Another Chapter Begins

There are signs around the house...announcements next to envelopes waiting to be stuffed, a t-shirt with "Seniors 2012" written down the side, an unopened letter from the local community college.  My son is graduating; sort of the end of one journey, and the start of another.  My job lately seems to be that of "transition director".  "No," I tell Jared, "you won't do chorus at school next year. You are a member of the church choir now.  No, you won't take regular classes when you walk back into the high school next year; work studies, five days a week, will fill your time.  No, you won't wrestle on the team; you will be the manager.  You will wear the coat they gave you at the banquet, and you will help out where you can."  I think I say these things more to define for me the role of my graduating son.  Hearing it out loud makes it easier for both of us to accept, with excitement, yes, but also with some trepidation, that things are changing.  I would be lying if I said I didn't have twinges of "graduation envy" as I look around at the other seniors who are leaving those hallowed halls to pursue dreams of their own.  The dictionary defines "to graduate" as to receive a degree or diploma on completing a course of study; or to pass by degrees, to change gradually.  I guess that Jared's situation best matches the latter.  There is change happening, yet it is gradual change, and once again, I have to be content with that.  I will be content, but not without some reflective struggle as, once again, Jared must define his place in the world.  He is ok with it, I think.  He wears his senior t-shirt with pride, looks forward to taking Gabby to the ball, and waits with anticipation to walk down the aisle to receive his diploma, his degree, as he changes gradually.  And I stuff the envelopes, trying to remember all of the people who have touched my boy's life (there are so many), while thinking about the cake (there needs to be a gluten free option), and how I might decorate the tables.  And the music; there HAS to be music. Jared wouldn't have it any other way.  And neither would I.

Present Past Future

Recently, I picked Jared up from his volunteer job at the Y. When I got there, I couldn't find him. One of the workers told me that he was in the back offices. Of course, I thought,"Ok, what did he do now?" (oh ME of little faith...), however Jared walked out with a smile on his face. I asked him what he had been doing and he told me he had a conversation with one of the staff coordinators wherein he asked what  employment opportunities might be available for him upon graduation! 19 years, and my son still surprises me!I was so impressed with him! I congratulated him on his initiative, and as we drove home, we continued the discussion of his future. We talked about where he might work, what he might do, how he might make his mark on the world. As we pulled into the driveway, I turned to him and said, " I know a perfect job for you!" As he looked at me, I told him, "You could meet with couples who have recently had a child with Down Syndrome and tell them your life. You could share pictures and stories!" and then I said to my almost grown son, "If YOU had come to see me when you were born, I would have been ok." Two sets of blue eyes filled with tears as we held hands for a brief moment. I know Jared got me right then. I know he understood.

Simple Gifts

It's funny, after posting my latest blog today, I heard from so many people who have been there for the last 19 years, and actually, for many years before that even.
I will never forget my mom, coming to spend the "new baby" days with me. Telling me it was ok to cry, while teaching me how to take care of a baby and to be a mother. Because that's who Jared was first and for most,a baby,even if I had trouble seeing it at the time. I remember my big sister Cheryl, upon hearing of Jared's arrival,flying from DC into a snowstorm, and even when her plane was re-routed to another city, renting a car with a perfect stranger who was heading towards me so that she could take care of her little sis, just like when we were children. I don't know if she really knows what that meant to me, how much I needed her at that moment in my life. I remember my friend , Sharon, who came to the door the night we brought Jared home. The doorbell rang, and when I opened it, there she stood with champagne in her hand, arms stretched out ready to hold this baby, chipping away at the shame I had from having a baby who was just shy of perfect. And my sister, Kathy, who gave me permission to be mad, to say,"this sucks, this really sucks." funny, I don't think I have ever heard her say that word again. But I needed to be mad for awhile, and she knew that.
So, to the women in my life who were there when I needed them so damn much, I thank you. And I want you to know that, without your support and love and laughs, this journey would have been so much harder. I love you all.

Growing up With Jared: Passing T.ime

Growing up With Jared: Passing T.ime: So, yesterday was Jared's 19th birthday. I went through the day, kind of in split-screen mode: one side on the day and the other side on a d...

Passing T.ime

So, yesterday was Jared's 19th birthday. I went through the day, kind of in split-screen mode: one side on the day and the other side on a day 19 years ago. It went something like this:

Yesterday: Jared woke around 5:45, as he always does, made his own breakfast and got ready for school, walking out the door before 7 with his tupperware of chocolate gluten free cupcakes.

19 yrs ago: The doctors and nurses came in to tell me that my baby had many features associated with Down Syndrome. One doctor told me that we couldn't be sure that the child would talk, or when he would walk.

Yesterday: Mid-morning,Jared shared his cupcakes with his friends in science class.

19yrs ago: Mid-morning, I attended the "new mom" orientation (the one you had to take before leaving the hospital) with my baby, but making sure the blanket covered much of his face. I didn't want those moms, the ones with the perfect babies, to see mine.

Yesterday: Jared went to his work study at the nursing home, where the staff sang to him and an elderly gentleman slipped him a 5 on the sly for his birthday.

19yrs ago: I sat, crying in a hospital room, thinking that very little good lay before this child.

Yesterday: Jared took the bus to the YMCA, where he swiped cards for people and then worked out with his friend.

19yrs ago: The word, mongoloid, still lived in the reference books about our children.

Yesterday: At dinnertime, we dropped by the Y to get Jared on our way to his restaurant pick. As I walked in to get him, he was already heading out to meet me. I asked him how he knew I was coming. He said, something told him I would be coming and he wanted to meet me half way.

19yrs ago:  At dinnertime, I fed my son for the first time, and when we locked eyes, something must have told him that I would be meeting him; it would take awhile, but I would eventually meet him half way.

Yesterday: In the car on the way to dinner, Jared gave his brothers presents: a pack of m & m for his little brother, Bray, that he had received at his work study, and a watch for his other brother Jake, the one with the alarm that he can't seem to figure out.

19 yrs ago: Jared gave me a present that I wasn't ready for: a life where I would learn patience, compassion, and grace.

Happy Birthday to my son.

Growing up With Jared: When the Polish Chips and Fades

Growing up With Jared: When the Polish Chips and Fades: My hands tell a story, I think. You know how you can look at someone's hands and even if their face looks young, it's the hands that give ev...

When the Polish Chips and Fades

My hands tell a story, I think. You know how you can look at someone's hands and even if their face looks young, it's the hands that give evidence of how many years have passed? So, I looked at my hands today. While the world can look at my face and see this cheerful, lighthearted person,  my hands tell a different story. Don't get me wrong; I'm happy, blessed in a multitude of ways, but I would be lying if I said that having a child with special needs was not stressful at times. These last couple of weeks, with the applications and forms that come with  Jared's growing up, have been a little rough, to say the least. And it is my hands, my dry, cuticle shredded hands that are telling a story of their own. So, what do I  do? Yoga? Wine? Continue to chew my nails? No, I think I'll take the wine, and perhaps the yoga. But, I will also look at my children, my husband, all around the table tonight, and I will count my blessings. And for all you other mothers out there? It will be ok; you might just have to get a manicure or two...I guess that wouldn't be so bad now, would it?