You know it's time to get away when your 3 year old doesn't know what a 'babysitter' is. So off I go to an adult matinee for a break from the kids and some girl time with my BFF. (And, no, monkey bear still doesn't know what a babysitter is because she was home with Daddy.)
Sitting behind us were two women. Once the previews began, one of them started making comments way too loud. After a few minutes it became clear that she has some sort of intellectual disability and was there with her mom. As the movie begins - that would be the R movie with a lot of adult content - I get more and more uncomfortable hearing the questions from the daughter. You can tell the mom had no idea what the movie was about and is trying to figure out what to do. At one point the daughter said, "I'm 20 years old, I am old enough to see this."
After about 10 minutes the mom talks the daughter into leaving. It's funny how you go somewhere to "get away" and there is always something to bring you back home again. Lately, I feel like I've been only getting reminders of the negative side of Down syndrome. Stories about behavioral issues in school, kids wandering off, and reminders that even as a 20 year old adult, there are still concerns.
Today that changed. I got a call from my cousin who has a friend that just had a baby with Down syndrome. Her friend is deep in the grief stage. I can remember how that feels. But I am also privileged with loving a two year old with Down syndrome. The fear and grief is gone. It's replaced with a love that is beyond what words can describe. As cliche as it sounds, there really is something magical in my buddy that wouldn't be there without that extra chromosome.
I am thankful that Down syndrome has touched my life. I will never be the same and anyone who is open to love my buddy will be changed by him. Monkey bear will be a better person. The rewards greatly outweigh the cost.
November 29, 2010
November 14, 2010
fear
Monkey bear has never been a particularly outgoing child. As an infant, she would cry if a stranger got to close to her. She refused to talk in front of anyone else but us for a good 10 months. As soon as the video camera comes out, she clams right up. When we walk through the mall and are accosted by the baby talent scouts, I just laugh picturing her standing silently in front of the camera refusing to perform.
But lately, true fear has been rearing its ugly head. Monkey bear is mostly scared of dogs and the dark. Today a new fear showed up and surprised me. We were sauntering through the mall just the two of us. Monkey bear earned enough stickers on her chart for going to bed without crying and we were out to get her a special something. She decided she really wanted tights and a fancy dress (not my child).
There we were, tights purchased and searching for a dress to match (not an easy goal because the tights are covered with rainbow colored hearts and peace signs). While admiring the huge Christmas tree and excited for a ride down the escalator - a treat without my buddy and the stroller around - we round the corner and spy Santa Clause.
As we descend, monkey bear becomes more and more frightened. She has a death grip on my hand and is beginning to climb up my legs. Once we are out of sight of Santa, monkey bear says she just wants to go home. I convince her to at least buy a dress first. She does not want to go and play, she does not want to come back to the mall until Santa is no longer there.
Who is afraid of being in the same mall as Santa?????
We LOVE the mall and use it as a free form of entertainment. Where do these fears come from? I try so hard to be understanding and empathetic.... tell myself if it was a tarantula sitting in that fuzzy green and red chair, I might not want to go to the mall either. But there is a part of me that just wants to tell her to buck up and be brave. I suppose we are in for some Santa desensitization.
But lately, true fear has been rearing its ugly head. Monkey bear is mostly scared of dogs and the dark. Today a new fear showed up and surprised me. We were sauntering through the mall just the two of us. Monkey bear earned enough stickers on her chart for going to bed without crying and we were out to get her a special something. She decided she really wanted tights and a fancy dress (not my child).
There we were, tights purchased and searching for a dress to match (not an easy goal because the tights are covered with rainbow colored hearts and peace signs). While admiring the huge Christmas tree and excited for a ride down the escalator - a treat without my buddy and the stroller around - we round the corner and spy Santa Clause.
As we descend, monkey bear becomes more and more frightened. She has a death grip on my hand and is beginning to climb up my legs. Once we are out of sight of Santa, monkey bear says she just wants to go home. I convince her to at least buy a dress first. She does not want to go and play, she does not want to come back to the mall until Santa is no longer there.
Who is afraid of being in the same mall as Santa?????
We LOVE the mall and use it as a free form of entertainment. Where do these fears come from? I try so hard to be understanding and empathetic.... tell myself if it was a tarantula sitting in that fuzzy green and red chair, I might not want to go to the mall either. But there is a part of me that just wants to tell her to buck up and be brave. I suppose we are in for some Santa desensitization.
November 10, 2010
baby steps
After more than a year and countless dollars spent on sippy cups that didn't fit the bill, we have found a cup my buddy can use. So the cup was designed for babies 6 months old. At least he's not walking around with a bottle sticking out of his mouth. The cup also has spouts designed for babies 9 months old. Baby steps. Here we come!!
I did learn something about my buddy and how he drinks. He still swallows with his tongue out - much like an infant who is latched or drinking out of a bottle. I tried to drink with my tongue out ... it's not all that easy. So I can empathize with how difficult it will be for him to learn.
I was reminiscing the other night about when my buddy was little. I would try so hard to get him to laugh. I'd pull out all the stops and he would stare at me like I was insane. Now he thinks everything is so funny. It's such an amazing stage. I make a face, add a noise, and he is hysterical. His whole face lights up without and trace of self consciousness.
My buddy has also brought it upon himself to be the ambassador of happiness. Wherever we are, he catches the attention of any adult he can, says "Iiiiiiiiiii", and waves with a huge smile on his face. No one can resist. There is not a single person we have encountered that doesn't smile back and give a hearty, "Hi!" usually followed up with a, "He is so cute!".
Why yes he is.
I did learn something about my buddy and how he drinks. He still swallows with his tongue out - much like an infant who is latched or drinking out of a bottle. I tried to drink with my tongue out ... it's not all that easy. So I can empathize with how difficult it will be for him to learn.
I was reminiscing the other night about when my buddy was little. I would try so hard to get him to laugh. I'd pull out all the stops and he would stare at me like I was insane. Now he thinks everything is so funny. It's such an amazing stage. I make a face, add a noise, and he is hysterical. His whole face lights up without and trace of self consciousness.
My buddy has also brought it upon himself to be the ambassador of happiness. Wherever we are, he catches the attention of any adult he can, says "Iiiiiiiiiii", and waves with a huge smile on his face. No one can resist. There is not a single person we have encountered that doesn't smile back and give a hearty, "Hi!" usually followed up with a, "He is so cute!".
Why yes he is.
November 6, 2010
decisions
I have never been very good at making a decision. Especially those that will effect others. I am relieved that monkey bear chooses her own clothes - even if she makes quite a fashion statement. I even let her dress my buddy just so there is one less decision to be made. Children come with countless daily choices. What should I feed them, do they need a coat, should we skip nap today, are they getting sick... the list goes on and on.
When faced with a major life choice, I am stuck with fear of choosing wrong. Which is funny because I think that most choices can work out in the end. It just takes you down a different path, not necessarily a bad path. I fear disappointing others and forcing the ones I love to join me along that path even though they might have chosen to go a different way.
I am still gathering information in hopes that the light will suddenly appear and trying my hardest to listen to that voice inside of me.
When faced with a major life choice, I am stuck with fear of choosing wrong. Which is funny because I think that most choices can work out in the end. It just takes you down a different path, not necessarily a bad path. I fear disappointing others and forcing the ones I love to join me along that path even though they might have chosen to go a different way.
I am still gathering information in hopes that the light will suddenly appear and trying my hardest to listen to that voice inside of me.
October 28, 2010
limits
There was a documentary on HBO called "Monica and David". Monica and David are two individuals with Down syndrome who fall in love and get married. I was expecting a really inspirational 70 minutes. The reality, for me, was quite different.
I loved that they found each other and their love was so pure. That part was really touching. But the reality of these two 30 somethings is not the reality I envision for my buddy. They live with her parents. Neither have a job. They cannot cook for themselves. They had trouble just stuffing envelopes.
I'm sure 30 something years ago there was not the support and knowledge that we have now. I know that the Birth to 3 system has done wonders in giving my buddy a jump start. I am also aware that there will be a limit to what he can accomplish.
I joke about wanting him to live with me forever and cruise around in the VW Cabrio I will have someday with the top down. But it's a joke. I never thought that he might really have to live with me forever.
There is one scene "Monica and David" that depressed me the most. They live in Florida in a beautiful apartment that has an ocean view. They could go down to the lobby and walk a block or two and sit on the beach. David talks about how he just wants to sit down there and watch the ocean. Monica tells him that they aren't allowed to.
I don't want my buddy to spend every day yearning for something out of his reach. I hope I am able to find that fine line of knowing his true limitations but not holding him back from his true potential.
I loved that they found each other and their love was so pure. That part was really touching. But the reality of these two 30 somethings is not the reality I envision for my buddy. They live with her parents. Neither have a job. They cannot cook for themselves. They had trouble just stuffing envelopes.
I'm sure 30 something years ago there was not the support and knowledge that we have now. I know that the Birth to 3 system has done wonders in giving my buddy a jump start. I am also aware that there will be a limit to what he can accomplish.
I joke about wanting him to live with me forever and cruise around in the VW Cabrio I will have someday with the top down. But it's a joke. I never thought that he might really have to live with me forever.
There is one scene "Monica and David" that depressed me the most. They live in Florida in a beautiful apartment that has an ocean view. They could go down to the lobby and walk a block or two and sit on the beach. David talks about how he just wants to sit down there and watch the ocean. Monica tells him that they aren't allowed to.
I don't want my buddy to spend every day yearning for something out of his reach. I hope I am able to find that fine line of knowing his true limitations but not holding him back from his true potential.
October 25, 2010
worse
When my buddy was born, I thought the worst words I would hear were, "We think your son had Down syndrome." Boy was I wrong. The day came when we were to be discharged. My buddy was taken into the Special Needs Nursery because his color was off and his temp was low. Here I was ready to bring my baby home and there he was with tubes up his nose and monitors connected to all parts of him.
I had to bring home an empty car seat and a hospital issued breast pump. I was so torn. Monkey bear was only 15 months old and needed me at home yet my newborn was still in the hospital. I spent the next two weeks pumping every 3 hours, caring for monkey bear and, with the help of my mom, traveling back and forth to the hospital.
All I had to do was step into the lobby and the tears would start. I carted my little cooler of breast milk with me and snuggled him as much as possible with all those monitors and wires coming out every direction. The only thing he required was the tiniest bit of oxygen. Every time they would try to turn it down, my heart would soar as his numbers stayed up. Then the crash as his numbers would slowly creep down and the oxygen was turned on again.
They finally decided there was nothing more they could do for him and had him transferred to CCMC. I watched them load my buddy into the incubator and onto an ambulance. The good news about being at CCMC was he finally had his echocardiogram and we knew for sure that his heart was healthy. The air is also magical there because after one day, his oxygen was off and he was ready to come home.
Halloween was the day we brought him home and my heart finally began to heal. I will never forget how wonderful it was to have both my kids in my arms at the same time.
I had to bring home an empty car seat and a hospital issued breast pump. I was so torn. Monkey bear was only 15 months old and needed me at home yet my newborn was still in the hospital. I spent the next two weeks pumping every 3 hours, caring for monkey bear and, with the help of my mom, traveling back and forth to the hospital.
All I had to do was step into the lobby and the tears would start. I carted my little cooler of breast milk with me and snuggled him as much as possible with all those monitors and wires coming out every direction. The only thing he required was the tiniest bit of oxygen. Every time they would try to turn it down, my heart would soar as his numbers stayed up. Then the crash as his numbers would slowly creep down and the oxygen was turned on again.
They finally decided there was nothing more they could do for him and had him transferred to CCMC. I watched them load my buddy into the incubator and onto an ambulance. The good news about being at CCMC was he finally had his echocardiogram and we knew for sure that his heart was healthy. The air is also magical there because after one day, his oxygen was off and he was ready to come home.
Halloween was the day we brought him home and my heart finally began to heal. I will never forget how wonderful it was to have both my kids in my arms at the same time.
October 18, 2010
gratitude
My buddy is 2. I can remember the day he was born so vividly. The first emotion I felt upon hearing the words Down syndrome was heartbreak. But I think your heart has to break first, because loving a child with Down syndrome makes your heart grow so much larger than you ever thought possible. It's like the doctor who has to rebreak your leg in order for it to grow straight and strong.
My buddy is a whirlwind - in constant motion destroying everything in his path. But when he stops and gives you a smile or a hug. You just melt. Nothing else exists at that moment. It's an amazing thing.
We had our Buddy Walk this weekend. I am so moved with all the people who came out to support our family. There are moments where living with Down syndrome isn't easy and I know there will be many battles in our future, but with the help of those we surround ourselves with, each battle will be a victory. I don't have the words to express how much I appreciate each person who touches our life.
Down syndrome has brought so much into my life. In many ways, I am thankful that my buddy has that extra chromosome because it brings unconditional love.
My buddy is a whirlwind - in constant motion destroying everything in his path. But when he stops and gives you a smile or a hug. You just melt. Nothing else exists at that moment. It's an amazing thing.
We had our Buddy Walk this weekend. I am so moved with all the people who came out to support our family. There are moments where living with Down syndrome isn't easy and I know there will be many battles in our future, but with the help of those we surround ourselves with, each battle will be a victory. I don't have the words to express how much I appreciate each person who touches our life.
Down syndrome has brought so much into my life. In many ways, I am thankful that my buddy has that extra chromosome because it brings unconditional love.
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