Growing up With Jared: Good Night Sweet Prince...

Growing up With Jared: Good Night Sweet Prince...:      I'm guessing that Jared has not had a dream for a couple of years. I'm guessing, too, that his body has not repaired; his mind...

Good Night Sweet Prince...

     I'm guessing that Jared has not had a dream for a couple of years. I'm guessing, too, that his body has not repaired; his mind has not been sharpened.  I'm guessing this because we recently found out that Jared has sleep apnea. Again, one more thing that happens to our children, one more thing they must face with grace, one more thing that makes it just a bit more of a nuisance to live, to exist day to day.  But, I have to say, this is something that can be fixed. When you have a child with special health concerns, it is a relief when the next thing is something that can indeed be fixed, not with surgery, but with a shoebox sized device, a mask, and a long tube, a tube that will help my son breathe when his body gets in the way of his air. And the mask is not huge, thank goodness. Jared is worried about it, the mask, the machine, the stigma, that now he seems to get.  The doctor told him it is private, this machine, that his door can close and that it is not something we need to discuss or tell anyone. Funny, Jared seems weary too, sometimes, sick of sharing with the world what makes him different. He gets it now. He looks to me for reassurance. "No one will see it, Jared; no one will know," I mimic the dr. (OK, except all of you who read this, but please don't say anything to Jared...)  "But what about when I get married? What then?" "Then it is that last thing you do at night before you go to sleep, the very last thing." I tell him this, but I'm selfishly angry too. Same old song: our kids have Down Syndrome, so let's give them a bunch of things to deal with; let's make it a whole package, that continues to surprise them as they grow.  But here's the thing: out kids are so damn resilient that they deal with the medications, the surgeries, the allergies, the...I could go on and on. They not only deal, but they wake up each day and go out into the world, ready to live, with a smile on their face and an eagerness to connect with everyone with whom they come into contact.
     So, when you see an individual this week with Down Syndrome, this week that will celebrate International Down Syndrome Awareness Day on Thursday, the 21st, take a minute to understand what it takes for some of these kids to get out of bed every day and face challenges every day and touch lives every day and love every day. And use that minute to balance yourself, to think about how we all might go through our days and rather than dragging our baggage, lifting it up high above our heads as if to tell the world, I got this; I can handle this, and I can see goodness over and over again.
    And tonight, when Jared and I go to the sleep center at the hospital and he gets his machine, my heart will soar because my child, my very tired child will finally rest.
  

Happy Valentines Day!

A Slice of the Pie

A Thank you Note

To Scott the Manager of  Great Northern Pizza here in town:

 

Thank you for opening your mind and your heart, for giving Jared his first job, with a schedule and a paycheck,  and for understanding that he needs to start slowly,  just one day a week and just an hour or two for now, but to look at Jared's face, you would think the world had been laid at his feet. I think it  has been. This is a milestone, another step toward independence. And when we go to your restaurant to fill out the forms, those "I have a new job" papers, Jared may not understand W2 or dependents (who ever does?), but he will know that he is valued and that some place needed him enough to pay him. I don't know if you understand how big this is, how important this step is for my son with Down Syndrome. I am aware that places exist in our world that are still wary of taking risks, of gambling with their business by creating opportunities for people with developmental disabilities, but you are not afraid, and for that, I am grateful. Scott, you and your business are modeling for our community what inclusion really means, not just paying lip service to the concept of acceptance, but really doing it.  Sometimes it is more difficult to find a fit for individuals who need extra help, who may not learn things as efficiently as those around them. Thank you for finding a place for our son.  Jared will work hard. You see, his spirit is filled when he is needed; his confidence will soar when he is accepted as an employee, as one of the crew,  not just as a young man with Down Syndrome. And sometimes when he falters or stumbles, I will be there, hiding out in the mall behind your restaurant, reading my book, half waiting for a call from you, but also hoping it doesn't come.

There is a Place

Recently, a friend of Jared's, a senior in high school, a young lady who absolutely loves to sing, was told that, due to a lack of teacher aide coverage, she would be able to just sit and watch the choir sing every day. Sit and watch?! Our children have often been the ones who have to sit and watch while others go to the mall or hang out with friends, or drive, or go to college.  Sure, out kids go to the mall; they hang out with friends, but these are arranged, social times sorted out by parents, organized by those of us who want our kids to have opportunities to be teenagers.  And while these are good and wonderful opportunities for them, it is hard sometimes for out kids to just be, to just do.  So, they sit and watch.  They watch the limousines spill out typical peers in front of prom; they watch as the students who graduated from school last year go off to college, to a life unfettered by "parental arrangement".  So, when they are asked to stay to the side of the group, to sit quietly and take in the songs of those other students who don't struggle with voice, pitch, or tone, it saddens me.  Our children do sound different, but one thing I find when Jared sings with a large group, be it church choir or last year's school chorus, is that my ears strain to hear that voice, albeit untrained and sometimes wavering, and yes, sometimes way out of tune.  I am glad that his distinct sound helps my ears find his music.  It doesn't much matter how it sounds, but that it is heard, don't you think?

     So, it is with this story in mind that I want to share something.  I want to tell of a place, Gigi's Playhouse, where young parents can come to grips with what it means to have a baby with Down Syndrome, a place where our kids can get help with reading, writing, and math; a place where there is a stage where all are welcome to sing, to act, to dance, and where it doesn't matter if you are unable to carry a tune, or can't always get your body to do what it is supposed to do.  I share this because, while the world is getting better at accepting that there are differences, we still need to get better at figuring out that everyone needs a place to belong.  For now, we have buildings and groups of fantastic people pulling for our kids, fighting for their footprint to grow.  Let's hope this is just a start; that Gigi's Playhouse will model for the world, in its own small way, that no one needs to sit on the side and watch, that we can all get up on that stage and have our voices heard.

Growing up With Jared: It's the Same...but Different Part 2

Growing up With Jared: It's the Same...but Different Part 2:      When we dropped Jared off for his week-long college experience, we got a hint of what it must be like to leave a child in a new place,...

It's the Same...but Different Part 2

     When we dropped Jared off for his week-long college experience, we got a hint of what it must be like to leave a child in a new place, with new people, so,  like millions of worried parents before us, we did the only thing we knew to do; we puttered.  We helped Jared take his suitcase and bedding to the suite that would be home for him and his two roommates for the next 5 days. My husband did what a lot of fathers must do in similar situations: He hooked up Jared's phone and made sure Jared was aware of where to charge it. As this was going on, I did what millions of mothers before me have done: I embarrassed my son, pulling out and storing underwear and socks in the bureau, not without Jared telling me to "stop waving his underwear around for everyone to see!"  It occurred to me as we stood in that dorm, that this would be the first time that our eldest son would be away from us without staying with or traveling with another family member. Jared's brother Jake confirmed this for me as he stood pensively watching his big brother make his bed with the help of his roommate. Jake said, a couple of times, "I hope Jared is ok." "He will be," I assured him (and myself) "He'll have a blast!"
     Jared pushed us out then. "You can go now. I'll be fine!" Leaving was strange, kind of like walking away as an invisible string held me to my boy, my oldest son, my Jared.  The same string, I'm sure, that has bound millions of mothers and fathers before me to their fledgling children; the same....but different. You see, Jared will be coming home in a few days, but now there is the possibility that there will be a time when a few days will stretch and when Jared really does go to his adult life and we are the place he visits.  But now, Jared will be back home in a week; a brief stay at "college", but a giant step on this journey.  When he was a baby, he walked; he was 21 months old, but he walked.  Last night, he told me I could leave. He is nineteen years old, but he told me I could leave. Read on...

 Texts from Jared's first night at college:

 Mom: Hi Jared! Put the Iannotti's phone number on your desk!
Jared: OK
Mom: Are you having fun? Remember to let the food people know you are gluten free!!!!  Love you!!!!!
Jared: Love you too
Mom: Is it awesome?
Jared: Yes. Stop texting me.
Mom: OK! Sorry! Bye!!!!