Tuesday, January 10, 2012

Schooled

Today is an education lesson.

I wrote a blog about the Blessings of Down Syndrome in June.  If you don't want to read it - the just of it is that Down Syndrome has blessed us beyond measure & I am concerned about a new blood test that can now diagnosis DS at 12 weeks prenatally & much more accurately.  The current abortion rate is 90%, the Down Syndrome community fears that this number will be much higher than 90% because of this blood test.  That's right Ollie Faith is the 10% that survived Roe Vs. Wade because she has Down Syndrome.  I believe a large number of these babies aborted were planned, but because lack of education parents are scared and they are led into the mindset that abortion is best because they aren't handed the proper education tools.  I also do have sympathy for these parents because I know that single decision will be with them the rest of their lives.  My main goal of this blog is educating people about Down Syndrome - because let's face it - all of society think they KNOW so much about Down Syndrome and frankly they don't.  They know how to spot a person in a crowd, but to know what that means to their life, they are pretty uneducated.

OK now that I summed it up here is a blog comment I recently received and I want to address it.

I'm sorry Becky - I know you feel like you have a valid opinion because you are pediatric nurse, but the fact is you are not a Mom raising a child with DS.  I am very doubtful that you have truly talked openly with these parents to know what they are feeling.  I believe you have assumptions of what they are feeling, but you know the saying to assume makes an ass out of you.  I'm not trying to be hateful, but I do feel like you need educated on several points.

"I enjoyed reading your blog and I am currently 5 months pregnant and will be 35 at the end of my pregnancy. I am not trying to get anyone upset but I just want to put another opinion out there. I am a Pediatric nurse and also would not end a pregancy based on just down syndrome but I think as a nurse you need to not judge those that do. I care for lots of families with Down Syndrome children and there are several levels of functioning and illness that also incorperate DS. The risk for lifelong cardiac surgeries and hospitalizations is a possibility and the risk of leukemias can also be higher. Some families do make the decision out of fear, but I think for some families it is right, I have seen so many strong marriages devistated by the trials of having children with high medical needs. When you see that little baby of course you want to do everything to save that child and give them a chance at life but doctors don't always share the other side of what can happen if your child does survive with extrodinary measure taken after birth. Some families live at our hospital for years and then have to come to terms with the death of that child later and I know "One more day" is a great song but I often wonder if their pain would have been lessened if extrodinary measure had not been taken and thier family might not have been ripped apart. One person's story of a child with DS is never the same as the next. Yes the DS children that are heathy and high funtioning are a wonderful gift and so sweet. But the decision once the news if given that your child has DS should never be taken lightly, parents should think do they have a good support system, sadly do they have good heathcare, or jobs that support them not always being available, can one parent not work, if they have other children who will care for them if they have a child with high medical needs (mom is at the hosptial and dad has to work), are you willing to focus your life on that child and not on your spouse or other children, because physically you can not do it all! We often have children who are in the hospital for months and their families just go on without them care for their siblings and visit once a week, even go on to have more children. Thank God for these children there are nurses to love them. These families are the ones that should have thought harder about the decision to birth that child. There are people that foster DS children specifically and they are in and out of the doctor and hospital all the time, it is a commitment. Last week this foster mom, said "What's vacation" when I told her about my holiday trip. You need to put it into perspective. I am glad that Ollie is heathy and doing great, what a blessing, may she continue to strenghten your family as you endure regular challenges of raising a child with DS."

Point 1:  When you have a prenatal diagnosis at 20 weeks pregnant, like I did, no doctor can view and ultrasound and say "He or She will be high or low functioning."  Not possible.  Nor can they truly tell you the level of health your child with Down Syndrome will have and if your child has an issue they still don't have a clue how many surgeries you need.  True Ollie is healthy now, but she was in heart failure for 4 months pre-Open Heart Surgery.  Handing her off was the hardest thing I have ever done, but it was worth it.  If we would have lost her due to surgery I'd still thank God for her because she blessed us so much in 4 months.  Now, just because her heart is fixed don't assume she's as healthy as a horse.  We have had 3 ER trips this fall with respiratory issues.  But she is still WORTH it.  And my other two kids have had ER trips & days of me staying home too - that's part of parenting.

Point 2:  There is NO guarantee with any child that they will be 100% healthy.  I know typical children that had closed and open heart surgery, that had strokes in utero that have impacted them forever, that were in terrible car accidents, that have cancer.  The fact remains that ANY baby may have a serious medical condition that could be the same as you listed & cause medical stays, and if you worry about this - you shouldn't ever have children period.

Point 3:  It's been researched and families raising a child with DS have a LOWER divorce rate than typical marriages.  Boom - that's right I said it.  Perhaps we know something that people with typical kids do not.  Probably because we have learned to slow down and appreciate much more in life.  I can't explain how Ollie has changed my marriage because shit - that's right I cussed - it's been a hard year - but I am closer to my husband than ever before because we needed each other so much more.  This past year has made my marriage stronger.

Point 4:  Did you know on average in the US the wait to adopt a child with DS is 3 years?  Yes that's right, 3 stinking years for babies that are aborted 90% of the time.  Why is that?  Why do so many families wait to adopt these kids?  It's because we know the SECRET.  God let us in on HIS plan.  Kiddos that have Down Syndrome are special, but not because they are special needs, because they enhance our life so much more!  Why aren't more people doing adoption instead of abortion, well it's harder.  It's a hell of a lot harder to hand that baby over to someone once you see it and there are emotions tied to that, so abortion seems easier.

Point 5:  How are we any better than Hitler if we abort children because we "fear" the stuff we don't even know about them?  Should we line up all the chronically ill children and gas them because they are destroying "strong" marriages and families?  No, absolutely not.  That thought is absolutely disgusting right?  Well, how is aborting 90% of children with DS any different?  It's not, it's just not.  The only difference is we are killing them as babies before they take their first breath.

The fact is, and I believe this whole heartily, God is in control.  It is up to HIM, not us to decide who is worth life.

I still stand by my decision to keep Ollie Faith.  It was right, and I was rewarded big time with that baby girl.  I have NO idea what her level of functionality will be down the road.  And God forbid she develop leukemia (which yes I'm aware her odds are much much higher), but you better believe my husband & I would make it work, and we wouldn't regret her one itsy bitsy bit.


39 comments:

  1. I love you Annie! Thank you for addressing this and being a real mom. I hope this knock some ignorance out of her.

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  2. I knew the DS choir would be behind me on this one. I feel like yelling out "Can I get a hell yeah" and you'd all cheer back "Amen"

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  3. oh and the foster mom who said "what's vacation?" needs to find another way to make money. She obviously needs to do something else!

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  4. Ditto what Janie said, both comments. I'm just...riled up...by the fact that you even had to address your families choices. That little girl was created from love and put here for a reason. The lives she's touched already are countless. :)

    xo

    C.A.

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  5. I'm glad you addressed her comment. It makes me sad that she believes what she wrote was helpful. She has no idea. I work at an OB-Gyn and 2 of our nurse practitioners have daughters with DS and they believe their children are worth any sacrifice or challenge that may arise. These babies aren't a liability, they are a blessing.

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  6. HELL YA!!! I knew you had it in you! This will be one of my all time favorite blogs ever. I may even print it out and read it everyday!!

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  7. Great post Annie!

    I HATE that people blame divorces, stress, money problems and all that crap on having a child with Special Needs...Because ALL that stuff exists in families who do NOT have a child with Special Needs. I also think those are very selfish reasons to go ahead an end a life...What happens when their "perfect" child ends up in an accident and requires extra care?? Do we just off that kid as well because it would be to much work?!

    The one line that bothers me the most is "they are the families who should have thought harder about the decision to birth that child"

    And THAT from a NURSE!!!! I would hate for my child to be born at a Hospital where the Nurses are looking down on me for giving my child life and looking at my baby like he doesn't have a right to it. I'm glad MY son didn't have Nurses like that!

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  8. I found myself shaking my head as I read this post. Oy. The thing that gets me is that she, as a pediatric nurse, sees a larger percentage of those that *are* medically fragile. But when you think about the fact that 1 in 690 babies BORN (those that escaped termination) has Down syndrome, what percentage of *those* would you guess were medically fragile? Or any *more* medically fragile than *any* other typical child? Just because she sees sick children because that's her *job* doesn't make her an expert in the whole world of Down syndrome and the amazingly beautiful impact that extra chromosome makes.

    Well responded-to, Annie. I don't condemn your commenter. I just hope your response educates her a little bit more and perhaps allows her eyes to open to the bigger picture.

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  9. Hallelujah girl! You know now and always I have your back (and your front if needed too).
    And all God's people said AMEN!!!

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  10. Just another reason I cherish our friendship...Values and staying true to who you are. Do you remember the "thrown nut" at that house party. I love that your still throwing them!

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  11. I want to kiss you right now. This was PERFECT!! Emily is worth any cost and my other children are in no way neglected.

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  12. AMEN!!!!!
    I can share this on our blog?! I wish more people were educated on DS! Its not a "life sentience!

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  13. All right, I am the Mama of not one, but TWO children with special needs. The short of the story is we adopted our first daughter knowing the prenatal care wasn't the best and she was considered 'high risk.' At eight months old we sat shocked at the diagnoses of a genetic disorder (not inherited, a chromosomal mutation) that NOBODY knew about, nor could they have before she was born (thank God, I can't imagine life without her). I don't think for one second it was a mistake that she ended up with us. The gist of the disorder is that her body grows tumors on nerves unchecked. They are benign, but since you can get them in your brain, spine, and anywhere else there are nerves (everywhere) she could grow up to be fine and have only a few tumors, or she could die in a year. She has had three surgeries and six MRI's under anasthesia.
    She is one of the coolest three year olds I know. She started reading at two, and is currently dancing with her arms lifted to the heavens singing about Jesus. Has it been hard, absolutely. Has it been tense at times, you bet. Would I regret it if she died tomorrow, not for ONE SINGLE SECOND.
    After her (we joke, but really) we weren't sure what we would do with a typical child. ;) Her abnormal chromosomes seemed to make her so cool so we decided that we would go for a kiddo with some more abnormal chromosomes. We are only two months into this journey, with one heart surgery, and another hospital stay under our belt, and another heart surgery looming, I am SO glad her parents chose life. Once again, I don't expect it to be easy. But in life, there are no gaurantees. And I find that the things that are hard, are the things that shape us to be better people.
    Our lessons really have been to live each moment to it's fullest because you never know what tomorrow may bring. We sing in the store, we jump on our beds, and we laugh. A LOT! Whenever someone says that you can't judge it makes me sad to know that they don't understand that having a healthy and typical child at birth doesn't gaurantee them anything. They have a false sense of security in their lives, and will be much more devestated if something bad happens.
    *Sigh* I will end my rant, but seriously, if you are reading this, and are the nurse who made the comment know, we are not a rich family. We don't have great insurance (matter of fact both the girls have medicaid). What we do have is the ability to love and care for the children God has blessed us with. Oh, and the knowledge that at the end of a hard day, or week, or month, that watching Scrubs and drinking a beer with your spouse can help you prepare for the next hard day, week, and month.

    Andrea

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  14. feel free to share Mrs. B! And right Mom, I have a home business I could sure as heck work in a hospital too. And yes Andrea we gave up half our income for me to stay home, totally worth giving up eating out and date nights out. We now date at home when the kids are in bed...every night at 8 pm :)

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  15. Bravo! I have been blessed with two healthy chilren who are now young adults. Both had asthma and one was in and out of the hospital constantly as a young child. My mom once asked me how I did it....you just do. You love them and you do what is necessary. You hit the nail on the head.....it's God's plan...His way, not ours....we can do ALL things through Him!

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  16. So well said Annie! I'd love to share this on my blog if you don't mind!

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  17. Great response!! I hope the commenter actually takes the time to read your points!

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  18. We need more Annie's and Jade's in this world. I had tears in my eyes as I read your response, you know what unconditional love is all about. God Bless you and your family.....:-)Hugs

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  19. Wonderful post Annie! It's true that we have all been let in on a great secret. I can't imagine life w/out my girl. She has changed me for the better in so many ways.

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  20. wow annie. you are one strong mama. so are all you other wonderful absolutely blessed mothers of DS children. I agree with you 100% percent Annie. I so desparately want to adopt a special needs child but sadly, the world revolves around money and it just isnt financially feasible for us. (yet!) This is going to be an extremely hard comment for me to write because it is completely honest and very emotional for me. I WISH so very hard that all families could be so incredibly loving, strong, faitful to God and blessed as yours but sadly, I believe, that today your "type"(for lack of a better word) of family is rare. I must admit, that even though I only know you and your family through blog posts and facebook comments that i truly envy what you have. You have an INCREDIBLE family. The kind of family that I dreamt about as a child. Granted, I do not "know" you, but from what i can tell, you guys are the epitomy of what a family should be and I long for the amazing support group you have. Now with that said, I can easily believe that the abortion rate of DS babies is 90%. It is so sad to think that number is so high and that we are on the precipice of mass genocide. But, unfortunately 90% of families today are the exact opposite of what they should be. Family is a very loose term and is flippantly used. Families just dont support eachother as they should. Selfishness is at an all time high and everyone is afraid of being alone, so i can easily see as to why someone would be "scared" of a DS child. One comment that Becky made just sticks out in my mind: "We often have children who are in the hospital for months...and their families..visit once a week." WOW! Really? that is (im crying) one of the saddest things ive read in a long time. It is in no way that childs fault that he was given to such a horrible family. Some people just shouldnt have children at all. I in no way at all support abortion of any child but, I cant help but wonder, is being in a hospital, or in an orphanage, or, as I read in another blog, an insane asylum, really better than being in God's wonderful loving arms? Im not going to pretend to even know the first thing about being a mother of a DS child or having to be faced with that decision of keep, adoption, or abortion but I do know that most families are not like yours, or the like the ones who follow this blog and also have a wonderful DS child. the rate is so high because God knows that it takes a very very special family to raise such a very special person. If I offended ANYONE i am truly truly sorry for that was not my intention at all.

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  21. I'm not offended at all Samantha - I do have a great family :) We have dysfunction of course too, but we just keep that to ourselves ;) And you are right that for some in God's arm is a better place to be and that family and morals are not at all where they should be anymore. I'm thankful for my family & my education so that I know more and can do better for Ollie. I'm her best advocate and will always do my best for her and my other kids as well :) And yes sadly adoption revolves around money not caring nurturing parents...wish that were changed too!

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  22. Hey Pediatric Nurse, Ollie Faith has changed my life. She has given me a whole new perspective on down syndrome. I feared what life would be like with a niece with DS, turns out, I feared for nothing. She is AWESOME! She turns my bad moods into great ones instantly. She lights up my day with her smile. She teaches me the blessings of God everyday! Ollie Faith is going to do great things in her life. She has taught 1000s what it means to pray and pray hard, and to see that God never fails. Rethink your comment next time.

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  23. Samantha,
    I have adopted twice (one kiddo with Ds). My first adoption was 2800 and the second was 7000. Both infatns, neither in foster care...I promise it's possible to adopt without it costing large amounts of money!!! Don't let money hinder you (there are tons of grants, and people who want to donate as well).
    Andrea

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  24. "Thank God for these children there are nurses to love them?"

    Sweetheart, I think you keep your definition of "love" in the same hidden drawer where you left your "rules of standard punctuation".

    Good Lord.

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  25. I don't judge people that terminate once they get the diagnosis, not at all...
    I know why they do it, and I was almost one of those people...the information that is given is almost always from the 1980's and is really very scary...most people terminate without doing their research and then do research and end up in therapy for the guilt...
    I feel badly for those women, but never would I judge them

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  26. Wow! First of all I am willing to place a bet that the "pediatric nurse" is not a true Christian! One who puts his faith in God would trust his guidence and know that he would never give you anything you can't handle. My son is 30 years old now. Fortunatly he has been healthy all his life. However I didn't know that he would be before he was born. I would have missed out on years of so much love, life lessons and his great sense of humor. This nurse should find a different occupation.

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  27. Thank you Annie. My personal fav is "Boom- that's right I said it!". I love your passion. I agree that Becky likely sees the sickest of the sick and is basing her points on this fact, and herein lies the problem with the medical community's ability to educate those getting a new diagnosis of DS. Hopefully, as the community who knows best the effects, the joys and the challenges of raising a child with DS, we can find ways to help educate the medical community more.

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  28. Annie, good for you for saying straight. I had no idea the abortion rate is 90% for a DS diagnosis. So glad you chose to keep your angel of perfection. A pediatric nurse sees many things we can only imagine. The wonderful people who work in the field of medicine often must turn off their "emotions switch". Sometimes they must in order to do their job well and be able to live their lives. I don't think she meant it the way it sounded, but perhaps her experiences influenced her comments to you but I do wish she had kept it brief and less negative.

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  29. Didn't finish. Meant to include that everyone must live with their decisions. It's a very difficult topic and I guess what I am saying is that I can understand her point of view- right or wrong. AND I understand and support your stand on this issue. {{to all of you}} ann

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  30. I read the first sentence and I know that I am going to kick myself in the ass for writing this too soon but screw it... First Annie, when have you judged anyone for the choices that they make??? ... Grrrr... now, ill continue reading.., ill be back.

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  31. Second... our children ARE. NOT. DOWN. SYNDROME!!! They are children! Who happen to HAVE Down syndrome. Medical professionals aren't always too professional, are they.

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  32. I also sat back and thought... What if I had known during pregnancy that my daughter would eventually experience severe mental health issues. Would I have chosen to not have her? I can't even answer that, but all I know is in spite of the ups and downs of her diagnosis I wouldn't trade it for the world. It's been stressful, expensive and hard on my marriage. Like our daughter we have learned to see her diagnosis as a positive. There is always a reason why things happen. Sometimes they happen with warning, sometimes they don't. The best response, in my opinion, is to stay and fight! My beautiful 23 yr old daughter is a testament to that. Annie, you have made me think and question. Always a good and maybe dangerous thing! Thanks for letting do a confused rant from my husbands iPad at which I am hopeless.

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  33. When I became pregnant with Vada, before any tests were done I knew that I would fight to have her and I did. My pregnancy was very difficult and very high risk. When we found out that Vada had Down syndrome (around 20 weeks into the pregnancy), the results only meant that I would fight for her more-- because all life is worth fighting for.

    Families break up for any reason these days. Blaming a child who has special needs is ridiculous! For us, our whole family is happier, stronger, closer, more educated, more compassionate, more understanding of each other and others in general. We are all of these things because Vada, our daughter who HAS Down syndrome, is in our life.

    I get that as a nurse or a medical professional you happen to see all scenario's but understand this... Typically, parents ARE NOT told of our child's potential. We are told only the negative. We are encouraged to abort. Like this nurse we are saying that murder is okay, in certain situations. I was never told that my daughter would bring so much joy. I was not told that she would breast feed for sixteen months (only for me to wean her). I was not told that she would speak and learn numerous signs before she was two. I was not told that she would laugh, cry, snuggle or even bond! I was told she probably wont do "A, B and C..." That's crap! I don't judge women who have abortion, y heart breaks for them. I pray for them because I know that they will always and forever ache with wonder. They will look at other children and realize that the baby that they threw away could have been like them. Someone that is extremely close to me, morns the day of her abortion. She gets deeply depressed on that day and the day that her child was suppose to be born. She cant erase that choice.

    While I respect peoples opinions I think that maybe this nurse has been a nurse too long. Life is not all science and when you begin to look at life as a diagnosis and not see the person then something is seriously wrong!

    I don't know what else to say. I hate conversations like these. I wish that all medical professionals were retrained. I wish that they were taught to be more personable and compassionate. We had some great nurses in our time and yes, I want them to do the job that they are suppose to do but a little bedside manner isn't too much to ask for either.

    When it comes down to it, my youngest daughter has Down syndrome and im not ashamed. I dont regret anything about her. I don't regret long trips to the hospitals, weeks in the NICU and away from my family, I don't regret the looks ignorant people give me or her. I love her. My family loves her and she has a place here with us. Its sad that I never knew how beautiful Down syndrome was before Vada and its even more sad to me that there is a world full of people who are in the dark like I once was and ill pray for those who are.

    Annie, you and your family are wonderful and Ollie is a fantastic piece of Gods creation. He knew what He was doing when he made her! Our children have a purpose far bigger than any of us could imagine and I know that each one will reach their potential (and then some)-- Ollie will because she has an amazing family who expect nothing less of her.

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  34. Oh and I do want to add that the high abortion rate - I mainly blame doctors. We count on them to lead us to the best medical decisions. When they impart their opinion not medical truth OR they hand out old information - it paints a very sad and depressing picture of what Down Syndrome is. I urge other parents to get 2nd opinions - look up International Down Syndrome Coalition for Life & find some pro-life doctors. Doctors are not right 100% of the time - it is worth doing your research.

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  35. You tell em, sister!!! Woot woot! I could not agree with you more:)

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Thank you so much for your kind words & support! I love hearing from you & read each and every comment you leave for me! ~Annie

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