Saturday, November 27, 2010

Aborting a Baby because of Down Syndrome?


Lately I have been doing a lot of thinking.

Thinking about the transition from loathing the concept of having a baby with Down syndrome to being overjoyed and unbelievably happily in love with Addison exactly how she was made...extra chromosome and all.

I have been recently introduced (and addicted) to Babycenter forums (Thanks, Patti..(-: ) While nosing around, I see people proudly posting who just have received a Down syndrome prenatal diagnosis. It forced me to think back and recall things that I would rather forget.

When I was pregnant with Addison, the last thing in the world that I was doing was posting on a Down syndrome forum. I wouldn't even announce it to friends that weren't terribly close anymore. Why?

You know how they say that 1% of amnios are wrong? I was praying to be a part of that 1%. I was convinced that if I affiliated myself with DS before my baby was born, it would be like admitting to the world that something was wrong with me because I wasn't having a normal baby. It would be making the diagnosis come true.

People around me were murmuring such things as "God is judging you". And telling me over and over again how devastatingly horrible this was. No one in my circle of friends or immediate family had any experience with Down syndrome- thus leading to a myriad of stereotypes and concepts born out of ignorance that were relayed to me through pitied glances and "I'm sorrys" slathered in abundance.

I was raised in a very strict Christian home. I had always been taught that abortion was wrong. But for the first time in my life, I understood why someone would want an abortion. Yes, you understand that it is a life, but it is a life that you honestly have no idea how you are going to deal with. I felt stuck with this. I didn't want this to be part of my life. "Different" people scared me. I didn't know what to say or how to act around them. I certainly couldn't have a "different" daughter. I needed a perfect baby. I felt guilty and thought things that I couldn't even tell my closest friends or my husband.

Yes, while I was pregnant, I came to a point of acceptance. But, I still had days where I would grieve the news, and I still deep down secretly wished and prayed for the amnio to be wrong.

After Addison was born, the first thing I did was anxiously search over her features to see if she "looked" Down syndrome. As they were cleaning her up, I kept waiting for someone to yell "Hey, we made a mistake. This baby's NORMAL!"

When I visited her for the first time in the NICU, yes I loved her because she was my baby, but I still wasn't completely over the fact that she wasn't part of that 1%. She had so many health problems. The doctors had no clear answers for me. They didn't know exactly what was wrong, and they had no idea how long she would have to stay there.

Also- we discovered the DS in utero because of four cysts on the back of Addison's neck. When she was born, those cysts were gone, but her skin had grown in around them. The back of her neck was huge and baggy- with several large rolls that resembled a cross between a triple chin and floppy stomach fat.

I was so embarrassed by her neck. I didn't want anyone to notice it because to me, it made her "look" DS. She also was extremely bloated with extra fluids. Yes, she looked very, very DS. For weeks she was on CPap. I was terrified of the mask coming off because I didn't know what my baby was going to look like. I wanted a beautiful baby.

I felt like the smallest person in the world. I was doing the best I could, but I was dealing with a myriad of emotions and hormones on top of lack of sleep. I can't say that at that point I had unending love for my daughter. Sometimes the health problems looked so massively insurmountable, I thought to myself it would be easier if she didn't make it because then I wouldn't have to deal with the DS thing and all of the health problems. Recovery seemed too hard. I felt like I would never have a healthy baby.

I felt one thing with my emotions, but I knew another thing to be true in my heart. I was this baby's mother, and big neck, puffy DS look, health problems and all, it was my job to be there for her.

Every day for five weeks, I woke up, got ready and went to sit beside my baby's bedside who slept for most of the day. (Note: there are no "weekends" for a parent with a baby in NICU. Every day is exactly the same thing) I would wait for moments when she would open her eyes so that I could scan her anxiously to see if she truly "looked" DS.

I would play her music, bring her cute outfits that they wouldn't let me put on her, monitor her stat numbers and subtly jiggle down her oxygen to see if she would keep her numbers up. I learned how to work all of her machines, I changed as many diapers as the nurses would let me, I would hold her tiny hand and urge her to grab on. Whenever her eyes would flicker open, I would place a pacifer in her mouth and try to get her to suck on it. They claimed that because of her low muscle tone she couldn't eat on her own, so they wouldn't let me try. They also told me that she couldn't be moved because of her breathing issues. I was only allowed to hold her once a day- on the good days. Oftentimes I saved that one time for the evening so that my husband could hold her while he read to her.

I would go home at the end of a very long day of mostly watching a sleeping baby to an empty nursery and an empty house, because then my husband would head up to the hospital to spend a few hours with her before bed.

It was a hard, hard time. Most new mothers complain about the lack of sleep and never getting time away from their baby. I felt disconnected from my baby who was seemingly slipping away from me. Sometimes I felt like I didn't have a baby. I was responsible for the lump lying underneath all of the tubes in the isolation room of the NICU.

I think back to this time, and I wish that I had been less embarrassed. I wish I had spent less time asking the nurses if they thought she "looked" DS. I wish I hadn't deleted and hid every picture that highlighted that huge neck and puffy face. I wish I had trusted more and fretted less.

I wish I hadn't already given up on my baby while she was working so hard to stay with us.

Everyone kept telling me- "You're amazing. Wow, you're such a good mom."

I would stare blankly back and wish that it was actually true.

Alone, day after day beside a sleeping baby I didn't know what to do with and sometimes just blocking out the medical jargon because I couldn't take anymore. Is it just me, or is doctor speak one of the most confusing languages in the world?

I don't remember exactly when things started to turn around. Learning to love a new way is a slow process.

Day after day doing what I knew to be right, I began slowly to fall helplessly in love. The way she cuddled her blue little spooning buddy that they put in her bed to make her feel less alone. Seeing her pull off tubes with surprising strength and forcefully throw up her feeding tube when she just got tired of it. Watching her stare up and me and silently plead for me to please not give up on her. Seeing her small victories such as finally being able to eat 10ccs of milk on her own (take THAT- resident who yelled at me for trying) Getting off the CPap onto a nasal cannula. Seeing her numbers improve. Watching her survive her first surgery to get her G-tube placed. Seeing her graduate from the open bed, to the isolette to the crib. There were so many small milestones during those five weeks that to us were HUGE victories.

One day, when she was still in isolation, her numbers were pretty bad and on the downward slide. The doctor on call told me that they were going to intubate her and try a new medication, and as a result, she would probably be intubated for months. That is the only time that I broke down in the NICU. I sobbed and sobbed. I just didn't know how much more I could take- and I knew that the intubation would make Addison mad. The doctor obviously felt horrible, so he said that he would give her another hour to see what she would do. It's almost as if Addison was listening to my cries. During that hour, her numbers shot up. The doctor came back, looked surprised, and said that we would just forget intubation since she was doing fine.

Going through so much with Addison- surviving day after day, talking to her, working with her- I fell in love. She was working so hard just to live, I determined that it was up to me to do the rest. To take care of her, to advocate for her, to love her, to pave the way for her to do anything she sets her mind to.

I wonder if maybe God planned out for Addison to have a lot of extra health needs because He knew that I needed that to truly be the mom that Addison needs. It took me five extra weeks to come around to my new job in life....so God arranged for Addison to spend those five weeks in the NICU, fighting for her life so that I could learn to appreciate and guard it with my life.

I wish that I wasn't such an extremely selfish person. I wish that it hadn't taken me so long to realize that just because I hadn't planned on it didn't mean that it wasn't a good thing.

Honestly, if I had been raised without being taught Biblical principles and to love a sovereign God, I probably would have been part of the very high percentage of women who had aborted once they found out about the Down syndrome diagnosis.

I am ashamed to admit that. But, I do hope that my admitting that can help someone else struggling with these same thoughts.

If I had known everything then that I do now, I would have viewed the concept of my new baby having DS totally differently.

It took Addison to teach me so many things about life, about what really matters, about what love is really all about.

Love is not about perfection. It is not about beauty. It is not about feelings.

Love is about looking a decidedly Down syndrome looking baby in the eye who is attached to every conceivable machine, struggling to breathe, with an extra thick, huge neck and deciding

that she is beautiful.

that she is smart.

that she is wonderful.

that she will change your life. (and not in the bad way that you have imagined...in a really, startlingly good way)

You throw stereotypes completely out the window and realize that this is YOUR baby. No, she will not be just like every other DS baby. She is an individual.

She deserves a chance at life.

She needs to be taken care of no matter what that means.

Once you have decided this in your heart and mind, you continue on, day by day, and you feel those decisions build in your heart until they bring such a smile to your face and tears of joy to your eyes that you surprise yourself.

You are surprised that what you thought was ruining your life actually saving it. What you thought was going to destroy everything good was actually defining a whole new level of good for your life that you never dreamed possible

I know this post is impossibly long, but these thoughts have been weighing heavy on my mind this weekend. This Thanksgiving weekend.

Because I am so unendingly thankful

for my daughter

who has Down syndrome.

I am so thankful that I was protected enough not to make the greatest mistake of my life in not wanting my baby.

I am so thankful that the knowledge of the right thing to do was in my mind even when I didn't feel like doing it.

I am so thankful for the amazing spirit that my daughter has.

I am so thankful that the Lord doesn't make a single mistake.

I am so thankful that when the five weeks came to an end and I was able to take my daughter home from the hospital with a nasal cannula, an oximeter, five medications and a g-tube....I was over the moon excited and had overcome my selfish desire to give up on my baby.

I am so thankful that the Lord changed me into the mom that I needed to be.

You know, when I announced to the world that I was pregnant. Do you know what all of my friends and family said?

"Oh, congratulations! Aaron will make such a great dad!"

Yeah, I'm not kidding.

It's not until people started to find out about the DS thing that they declared me to be a "great mom" right along side the "great dad" that I was married to.

Everyone's path looks different. Don't assume that your life has to look like someone else's to be "perfect". Accept whatever hand you have been dealt and declare that to be your perfect.

even if that includes Down syndrome.

Yes, I said perfect.

If you find yourself faced with the choice of ending the life of your baby who you haven't met yet because of a diagnosis of a seeming "defect"

I urge you from the bottom of my heart, to think about your little baby as a life that is unique in a good way, to realize that this was placed in your life for a reason.

God does not make mistakes.

He chose you to have the perfect baby for you.

Just like he chose the perfect baby for me.


I am completely overwhelmed by the people that I have met since starting this whole journey that are so much more selfless and loving than I am.

People who are adopting babies with DS and willingly making it a part of their lives.

Women who had just received a prenatal diagnosis of DS and are proudly posting their news online.

I applaud you. I would have never chosen this to be a part of my life. I envy the love that you so easily have that I had to fight and struggle to realize.

But now that it is here?

I pray every day that Addison will live a long, healthy life. Because I plan on being her very best friend, every step of the way.

Down syndrome is in my life to stay.

And I couldn't be happier about it.

14 comments:

  1. Oh dear, I've been crying enough today, thanks a lot, Deanna! ;) This needs to go on the Ds pregnancy forum on Babycenter, I hope you post the link there!

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  2. tears...tears !! absolutely beautifully written!

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  3. This was one of the best posts I have ever read!! Reading about Addisons early days and what you went through breaks my heart. I cried through this whole thing. I am so, so, glad I have met you through here, you have truly helped me on my own journey, and I just adore Addison. I love how you said everyones path is different, and my perfect may not be some one else's perfect...Beautifuly said...so many things in here, just really beautifuly said!!

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  4. Incredible! So truthful. I have a son with DS but we didn't know he had it until after his birth. We had many of the same feelings you have, but now I would take ten of him! Children with DS are wonderful! Thank you for sharing your story. I am going to share it with my friends.

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  5. My daughter is almost 5 now and I did have DS pre natal diagnosys. And yes, I thought many times during my pregnancy that maybe I would like to have nature taking care of it.
    But one thing that helped a lot was that I never felt sorry for myself. All my sorrow was for her like if she was one of my other kids and had had an accident.

    I have 4 kids and she is certainly the one that has brought me the most.

    Thak you for your sharing
    Francisca Prieto (Portugal)

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  6. Deanna,
    I don't know if this will help, but I am a mother of 4 and pregnant with my 5th, and I have found with everyone of them that it takes a while to really "fall in love" with them. You love them when you are carrying them, but you can only love the idea of who they are going to be. It is not until you have them that you can actually start to go through the process of falling in love with who they actually are. Especially with my first one I could not help but look at her and think, "who is this child"? Becoming a new mother is really hard, you are learning a completely new person who is totally dependent on you when you are physically at one of the lowest points in your own life. It is overwhelming for every new mother and I can only imagine how that is magnified by multiple health issues. Don't be too hard on yourself, if most new mothers were honest they would admit to a host of feelings that they are not proud to admit but it is ok, we all grow past those things and learn to be the mothers that God planned for us to be. I know from reading your posts that you have very high expectations, but allow yourself to be human, after all it is God who created you to be human.

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  7. You amaze me, Deanna. *sob sob* Thank you for your continued transparency...may the Lord use you greatly, not only in Addison's life, but for all of the other mom's out there that don't yet know that they will need someone like you in theirs. I can see you doing great things in the years to come on behalf of all families that are as blessed as yours is. I count it a privilege to know you. I can imagine that Aaron is a great dad, but I KNOW that you are a great mom. :)

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  8. :) i love this post! :) i would have reacted the same way if i had found out prenatally...in fact i am convinced that i might not have been able to handle it, and that is why i didn't know...i know how you felt in the nicu...about wondering if life would be easier if addison didn't make it out of the hospital...i felt the same way with camden the first few days in the nicu...before i really held him, before i really looked at him, before he felt like my baby...i haven't ever told anyone that...in fact it is still hard to admit it to myself, i brushed it off and told myself that it was a protection mechanism, you know, in case maybe he didn't make it...but in reality it was just my selfish way of coping...and i am so glad that you said it here...because i know i'm not alone. thanks for your perspective, i think it is so important for moms struggling with the ds diagnosis to see the acceptance process, and to know that their feelings are normal and that they will change, into something they can't even imagine yet. thank you. you are an amazing mom.

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  9. I lurve the babycenter forums!

    And yes, Addison is beautiful and smart and wonderful!!!!

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  10. I hope your blog will one day become a book. There are so many people out there who could learn from you, Addison and great Dad Aaron. (:

    Keep posting your thoughts and pictures!


    Lots of Love from Switzerland

    Helena

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  11. Thank you for being so honest and shareing your story. Parents need to hear this story and I have already shared it on my facebook page "Down Syndrome Illawarra" and I will also be adding a perminent link to this from our website. around 90% of women who recieave a pre-diagnonsis terminate. Raising awareness and shareing stories like yours will change that, good on you, keep shareing xx

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  12. Im a blubbering wreck after reading your blog...I have always reflected back on my first thoughts of my son with so much guilt,when I found out about his DS and his heart condition I just wanted him gone from my stomach, he was not my son, not the child I had imagined for the last 8 months. My son had died and been replaced with a complete stranger that I wanted nothing to do with. When I look at my 3 1/2 year old boy now I cant imagine my life without him. How small and unimportant my existence was before he was born. His love and ability to inject a healthy dose of happiness into my life every day is something we all should hope and pray for. But from this deep ever lasting love I have for him grows the painful guilt I feel about hoping I could wish him out of existence.. Your words have helped me to see that i shouldnt feel guilty for being ignorant but instead feel grateful that I now get to live my life with my eyes, heart and head wide opened. THANK YOU

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  13. Deanna~ I was perusing your wonderful blog and had to let you know I love this post. It made me cry! I can (somewhat, maybe, sortof) understand how you initially felt with the DS diagnosis. During my pregnancy, I struggled with what we would do if we found out there would be something "wrong" with our baby, and I'm also ashamed to say that I leaned towards abortion if we were given that news. I didn't want a baby that wasn't "normal." I'm sorry I wan't there for you during Addison's difficult first few weeks. Reading this post makes me take a step back and not only appreciate what I have but realize how amazingly strong and blessed you are. It makes me think of future pregnancies I might have (God willing) and how I will approach things differently. You are a wonderful mother and Addison is so fortunate to have you and Aaron as her parents. Nope, God doesn't make mistakes!

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  14. What A beautiful story, thank you. I have a wonderful 4 year old daughter who has DS. We adopted Claire and I wish I could tell you that I was truly selfless, NOT TRUE! I struggle, the Lord knows I do. I go through seasons of beauty and seasons of pain. Watching Claire overcome so many changes, too many to name. She is beautiful and strong and compassionate... I love her.

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