Barb VanHerreweghe, SOFT President, has a daughter, Stacy, who has full trisomy 18 and who is 31 years old! Barb writes a President’s Message at least annually and she can be reached by accessing the “About Us>Contact Us” tab on the web site menu.
Dear SOFT Families:
Another conference is over and done. It is a time for special moments, special friends and memories that have to last till next year. The conference is such a special time for our family. We wait for it all year long and it is over in such a short time. It is already time to plan for the next year.
So where will we meet? Norfolk, Virginia, here comes SOFT! We will be at the Sheraton Norfolk Waterside Hotel July 10th-July 13th. The rate is $115 per night. You can call in your reservations to 1-800-627-8042 or directly to the hotel @757-622-6664. Make sure you let them know that you are with the SOFT group for the special rate. Help us out by using the room block we have reserved for our attendees. SOFT needs to sell our room block or we will have to pay for conference space which increases our conference registration rate. When you call to register make sure you ask for any extras you may need so they can plan for your stay. For those who want to plan two years in advance, meet us in Salt Lake City. There will be more details to come on both conferences real soon.
In March for Trisomy Awareness month, SOFT announced that membership is now free. Hopefully, you have all sent in your registration to keep you up to date. If you need to send in a renewal you can do that online also. Remember, we will need you to continue to renew yearly so we can keep all addresses, emails and surgery information up to date. (editor’s note: There is also a renewal “short form” for those having no change in their family information) At the board meeting this year SOFT made several decisions that you will see in the near future. We have decided that with the registrations we are receiving very few want to receive the newsletter in the mail and nearly all wanted the E-Newsletter, found in the website Newsletter Library, instead. It was decided that this issue, the conference newsletter, will be the last issue that we print. This allows us get the newsletter to you quicker and you will be able to find past newsletters in the newsletter library. If you have misplaced an issue, now you can find it. If there is anyone who is unable to get the newsletter by computer you will need to let me know and I will print and send you a copy.
The newsletter will be what you all make it. We want to receive your stories about your children and family. Keep us up to date. If you see something that might help other families let us know. We encourage you to send in your stories and pictures. This is another way we can keep informed and up to date on all families during the year. We are not going to include the Board list and Chapter chair list in each newsletter each time since these are on the website. Please refer to those on the new and updated website. We are saving that extra room for your story.
Check out the website. All the books have been reduced in price. Now is the time to buy a copy for your Doctors and help them to understand more about your child. All books are now reduced to $6.00 each. What a deal! While you are on the website to buy your books keep looking around to find the many other articles, photos, family stories and conference information. Add your family story with a picture
to the Family Stories section. You do not need to be asked to share your story. You can update your stories so we know what is always happening with your family.
At conference each year we have three board positions that rotate off. We would like to thank the families that have served over the last three years. The families were the Healey’s, Barnes’ and the Kubena & Kaufman family. Three families were elected to serve on the board this year. The Kubena & Kaufman family, Christine Donohue-Werner and the Crosiers were elected to fill the open three year terms. The families are expected to attend each of the next three conferences as well as serve on a committee. Thank those going off the board and welcome the new board members.
We want to work together to get pictures of Sibs, kids and their families enjoying the summer or other activities together. When you are enjoying the great summer weather or vacations remember to snap a shot and there will be more details soon from Terre on how to get your picture ready as we did for Trisomy Awareness, Mother’s Day and Father’s Day. We are going to make this a joint effort with Hope for Trisomy. We are waiting for your creative ideas to make this fun!
For those who signed the poster for Jack and Judie at conference, I wanted to let you know they really enjoyed it. They are framing it for their office wall. Keep your prayers and good thoughts coming Jack’s way as he continues to grow stronger during his kidney dialysis.
We welcome any new ideas you have for the newsletter, website or Facebook group and pages. Please help us make each of these what you want! We don’t know unless you share with us. We are looking forward to your stories in the newsletter and on the website.
Barb and Dave VanHerreweghe
Dear SOFT Families:
It seems like the holidays go by so quickly. We barely had time to enjoy our family and friends and back to work we had to go. We did enjoy time with my sister who came in from South Carolina as well as with some of her family. We had some really nice weather right up till Christmas and then we got the snow that started falling.
After hurricane Sandy, Andy spent the month of November and most of December in NYC cleaning up with work. Little did he know he wouldn’t get that week off when he got home because the snow would start and not stop for several days. He worked endless hours cleaning up the piles of debris in NYC and then the snow in Rochester. The snow was tiring but at least as his team from AP Enterprises said while in NY; it wasn’t piling up people’s lives in piles like they did there. They piled so many memories. We were so proud of his work but we also missed him while he was gone. Especially Stacy, she loves the way he shakes her up every night when he gets home from work. She is enjoying him being home for a while now.
Stacy is dreaming of palm trees and blue water. We are finally going on another cruise in March and her Dad is joining us for the first time. We fly in to Puerto Rico then take off for a 7 day Southern Caribbean cruise. We are so excited and we are always ready by March as we have been in winter long enough. Stacy enjoys the warm breezes and fresh air and just walking around the pool deck. She loves to go to the many shows and enjoy the night life. Dave was in the Coast Guard so has always said he has been on boating patrol for long enough. Stacy is looking forward to showing him the ropes of getting around a real boat! The kind she likes being on! Wish you could all be with us.
When we get back from the Caribbean it will be time to finalize the plans for this year’s conference. We have never been to Rhode Island and we are really looking forward to some of the sites as we travel from NY to Rhode Island. For those that have never been to a conference I will try and help you understand what you might expect. This is a time for an extended family to get together for a reunion. It is a place where you feel safe and everyone understands what you are going through, whether you have your child, have an angel or you are a friend or family member of either, you are welcome here. No one stares, no one judges everyone learns from each other and they have a great time together. This is the time that you may see wheelchairs spinning on the dance floor with the biggest smiles a child can have from ear to ear. You will see children walking, wheeling or being carried as they participate in the Zion Lint Walk of Fame. It is a time to learn at the workshop presentations and get some opinions from Doctors participating in our clinics. You will be able to send pictures to Kris Holladay so your child can be a star on the big SOFT screen. Who could ask for more? We can because you will find a chance for sharing your story with others experiencing the same things you are. We will enjoy a picnic together and then remember those that we have lost with a memorial balloon release. We watch their balloons fly high to each and every angel we have known and loved. Tears and hugs as you remember that special face and smile, Love you will never forget. Then we go back to the hotel and attend an auction of a lifetime. What surprises will be your purchase this year. It is a chance to wind down and say goodbye. It’s like a family reunion you really want to be at and can’t wait to get there. So what is your excuse? Make your reservations for the hotel and save the date. Can’t wait to see all our SOFT family
New and old. Meet us in Rhode Island.
Barb, Dave, Stacy and Andy
The 2012 conference is history and it is time to move on to 2013. Next year we will be in Rhode Island from Thursday, 7/18/2013 to Sunday 7/21/2013. Our conference will be held at the Crowne Plaza Hotels and Resorts at the Crossings. This is located at 801 Greenwich Ave in Warwick, Rhode Island. The room rate is $119 per night. You may register at firstname.lastname@example.org. Don’t forget to use the three letter group code of SOF. You can also call the reservation department at 401-732-6000 or 800-227-6963. Don’t forget to let them know you are with SOFT as that is the only way to get the SOFT room rate. The cut-off date is June 25,2013 so register now, the room rate is only good till that date and there are a limited number of rooms at that rate.
Our family is really looking forward to this conference. We have never been to Rhode Island and it gives us the opportunity to visit a beautiful eastern seaboard state.
We are weathering our storm Sandy here in New York as we speak. Lots of rain and heavy winds; we will see how the over-night goes. Soon the beautiful colored leaves will be all off the trees. The snow will start falling soon after that and the Holiday season will be here. I love the holidays especially when we start getting all the holiday greetings with all the kids pictures. It is so much fun to see them all in the newsletter. Don’t forget to send your greeting for everyone to the Thompsons so we can meet all your childres.
Well the new van we got for Stacy got hit by a lady as we waited for chicken barbecue. I have a funny story that goes along with that. As the lady hit us (I was sitting still), Judie yells out, “Oh my gosh, she is old and shouldn’t be driving!” Later as the police officer was asking for everyone’s birthdate I gave him Judie’s and the lady who hit us says “Wow, someone older than me, I am a year younger than her.” Andy just turned around and started laughing as did I because Judie was so sure she was younger. It all worked out okay. Everyone was safe, we got the van fixed, we know Judie is the oldest of anyone and we won’t stop for any more Chicken Barbecue!
Stacy has been healthy except for a time period of possible seizure activity. We increased her Keppra a little and we are hoping that will stop the issues she was having. Just when you think you have everything under control she tends to send us a curve ball. I guess she doesn’t want to make life too easy. We are however going to go on a cruise again after 7 years of not going. I am sure she will be happier once she starts seeing the palm trees and feels the nice warm breezes in the Caribbean when we get there,
From the VanHerreweghes, we wish you all happy and healthy holidays. Enjoy your family time together and we will remember all those angels that had such a short time on this earth but who are forever in our heart.