Joey’s 17th Birthday

Today, April 15, 2018, Joseph Alfred Riguzzi … aka Joey … celebrates his 17th Birthday!  I shared my story of his birth a couple of weeks ago … 17 years passed in the blink of an eye.  I just always thought he would be my forever baby.  When I found out that I was pregnant and my baby had Down Syndrome, my mother said to me that I had finally gotten my wish.  God answered my prayers and I was going to have a baby that would stay my baby forever.  I always wanted my kids to stay little and sweet and innocent.  It was my dream to keep kissing their beautiful, adorable faces and tell them I love them and that they would never grow up.

Nobody wants to actually grow old.  We want to age because it’s better than the alternative, but we want our kids to stay young so we can stay young right along with them.   But here he is, MY baby is celebrating his 17th birthday, but Joey isn’t a baby anymore.  He is a handsome young man whose love has no bounds.  He is far more independent than I ever imagined he would be.  Joey is also a survivor – he was diagnosed with Leukemia at the age of 9 and spent over 2 years in cancer treatment.  He missed a whole year of school, but yet here he is…smart and grown.   He has a rock and roll soul!  His favorite group is The Beatles and his favorite artist is Van Morrison.

My Birthday Love For Joe

Joey has taught me so many life lessons.  He showed me the meaning of the word patience.  I learned how to fully appreciate every milestone and take nothing for granted.  My little man is the soul of our family.  He keeps us all grounded and teaches us what is most important.  The simple things in life make him so happy.  Just the promise of a piece of pizza will keep him with a smile on his face for a whole day.

He always makes sure he asks how your day was and on the rare occasions I get dressed up or even put on makeup, he will tell me how pretty I look.  Joe very rarely complains, and if he does and I explain to him why, he always says “ok, Mom” or “yes, Mom”  and smiles contritely.  If you are sad, he will try to comfort you.  He is very polite and is genuinely so excited to see people that he loves.  He will put his head on your chest, (his version of a hug) or will flap his hands and put them up against his face in pure excitement. 

If he knows you are fighting with somebody,  he will ask you over and over how that person is until you tell him they are good.  I didn’t have the best relationship with my father and if he knew I hadn’t talked to him in a while or if he overheard me complaining about him, he would constantly ask me  how my father was or how is Grandpa Joe.  He would not let up until you said “ I talked to grandpa today and he is good”. Then he would back off for a while.  He just wants to know that everyone is getting along and everyone is happy. 

Joey always wants everyone to be together and loves it when the house is full.  I was a little worried when Bella went to college because he would be the only child left in our home, but of course, he rolled with it and decided he wants to go to college too.   He always puts family first.  Joseph is our glue.  We all see things more through his eyes and he gives us perspective.  If every household had a Joey, the world would be a better place.   Life would be more simple and priorities would be in place.

A More Memorable Birthday Story

When your child has had cancer, every birthday is important, but this story is about is his “Handsome 16”.  He wanted to have a Sweet 16, like his sisters and so many of the young ladies in town, but I explained to him that Sweet 16’s are only for girls, not boys.  He didn’t think that was fair and I have to say, I agree with him –  but I can’t change the culture of that right now so we called it a “Handsome 16”.   How do I make a great kid who asks for nothing, feel as special as he always makes us feel?

After some discussion, we decide to go with an all-day celebration on the actual day of his birthday.  He couldn’t be happier and counted down the days! We would start with his favorite pizza/bowling party and invite all his Down Syndrome friends with their Moms.  Then we would come home to a big family party at the house with vanilla cake and chocolate icing.   I have 3 brothers and Freddy has 4 sisters, so with grandparents and cousins, we are quite a large group of about 40, not including adopted family.

The day arrives and the bowling party went off without a hitch.  Joey and his friend Gerry were sharing their birthday party at White Plains Bowlmor.  They are both turning 16,  born only a couple of days apart and we had been celebrating together for a few years.  This is a great support group of friends and any chance we get to spend time with each other is special.   Our beautiful kids get together and it doesn’t take much for them to have fun.  They just love each other, speak in their own language but understand what they are saying,  and laugh at the silliest things. We have even been known to break into a dance when a good song comes on,  as the music is so loud at Bowlmor.

We had a great time!  Everyone ate pizza, had cake and then we said goodbye to our friends and got in the car…

dun dun duuuun ….

that was when the floodgates opened.  When I say floodgates, I mean out of his mouth came the flood of pizza and soda and cake.  What does one do with that?  I was only a few minutes from the alley and 5 minutes from home, so I kept going!  My little man was covered head to toe in whatever was in his stomach.   The puke was all over the car floor, seat, dashboard and somehow even in the backseat.

He is 16 and never said a word – just projectile vomited all over the place.  I wasn’t sure what to freak about first…How am I going to get him out of the car?  Do I have to clean this up?  Did he eat too much?  Where is the damn plastic bag in case he throws up again?  Holy crap – all of these people are going to descend upon my house in about an hour and a half.  Please let this not be the stomach bug going around!  Why can’t Freddy be home so he can clean this shit up? ( This definitely falls under the Father/husband category of lists of jobs to do around the house. )

Meanwhile, the name of the game has now become containment.   

I am calmly yelling at him to try not to move and every 5 seconds peppering him with;  are you going to throw up again?  Should I open the window?  Do you want me to pull over?  Whatever you do … DON’T MOVE!

Poor kid … I am totally in bipolar parent mode; I am freaking out about the situation, but kinda laughing at the same time because it seems like this is how we roll around here!  Also, I am kinda happy.  A little known fact about kids with Down Syndrome is that the stomach is a muscle and kids with DS have low muscle tone, so in a weird way, him being able to projectile vomit all over my car is a good thing – he couldn’t throw up at all for most of his life.  That was not a good thing…

We finally get in the driveway and it was not a nice day … drizzly and cold.  Important thing is that we made it home without another incident and I now shift into clean up mode.  I run in the house to get him a towel and my rubber gloves and help him get out of the car without letting him touch me or anything else.  I did not have time to take another shower!

It may not be nice, but I was not letting him in the house until the clothes were off and in a plastic bag, so he stripped in the driveway (behind the car so nobody could see) and the only thing not touched was his underwear.  So now we have an hour to go before people start descending… I get him in the house, up the stairs,  in the shower and throw his clothes in the laundry room sink.  Run outside,  pull the mats out of the car and leave them on the driveway.  I try to wipe down the inside of the car the best I can,  but some of the chunks of food were embedded in the rug.

After doing the best I could with a lot of Clorox wipes,  I sprayed the hell out of the car with Lysol and decided that Freddy could handle the rest – he has to have some fun here too.  I fully believe that we should share all of life’s experiences because isn’t that what marriage is about?

So what do I do?  

Cancel his Handsome 16 because he is sick or is this because he ate too much and then got in the car?  It’s never happened before with him, but there is a first time for everything and I continue to convince myself that this was just an isolated incident and I will still let everyone come.  I can’t get a hold of everyone now and Aunt Patty lives far away so I know she is already on her way.  I do the next best thing and text everyone to give them a fair warning – he threw up and I am honestly not sure what it is, but if you still want to come, that would be great.  If you want to turn around and go home, I completely understand.

They ALL came.  Everyone loves Joey and they were willing to roll the dice.  He laid down until everyone came, never threw up again and said he felt fine, but wasn’t hungry.  Every few minutes my mother, husband or I were up in his room asking him if he was ok and he always answered yes, but he just didn’t want to eat.  This kid never complains!  My little man stayed up in his room, while some of the brave randomly went up to visit.  To those visitors,  love was more important than health.

We were all having fun,  but this poor child was up in his room.  But that’s the thing with Joey,  he was happy knowing everyone was downstairs and never felt sorry for himself for a second.  Everyone was still here and it was his birthday – the simple things and what is really important.  When a few hours had passed and he never got sick again, I told him to come back downstairs so we could sing Happy Birthday to him.  I felt better knowing he could be a part of his own birthday party for a few minutes.  So down he comes and we sing and all is right with the world again!  He didn’t eat any cake, but he is loving the attention.

In Conclusion

So how did we finally figure out that it was a stomach bug and not the “I ate too much pizza and cake” flu?  When at least 12 different family members called over the next few days to tell me they were sick.  We started our own Goodwin/Riguzzi epidemic.  Can anyone guess the moment that the germ was passed?  I will give you a hint…

Ah … spit will do it every time!  Me – I skipped the cake, so I was good 😉

He didn’t actually get to eat that cake last year, so we got him an extra special cake this year:  Ice Cream cake for The Beatles fan –  Happy 17th Birthday!

Excerpts Of Birthday Love From His Siblings

Sunlight is of great importance to me.  It allows me to feel as though I have not a single worry in the world.  I ask myself, how could I be bothered if the sun isn’t shining? Well, on a day of rain, Joseph’s smile is my sunlight.  He is my handsome man.

Isabella

I don’t think there is anyone who has had more of an impact on my life.  For example, I always knew I was a teacher, I just didn’t know I was a special education teacher until Joey came along.  Joey taught me a lot about myself.  Above all, he taught me the depth of my compassion.  If everybody had a Joey in their lives, this world would be a much happier and more peaceful place.  I am beyond blessed to have 17 years of memories with my little brother, who is now the best uncle ever to my children.  He is my Earth Angel.

Christine

When I tell people that my little brother has Down Syndrome, they often make assumptions about how our family has had to work harder to take care of Joey.  The reality of it is, Joey is the anchor of our clan.  He’s the most well mannered one among us, always makes sure we hug and make nice after disagreements, is always asking after extended family and reminds us to show and share the love we have for each other.

Roberta

  Joseph has opened my world and made it a wonderful place!  He is the Paul McCartney of the Beatles!  All of us give more love to others because of how he shows his love to us.

Arthur

Thank you, God, for blessing our lives with this amazing young man!

To all my readers, thank you so much for sharing in our joy and …

Happy Sunday!

Much Love –

Sandy

#enlighten #empower #inspire #educate

Next Week:  My #metoo experiences …