Sunday, May 3, 2020

Shane and Wyatt Down Syndrome Foundation: SOCIAL “ANYTHING”GoodDay!!  We are wondering h...

Shane and Wyatt Down Syndrome Foundation: SOCIAL “ANYTHING”

GoodDay!!  We are wondering h...
: SOCIAL “ANYTHING” Good Day!!   We are wondering how you are all doing and how you are holding up.   We also so that you are heal...


Good Day!!  We are wondering how you are all doing and how you are holding up.  We also so that you are healthy and so are your families.  We also know this is not the case for some of you and we want everyone to know that we have you in our thoughts and prayers.  

This is becoming a more difficult time for both Shane and Wyatt.  Not from a physical health standpoint as both have been reasonably healthy.  But emotionally?  It is starting to take its toll.

When Shane and Wyatt were born, initially we questioned why they were born with Down syndrome.  We questioned why both?  What were the odds of this happening?  Why our family?  Today, we fully understand what a blessing they are, not just for our family but for so many people.  They are also blessed they have each other.  It is the bond they have that has kept them sane over the past few weeks.

From early in their lives, we have kept them as active as possible.  We have never shied away from the public or from including the twins in the community.  I believe this has helped them socialize and become the who they are today.  This is a big part of who they are and what they do.

Now suddenly, SOCIAL DISTANCING.  Who saw this coming?  While we may agree or disagree, we at least know what is happening and why.  Shane and Wyatt do not.  they do not understand why there is no school.  Why they stopped going out, even to the store.  Why no sporting events? Eating out?  It is starting to take its toll on them.

Everyday they ask when they wake, school?  The disappointment when they hear no.  They ask, baseball? Basketball?  Football?  And again disappointment.  Everyday, they dress themselves, pack their backpacks full and pretend they are going somewhere.  Shane especially will go outside and stand there and ……… wait……… look around……… and at times just looks sad.  He walked around the yard the other day for almost an hour like this.  All alone with his thoughts and dreams, I guess.  

They are really missing the social interaction that is such a big part of their sole and who they are.

Zoom and Facetime has helped and hurt.  They LOVE seeing their friends from school, Nana and Pop Pop, Trooper Tony and others but are also extremely frustrated when the calls end.  They do not understand why they just cannot see them in person or why the calls had to end.  We have come to expect the melt down after each call but understand the value and joy during the calls as well. 

We have started posting a #DailyHug photo every day.  We hope you enjoy this, and the responses have been awesome.  Shane and Wyatt have picked some of the photos that are posted, and they remember each person or situation of when the photo was taken.  This brings daily joy to them but also leads them to question why they are not out and about taking new photos instead of looking at the past.  They also are read all the replies and see the GIF’s and photos posted in reply.  We thank you for this.  

Coming back to why were they both born with Down syndrome?  Who knows, we no longer ask why but instead say Thank goodness.  This time would be so hard for them if they were going through this period without a partner.  I know there are many people and kids who are alone and trying to figure this out on their own terms.  I do not know what to say, except that I believe everyone should have a twin.  I know that is not possible.  

For now, we will continue to take this one day at a time.  We will get through this and hopefully we will stay healthy from this virus.  We will continue to think and pray for all of you and for your good health as well.  We will keep posting past hugs until we are out hugging again.

Please stay in touch and keep us in your thoughts and prayers.  We value our social media interaction until we can get back out again.

One last thing ………. DON’T MESS with FOOTBALL SEASON this fall.  We need to get to a bunch of games and if we do, all this staying home stuff will be forgotten.


Shane, Wyatt and the Waksmunski Family.

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.