Blessed

Today I advocated on behalf of my daughter. I could not stand by, do nothing, and let March 31 go by without at least trying to have some impact. Quinn is depending upon me. Quinn is depending upon all of us. I think I was successful in getting some individuals to think about what the r-word means and how it can hurt people. People listened. They shared experiences. At one point of the day, someone told me that Quinn was blessed. He/she said that Quinn was blessed because she has me, her father, and her brothers. If you knew this person, you would know what a huge beautiful compliment this was. I could tell it was sincere. I was moved and touched. I told this person thank you, but it is really I who am blessed. Quinn is exactly what I needed in my life. I am astounded at how I was going along in my life without a clue of what I was missing. I want to make this perfectly clear – I am not a special parent or a person with special abilities in parenting a child with special needs. I still struggle. I still get sad. This will continue. But, overall, I have been moved by this little girl’s impact in my life. I hope everyone is blessed in some way by having someone who has Down syndrome or another disability in their lives. It could be a friend, family member, Godchild, acquaintance, anyone – don’t just live your life without really looking at these wonderful people and the unconditional love they possess. We can learn many lessons about ourselves, others, and the world around us through these experiences. Without Quinn I would have never have done what I did today. She has inspired me to make a difference in this world. Thank you my darling Quinn. I am blessed to be your mommy.

-Karyn

Wonder by Natalie Merchant

On Natalie Merchant’s 1995 Tigerlily album is a song entitled, Wonder. Some have connected this song to Down syndrome, although my research on the subject hasn’t uncovered any specific connection between Merchant and Down syndrome (if you have found something that differs from this, please let me know). The reason, however, that this connection has been made is because the music video includes a young woman with Down syndrome along with other diverse women.

The song mentions the term gifted, and as someone who used to work with gifted children, I think that Merchant is not necessarily using the term to describe those with high IQs, but to describe the way unique women can have impact upon others. She uses a variety of women in her video to demonstrate the gifts of different women from different races, generations, backgrounds, and ability. We all have something to offer the world, especially individuals with Down syndrome. We should also think positively about our future and what we have to offer the world. I am touched by this song when it comes to Quinn. I really love the chorus and how at one point in the video Merchant speaks directly to the young woman with Down syndrome. I have also included another YouTube clip below which has a moving performance of Merchant singing the song while playing the piano. I always loved hearing Wonder, it inspires me personally as an individual, a mother, and a woman. Let’s all think about the wonder we have to offer the world.

"Wonder"

Doctors have come from distant cities
Just to see me
Stand over my bed
Disbelieving what they're seeing

They say I must be one of the wonders
Of god's own creation
And as far as they can see they can offer
No explanation

Newspapers ask intimate questions
Want confessions
They reach into my head
To steal the glory of my story

They say I must be one of the wonders
Of god's own creation
And as far as they can see they can offer
No explanation

O, I believe
Fate smiled and destiny
Laughed as she came to my cradle
Know this child will be able
Laughed as my body she lifted
Know this child will be gifted
With love, with patience and with faith
She'll make her way

People see me
I'm a challenge to your balance
I'm over your heads
How I confound you and astound you
To know I must be one of the wonders
Of god's own creation
And as far as you can see you can offer me
No explanation

O, I believe
Fate smiled and destiny
Laughed as she came to my cradle
Know this child will be able
Laughed as she came to my mother
Know this child will not suffer
Laughed as my body she lifted
Know this child will be gifted
With love, with patience and with faith
She'll make her way

March 31 is Here At Last!

Tuesday, March 31 is here!! Sometime during this day please remember the end the r-word campaign. Tell someone about this campaign and how the r-word can hurt. I have included a number of clips with this posting. There are just so many awesome public service announcements out there – it is just so difficult to select just one. If you don’t watch all of them, please be sure to at least watch the last one if you haven’t already seen it. It is from a documentary called Offense Taken. Note to self: oh great now another documentary that I have to find (oh I love documentaries)! I stumbled upon this trailer on youtube tonight and found this documentary so interesting. It is about a community’s efforts to combat use of the r-word by raising awareness of how it hurts those who know individuals with cognitive disabilities. The most important thing about March 31st is don’t just remember the end the r-word campaign on this day – please remember it every day! Thanks!

The Scrapbook - Photo 3

My story continues...if you haven't read part 1 and part 2, click to get connected to those entries.

Part 3:

The next photo in the scrapbook comes from my awkward middle school days. In this photo we see me as a young girl feeling unsure about my appearance. I look around the crowd and see other students, some appear more self-assured and look so beautiful; I envy those students. I also see other students just like me in the struggle they are encountering in trying to feel comfortable with themselves and their bodies at this difficult time. I feel a special bond with these students. Since I am all about my peers and what they are doing at this time in my life, I start noticing a group of students in school that I really don’t remember registering in my memory before – these are the students who are in special education, more specifically students who have cognitive disabilities. I notice them hanging out together with no one from regular education talking to them. Although I see them in the lunch room sitting across the way, there seems to be a huge canyon separating us that no one tries to pass, unfortunately including me. Because appearance and my reduced self-esteem are at the forefront of my mind, I notice these students’ clothes, their hair, the glasses, and the way they look. The stereotype becomes sealed in my mind. This is another thing that I regret – I had that horrible stereotype myself; it won’t be until almost another 25 years that I let some of it go. And unfortunately, I still struggle with it to some extent. It is from this memory that I become obsessed with the idea that Quinn will have style. I know in the big scheme of things this may seem trivial, but this is built upon difficult feelings from my middle school years – the time I felt most unsure of myself. I also hope and pray that Quinn will have a totally different experience in middle school. I hope that the canyon no longer exists. Special education and regular education students will interact and enjoy each other’s company. Doesn’t almost everyone want their child to have a different experience than they did in middle school? I certainly do, and I will do everything I can to counter those stereotypes so Quinn has the best chance she can during those awkward years.

-Karyn

Road Map to Holland by Jennifer Graf Groneberg

For those of you who are not familiar with this book, Road Map to Holland by Jennifer Graf Groneberg is an excellent book that gives one mother's experience of having a child with Down syndrome. I read the book awhile back, but recently picked it up again to thumb through some sections that I felt drawn to. I would like to share two of them with you.

The first one talks about Emily Perl Kingsley's essay Welcome to Holland (something I shared before). This essay was part of the inspiration for Groneberg's book, although Groneberg wanted more information on what to expect in the experience, hence the title of the book. In addition to writing her essay, Kingsley was a writer for Sesame Street. She became an advocate for people with disabilities after the birth of her son, Jason. This advocacy included having individuals with disabilities on the cast of Sesame Street. If you watched this show when you were a child (or now with some little one you know), you totally can see Kingsley's influence. I am drawn to this quote because of my reflection on my memories from the past involving experiences with individuals with disabilities. This excerpt is from page 220 of Groneberg's book. It follows after Groneberg realizes that a Sesame Street video she has seen many times has a child in it, named Michael, who has Down syndrome. She then does some research on Emily Perl Kingsley. The excerpt is as follows:

"A vivid childhood memory comes to me. I'm four years old. The bright morning sun shines through the windows behind the television. I can see dust motes in the shafts of light; to me, they look like sparkles. The brightness makes the television screen seem dark. I have to concentrate to see the images. I'm so filled with happiness I can barely contain myself; it's my favorite shoe. There's Ernie and Bert, Big Bird and Grover. But the best is the Count. I love to count with the Count.

I've grown up with this show; these images of people all ages and colors and abilities living and working and playing together. It's possible that I simply didn't need to remember that Michael had Down syndrome, until now. My mind, and heart, is used to the idea of acceptance and inclusion. For this, in part, I have Emily Perl Kingsley to thank.

Once again, she's given me hope. I feel a great sense of relief. It's as if my previous indiscretions - not thinking about the mother or the family of the man at the secondhand store; not knowing what to say to the man gathering shopping carts in the grocery store parking lot - now have a counterpoint. At least there's this; I watched a Sesame Street video hundreds of times without focusing on the child with Down syndrome. Before I even knew it mattered, I accepted him without a second thought. If it happened to me, maybe it's happened to other people, too."

I can really relate to Groneberg. I had totally forgotten about the experience of watching Sesame Street and it's impact on my early development until I read Groneberg's account of this for herself. Thanks for including this in your book.

The second passage is on page 237. While at a picnic, Groneberg reflects on how her experience at this event would have differed without her twin sons, one of which has Down syndrome. She would have had just one child then, named Carter, and never would have had this experience with Down syndrome and the clarity it can bring. I think about that a lot too. She also talks about the 90% of individuals who decide to terminate when they receive a prenatal diagnosis of Down syndrome. As a person in the 10% group, I think about this a lot - I did have a choice, and I am so happy that I choose Quinn. I feel honored that Groneberg mentions people like me in her book. The excerpt is as follows:

"For a brief moment, I wonder who I might have been, if Carter was my only child. I probably would be worrying about the food, or my clothes. I'd be thinking small thoughts, little unimportant ones, and I'd miss the big picture. I feel it anew, in every cell of my body: the voices, the laughter. I see it: the beauty of the faces of the children holding sparklers. Fathers and mothers bent over them from behind, supporting them, guiding them. Everyone lustrous and shining.

I think again on the nine-out-of-ten statistic, only this time, I also think about the women who might choose a child like Avery. I see them all around me: these are the women I pin my hopes on. These are mothers of our future, if the future is to include children like Avery."

Down syndrome has added so much to my life. I would never have read Groneberg's book if it wasn't in my life. I would never have had this blog. I would never have learned as much as I have. Once again, I owe all of this to my Quinn.

If you haven't seen the clip below, please do - it is of Groneberg reading another excerpt from her book. Groneberg gives me hope. I really appreciate her book. You can also go to her blog too, called Pinwheels. It is in the blogs that I follow.



-Karyn

Extreme Blog & Quinn Makeovers!

As you can see, my blog received a beautiful makeover done by Lu from the Poppies’ Blog and Poppies Blooming. This is what I love about Down syndrome! I meet a beautiful woman from the U.K. through an online support group that I go on, downsyn.com, and she just offers to help me makeover this blog. What a great heart and immense talent Lu has! Thank you so much, Lu! Down syndrome has enriched my life in so many ways – I have met such wonderful people because of it and am so grateful to have you all in my life.

While Lu was making over my blog, Quinny was getting her first makeover herself. Today was her first haircut! We are growing her hair long, but she did get it trimmed, received some "whispy” bangs, and had it styled by her wonderful hair stylist Mr. Tim (Aidan’s hair stylist too). Above are some photos of my beauty queen. While we were there getting Quinn and Aidan’s haircuts, we saw another couple who were just looking and looking and smiling at Quinn. Their little guy looked like he had Down syndrome too. We never mentioned the Down syndrome, but instead felt a connection and smiled and commented back and forth to each other.

Down syndrome connects people all over the world!

-Karyn

The Scrapbook - Photo 2

Here is the next part of the story. If you haven't read the beginning, it starts here.

Part 2:

Turning the page of the scrapbook and continuing on towards the arrival of Quinn, we see that the next photograph comes from my elementary school days. There is a photo of myself as a young girl attending the yearly Father’s Day family reunion picnic. I look around at the crowd and see a distant relative who cares for youth who are developmentally disabled. I have seen this woman before, but do not know her name. From this photograph it is obvious what I am thinking, I want to look, am drawn to look at them, but yet feel uncomfortable – like I shouldn’t be so interested. I wonder what it must be like to care for a child who has a disability. How would that feel? Why do people do it? Who is this woman, and why does she take care of these children? I try to concentrate on the conversation happening around me – to distance myself from these thoughts, but I keep going back to watching this woman and these youth. I feel uncomfortable, yet intrigued. Did I know deep down that someday this would be my fate? Or is this just a normal reaction when noticing those who are “different?” There is another twist of fate in my story – I was once the person who could not stop staring, and now I will be the one that others stare at.

-Karyn

The Scrapbook - Photo 1

This is a story I have been thinking about doing for a long time. It keeps running through my head when I am walking somewhere or driving in the car - figures, at times when I am nowhere near a computer. And on top of that, when I am actually at the computer I never seem to have the time to write this all down at once, so I am going to do this one in installments. It will help me make sure I actually get this story down - no longer floating around in my head, plus I will have multiple blog entries. Two purposes fulfilled all at once - ha ha.

Part 1:

I look back on my life and feel there are snapshots of moments that appear to predict the entry of Quinn into my life. It is like looking at a scrapbook and seeing events captured in isolated photos that appear to lead up to some ultimate life altering experience, like school photos leading to graduation, dating photos leading to a marriage, or pregnancy photos leading to the birth of a child. In reality there was no way to accurately predict that I would have a child with Down syndrome and it is only that these events are of coincidence, but I still nonetheless feel drawn to reflect on these moments in time.

Two events stand out even prior to my birth. When I was inside my mother, there were three potential generations all together in one - my mother, me, and Quinn. In that egg that would ultimately become Quinn was an extra 21st chromosome. Little did my mother know that she would set into motion a whole series of events that would have such an impact on our family. Quinn was there with me way back when I entered this world; she just waited until 2007 to make her grand entrance.

I learned about the second prenatal event when I was entering young adulthood. At that time, my mother shared with me a story dating back to when she was pregnant with me. She was no longer in her 20s at the time of the pregnancy. It was a difficult time for her given some intense social relationships because of a person who said some hurtful things about her and the baby. This person was talking about my mother having a child at such an "old" age (note: I was 35 when Quinn was born) and stated that my mother's child would probably be "the r-word." My mother told me that she always thought this person said this because of jealousy over my mother being pregnant, for this individual wanted another child. My mother's purpose in telling me this story was to demonstrate the character of this individual and tell me how one should treat others in less hurtful ways, but now I think back to this story and reflect upon something all together different. Was my mother relieved that she didn't have a child with a cognitive disability? Did she feel she dodged a bullet? I realize that most likely she felt that way, and I don't blame her. I probably would have felt the same. I was her only child that graduated from college, ultimately completing a Ph.D. - so maybe my mother saw some irony in this situation. The one who excelled academically was the same one that was wished to be cognitively disabled. What does this say about that social group at the time? If you are jealous of someone having a child, perhaps you might wish them to have a child with a disability? Would it be seen as the ultimate punishment? Maybe it is all fitting that out of my mother's four children, it is I who was the one who would go on to have a child with a disability, the one that someone wished would be cognitively disabled. It seemed like fate that Quinn would enter my life. When I was waiting to enter the world I was called "the r-word," and now I am the one fighting against that same word because of my daughter.

-Karyn

Happy Tears

I was familiar with Karen Gaffney before, but today I was compelled to see her story again. It was just one of those days that I wanted to feel some hope. Rather, I should say that I NEEDED to feel some hope. Quinn was giggling to herself today and I so loved seeing her do this - it melted my heart. I was just thinking about how beautiful she is, and then it got me thinking about her future (drat I hate those fears that come in at the most inappropriate moment). I just was drawn to Karen's story. I needed to see the positive today. Karen gave me that.

I unfortunately missed seeing Karen in person recently; she came to our area for a number of presentations. I hope one day I do have the honor of meeting her. I cried such happy tears watching these clips. Hopefully someday Quinn will bring other parents a similar hope that I feel from Karen's story. God bless you, Karen. You don't have any idea how much you helped me today.

Reflection on the R-Word

There are three reasons why I don’t like the r-word. First, it is a deviation from the official diagnostic terms in professional arenas. The official terms tend to be cognitive disability, intellectual disability, developmental disability, or in the American Psychiatric Association’s Diagnostic and Statistical Manual-Fourth Edition Text Revision (DSM-IV-TR), mental retardation. The r-word is not the appropriate term even for the DSM-IV-TR, since that would be MR. The r-word just isn’t the correct term to use.

Secondly, the r-word for me is rooted in a very disturbing and hurtful history. I have already talked previously about this in earlier posts. In the 1950s mainstream society viewed individuals with cognitive disabilities as individuals who should not be a part of society, perhaps a sign of something that was deficient with the parents. There were some very strong families out there who did not do this, but there was a strong influence to institutionalize children with cognitive disabilities. If you watch many documentaries on this subject, the use of the r-word is prevalent. If one observes the look on the individual’s face as he/she is using this term, it often can say a lot about attitudes and comfort level about being around those with a cognitive disability. It was this attitude that allowed the mistreatment of individuals institutionalized at Willowbrook State School in New York. This included purposefully giving individuals hepatitis in order to experiment with treatment methods, not giving them clothing, feeding them in less than five minutes, and allowing them to sit hours and hours with no stimulation. As in classical conditioning, I believe that the r-word has been paired with all these negative images and feelings so much that just the use of the word brings forth all of these negative feelings and connotations.

Lastly, today the r-word is used as a joke, slang, and a put down and still reflects our society’s overall value placed on those with a cognitive disability. The term again attempts to dehumanize those with a cognitive disability, but all in the name of lighthearted fun. We are told to get over it, it is only a word – oh it is just a joke. I suppose I could try to get over it and lighten up, but I don’t think I ever will because this is my daughter they are talking about. How would you like your daughter to be the butt of someone’s joke? This is a more subtle form of discrimination that other minority groups have felt too. I personally think that if it is clear that certain terminology is not appropriate to use in portraying other minority groups, then this same reasoning should apply to the r-word and its use with those with cognitive disabilities. Just a reminder, don’t forget about March 31st!

-Karyn

The Last Ones by Matthew West

Matthew West’s album History includes a song called The Last Ones. West met a young girl named Taylor, who happens to have Down syndrome, when he was performing in Kansas City. Taylor’s father was assisting at West’s concert, so she was present during his rehearsals and sound checks. In various interviews, West admits that when he first met Taylor he felt sorry for her. Unfortunately I remember that feeling before I had Quinn in my life. I am ashamed to admit that now, but yes I was once like that. I appreciate that Quinn became part of my life to help me. Going back to West, the more West came to know Taylor, he began to see that God has a real purpose for her life and began to personally experience the impact she can have upon others. The Last One became a part of his album History because the concept of the album was that history makers come in all shapes and sizes, including those like Taylor with Down syndrome. Let’s also celebrate Quinn’s place in history and the impact she has on others, starting with her mommy.

Here are the lyrics to West’s song:

My friend Taylor she's an angel
Ten years old and beautiful
She's a living, breathing miracle
And she proves it everyday '
Cause the odds were stacked against her from the day that she arrived here
And the doctors told her mom and dad she'd always be that way
And I confess when I first met her I was thinking life's not fair
But then she wrapped her arms around my neck And it all became so clear

God bless the last ones

One day Taylor sent me a picture from her Special Olympics race
And I could tell just by the looks of it she was coming in last place
But she crossed that finish line with a smile upon her face as if to say

God bless the last ones

Maybe the last ones are the lucky ones
The ones who got this whole thing figured out
'Cause when they go looking for something beautiful
They start looking from the inside out

On our way into the restaurant we passed a homeless man
He was half drunk and half asleep with a paper cup in his hand
And I confess when I first saw him I was thinking life's not fair
But then Taylor reached out and wrapped her arms around his neck
And it all became so clear

God bless the last ones

I wish we could all be the lucky ones
The ones who've got this whole thing figured out
Maybe the next time we go looking for beautiful we'll try looking from the inside out

God bless the last ones

The song is a really beautiful one, and I am so happy I stumbled upon it. It made me think that given the recent comments made by the President and how society in general portrays those with disabilities and in the Special Olympics, maybe we should really contemplate the meaning of what West is saying to us here. I do think there is great wisdom in individuals with Down syndrome in how they love and care for others. We all could learn a thing or two from having Down syndrome in our lives. Thanks for reading,

-Karyn

Life is Grand

I actually won an award from Renee at My Life With My Special K's!

I guess this means that people are actually reading my blog – ha ha.

Anyway, thank you very much Renee! I really appreciate it!

The award is called the Life is Grand Award. And for this award I must give five reasons why I think life is grand and then tag five more people. My reasons life is grand are:

1. My kids, Riley, Aidan and Quinn – the smile they put on my face and love in my heart!
2. My husband who helps out so much by taking such great care of our kids and our home. Thanks, Neal.
3. Learning so much because DS entered my life.
4. My friends and family and the great support they bring to my life.
5. My career – the wonderful people I get to meet and learn from.

I also would like to award all of the following. Thank you for your blogs. You have no idea how much comfort and support they bring me! It is also because of you that life is grand!

1. Mutterings and Musings
2. The Zoromski Chronicles
3. Believing in Miracles
4. ReJenerationS
5. My Holland, My Italy

-Karyn

Brittany's Song by Jonathan White

Happy World Down Syndrome Day!

It was a Labor Day to remember when she came into this world
it was the day we had waited for so long.
Then the Doctor came and said to us with worry on his brow,
we’ll have to take her down the hall with us for now.

The word came back the very next day, your girl will be just fine,
but she will have some special needs unlike yours and mine,
but she will give you lots of love the kind that’s seldom seen,
and now I know she’s the child of my dreams.

She’s down right beautiful, she’s my little girl,
she’s down right beautiful, and she fills my world,
with lots of love, lots of smiles, and she’s happy can’t you see.
Yeah she’s down right beautiful to me.

Now she’s growing up oh so fast I can scarce believe my eyes,
it seems like only yesterday when I’d hear her cry,
now I know the day will come when she’ll go away,
till then she’s down right beautiful to stay.

She’s down right beautiful, she’s my little girl,
she’s down right beautiful, and she fills my world,
with lots of love, lots of smiles, and she’s happy can’t you see.
Yeah she’s down right beautiful to me.

She fills my world with lots of smiles and she’s happy can’t you see.
Yeah she’s down right beautiful to me.

21 Things for World Down Syndrome Day

Given that it is World Down Syndrome Day, I would like to share 21 things that I have learned because of Down syndrome. I hope you join me in spending some time today also reflecting upon about what you have learned.

1. My life was made better by having Down syndrome in it. I have grown so much as a person and have met such beautiful people because of it.

2. My family’s life is better because of Down syndrome. My boys are more sensitive and caring. My husband has become such a loving primary caregiver to Quinn. She is Daddy’s Little Girl. It is really beautiful to be able to observe this.

3. Language can be hurtful. The r-word is used entirely too much. I never noticed it before. I was truly ignorant about how often it is used and how hurtful it is. Please stop the use of this word. Say something when someone uses it. Person-first language is also so important. My daughter has Down syndrome, but she isn’t Down syndrome. In addition, the term Downs in front of the individual (like with Downs baby) is not preferred (at least by me).

4. Sometimes something that you thought would cause you so much pain is actually the thing that makes you stronger.

5. My daughter with 47 chromosomes will be more loving and appreciative of others than some people with 46 chromosomes. Who really has the disability here? I really don’t have any patience anymore with mean, typical (meaning 46 chromosome) people. I am becoming more and more assertive because of this.

6. You learn a lot about the character of those in your life when you go through something like this. There are some people who have been so supportive, and I am blessed to have these people in my life. Unfortunately this isn’t the case with everyone, but you can’t dwell on that. At least you get some clarity in your life because of Down syndrome.

7. Low muscle tone isn’t entirely a bad thing. It means that Quinny just melts right into you when you hold her.

8. There are some truly remarkable people who happen to have Down syndrome. For instance, Karen Gaffney swam across Lake Tahoe. Christopher Burke is a famous actor and musician. In fact, quite a few people with Down syndrome have musical ability. Riley may have another member in his rock band. As authors Jason Kingsley and Michael Levitz (who also have Down syndrome) demonstrate in their book, don’t count people with Down syndrome out!

9. Babies with Down syndrome are so darn cute! I certainly can’t resist them. Riley agrees.

10. It has been estimated that something like 90% of those who receive a prenatal diagnosis of Down syndrome terminate their pregnancies. It is hard to believe that I am in the minority here. Although I am not pro-life, this still hurts. The idea that a wanted, planned baby would be terminated for nothing more than not being “perfect” is a sad reflection on the values in today’s society.

11. Some countries treat those with Down syndrome like we did in the USA years and years ago. They are given up and placed in orphanages and institutions. This is truly sad considering my point with Number 8. Like some talented people who end up in prison, there are some talented people who end up in mental institutions because of Down syndrome. Only with the Down syndrome side of things, this is because of an extra chromosome, not by any bad choice that they made or because others felt they deserved it through their behavior.

12. Although Down syndrome was named after Langdon Down, it was actually Jerome Lejeune who identified the true cause, that is, three chromosomes being present on what should be the 21st pair.

13. Down syndrome is a syndrome – that means that everyone with Down syndrome does not have the same functioning and/or presenting problems. For example, it is possible to have Down syndrome and not have a heart defect. It is a syndrome, so there are a set of areas that can be affected and which areas vary depending upon the individual.

14. A person who has a child with Down syndrome starts to get excited when they see someone else with Down syndrome. It is a bond like no other. We gravitate towards other families with children with Down syndrome.

15. You come up with strange ways to cope. Sometimes when Neal and I feel down because Quinn isn’t progressing as fast as other kids her age we start out a conversation with “You want to be depressed…” It is just a weird little way that we show our bond on this journey. It isn’t bad to become depressed every now and again. It is only natural. It is nice having Neal along with me on this journey.

16. Quinn likely has Down syndrome because of my egg having an extra 21st chromosome. It was either that or because of Neal’s sperm, but it is more likely because of my egg. Think about that, it just happened by chance. It was by complete chance that this little girl would come into our lives and impact us so much. Isn’t that awesome when you really think about it? Sometimes things have a funny way of working out.

17. Having a child with developmental disabilities isn’t necessarily a bad thing. Your baby is a baby for a longer period of time. Since Quinn may be the last baby I have, that way I get to keep that feeling of having a baby for a longer period of time.

18. Down syndrome, because of identifiable physical features, is the face of cognitive disabilities. Unfortunately this creates some problems in the assumptions others make about people with Down syndrome just based upon their appearance. I am learning what discrimination truly is. As a Caucasian American, I was pretty naive about discrimination before having Quinn, but now I have a better understanding about the more hateful aspects of our society. When you have a child with a disability, you see both the extreme good and the extreme bad in the world.

19. Blogs are actually fun. I would never have started to blog if I did not have Quinn. I joined an online support group in which a lot of members had blogs. I became intrigued and started to explore them. Then I started thinking maybe I could create a blog for my family and friends, my past students, others on this journey, and anyone else who is interested in learning a bit more about what it is like for families who have a child with Down syndrome. This has been pretty fun and therapeutic all at the same time.

20. I have learned so much from Soren Palumbo, Emily Perl Kingsley, Jennifer Graf Groneberg, Kathryn Lynard Soper, and all the authors of the essays in the book Gifts. Because of Down syndrome I continue to learn on a daily basis and am receiving one of the best educations possible.

21. I really understand the concept of unconditional love. It is one thing to study it in psychology class. It is another thing to feel it while you are parenting your typical children. However, it is really truly the best thing to fully experience it when you parent a child who has a disability. This is what parenting is all about. Unconditional love is beautiful.

-Karyn

Some Additional Responses to the President

Check out this blog - it is awesome!
http://sarahely8989.blogspot.com/2009/03/late-breaking-news-letter-to-president.html

Also Riley sent a response to President Obama. Here it is...

I don't think it is very funny to laugh at people with disabilities. It is very wrong to do that.
Riley, age 8

I love this kid - he has a great heart and fabulous morals! You rock Riley! Be like Riley and do something!

-Karyn