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.
Thursday, March 8, 2012
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.
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.
Tuesday, February 7, 2012
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?
Tuesday, January 31, 2012
Growing up With Jared: The Broken People
Growing up With Jared: The Broken People: We sit among the broken people, young, unwed mothers with babies not much younger than they, a gentleman just out of a correctional facility...
The Broken People
We sit among the broken people, young, unwed mothers with babies not much younger than they, a gentleman just out of a correctional facility downstate, a widow, twisting her hankerchief, my son and I. The conversation goes something like this:
Jared: I don't want to go away from you and John. Who will take care of me?
Me: Don't worry, Jar, even if you move away from us, we will always take care of you.
Jared: But what if you die?
Me: Then John will make sure you are ok.
Jared: But what if John dies?
I turn in my chair and face my son, a promise in my eyes as I say: "promise you that you will always be cared for. If we leave, then there will always be someone to take care of you, to make sure you are safe. To make sure you are happy."
Jared: OK, mom
And we sit, for another hour while the papers we brought with us, the ones that declare my son as a person with a disability, are shuffled through, copied, then paperclipped again, then handed back to me to be put in a folder labled, Jared-SSI.
Jared notes that the folders I hold are really thick. "Do my brothers have as much paperwork as I do? " he asks. "No," I tell him. You are the lucky one, the one with the most papers. " And we sit. The man from prison assures the young social worker next to us that he was discharged from that facility downstate, that he would have brought the papers with him if he knew they would be needed. We sit, next to the young Asian boys, fingers furiously playing at their laptops, as they converse animatedly in their native tongue, procuring the proper paperwork, that I assume allows them to stay here to continue their studies. We sit, as a young mother, barely 15, comes in with her son and his suspicious cough. So much struggle in this space. And to be a part of it yesterday was exhausting, yet another reminder of our differences, Jared and me.
And finally, we leave; the proper papers have been filed. The appropriate questions have been asked. We've supplied the answers they require. We ride the gray elevator down four floors and walk toward the metal detector. Jared reminds me to pick up my phone from the armed guard standing near the door. And we walk through, my son and I. We walk to the car, get in. I turn on the music, and it's a song that Jared and I both love. As we drive, I reach over, ruffle his dirty blond hair, and we look at eachother and smile.
Jared: I don't want to go away from you and John. Who will take care of me?
Me: Don't worry, Jar, even if you move away from us, we will always take care of you.
Jared: But what if you die?
Me: Then John will make sure you are ok.
Jared: But what if John dies?
I turn in my chair and face my son, a promise in my eyes as I say: "promise you that you will always be cared for. If we leave, then there will always be someone to take care of you, to make sure you are safe. To make sure you are happy."
Jared: OK, mom
And we sit, for another hour while the papers we brought with us, the ones that declare my son as a person with a disability, are shuffled through, copied, then paperclipped again, then handed back to me to be put in a folder labled, Jared-SSI.
Jared notes that the folders I hold are really thick. "Do my brothers have as much paperwork as I do? " he asks. "No," I tell him. You are the lucky one, the one with the most papers. " And we sit. The man from prison assures the young social worker next to us that he was discharged from that facility downstate, that he would have brought the papers with him if he knew they would be needed. We sit, next to the young Asian boys, fingers furiously playing at their laptops, as they converse animatedly in their native tongue, procuring the proper paperwork, that I assume allows them to stay here to continue their studies. We sit, as a young mother, barely 15, comes in with her son and his suspicious cough. So much struggle in this space. And to be a part of it yesterday was exhausting, yet another reminder of our differences, Jared and me.
And finally, we leave; the proper papers have been filed. The appropriate questions have been asked. We've supplied the answers they require. We ride the gray elevator down four floors and walk toward the metal detector. Jared reminds me to pick up my phone from the armed guard standing near the door. And we walk through, my son and I. We walk to the car, get in. I turn on the music, and it's a song that Jared and I both love. As we drive, I reach over, ruffle his dirty blond hair, and we look at eachother and smile.
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