A wise woman who has a son with special needs once told me that there are good days & days when you just wanna bury your head in the sand. And there were not more true words ever spoken about having a kid with different needs.
Tonight as I sit here I just wanna bury my head in the sand. I'm having a hard time with friends having NT scans and ultrasounds that show things that are considered soft markers for down syndrome. I'm not having a hard time with them grieving. I'm not having a hard time consoling them during what is an incredibly difficult waiting period.
I wouldn't wish for anyone to have a child with down syndrome, but only because of the extras. The extra dr appointments. The extra worry. The extra "what ifs". Yes yes. I love Sean no matter what and they'd love their little one no matter what as well. And what I know now about down syndrome helps me to embrace it. It has shown me that Sean would probably be just the same kind of little guy he is now if he only had 46 chromosomes.
Having said that, I'm having a hard time with other people's response to the news. Other friends saying "thoughts & prayers", "I'm so sorry". Things like that. Why can't other friends, who now know that kids with down syndrome are more alike than not, just say things like "it's not ideal, but it wouldn't be the end of the world" "Look at the amazing things he can accomplish" and things like that instead?
It lets me know just how alone I really am in my circle of friends. That even though people can be happy that Sean has had a lot of achievements, they still wouldn't want someone like him for a son. It will never matter how many achievements Sean has. It will never matter how awesome Sean is. Most people would never want a kid like him.
When we found out, a lot of people told me that kids choose their parents because they know who can take care of them. I guess Sean picked well. We love him and wouldn't want him any other way! Even with the extras.
Wednesday, April 27, 2011
Friday, April 22, 2011
Fun videos of Sean & Meredith
A typical day in my house, when we're in the house, is Meredith squealing while Sean laughs hysterically & encourages her. It makes for a mommy who needs Calgon in the worst way by 5pm. I often find myself wondering why my kids couldn't come up with a more quiet "just between them" way to communicate.
Tuesday, April 19, 2011
"Free to Be" on Passover
This year for Passover we decided that we just couldn't physically manage to goto the usual destinations for the first seder. Things would end to late, the kids don't transfer well, etc, etc.
Well yesterday my grandparents hosted a seder lunch. It was perfect. It was very casual, very calm and very serene. In fact, it's probably the best seder I have ever been to.
At the start of the seder, instead of a traditional seder service, my grandfather read something he had written.
Your life is your canvas
- the product of your passion
Yours alone
- that no one may alter
It is your beauty - your truth
- your work of art
Be free, always
- to celebrate that uniqueness
your gift to humanity
We are joined in a common struggle,
- each in his own way
- To escape the tyranny of conformity and mediocrity
- To be our best selves
- To be free to be
It was signed "Stanley Blum Passover 2007"
Now I remember being at their house for Passover in 2007. I don't remember hearing this that night. Last night, however, it spoke to me. It spoke to me because I now have kids. Not only do I have kids, but I have a son that will probably always struggle to have people celebrate his uniqueness. He will always struggle to show everyone that he is free to be unique.
We will probably always struggle to show the world that his world is one of freedom. Freedom to just be no matter how many chromosomes he has or how slowly he learns or what he does/doesn't learn. His designer genes have ensured for him that he will never be mediocre. That he is forever unique. He will always have a gift to share with humanity. He will always be special. He will always be his own work of art. A constantly changing, ever evolving canvas.
On this Passover I am thankful for the enlightenment I have the pleasure of feeling. I am thankful that my son has a gift to share with the world. I am hopeful that my son's gift will enlighten the world & show everyone that he is the epitome of freedom.
As I watched one of the oldest members of our family hold the youngest member, I was grateful that my grandpa shared his thoughts with us. I was happy that we got to see first hand how our heritage is passed down. I watched as my grandparents took great joy in seeing Meredith & Sean take part in this very special holiday. They took great joy in passing down the traditions. We took great pleasure in being with them and watching our kids get to know them.
I wish everyone a very Happy Passover and a very Happy Easter.
Well yesterday my grandparents hosted a seder lunch. It was perfect. It was very casual, very calm and very serene. In fact, it's probably the best seder I have ever been to.
At the start of the seder, instead of a traditional seder service, my grandfather read something he had written.
Your life is your canvas
- the product of your passion
Yours alone
- that no one may alter
It is your beauty - your truth
- your work of art
Be free, always
- to celebrate that uniqueness
your gift to humanity
We are joined in a common struggle,
- each in his own way
- To escape the tyranny of conformity and mediocrity
- To be our best selves
- To be free to be
It was signed "Stanley Blum Passover 2007"
Now I remember being at their house for Passover in 2007. I don't remember hearing this that night. Last night, however, it spoke to me. It spoke to me because I now have kids. Not only do I have kids, but I have a son that will probably always struggle to have people celebrate his uniqueness. He will always struggle to show everyone that he is free to be unique.
We will probably always struggle to show the world that his world is one of freedom. Freedom to just be no matter how many chromosomes he has or how slowly he learns or what he does/doesn't learn. His designer genes have ensured for him that he will never be mediocre. That he is forever unique. He will always have a gift to share with humanity. He will always be special. He will always be his own work of art. A constantly changing, ever evolving canvas.
On this Passover I am thankful for the enlightenment I have the pleasure of feeling. I am thankful that my son has a gift to share with the world. I am hopeful that my son's gift will enlighten the world & show everyone that he is the epitome of freedom.
As I watched one of the oldest members of our family hold the youngest member, I was grateful that my grandpa shared his thoughts with us. I was happy that we got to see first hand how our heritage is passed down. I watched as my grandparents took great joy in seeing Meredith & Sean take part in this very special holiday. They took great joy in passing down the traditions. We took great pleasure in being with them and watching our kids get to know them.
I wish everyone a very Happy Passover and a very Happy Easter.
Monday, April 11, 2011
Meredith's Penpal Adventure
Today is a beautiful day. So Meredith & I set out to the post office so we can mail letters to her penpal & Sean's penpal while Sean was taking a much deserved nap after physical therapy.
We stopped to smell the flowers on the way. Aaaaahhhhh the glorious sights of spring.
I thought it would be fun to give Meredith the camera. I wanted to see the world from her view. It took her a little while to figure out that what she saw on the screen is what would be the picture, but she got the hang of it. Can you imagine being asked to walk when your whole view is car bumper high? Now I understand her unwillingness to walk everywhere.
She enjoyed it and I'm happy that she didn't get annoyed & throw my camera or drop it.
Meredith walked into the post office like quite the little lady with her letters in hand & stood in line with the rest of the folks. She gave the lady her letters & handed over the money. She was so proud of herself.
Paxton & Declan we can't wait to hear your response.
We stopped to smell the flowers on the way. Aaaaahhhhh the glorious sights of spring.
I thought it would be fun to give Meredith the camera. I wanted to see the world from her view. It took her a little while to figure out that what she saw on the screen is what would be the picture, but she got the hang of it. Can you imagine being asked to walk when your whole view is car bumper high? Now I understand her unwillingness to walk everywhere.
She enjoyed it and I'm happy that she didn't get annoyed & throw my camera or drop it.
Meredith walked into the post office like quite the little lady with her letters in hand & stood in line with the rest of the folks. She gave the lady her letters & handed over the money. She was so proud of herself.
Paxton & Declan we can't wait to hear your response.
Friday, April 8, 2011
Happy 9 Months Old to Sean
I can't believe you have been out longer than you were in. I can't believe this amazing journey we're still on together. I can't believe I'm calling our journey amazing.
My letter to Pix11 News
I can't believe it, but I actually sent it to them. Oh my. I do believe strongly though that the news has a much further reach than any of "us" could have. Ya know? And so I did it. I sent it!
Here is the email I sent. I don't know if it'll be read or even considered, but I hope it is.
To whom it may concern:
I am a loyal viewer of your morning show. When I wake up in the morning I make my coffee and sit down to watch my morning news at 6am. I watch it until 8:30am when Disney takes over. I enjoy my time with your newscasters.
This week you featured Autism Awareness Week. I applaud your efforts at showcasing everything autism. I’m glad that people who may not know what the signs are now do. I’m thrilled that people know there are services available to them if they find themselves in a position to have to look for them. I’m happy that you showed parents that there is life after diagnosis & that there is autism after childhood.
I am also really proud that Jim Watkins was able to come forward & share his experiences as a dad of a child with autism. I’m sure your features made autism very real for many folks who do not have a child with autism or any special need. I’m sure it also helped many who have a child or children with autism.
While I’m happy that you featured autism, I’m more than a little disappointed that Down Syndrome Awareness has never been featured. I know October is breast cancer awareness month, but did you also know it’s Down syndrome awareness month? Did you know that March 21st is also an awareness day; 3/21 for trisomy 21.
Did you also know that many children with Down syndrome also have a dual diagnosis of autism? I didn’t know that until very recently.
I’m pretty sure I would’ve noticed if the news had featured it somewhere. If I’m wrong, I apologize.
I am a mom of a child with Down Syndrome. When I received the diagnosis, it was so important for me to connect with other parents, professionals, etc so that I would know that Down Syndrome wasn’t a death sentence. It was important for me to know there were services out there that would help me help Sean, my son now 9 months old, reach his full potential. I searched high & low in NYC for something. We live in Brooklyn, by the way.
It was very rough for me in the beginning. Here is the link to my blog http://itsgooditsbaditsugly.blogspot.com/. It illustrates the turmoil I went through when we received the diagnosis when I was 28 weeks pregnant and our growth as a family much more than I can do in a simple letter. I can’t imagine how I would’ve felt if I had, like so many parents do, received the diagnosis after my son was born. I can’t imagine looking at my tiny baby & wishing him away like so many parents often do.
My 2nd trimester blood work came back abnormal. It put me at a higher chance of having a baby with Down syndrome. When I spoke with a genetic counselor at 19 weeks pregnant I was told that I should have an amnio done as soon as possible so I could terminate my pregnancy if I wanted to. I wasn’t given any hope for the future if my baby had Down syndrome. When I expressed that termination wasn’t an option for me, my counselor said to me, “But what about your older daughter? Do you really want to burden her with a Downs brother?” Can you imagine? Can you imagine how hard that is for a mother to hear? I can’t imagine hearing something like that after my baby was born. There were plenty of other instances during my pregnancy that were pretty much the same.
If it hadn’t been for my obstetrician, my son might not be here today. He might have been born, but he probably wouldn’t be raised with our family. My OB was instrumental in telling me that there is a wonderful life after the diagnosis of Down syndrome.
Our family was supportive. Our friends were supportive. I happened to be in a position where I was able do the research and get the help for my son that he so desperately needs in spite of the funding cuts. I was able to make the connections I needed to make. Not everyone has the kind of support that makes them strong enough to fight for their kids. Not everyone has the kind of support that helps them to know that “it” will be ok.
What am I getting at? If I had been assured from the beginning that my life would take on a whole new normal...... If I had known from the beginning that my son would be perfect with his designer genes and perfect for our family........ If I had seen adults, teenagers, known there were resources for me right from the start (prenatally and from birth) my mourning period might not have been so hard on me, my family, my daughter, my marriage. My mourning period might not have had to be a mourning period.
Is the lack of coverage for something as common as Down syndrome going to cause me to stop watching your news program? No probably not, but your show reaches so many households. So many people. Your show reaches a demographic that most news shows don’t, in my opinion. Wouldn’t it be nice to showcase something as wonderful as Down syndrome and show parents & parents to be that there is so much more than the negative connotations that go along with the label Down syndrome?
Thanks for reading this. I do appreciate all the help you do give various groups (Autism, breast cancer, school bus/train passes, etc) and I do realize that you can’t possibly do a whole “to do” about every cause, but a little mention here & there would be nice. I know it would help me to feel like my son and his designer genes are not forgotten. Not to mention that it would probably do a lot for the Down syndrome community in helping to break down those negative associations of yesteryear.
Very truly yours,
Jennifer Scott
EEEEEKKKKKKK
Here is the email I sent. I don't know if it'll be read or even considered, but I hope it is.
To whom it may concern:
I am a loyal viewer of your morning show. When I wake up in the morning I make my coffee and sit down to watch my morning news at 6am. I watch it until 8:30am when Disney takes over. I enjoy my time with your newscasters.
This week you featured Autism Awareness Week. I applaud your efforts at showcasing everything autism. I’m glad that people who may not know what the signs are now do. I’m thrilled that people know there are services available to them if they find themselves in a position to have to look for them. I’m happy that you showed parents that there is life after diagnosis & that there is autism after childhood.
I am also really proud that Jim Watkins was able to come forward & share his experiences as a dad of a child with autism. I’m sure your features made autism very real for many folks who do not have a child with autism or any special need. I’m sure it also helped many who have a child or children with autism.
While I’m happy that you featured autism, I’m more than a little disappointed that Down Syndrome Awareness has never been featured. I know October is breast cancer awareness month, but did you also know it’s Down syndrome awareness month? Did you know that March 21st is also an awareness day; 3/21 for trisomy 21.
Did you also know that many children with Down syndrome also have a dual diagnosis of autism? I didn’t know that until very recently.
I’m pretty sure I would’ve noticed if the news had featured it somewhere. If I’m wrong, I apologize.
I am a mom of a child with Down Syndrome. When I received the diagnosis, it was so important for me to connect with other parents, professionals, etc so that I would know that Down Syndrome wasn’t a death sentence. It was important for me to know there were services out there that would help me help Sean, my son now 9 months old, reach his full potential. I searched high & low in NYC for something. We live in Brooklyn, by the way.
It was very rough for me in the beginning. Here is the link to my blog http://itsgooditsbaditsugly.blogspot.com/. It illustrates the turmoil I went through when we received the diagnosis when I was 28 weeks pregnant and our growth as a family much more than I can do in a simple letter. I can’t imagine how I would’ve felt if I had, like so many parents do, received the diagnosis after my son was born. I can’t imagine looking at my tiny baby & wishing him away like so many parents often do.
My 2nd trimester blood work came back abnormal. It put me at a higher chance of having a baby with Down syndrome. When I spoke with a genetic counselor at 19 weeks pregnant I was told that I should have an amnio done as soon as possible so I could terminate my pregnancy if I wanted to. I wasn’t given any hope for the future if my baby had Down syndrome. When I expressed that termination wasn’t an option for me, my counselor said to me, “But what about your older daughter? Do you really want to burden her with a Downs brother?” Can you imagine? Can you imagine how hard that is for a mother to hear? I can’t imagine hearing something like that after my baby was born. There were plenty of other instances during my pregnancy that were pretty much the same.
If it hadn’t been for my obstetrician, my son might not be here today. He might have been born, but he probably wouldn’t be raised with our family. My OB was instrumental in telling me that there is a wonderful life after the diagnosis of Down syndrome.
Our family was supportive. Our friends were supportive. I happened to be in a position where I was able do the research and get the help for my son that he so desperately needs in spite of the funding cuts. I was able to make the connections I needed to make. Not everyone has the kind of support that makes them strong enough to fight for their kids. Not everyone has the kind of support that helps them to know that “it” will be ok.
What am I getting at? If I had been assured from the beginning that my life would take on a whole new normal...... If I had known from the beginning that my son would be perfect with his designer genes and perfect for our family........ If I had seen adults, teenagers, known there were resources for me right from the start (prenatally and from birth) my mourning period might not have been so hard on me, my family, my daughter, my marriage. My mourning period might not have had to be a mourning period.
Is the lack of coverage for something as common as Down syndrome going to cause me to stop watching your news program? No probably not, but your show reaches so many households. So many people. Your show reaches a demographic that most news shows don’t, in my opinion. Wouldn’t it be nice to showcase something as wonderful as Down syndrome and show parents & parents to be that there is so much more than the negative connotations that go along with the label Down syndrome?
Thanks for reading this. I do appreciate all the help you do give various groups (Autism, breast cancer, school bus/train passes, etc) and I do realize that you can’t possibly do a whole “to do” about every cause, but a little mention here & there would be nice. I know it would help me to feel like my son and his designer genes are not forgotten. Not to mention that it would probably do a lot for the Down syndrome community in helping to break down those negative associations of yesteryear.
Very truly yours,
Jennifer Scott
EEEEEKKKKKKK
Friday, April 1, 2011
Spring is springing
I am watching my hydrangea blossom. It really needed to be repotted in a bigger pot. Rob & Meredith got it for me last Mother's Day. It has weathered a lot and is still going. Its gotten bigger & we even made clippings into plants.
I'm watching as my kids grow & blossom as well. I can't believe how inquisitive Meredith is. She's interested in taking in all the information she can. It's so amazing to be a part of. Just a few weeks ago I was concerned that Sean wasn't curious enough. That he wasn't inquisitive. Well...... boy has he proved me wrong once again. It's almost overnight that he is exploring his world in a whole new way. I wonder if he was more mobile whether he'd be more interested in seeing what else is "out there". Both of them learn how to do new things each day.
Sean even got a haircut! His hair was so long. Now with his new coif, he looks like a little boy. So spring is springing. Albeit, slowly....... But it is springing.
I'm watching as my kids grow & blossom as well. I can't believe how inquisitive Meredith is. She's interested in taking in all the information she can. It's so amazing to be a part of. Just a few weeks ago I was concerned that Sean wasn't curious enough. That he wasn't inquisitive. Well...... boy has he proved me wrong once again. It's almost overnight that he is exploring his world in a whole new way. I wonder if he was more mobile whether he'd be more interested in seeing what else is "out there". Both of them learn how to do new things each day.
Sean even got a haircut! His hair was so long. Now with his new coif, he looks like a little boy. So spring is springing. Albeit, slowly....... But it is springing.
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