Choked Once, but not Twice

I am going to start off by saying that my kid is the coolest kid I could have ever gotten. I am THANKFUL for how he has opened my eyes onto a world I never knew existed and how he has taught us to appreciate life. Raising a kid with a special need is really not so different as you may [or may not] think. He eat, sleeps, plays, throws tantrums, gets mad, screams as all other kids his age. I do somehow still feel a little bit different at times, even though I most often forget about his [dis]ability.

This week was bad.

Not because of the day care, not because of Bookie being in India, not because I had to fix all those things alone. Nope because of getting disgustingly disappointed. Not once, but twice. If you know me well enough, you may also know a couple of stories from the past, similar and how I reacted to those.

Also, if you are someone I know outside of cyberspace too, you probably know that I am not very fond about talking about what I blog about. If I want to talk about it, I for sure bring it up, don’t you worry, but if not, let’s just leave it at that. That is one of the reasons I have a blog.

I also believe in free abortion. I understand that a lot of people abort babies with Down Syndrome, because of fear, lack of knowledge, false prejudices etc. However, I did think in my naive own mind, that people faced with that decision was neither people who had met my son, nor people that I knew, and even less people fitting both categories and who would actually would TELL ME about it. 

First up I had to make a call to someone who we know (as a family) fairly well. She has on numerous times spent time with us, Vincent included. I called her and asked what I needed to know. She then told me of her fears of having a baby with Down Syndrome. She is pregnant now. She also continued to tell me she had done the neck measuring test and the combined blood test, and was now very nervous of it all. That is Ok, I understand this part…At first I tried to just listen to hear and try to understand what she was saying. Don’t get me wrong, I do understand that almost everyone who is pregnant hopes for a baby without any bonus chromosomes or some type of diagnose, I get that. But when you cross the line to general, and mostly wrong prejudices against people with DS, you loose my confidence. So telling me how people with DS are this and that, you will most likely piss me off. And that was just what happened. After hearing a few ‘fears’ I was not willing/able to listen more. This person also knows a lot of DS people, which makes it suck even more.

I found myself kind of telling her not to worry, everything was going to be Ok etc. I did however tell her that she had to also consider what she would do with a test result that came back not optimal. And I also told her she would most likely be some where around week 22, know if it was a boy or a girl, and by then have felt the baby move around, and have a fairly big tummy. But as to stand up more for Vincent than that I could not. I just choked and left the conversation with a gotta’ go.

On my way home from work that night I called Bookie. I told him what had happened, and he kept asking who said it. I told him like three times who it was, but he just did not get it, I mean we know her well, Vince probably knows her best of all of us???  Anyways, I came home to my wonderful kid fast a sleep in his little space men PJ and a teddy under the arm.

The next morning he woke up in a wonderful mood, full of laughs and this little fake cough he does which always make him crack up in the biggest goof laugh. He is SO cute doing it. I left him an hour or so later with the babysitter and headed for strike number two.

Based on this article from yesterday’s Svd, I ended up in yet another DS discussion. This time with a person who was telling me downright wrong things like people with DS suffer, they don’t have a fun life, and they are a burden to their families, which would make her have an abortion if she found out her kid had DS. This time I did NOT choke. I yelled back and signed off (msn). I was/am pissed beyond belief. This person is also someone who kind of knows me and has met my kid. I am hurt, sick to my stomach but mostly I am sad. Sad that people who actually KNOW us have not picked up on the fact that Vince is just a little kid, a real human being, who is NOT sick, NOT suffering and quite certainly NEITHER a burden NOR an unhappy kid.

Prejudices will always exist in society, but it sucks to know that some people in our bubble of life, even though they see my kid, still cannot see past these prejudices. It saddens me to know I have maybe hundreds of these fights to fight. Maybe this is why it is different to raise a child with a special need? 

31 Responses

  1. Mycket bra skrivet!

  2. After reading this (as I do almost everyday) I wanted to add a Texas comment. Winter now 7 months has 2 teeth and says mamma, wakes up with a smile everyday and loves life. I love our “bubble of life” and wouldnt trade it for the world. Keep fighting the good fight and from an outsiders view, Vince is AWESOME and is going to change the world. Truely a Prince.

  3. I believe you are right…the hardest job of raising a child with DS is educating the world around us. It is ashame that most people are so self involved that they miss the obvious. All you can do is keep showing them a boy who is happy and loved and hopefully they will eventually catch on. Very very very sad.

  4. Sorry you’ve had to go through this, and will continue to have to endure such people and comments.

    Because my son is only three months old I am able to “hide” from the world right now. I’m not sure how I will handle insensitive or downright rude comments from others. These days it’s all the sticky-sweet comments that make my son out to be some sort of angelic being. Ugh!

    I wrote a blog post called HREF=”http://narrowridge.blogspot.com/2007/11/why-world-hates-my-son.html”>”Why the World Hates my Son” which kind of touches on these same issues.

    I hope the rest of the week is better. Austria in the winter… what do you get, maybe five hours of sunlight a day? Kind of like here in Minnesota. Another Ugh. 🙂

  5. Ja du vännen vad ska man säga? Vincent har öppnat även mina ögon inför en värld som jag tidigare inte kände till. Att vissa människor fortfarande inte fattar har absolut inget med Vincent att göra. Tro inte det. För såna människor spelar det ingen roll hur många perfekta små Vincentar man skulle presentera dem för. Vill man inte förstå, vill man inte vara beredd för att bli av med sina fördomar, vill man inte se längre än sin egen näsa så gör man heller inte det. Puss

  6. I’m so sorry you’ve had to very similar experiences with people who have gotten to know your family, especially Vince. I’m sorry they can’t see past their own fears and misconceptions. I don’t know how I would react in that situation. It is one of my fears that I find out someone I know has tx because of Ds (it hasn’t happened, I just worry about it happening and how I’ll react). Hugs to you!

  7. Christina – I’m sooo sorry that you had to have these experiences 😦

    I think you reacted how we all react the first time we’re faced with people we know having these kinds of reactions. I know I have been stunned on several occasions, and a good online friend actually had one of her best friends tx for DS, even after knowing my friend and her little boy (who are wonderful and amazing!)

    You did great in standing up for Vince and I hope and pray that your friends will come around, but even know, I have neices who are having babies who totally freak out over every little marker on their US and undergo every test offered to them – even knowing and loving Brady. It stings a bit.

    Hugs and cheers for your cute, amazing, wonderful boy – who WILL change their perceptions as he grows and they come to recognize what an inspiration and miracle he is!

  8. guten tag,
    i am so proud of you standing up for your son..i am a mother of a child with many health issues and i get the same shit all the time from my friends and strangers. I was told many times that i should leave my son at the hospital when he was younger, he will be a living vegtable all his live…guess what…he is now 25 years old with a high school diploma and works a full time job as assistant to a merchandiser in our watch company…he works hard every day and makes people smile…he is very special to many many people…we are so proud of him…so just remember next time someone “pisses” you of with a stupid comment..remember ….
    answer them back just like you did. …the world needs to learn one person at the time….
    keep up the good work with your little prince…it will pay off…
    schoenen tag
    irene

  9. Kan bara hålla med om vad alla de andra skrivit. Är människorna som du skriver om så fruktansvärt trångsynta så kan man ju bara tycka synd om dom. Folk som dom kommer väl tyvärr alltid att finnas, men låt inte dom göra dig arg och ledsen. Tänk istället på alla andra vars liv du och Vincent har förändrat och förgyllt!

  10. Oh…what an awful few days. I’m so sorry. People can be so inconsiderate and downright rude.

    hugs

  11. Hi! I’ve been reading your blog since my little boy Braeden was born with Down Syndrome. I’ve been meaning to comment for awhile now and felt like I had to today. I just want you to know that little Vince has been my inspiration since I discovered your blog 7 months ago. When I saw his sweet face, and read about his daily adventures it kept me hopeful and I began to realize that my Braeden would have the same adventures!! My daughter who is 13 and I would log on often to see what Prince Vince was up to and he always brought huge smiles to our faces!! I’ve shared your blog with many friends and we all agree how nice it is to stop by when we need a smile!!! As I read and time has gone by you have also become my inspiration!! The love you have for your son just pours out of you, your dedication, support, happiness, and love made me realize how wonderful it is to have my special boy and know that there is nothing I wouldn’t do for him. He, just like his brother and sister, are the greatest gifts in my life!!
    I just wanted you to know, that you, through your blog have been supporting me, giving me inspiration, hope and guidance! I know that you are an incredible voice for our amazing little guys and I thank you from the bottom of my heart!!!

  12. Oh, this is so unbelievable. And so discouraging. So sorry you are going through it…I’m sure we’ll all have to face it someday, and coming from people who know your child makes it hurt that much more.

  13. Oh Christina. What a let-down. It is a really awful feeling when people you love and respect disappoint you, to disappoint you like this is just astonishing. It IS a burden we have to bear, educating the world.

    You are doing a great job of it and you will only get better.

  14. men herregud vad är detta för människor!!! jag förstod inte mkt av DS innan Vince fanns, men med Lowa i magen var en ev DS-diagnos det minsta av mina bekymmer. det sägs att vi alla är här av en anledning, du har nog hittat din min älskling. puss till er från oss.

  15. Dear Christina,

    I can really understand that you have very much been disappointed being confronted with such an insensitive attitude. I think you and Burkhard are a doing a great job in handling Vincent’s extra chromosome; since you two manage the situation very well (this is at least my impression) people might forget that you sometimes feel insecure and worried too. As far as I do realize your blog as kind of an communication tool expressing hopes, joys and worries I do see your blog as an offer for getting into contact and understanding better how normal life works having a child with special needs.

    As I am pregnant too I can understand the emotional situation of hoping that your child is healthy. However, I am aware that you can’ t control eyerything what will happen in life and this is even more real for a little human being who is discovering how to live life within the “outside” world.

    All the best and
    bon courage
    Anna

  16. Unglaublich! Und traurig, dass es solche Menschen gibt. It is a shame. Lass Dich drücken!

  17. Säger inget, för det finns inga rumsrena ord att använda. :0(

  18. Hi ~ Being that I’ve never left a comment before and am such an amature at this I somehow have my info stuck on your Leave A Comment section ~ So Sorry!
    Sarah

  19. Jag blir helt förbluffad. Finns det såna trångsynta människor? Dessa har då verkligen inte hjärtat på det rätta stället och är absolut inget som du ska bry dig om. Åsikter som bottnar i total okunskap. Jag blir ARG så in i norden. Puss på er och ha en bra helg nu trots knäppisarna.

  20. Last year in October I got into a long, long debate with a fellow blogger about this whole issue. It spanned 2 blog posts and then went on to 24 emails which became increasingly hostile until I eventually severed contact with him. It was not just that he disagreed, but that he was so damn insensitive to keep trying to ram his viewpoint down my throat that really upset me.

    Sometimes it’s just easier to tell people to **** off.

  21. I think it is reflection on what the person feels they can deal with personally. People have a lot of fears of what they can cope with. Your friend has seen the kind of mother you are, and I bet she feels she could never do as good a job as you. Not everyone is suited to be a good parent to a child, let alone one with any challenges.

    There is a 10 year old girl with DS in our neighborhood. Her mother hires a nanny to supervise the girl, even though the mother does not work. The mother basically wants the girl to stay home with a caregiver, out of sight, while the mother takes the other children out into the world for sports and parties and errands. When we see this family around town, the 10 year old is never with them, even though she is a very pleasant girl. It is as if she doesn’t exist. When she is not in school, she is isolated at home with a paid caretaker. The family is wealthy and the mother is very concerned about her appearance, driving a fancy car, wearing the latest style, etc. It looks like she is ashamed of her daughter, and ashamed to be seen with her. One time I saw the girl wandering in the street. I walked her back to her house, which was about 10 minutes away. It was a weekend when the nanny wasn’t working. The mother didn’t even know the daughter was missing, and didn’t appear at all concerned that she’d been wandering near the busy road. The mother was so cold toward her daughter it gave me chills.

    Sometimes I wish those who really don’t want to parent a special child would be honest with themselves and release the child to an adoptive family that would cherish the child, celebrate their existence by sharing them with the world, and advocate for them. People with disabilities should not be hidden away.

    As for the insensitive comments you get, just remember that it comes from ignorance and is more a reflection on how that person sees themselves in that situation. They couldn’t (wouldn’t) be a good parent to a child with special needs.

    Keep your chin up and keep bringing Vince out into the world, and gradually one mind after another will change. But just remember, some never will change, and there’s nothing you can do about it.

  22. I have read your blog often and appreciate this latest post. Your honesty in presenting a conversation that we are faced with on occasion, is wonderful. You are an amazing mom, and as a parent of a child that also has DS I applaud you on not choking twice 🙂

    My son will be a year old in December. He is one of my four children. I wanted him just as much as I have wanted any of my kids.

    I can say that being a parent is a selfish act, we GET so much more from our children than we ever can GIVE them. In that context, I believe many people act selfishly in aborting children that have DS. They don’t want their personal lives to change .

    We knew Tommy had DS. We informed ourselves through research (including blogs) of how children with DS can lead wonderfully rich lives. We read how parents of children with DS lead healthy, productive lives and wouldn’t change a thing about their child.

    Tommy is perfect. And I feel sorry for parents making choices that can’t see how perfect he is. Their loss. My absolute gain.

    Much happiness in Bellingham, WA!

  23. I’m speechlessly amazed. Being pretty new to motherhood and all the intense feelings I recently felt like I wanted to hurt [and I mean HURT!] a stranger and that was only a silly comment [written by a dumbass] about my baby on a blog. I can’t imagine hearing something like that from people you know.

    The only thing to say in defence to the mom-to-be is that the hormones sometimes makes you beyond weird when prenant. Hope you can straighten things out with her and she realizes the stupidity in what she said.

    Best wishes to you and your little cutiepie!

  24. Ja du, efter att ha läst din blogg är jag fullständigt speachless; men å andra sidan så är jag ofta det, folks och då I SYNNERHET ens nära och kära slänger ibland ur sig saker som får en att undra.
    Ignorans? Självupptagenhet? Ja säkert lite av varje, samt ett behov av att bolla idéer utan att tänka efter ordentligt vilket sätt eller med vem.
    Förstår mer än väl att du känner dig sårad/stött/förbannad. Jag hade haft svårt att smälta ngt liknande.

    Som sagt, ha en underbar helg, förhoppningsvis kan den bara bli bättre nu!

  25. Kära prinsmamma! Detta är nog fanimig ditt starkaste inlägg – så fullt av kärlek och ilska att det lyser. Lyckliga Vince som har dig som mamma! Jag sneglade på debatten på SvD och blev bara så beklämd över denna okunskap och dessa fördomar att jag faktiskt inte orkade mer än snegla. Starka du som stod upp.

    Det absolut svåraste med att ha fått ett masarinbarn är andras fördomar. Och jag förstår din sorg över att människor som står dig nära inte lyckats öppna sina ögon eller hjärtan. För visst är det så att man är extra sårbar för de som man själv har i sin närhet.

    En extra stor kram till dig och prinsen. Och håll er undan från energitjuvarna…

  26. Makes me just mad reading this …. Yep, unfortunately, once in a while, we meet people like this, sometimes even “friends” … it so much hurts. Then I think of a saying my boss once said: There are people out there, whose soil is so unfertile, so it’s just a waste of time to try to give them seeds … there’ll grow nothing. Then I think if their attitude is so poor – it always comes back to them.
    Vincent is the cutest boy in the whole wide world, and you girl just keep up the good work!!!

  27. Yes. I think. It’s not our children that challenge us, they are loving and kind and wonderful. It’s the world. Doesn’t that just stink?

  28. Hej!
    Jag blir också förbannad. Ditt inlägg får mig att tänka, vad vet jag om mina vänner egentligen? De flesta är i skaffa-barn-åldern, i stort sett alla har träffat Elvira. Jag tror tyvärr att många tänker (när det väl kommer till kritan), DS verkar helt ok, men jag skulle inte vilja ha det i min familj. Usch! Hemsk tanke.

    Det är de som får leva med sina val resten av livet. Stå på sidan och se på hur bra det går för Vince och Elvira och undra, undrar hur det hade varit om…

    Kram till familjen

  29. I’m late reading this post, but I felt the need to comment anyway. I have to say, I don’t know anybody personally that has DS…and I came across your blog by chance (I don’t even remember how I came across it now?) and I started reading because Vincent is a cute kid and around Hailey’s age. Him having DS isn’t even a factor, he’s just a cute kid and I have loved following his progress after all this time just like I follow the other kids on the other blogs I read. It’s such a shame that people still have such a negative view on things. When I was pregnant I just wanted my baby to be healthy. I didn’t do any of the tests they offered, just the ultrasound…because it wouldn’t have made a difference either way…as long as Hailey was healthy, that’s all that mattered. If she came out with DS I would have had a lot of learning to do, as I didn’t know much about it(til I started reading your blog) but I wouldn’t have thought it was the end of the world, I would have thought I had a beautiful little girl just the same as if she didn’t have DS. I have seen plenty of DS people in our society that are wonderful people…they are bright, caring people that have families and friends and hobbies and wonderful normal lives, getting married, having jobs… I also know people that have friends with DS kids, and they are more dependent on the parents, still live with them well into adulthood but what’s the problem in that? I guess everyone is different, and some can handle more than others, but I don’t see the big horrific deal with having DS that some are making it out to be. It’s just such a shame…and I cannot believe that people would voice these opinions to you, how incredibly rude…I’m so sorry you had to go through that. I hope all this has made sense…

  30. I have to remind myself that these are people not raised to have empathy or respect. And even though I know these comments come from truly ignorant/selfish people, it still hurts. Because I just want everyone else to ‘get it.’ I get it…why can’t they? I agree with Jennifer- it’s not our kids so much as the rest of the world.

  31. […] simply the greatest. At least in our lives. Then every once in a while, you run into the occasional knucklehead. Last night I had a great conversation with one of the people who really hurt me herewith what she […]

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