place I found right after Vinnie was born. I have a whole family in the cyber world that I have come to trust and love. I've only known them for nearly 5 months but I have seen their children grow, shared sorrow and tears, rejoiced in accomplishments, prayed for heeling and comfort, and congratulated new(er) parents. Of course all of the people at my very special place are parents or close relatives of someone with Down syndrome.

Before I joined this new family a young pregnant lady had joined. She selected the name ScaredMomma. Ok, kinda corny but I get it. She was to have a baby girl born with Ds. The baby came early and stayed in the NICU, we gooshed over pictures of this precious life hanging onto life. The baby came home and we rejoiced with her. The baby went back to the hospital with RSV and ended up they found a mass on her liver, CANCER. She and her boyfriend decide that they will not seek chemo as they don't want to pump her itty bitty body. Wow, ok that's sucky. I shared this post with my sister and we cried because who wants to have to make that decision?

Yesterday I log on to check in on my new family, to read of a little one's operation results and updates and find this...

Many of us have traveled with ScaredMomma as she described the recent premature birth and health issues of her child. We have recently learned that this story is a fiction. As far as we can tell, there is no child named Jaslene. The pictures that ScaredMomma posted on our forum, on the place we rely on to honestly discuss issues with our fellow parents, were stolen from the blog of a new mom. She is naturally shocked and is very upset about this. We have no idea why ScaredMomma made up this story but she has broken a trust that we have with each other and her account has been closed and she has been banned. We will be going through the process of removing the pictures from all of her posts and deleting topics that she started.

We would especially like to thank the members who uncovered this story and let us know. I don't have permission to share their names.

To everyone, please don't let the lies told by this person ruin your faith in people. We have a great family here and I would hate to think that this one person could make us lose our trust in each other.

RAPED...I feel RAPED. I am going to church because I feel like I belong and it's something new for me and this past Sunday I actually prayed for this baby, Vinnie and I looked into eachothers eyes and I whispered to him each person we prayed for. This is the open prayers for different things (not sure the proper name) pray for those who are ill and then you insert names. I said Jaslene and grampa to Vinnie. This was a big step in my little world of religion and I feel like I wasted it on a fake, if that makes sense. I am happy though that this has opened my eyes and heart even more to the wonderful new family I have become a part of.