Monday, April 27, 2020
Shane and Wyatt Down Syndrome Foundation: Daily Hugs from Shane and Wyatt
Shane and Wyatt Down Syndrome Foundation: Daily Hugs from Shane and Wyatt: Daily Hugs Anyone who has ever met or spent time with Shane and Wyatt probably received a hug. Well, assuming of course they lik...
Daily Hugs from Shane and Wyatt
Daily Hugs
Anyone who has ever met or spent time with Shane and Wyatt probably received a hug. Well, assuming of course they liked you. LOL. Don’t blame me if you weren’t hugged. Anyway, since the start of the COVID19 stay at home orders, Shane and Wyatt have been home every day. This is hard for them as they don’t understand why they aren’t going to school and why they aren’t going anywhere. At times, this is tough on them.
We know that many people follow Shane and Wyatt on twitter at @shaneandwyatt1 and on Facebook at @shaneandwyatt and we try to post uplifting stories about them and their journey through life with Down syndrome. It is become more difficult now that they are home everyday to post about their travels or events. So, we have decided that the first post of each day will be a photo of a hug. We hope that you see the photo and smile. We hope maybe you see the photo and think about a time when you received a hug from them or from anyone that was heart felt and genuine.
We have hundreds of photos with many people. Keep checking the daily post to see when (if) one of your hugs makes the cut. As I write this, we have posted twice. Both photos had connections to South River NJ, both were with a person we love and have done so much for Shane and Wyatt in supporting them. We love you Mike DeSantis and Coach Joe Susan and can’t wait to hug you both again soon.
Try to start each day with a smile and of course with a hug. Until we hug again ….
Monday, April 23, 2018
Shane and Wyatt Down Syndrome Foundation: Bucknell University & Shane and Wyatt
Shane and Wyatt Down Syndrome Foundation: Bucknell University & Shane and Wyatt: It has been awhile since I posted a blog or wrote anything about Shane and Wyatt. I keep telling myself I should and at times even thought ...
Bucknell University & Shane and Wyatt
It has been awhile since I posted a blog or wrote anything about Shane and Wyatt. I keep telling myself I should and at times even thought I would. After this past weekend, It is time to write again and share some thoughts.
Many of you already know that my family loves Head Coach Joe Susan of the Bucknell Bison. Joe and I are both from South River NJ and although he is older (slightly), I did go to school with his brothers, Jeff and Doug. It is easy to understand the relationship that Joe has with me and my family. After Shane and Wyatt were born and when they were finally healthy enough to attend sporting events, Joe sent me a note and invited us out to Bucknell University to attend a practice or game. I remember asking for more details and his reply was simple, any day and any time. Joe stated without question, we are family connected through South River and he meant it.
Fast forward to today. It appears to me that my family has grown in numbers and in ways that I never imagined after accepting Joe's invite. It appears that family now includes so many student athletes, coaches and parents connected through Bucknell athletics. I never saw this coming but I am so grateful and thankful.
For Shane and Wyatt, life hasn't always been easy. They were born 10 weeks early and weighed just 3lbs each. After birth, we were told that they both had Down syndrome and that was the good news. We weren't sure if either would live or for how long. Both had serious GI concerns, Lung problems, Wyatt was missing half his diaphragm were just some of the medical complications and after about 2 years and hundreds of nights at Janet Weis Children's Hospital, and having endured 10+ surgeries each - they beat the odds and survived. Wyatt also earned his nickname of Super Wy after a particular tough surgery when he coded in his Moms arms. Mary (Mom) started CPR and the response team came, took over and .... well the rest is history. I could not imagine my life without my boys.
Today, as Shane and Wyatt continue to grow one thing is clear and obvious. They both love sports. They have always been around the field and courts watching and playing with their big AWESOME brother Jesse and his teammates. They love to watch Jesse play, hockey and all sports at Bucknell.
Each and EVERY time we are on campus, we are all welcomed with open arms. EVERY student athlete has taken time to say HI, give a high-5 or fist pump. Many have received hugs in return from the twins who appreciate each moment with them. Coaches have invited us to games and practices while making their team available to our family in a personal way that means so much to all of us. Parents have stopped us to say hi or to get a hug from Shane and Wyatt. We thank all of you who have supported us and the twins.
I often speak to groups and folks about Acceptance, Respect and Inclusion for all individuals with Down syndrome. Joe Susan often speaks to commitment and family. Bucknell is a combination of all 5 - Acceptance, Respect, Inclusion, Commitment and FAMILY. You see, we aren't alumni but definitely feel like family. Thank you Coach Joe for inviting us out a few years ago but you failed to mention how awesome the experience would be. Thank you to every person who has ever said hi, smile or just waved to us. Thanks to all who follow Shane and Wyatt on twitter at @swdsf. We hope that Bucknell never changes from this and we hope that they continue to support all individuals of all ability, both who attend as students or fans. We hope that every October during Down syndrome Awareness Month is celebrated on campus and at all Patriot League events. We hope to continue our trips to Lewisburg and hope to see you all again soon. Thank you Bucknell Family for you love and support and a very special hug to our favorite Coach, Joe Susan.
Many of you already know that my family loves Head Coach Joe Susan of the Bucknell Bison. Joe and I are both from South River NJ and although he is older (slightly), I did go to school with his brothers, Jeff and Doug. It is easy to understand the relationship that Joe has with me and my family. After Shane and Wyatt were born and when they were finally healthy enough to attend sporting events, Joe sent me a note and invited us out to Bucknell University to attend a practice or game. I remember asking for more details and his reply was simple, any day and any time. Joe stated without question, we are family connected through South River and he meant it.
Fast forward to today. It appears to me that my family has grown in numbers and in ways that I never imagined after accepting Joe's invite. It appears that family now includes so many student athletes, coaches and parents connected through Bucknell athletics. I never saw this coming but I am so grateful and thankful.
For Shane and Wyatt, life hasn't always been easy. They were born 10 weeks early and weighed just 3lbs each. After birth, we were told that they both had Down syndrome and that was the good news. We weren't sure if either would live or for how long. Both had serious GI concerns, Lung problems, Wyatt was missing half his diaphragm were just some of the medical complications and after about 2 years and hundreds of nights at Janet Weis Children's Hospital, and having endured 10+ surgeries each - they beat the odds and survived. Wyatt also earned his nickname of Super Wy after a particular tough surgery when he coded in his Moms arms. Mary (Mom) started CPR and the response team came, took over and .... well the rest is history. I could not imagine my life without my boys.
Today, as Shane and Wyatt continue to grow one thing is clear and obvious. They both love sports. They have always been around the field and courts watching and playing with their big AWESOME brother Jesse and his teammates. They love to watch Jesse play, hockey and all sports at Bucknell.
Each and EVERY time we are on campus, we are all welcomed with open arms. EVERY student athlete has taken time to say HI, give a high-5 or fist pump. Many have received hugs in return from the twins who appreciate each moment with them. Coaches have invited us to games and practices while making their team available to our family in a personal way that means so much to all of us. Parents have stopped us to say hi or to get a hug from Shane and Wyatt. We thank all of you who have supported us and the twins.
I often speak to groups and folks about Acceptance, Respect and Inclusion for all individuals with Down syndrome. Joe Susan often speaks to commitment and family. Bucknell is a combination of all 5 - Acceptance, Respect, Inclusion, Commitment and FAMILY. You see, we aren't alumni but definitely feel like family. Thank you Coach Joe for inviting us out a few years ago but you failed to mention how awesome the experience would be. Thank you to every person who has ever said hi, smile or just waved to us. Thanks to all who follow Shane and Wyatt on twitter at @swdsf. We hope that Bucknell never changes from this and we hope that they continue to support all individuals of all ability, both who attend as students or fans. We hope that every October during Down syndrome Awareness Month is celebrated on campus and at all Patriot League events. We hope to continue our trips to Lewisburg and hope to see you all again soon. Thank you Bucknell Family for you love and support and a very special hug to our favorite Coach, Joe Susan.
Friday, February 13, 2015
Shane and Wyatt Down Syndrome Foundation: Shane and Wyatt Down Syndrome Foundation Dinner an...
Shane and Wyatt Down Syndrome Foundation: Shane and Wyatt Down Syndrome Foundation Dinner an...: On March 21, 2015 the SWDSF will be hosting our third dinner and fundraiser at the South River Portuguese Club. The food, as always, will b...
Shane and Wyatt Down Syndrome Foundation Dinner and Fundraiser
On March 21, 2015 the SWDSF will be hosting our third dinner and fundraiser at the South River Portuguese Club. The food, as always, will be cater by the Ria Mar Restaurant. This event is a fundraiser that raises money so that we may continue
to provide support and resources to individuals with Down syndrome. The money also helps us to advocate for issue related not just to Down syndrome but for all causes related to special needs or children that may be hospitalized. Over this past year, we have continued to purchases iPads and have given 10 to children who needed them, we gave away over 30 4-DVD sets to help children and families learn sign language, we were able to provide a gift to almost 150 kids over the holidays and have support others in various ways. We continue to advocate and Shane and Wyatt have thrown out first pitches, flipped the coin at football games, been honorary captains and will do even more in 2015. We will be hosting the first ever Down Syndrome Awareness Day with the Somerset Patriots on June 7th and are working on other events as well. We also have supported Make A Wish, as both Shane and Wyatt are Wish Kids, The Buddy Walk of South Plainfield NJ and The Janet Weis Children's Hospital.
We are only able to do this with your support. This March 21st, will be our third fundraiser and last year was a super event. They get bigger each year and are a ton of fun. Last year we had over 250 people attend and I hope we have even more this year. Sara Weir, President of the National Down Syndrome Society will be our guest and I promise you will enjoy what she has to say as she speaks to the exciting future for Shane, Wyatt and so many others. Individuals with Down syndrome are today working in jobs they love, get married, attend college, are self advocates and some even work in Washington DC on such bills like The Able Act.
We not only hope you attend our event in person, but we also need your help with gifts for our raffle. Nearly all the past gifts have been donated to the event. We are looking for themed gift baskets, tickets to events / shows / sporting events, gift cards, dinners, one of a kind experiences, hotel stays, sign or autographed memorabilia or just about anything. No donation is to big or to small. We need your help. Please consider a donation.
Below is the link to purchase tickets or to make an on line donation. Individuals with Down syndrome are free. Come out for a fun time, good food, sangria, dancing, raffle and to meet new or to see old friends. Please contact me with any questions, to make a donation or to help.
https://www.eventbrite.com/e/shane-and-wyatt-down-syndrome-foundation-dinner-dance-fundraiser-tickets-14953548466
to provide support and resources to individuals with Down syndrome. The money also helps us to advocate for issue related not just to Down syndrome but for all causes related to special needs or children that may be hospitalized. Over this past year, we have continued to purchases iPads and have given 10 to children who needed them, we gave away over 30 4-DVD sets to help children and families learn sign language, we were able to provide a gift to almost 150 kids over the holidays and have support others in various ways. We continue to advocate and Shane and Wyatt have thrown out first pitches, flipped the coin at football games, been honorary captains and will do even more in 2015. We will be hosting the first ever Down Syndrome Awareness Day with the Somerset Patriots on June 7th and are working on other events as well. We also have supported Make A Wish, as both Shane and Wyatt are Wish Kids, The Buddy Walk of South Plainfield NJ and The Janet Weis Children's Hospital.We are only able to do this with your support. This March 21st, will be our third fundraiser and last year was a super event. They get bigger each year and are a ton of fun. Last year we had over 250 people attend and I hope we have even more this year. Sara Weir, President of the National Down Syndrome Society will be our guest and I promise you will enjoy what she has to say as she speaks to the exciting future for Shane, Wyatt and so many others. Individuals with Down syndrome are today working in jobs they love, get married, attend college, are self advocates and some even work in Washington DC on such bills like The Able Act.
We not only hope you attend our event in person, but we also need your help with gifts for our raffle. Nearly all the past gifts have been donated to the event. We are looking for themed gift baskets, tickets to events / shows / sporting events, gift cards, dinners, one of a kind experiences, hotel stays, sign or autographed memorabilia or just about anything. No donation is to big or to small. We need your help. Please consider a donation.
Below is the link to purchase tickets or to make an on line donation. Individuals with Down syndrome are free. Come out for a fun time, good food, sangria, dancing, raffle and to meet new or to see old friends. Please contact
me with any questions, to make a donation or to help.https://www.eventbrite.com/e/shane-and-wyatt-down-syndrome-foundation-dinner-dance-fundraiser-tickets-14953548466
Sunday, September 28, 2014
Shane and Wyatt Down Syndrome Foundation: Shane and Wyatt at Bucknell
Shane and Wyatt Down Syndrome Foundation: Shane and Wyatt at Bucknell: It is football season and that means a family trip to Bucknell to cheer on our friend, Head Football Coach Joe Susan and the Bucknell Bis...
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