Thursday, October 19, 2006

Open Letter

There are many ways that this letter could have been written. I could have pointed fingers throughout, I could have used anger as my motivation and have it reflected in the words you are now reading, or I could have calmly and peacefully written about my disappointment in the community without pointing any fingers. I chose the latter, but you should all know that I strongly considered using anger. I think disappointment is a better reflection of my feelings.

I am disguising the name of the town being discussed so that opinions are not swayed either way for the community I love. The community as a whole is wonderful as are the people in it. There were just enough encounters that made me feel that this letter was warranted.

To the people of Riverbank, it has been personally difficult for me over the last 2 years to keep my opinions of our community to myself. What made me decide to acknowledge my feelings now? Honestly there is not one event that swayed me but a combination of idiotic, ignorant and outright mean behavior that prompted me today to write to you about it. I am not going to derive any pleasure from this letter, only grief because of my true love for the community and the people in it.

Over the past couple of years my wife and I have given the community the benefit of the doubt when it came to my daughter Amanda, who in our eyes just happens to have Down Syndrome, but in your eyes has a terrible disease that justifies you to speak with each other and express pity and concern for us. In two little one syllable words STOP IT. I ask you to do this not to scold you but to educate you. From the start we did not keep Amanda’s DS a secret; we didn’t keep her locked up in our home out of shame, she was strolling around with us from day one. After Amanda was born we did what we had done previously with our other two children, we called you up to let you know that we have a new beautiful addition to our family, but yes with Amanda we told you immediately that she was born with down syndrome.

Honestly, the first day or two was difficult for my wife and I because Down Syndrome was foreign to us just like going to a new country (read Welcome to Holland), but having a new baby wasn’t and that soon overshadowed her Downs. The few who came to the hospital were given a true look into my feeling for our new arrival. I think it’s appropriate for the rest of the community to hear it. The following were my purest of feelings put to paper within the first week of our daughter's arrival.

When ever I saw a child with a disability I always thanked God for blessing my family with healthy typical children. When Amanda was born and we found out that she had down syndrome I went through the classic emotions; anger, denial, and guilt. I went to sleep that night afraid of what tomorrow would bring.

I woke up early the next morning and found that I had a dilemma on my hands, so I thought. If I always thanked God for giving us healthy typical children, what should I do now? God has given us a child who has something called down syndrome, something I knew nothing about. I thought about it for a moment, then stood up in bed, looked towards the heavens and said... thank you.

See, although it has only been five days since Amanda was born, I can already feel the joy that she has brought to our lives. Yes, we have ups and downs, but over all we look forward to our lives with Amanda. I can already feel the strength she has given us. Because of her, I will be a better husband, father, son, brother and friend. I know that I am the one that is supposed to teach her how to live, but she has taught me so much already. My only regret that I have is how I initially felt when she was born. I hope she forgives me.”

The first few days of our lives with Amanda were quite devastating, but not in a way you might think. It wasn’t the down syndrome that had us scratching our heads; it was the overall response from the community. When we were in the hospital, unlike with the birth of our other two, we didn’t receive balloons, stuffed animals, cards and flowers. We received an occasional phone call which usually ended up sounding like a sympathy and condolence call. My daughter was just born and we receive condolence calls? Note to the community; I mentioned that my wife and I had given many of you the benefit of the doubt, not knowing how to react, this was completely understandable however, this wasn’t the first time a child with special needs was born in our community. Let me give you a quick word on how to react if someone in our community should give birth or adopt a child with special needs. Ready for this…….CONGRATULATIONS!.......It’s that easy. Trust me that’s all the parents want to hear.

Let me not forget to mention that a few of our friends did come and visit us at the hospital and did call us and wish us a congrats. You know who you are and just know that I love you and thank you. Your families will always be held close to our hearts.

Also, since Amanda was born we have made new friends and have become closer to others. I find it interesting that our newer friends have accepted Amanda more openly and willingly than some of the friends who we have had longer relationships with which hints to me that maybe my family has changed since Amanda’s arrival. I can truly say that our outlook of life and the things that we used to consider important has certainly been altered. Things that we used to take for granted and some of life's simplicities are more important than some of its complexities, if that makes any sense.

Typically, after a birth in our community, friends get together to provide meals for a week or two to help the family so that mom can rest. We were amazed that the community provided over a months worth of meals which at first on the surface was quite nice, but soon gave us insight into what was approaching. The gesture was nice and we certainly appreciated everyone for pitching in, we never had so many bags of salad in our fridge, but let me ask you, where were you after you dropped off the meal? A day, a week, a month later, we never heard from you again. Your kindness was overwhelming but lost its genuine feel when all became silent. The silence was soon replaced with gossip. I can’t tell you how much hearsay was floating around about us. I’m sure there was more but I could only vouch for what I heard and let me tell you, it was painful.

What hurts even more is my wife and I are expecting again and people for the most part can only role their eyes wondering what the hell we were thinking. People automatically assumed that my wife and I were done having children because of the arrival of Amanda. Why? Just the opposite. The beautiful sole of our daughter had us wanting more kids. Are we a bit concerned of the possibility of our next child being born with Down Syndrome, yes, a little, maybe, but isn’t that natural? The odds are in our favor that we’ll have a typical child, but it really isn’t as significant as it once was. My wife and I have even considered adopting another child with special needs.

For the women out there who say things like “I don’t understand how Robin does it. I could never do what she does”. Let me share a little secret with you. Yes my wife is an incredible and special individual, but you know what, if you should ever be faced with the same circumstances, you would be able to do it too. Honestly think about it, you bend over backwards for your children now, what makes you think you couldn’t do it for your child who needs more attention? If for some reason you should need help smoothing over those little bumps (and that’s really what they are, bumps) look on the positive side, you have us. We’ve been there, done that and still doing it.

My daughter is not sick nor should she be pitied. Down Syndrome is the presence of an additional chromosome in our genetic make-up, we typical beings have twenty chromosomes, she has twenty-one. Down Syndrome is apart of Amanda the same way the color of our skin is apart of us. DS does not define who Amanda is; Amanda defines what Down Syndrome is. Amanda is my loving, beautiful, funny, inspirational daughter, who has a wonderful future ahead of her. If there was ever a button to push or a switch to flick that would make Amanda typical, I WOULDN’T TOUCH IT, EVER. AMANDA IS PERFECT JUST THE WAY SHE IS.

I love my community. Please understand that this letter is to educate and hopefully help you understand that having a child with special needs doesn’t make a family as different to yours as you may think. Please remember this letter the next time a family is blessed with a special baby.

For those of you who are new to “Down Syndrome Life” I started this blog around the time Amanda was born thinking that I would have overwhelming experiences to share with you because of her DS. As you read from my early blogs to the present, the blog becomes more about life in general because as I mentioned above, our family is really no different than yours.


PS. I encourage everyone who took the time to read through this letter to leave a comment, specially my regular readers who have children with special needs.

I have been corrected by Dani, mom to Alyse of the following error in my letter:

My daughter doesn't have 21 chromosomes, she has 47 chromosomes, and triplet copy of the 21st.

Thank you for the heads up call Dani. I guess this was a Newbie mistake:)


Lori F said...

I have two reactions to this letter. #1) I am so sorry that you & your family have been put in a position where a letter such as this is warranted. #2) Awesome letter. Clear, honest & to the point. Hopefully, this will open some eyes & hearts. I always think communication is the way to go in a situation like this, much better than just stewing about it! Keep us posted on reactions if you can. Also, we're sending extra prayers your way during this time! When is the baby due, by the way?

BStrong said...

Lori - No need to be sorry. My wife and I have learned a lot from this experience. Also, we do live in a wonderful community. I'm certain that my family isn't perfect either, but the one thing we can do is learn from one another.

Thank you for your comment.

Jeff said...


Glad you wrote the letter my friend. Well said and well understood on my end. We have a long way to travel and many people to educate even if it's one person, family or community at a time.

BigDawg...aka...Nash's Dad.

Ellen said...

I don't have higher needs kids, but I've been working with them for nearly 10 years. I can't imagine doing anything else. (and I'm a regular reader)

Anonymous said...

It always amazes me—how people react that is, to something new or different. I must admit that before Miss E was born I could never imagine what it would be like to be a parent of a child with DS, and at the same time, I didn’t pity anyone I knew or saw in a public place for having a child that is seen as different.

There is no such thing as a perfect set of genes, and there is no way to predict what our future holds in terms of becoming a parent. Obviously, many parents elect to have those prenatal screenings, and while I am ok with those that do, I didn’t. It just didn’t matter to me prior to the arrival of my child what health concerns may be a possibility, what genetic makeup may hold for her future.

I remember one phone call with my mother, just after Miss E was born. She was delivering a message from my grandmother who is in her 80’s. She said, “I hope that she doesn’t plan on keeping her, what would her life become?”

Now while I completely understand this logic from an old woman whose history showed that persons that were seen as different, particularly those with DS were institutionalized—put in special schools, if educated at all.

This isn’t the that time anymore…

It astounds me that people still react so poorly to the news that someone they know has had a child with DS. It is not as if the world has come to an end. It is not as if the child’s life is hopeless, or the parent’s lives are ruined—so why do people react this way?

It’s plain and simple in my eyes. What is different or unknown is still so foreign some people just don’t know how to take it. Sad because many predict that 1 in 700 births are individuals with DS. Now, I won’t say that to be fact, I know there is a margin for numbers and I can’t even tell you where I got that figure.

My point is that it isn’t the end of the world, that something different doesn’t necessarily equate to something that should be seen as so obscure that people should act differently simply because of it.

46 chromosomes or 47—does it really matter? The last time that I checked Miss E’s heart beat sounded just like every child in my household—like my own. There is more that is the same that what is different.

It’s time for those who still hold pity for people who are in our situation as parents of children with DS, or any other so-called anomaly, to open there eyes—to realize that there is often more that is similar than what is different.

I am sorry you have had this experience in your community. I hope that your letter brings about some awareness. You are an amazing father—as your wife is an amazing mother. I am sure you are good citizens of your community, and that you shouldn’t be treated any differently merely because one of your children is sporting an extra chromosome on her 21st pair.

Great post Bstrong. Sorry about the rambling, long-windedness that’s one of my faults.

BStrong said...

Jeff – Thanks Jeff. I believe educating is the key. Also, thank you for the advice regarding the email on the not for profit inquiry. I will keep you in mind.

Ellen – Our kids are wonderful. Spread the word. Thanks for choosing such a noble profession.

Rebecca – Hey, whose blog is this anyway:) No need to apologize for the long comment. It’s all just old fashioned ignorance I suppose. All we can do is continue fighting the good fight.

BStrong said...

Rebecca - I just read my comment to you and it sounded as if I was calling you ignorant. Whoops! I meant the people who react poorly are ignorant and need to be educated.

Lori - To answer your question, My wife is do in December.

amy flege said...

wow! how moving and so well said. pat yourself on the back for sticking up for your child and family and all our kiddos!!! there are so many people out there that are uneducated about Ds. you did good!

BStrong said...

Amy Flege - It's an epidemic(ignorance):) Although awairness has come a long way.

Anonymous said...

Thanks for that subsequent comment--but not to fear, I didn't think you were calling me ignorant. Your reply read just fine the first time around...but thanks for thinking of me in your further clarification.

Yup, I'm a blog thief :)

Michelle said...

what an well-written letter! Too bad it was even needed in the first place, but I think you did a great job of educating and making people aware of what is and isn't ok and how to act around your family. Now - are the people who need to read this letter going to be able to? Did you submit it to your local paper or anything?

Martha Hodge said...

I am a proud mama to our beautiful new baby boy Marcus. I happened to come across your open letter and found it to be so special. The birth of our son with ds was no surprise to us we were told pretty early on and while we did not jump for joy at the news we did accept it and then rolled up our sleeves and said ok lets go. I am in love with my little man he is my heart and the joy in my just because he is my son and he was wanted and so loved. The fact that he was born with ds is really just the way it is and that is alright with us. We pray that he has a happy and long life just like the rest of our kids.Thanks for you letter.
Martha Hodge

BStrong said...

Michelle - It was in my opinion needed however, even if it wasn't, its a nice reminder for those that need a bit more understanding.

There are those who visit my blog that won't admit to it, but site meter tells the truth.

Martha - Thanks. You said it perfectly: "we did accept it and then rolled up our sleeves and said ok lets go"

annie said...

Very well said. More people need to hear the message. God bless you and your beautiful family.

Kim Ayres said...

Ignorance is the saddest thing about Downs Syndrome. According to all the statistics I come across, upwards of 80% to 90% of pregnancies of children with DS are terminated these days, which to my mind is nothing short of Eugenics.

Yours was one of the first blogs I regularly started commenting on, and you were one of the first regular commenters on mine. It seems strange to think that it feels as though we go way back, yet in truth we've known each other only about 15 months or so.

The initial connection between us was that we were both fathers to children who had DS, but like you said about your blog, very quickly the DS becomes almost an irrelevance. Life carries on and most of the things we have to deal with on a day to day basis are far bigger than the DS.

People who don't know always think that the DS is such a big and terrible monster and are terrified by it.

The human race has a habit of lashing out and/or destroying what scares it, and that is the most terrifying aspect of all.

When my daughter was born and we realised she had DS, the first thing I wanted to do was hold her so close and tell the world to f*** off, because I knew it would be hostile to her.

My beautiful, special, pain in the ass, manipulative, wonderful, loving daughter is no threat to the world despite the fears of the ignorant.

The DS has never really been a problem - it's the reactions of the ignorant to the DS that has always been the problem.

This is an excellent post, BStrong. Thank you for sharing.

BStrong said...

Annie - Thank you for the blessings. I couldn't agree more; that's why I posted the letter on my blog instead of just sending it to the people who need to read it.

Kim - thank you for your kind words and for posting about "THE ISSUE" on your blog. Your blog gets quite a few more readers than mine, so hopefully between your and mind the letter will reach a few more eyeballs.

Thank you for sharing your words of wisdom.

It's only been 15 months?

Kate said...

Hi, I found your blog via Kim's.

Your post was wonderful, I do hope the people who feel it necessary to judge your family will read it and realise just how wrong they are. It's such a shame they let their own fears and prejudices spoil their relationship with you, still, I suppose it is their loss.

Congratulations for the imminent arrival of your new baby - having four children, now that is odd. Only joking, I have five.

BStrong said...

Kate - Welcome to the wonderful world of me. Thank you for your kind words. Five children sounds like a handfull, but I guess it depends on how old they are.

I'm trying to keep up with the comments, but at the same time also trying to keep them short. You'll find out why in my next post which will happen within the next couple of days.

Stella said...

Kim alerted me to your post. Very beautifully written letter.

Yes ignorance of other people and fear of anyone different are the biggest stumbling blocks for our children.

And I can relate to the reactions you are getting to the current pregnancy. We had our second son after we had Sarah and I know people presumed the pregnancy was an "accident". For the record, it wasn't.

I have commented on Kim's post and I would just like to repeat what I said there - Society could learn a lot from Sarah - lessons in love and acceptance as she accepts everyone no matter what their differences.

BStrong said...

Stella - I just find it quite odd at times. After Amanda was born we heard "I guess your done ha" all the time.

Even if she wasn't born with DS I feel that the question is quite personal.

Thanks for the visit.

jotcr2 said...

With a couple of exceptions, we have had a very positive response since Sheena was born from our friends, community and family. I think that when we are ready to extend out family, that will be a confronting time (for us anyway). It is a shame that others feel the need to butt their noses in just for the hell of it.

Anonymous said...

What a great letter! There's been so many times I've wanted to write a letter like that!

We also learned who are true friends were after we had Joey.

Good luck to you and your family with your upcoming new family member!

Anne said...

I guess we've been lucky with the community response to Nicky. We did have a deluge of dinners when he was born and then things did back off a bit. But, we were somewhat responsible since we went into hermit mode to deal with things. We may be somewhat spoiled because there are two older boys with DS in our neighborhood. And my daughter has 3 classmates with brothers with DS. So there is somewhat of a trail to follow.

The comments about "I couldn't handle it" just crack me up. Nicky was in many ways a much easier baby than the other two and still is pretty easy. He entertains himself well without getting into too much trouble. I'm sure he's saving it all up, but we'll see.

BStrong said...

Jotcr2 – It sounds as if you guys are doing wonderful with Sheena. Isn’t it amazing how a simple body part like the nose can finds its way to places it has no business being in?

Jessica – Feel free to copy the letter and put your name on it:) Yes, the arrival of Amanda showed us who our real friends were too.

Anne – I agree with the exceptions of Amanda’s therapies, she is much easier to take care of than our other two.

J said...

What an awesome letter. Kudos to you. I can't imagine how in this day and age people can be so ignorant!

Anonymous said...

As some getting her Master's in Special Education I try to educate those who do not know...It is said how some people are just ignorant and do not understand or try to educate themselves.

This should be shared with so many. I remember having Aviva (a preemie who spent 5 weeks in the NICU) and not getting the phone calls of Congrats as well. It is sad.

But I believe you will educate these people and let them see what a JOY Amanda is in your life.

BStrong said...

J – Thanks. There will always be ignorance. I think I just need to learn to deal with it.

Dori – I’m either going to educate them or beat them over the head with a baseball bat.

The whole hospital thing was disappointing because you wait 9 months for this moment and it’s spoiled by ignorance.

Dani, mom to Alyse said...

Great article, I have frequented your blog many times and have to agree that as time passes Ds becomes such a small thing in the day to day way we function as a family. It just has no impact on us for the most part.

It was, in my case, a very difficult time of my life as I came to understand that my daughter has Ds, I think that many of our friends and family just didn't know what to say (we had a prenatal Dx). I still remember the day that I got the news that our unborn child would have Ds, everyone knew that I would have definitive results that day, no one, not one single person called. They were so afraid...

Any way, glad it's passed.

(oh and psstt your daughter has 47 chromosomes, and triplet copy of the 21st not the way you have it listed in your blog) I mix things up all the time in the heat of passionate dialog!!

BStrong said...

Dani - Thanks for correcting me. I'm used to being wrong and corrected by women. I have made a note at the end of the post giving you the credit.


Anonymous said...

Can I simply give you applause?

What a beautiful letter, unfortunate that it was needed, but poignant and touching.

We were completely ignored by our neighbors when our daughter was born at 28 weeks and only acknowledged when we started taking her out in public. To this day they continue to ask "Is she going to be ok?".

BStrong said...

Shannon - I never turn down applause. I hope things have gotten better. There are those who live for other peoples supposed misery so they have something to talk about, and then there are those who are genuine. Sometimes it's hard to tell them a part.

Don't you wish you could pick your neighbors.

Stop by again.

Anonymous said...

I am pregnant for the first time and reading many "baby blogs" -- this moved me, since it's rare to see such a lovely expression of a father's love.

Anonymous said...

Thank you for informing the public on how to react! Its called being gracious. A mother is a mother is a mother. She needs support and Congratulations calls and cards. I thought we were more advanced than this. I hope this letter has informed your neighbors and I hope you rekindle some friendships! Your daughter is a delight!
A mom,
Shannon, Austin

Princess Morgan said...

I have been reading your blog for some time now. What a wonderful writer you are. What a lucky girl Amanda is to have such a loving father! Kudos to you!! More father's should read & learn. You could teach them a lot!

BStrong said...

Anon – Is it really rare? Why do you think that is?

Shannon – Couldn’t have said it any better. Thank you.

Princes – Firstly, I feel that I write on first grade level so your praise of my writing is much appreciated. Secondly, I don’t think of myself as unique when it comes to expressing a fathers love. Your not the first one to tell me that and it makes me wonder if it’s a good thing and if so why other fathers are different.

CoraAnne said...

I just want to thank you for what you said! There are so many people out there who understand what it's like to have a child with special needs. They understand that this isn't a "bad" thing it's just a little different from so called normal. There are also many people out there, who in their ignorance, don't understand this type of life and don't care to.

As a sib of a brother with DS I learned at the age of about 4 what DS was. To me though, Justin wasn't any different he was just my adorable little brother. It wasn't until I had friends over in grade school that I understood that people viewed him as different or disabled. When I realized that's how people were viewing him I set about to correct it. I would explain when people had questions, I would react like any mama bear when little kids would tease him. But I also learned that sometimes I underestimated people. As Justin grew up everyone in our community came to love him and he has quite a following both when he was in school and now. He was even the manager of the wrestling team for two years.

I guess what I'm trying to say is that I hear ya! I can see the good and the bad in people and I know what it's like to get frustrated with the "bad". I also just want to thank you for putting your thoughts out there so everyone can see them!

God Bless!

BStrong said...

Coraanne – Thank’s for visiting and sharing some of your insights. I felt that it was just something that needed to be said, something that people who have special needs in their lives are afraid to say.

I am often concerned about how my other kids will react when their friends start teasing, and I know they will, they’re kids. I hope they handle it well. My oldest is six and we have already had THE discussion with her. She does have some friends who have commented on her sister, but nothing cruel…yet. My oldest is very protective of her sister to a point where she doesn’t want to leave her side. I have to force her sometimes to go on a play date. Thankfully she went on one today and had a good time.

I hope you can stop by again and share some more of your experiences.

Anonymous said...

Very nice letter. However, I would like to disagree with you on a point.

(DISCLAIMER: I am not the parent, sibling, or even relative of anyone with downs. However, I am the friend of a few people as such, and I worked at HASC (I assume you're familiar with it) for a few years, mainly with high-functioning adults with downs.)
(DISCLAIMER #2: I am a member of the unmentioned community, and after reading your letter, I have two responses: (1) anyone who participated in the silent treatment and gossip should be shot through the head, and (2) you should know that despite the heresey that DID take place, there are just as many people who view you as simply another happy family, working hard at raising your children. You can take some solace in that.)

You write in your article, "my daughter isn't sick, nor is she to be pitied." While silent ostracism and behind-the-back gossip is absolutely horrendous and should never be tolerated, someone who expresses pity at your having a downs child should be met with a "thank you for your concern, but let me tell you what it's REALLY like" response. They are acting in what they think is an appropriate response. Whether it is or isn't is almost not relevant; they are trying to be nice, so I think it would be only fair to accept their statement and then tell them, "thanks, but in truth, we're absolutely tickled pink about our daughter, and we're so pleased to have her!" Chances are, if you respond like that, they will reply with the coveted "well, then, congratulations!"

BStrong said...

Anonymous – Thank you for visiting. I enjoyed reading your comments which brings up some very valid points. When Amanda was born we didn’t know how to respond to the silence of many of hour friends. I can proudly say that we are better at handling social situations that arise from having a child with downs now. Still, the ignorance and lack of compassion by some can be hurtful.

You’re right, for every person that gossips behind our back, there are those that see us as just another family. I guess it’s human nature to focus on the bad and not the good. I guess you can say we are a family still in training.

Thanks again for commenting.

RebeccaA said...

I enjoyed reading your letter - very honest. As the mom of a child with CHARGE Syndrome, I can relate on so many levels. Our son has touched so many lives simply by being alive. I know that I am a far better person because of him. This is not to say there aren't struggles and sadness, but the sweet times are so much more precious. Thanks for your blog.
Mom to Cameron and Nathan

Michelle Evans said...

My mother recently wrote an essay to compete with The subject was how has your local fire department contributed to your community? My brother, Mark, has down syndrome and is a volunteer with the local station. Mom wrote about how they have accepted Mark as one of their own - with the same dreams and motivations as their own. She talked about how this not only fulfilled Mark's dreams - but how it also makes Mark - and people like him more acceptable in the community. Recently, they got an email saying that currently they are running neck and neck for first place in the contest. There are ten more days. My father had called all excited to tell me how big this was getting - how special it was - they've now been on two local tv stations - and a third one is coming next week. He told me it's on youtube...and that the local ARC Chapter had sent it out via email to all of their members. It made me wonder if sending emails to organizations that help people with MR might be an avenue to get votes for the essay. I wouldn't ask except that the firehouse gets a dollar for every vote - and I can't imagine a better way to acknowledge and thank the wonderful men who saw the similarities they have with my brother instead of how he's different. Can you help? Can we get the message out? Please, feel free to contact me. The website is

Thank you so much for your time...and for all the work you do.


If you fear change - look that fear in the eyes - and let the adventure begin...

Archie said...

Great post! We had so many 'well intentioned' friends and family say "I'm sorry". Huh???
Anyway, great blog and thanks for putting this letter out there.

Three's A Company said...


I sympathize with your situation with regard to the unaccepting community.

True friends are hard to come by in times like these...
It is amazing what 'typical' people do to others who are Special in my opinion.. They avoid these special kids like a plaque.

Anyway, they can have a million of typical kids. But only you have a special angel to call your own.

Much love to your family and gorgeous kids! All the way from Singapore!


Beth said...

Good for you! You are absolutely right in everything you said. Your family is beautiful!

Tamara said...

Not quite sure how I ended up reading your blog this morning - bouncing from one to another - but very nice letter.

My son who has DS is almost 11, and I still remember the way I felt at our church at the time. It was slightly different, but it was the same in that there was this strange mixture of support with pity that just felt - icky - followed by incidents that could have been prevented if they'd just followed the advice in that one line of CSN&Y ... "Teach your children well ..." :-) Sad for them.

Prayers - I hope you've found new acceptance over time -

she said...

Your letter was very heartfelt, however, it is sad that people are so uneducated when it comes to the topic of DS. Other people are amazing, like my brother in law who said upon learning that Elizabeth had DS. Well, we will just pick her up, play with her and love her like all of the other children in our family. Others look away or ignore and you don't forget the people who ignore. Perhaps when my granddaughter was born with DS, I was a bit sad, but very quickly realized what an amazing child we have in our family. Our Elizabeth is as perfect as she can be. She is just a delight and I am constantly amazed by everything she does. Putting her little arm around my neck when I hug her is the sweetest thing in the world. Walking into a room and seeing her point to me and say "she" was one of the happiest days of my life. Seeing her perfectly trace the image of God with one tiny finger when she was less than one year old is something I will never forget. How sad that some people will never know this joy. Sorry to go on and on, but feelings just pour out of me when I talk about Elizabeth and I know a lot of people do not understand, but you do. I wish you and the new baby and the rest of your family the very best.

SiouxsieQ said...

Thank you for writing such a beautiful letter. We have a son with DS who is almost 2 1/2 and it is refreshing and encouraging to read what you've written from your heart.

Amy said...

Thank you for your letter. I was searching for a blog(s) about DS when I found yours. My sister just recently had her 3rd baby, 2nd with DS. She is 27 years old and because of severe bleeding after the birth, had to have an emergency hysterectomy. That was probably more info then you needed. I just want to try and find some support for her. I don't know what else to do. Her oldest, a boy is 4 1/2 and has DS. Her second, a girl, was 2 in May. Her 3rd, a girl, was born the 2nd of July, again has DS. She is on an emotional roller coaster right now. I will do what I can for her, but I would love to find her a support system of other parents who are in a similar situation. I don't even know if any of this makes sense...

Julana said...

You put into words what so many parents feel. Your children are fortunate to have you as parents.

Christine said...

I'm sorry to hear about the ignorance of some people in your community. Sounds like they need a little bit of a reality check. Our fourth is a child with Down Syndrome and our community is the opposite. They have embraced her like she is their own. I think that they realize like us that she is a gift from above.

Although we have experienced this type of ignorance from some professionals that we have dealt with over the years. The first one being the genetic counselor who was pushing abortion with our pregnancy. Another was a doctor of my nephew who told my sister in law that we should have an abortion because we will have a lifetime of agony with her. And yet another one was from the director of student services for the school district that I work for and the district that Ann Marie attends(she started early childhood four weeks ago when she turned three) Some comments that she made were: "You are going to have a lifetime of heartache, all of your hopes and dreams have vanished, and students at the elementary level are good with kids like Ann Marie but, when they get to high school they want nothing to do with them."

My comment to her was yes my heart does break on a daily basis because it is so full of love and joy. Our hopes and dreams did not die when she was born, they changed.

I firmly believe that having a child with down syndrome is what is going to make the world a better place to live.

Stephen Elliott said...


I came across your blog searching for writing online about Down Syndrome. I'm trying to get the word out about an incredible article posted on The Rumpus. Written by Rick Moody (The Ice Storm) about a band where the lead singer has Down Syndrome. It's an incredibly moving piece and I thought it might be a good fit for a mention on your site.

Also, your open letter is very eye opening.

Here's the link if you're interested, thanks.

Stephen Elliott

Patrick said...

Hi there. Just started following your blog. A very interesting one. Although I'm currently just 21, I thought I wanna learn more about life from people around the world.

Felt sorry for the way those people around you treat you and your family. Hopefully by now it would have died down. Wish you and your family well. And although it's been few years back, congrats to you and your wife. ^___^

Anonymous said...

First, I must tell you how beautiful Amanda is! She is breathtaking. I love the picture with her two little "piggies".

As a mother of a little girl with DS, this really hurts my heart. We've been pretty fortunate so far. I say fortunate, because our family has been willing to educate themselves and accept this as yet another gift from God; just in a package with an extra chromosome! However, while we were pregnant, I have family members who'd tell us that they were praying Mariah would be okay. They meant, they were praying that she didn't have DS. Well, that's now how God works. My family knows that now. THANK YOU for writing your letter. However small your community is, they will likely spread the word. Even if to but one person, you've won your battle. Congrats.

Nicki, mother of Mariah.

Noah Dad said...

Wow. What a power letter. My wife and I experienced many of the same things you did when our son was born. Our obgyn offered my wife anti-depressants the first time she visited us after Noah was born. Crazy!

I'd enjoy connecting with you. The website for our son is - I'm posting a video a day on there, so it should be fun to watch! I hope it brings hope and encouragement to others! Your daughter is beautiful!