Monday, February 23, 2015

Life With A Child With Down Syndrome

I had to dust off the cobwebs to write in this little space again. Its been quiet awhile since I have blogged. I have used this place in the past as form of therapy, as a soapbox, as a photo album, and to be honest, as a way to get validation at times. Well, I haven't needed therapy (well thats probably not true), and Instagram has become my place for a soapbox and photo album and I guess for validation too, although I hope I don't use it for that often.

So why did I decided to write today? Because my heart is broken. A life is gone, a life I spend every day fighting for, and Instagram doesn't allow enough space for me to say everything that I need to get off my chest.

Fiona is now 4, nearly going on 5. I didn't even look to see when I last wrote but I can guess she was maybe 2 the last time I posted anything about her on here. And while I never write anymore, this little blog still gets an ungodly amount of traffic stopping by. Key words like Down syndrome, Mosaic Down syndrome, clubbed feet and heart defect bring people by daily. I have thought about taking this blog off line, keeping it only for my own purpose because it documented a very emotional time of my life, but I keep it live for this reason- people are searching about life with a child with Down syndrome and this blog gives them a glimpse. It gives them a glimpse of a life I was not told about at first when I got Fiona's diagnosis prenatally. I was originally told "I'm sorry" and "I am sad to inform you". I was also told "you only have a few weeks to get rid of this problem if thats what you want". It was so painful to hear because although I was sad and it was not the news I dreamed about ever hearing, I had a baby, not a problem. My love for my daughter didn't change because of an extra chromosome, she was still a beating heart, kicking feet, little hiccups and wiggles inside my womb. She was still the same baby I had loved from the minute I found out about her, I just knew her differently now.  I wanted to take her extra chromosome away and fix her, the chromosome was the problem not my baby. But thats not possible so I sought out how else I could help my baby. It didn't take long for me to find the right support. Kelle Hampton, blogger at kellehampton.com, lived in my town and Nella was just a few weeks old at the time. I watched her in her little swing, the sweet half moon shape of her closed eyes as she slept, her chubby little cheeks and fingers closed in fists as Kelle took maternity pictures of my growing belly and I didn't feel as scared for my baby anymore. I found doctors who supported my pregnancy and called my baby by her name, Fiona, when referring to anything about her. I found doctors and friends and people  and blogs worldwide who were excited for me and gave me encouraging hope of what raising a child with Down syndrome really is like. A beautiful mixture of pain and wonder- much like all of parenthood is. We just kind of had a vantage point because we already knew most of the pains we would have to endure with Fiona's life, where who knows what kind of pain our twin boys will cause us in the future :)

Today, I read about a woman who seemed to not find the right support. Or maybe not. Maybe she found exactly the same support I did but choose to read it differently then I did. For her, she saw no beauty. She saw a life of misery and struggle for her child and her family. While I focused in on what was going to be positive about our future, she seemed to focus on what was going to be hard. Neither way is probably right- it should be all looked at together I guess for an educated decision. However, I wasn't making a decision, I was solely trying to help my baby live. This woman, she felt she had to make a decision. And to her, this life that she describes as a life- she describes how she longed for it, with numerous fertility treatments and IVF's to conceive it, how strong the his heart was, how beautiful and perfect his little feet were- was better off never being born then living a life with Down syndrome.

My heart is broken.

Its broken for this little boy who's life was taken away from him because someone else thought it was for his own good, while yet I look at my daughter who was created just like him and she couldn't love her life more.

Its broken for the father who wanted to keep him and had to support his wife as she took away his only son from him.

Its broken for the woman who is grieving the loss of this baby she wanted so much. She chose to say goodbye to a baby she longed for for years and she is dealing with the aftermath of taking a life, whether she is admitting it or not. While abortion is hard no matter the circumstance of the pregnancy, this one was a pregnancy that 10s of thousands of dollars went into conceiving, that the woman was enjoying, and that the woman wanted. My heart is also broken for her because I am sure she is dealing with a whiplash of hatred from women who feel as I do but lack compassion.

Its broken for the hundreds of families desperately waiting to adopt a child with Down syndrome in the US that could have had their son if other decisions with this little boys life had been made.

Its broken for this country in which promotes the euthinization of babies with Down syndrome and other birth defects by humanely, though thats debatable, taking their life before they leave the womb.

Its broken for our culture which does not value all human life nor respects that there is a God with a greater plan for life then we could comprehend.

Life with a child with Down syndrome is what you make of it it. There are aspects that are harder then normal, but there are aspects that deliver a beauty thats incomparable. We choose to focus on the joy Fiona brings to our entire family and circle of friends other then dwelling on these few things that are a little more difficult with raising her. Suffering is the last word I would use to describe her or any of the hundreds of people I know with Down syndrome. I haven't met people who love life more then those I know with the extra chromosome. If I had aborted my daughter, I would not only have robbed her of this life that she so greatly loves and lives to the fullest of her capability, but I would have robbed my self, my husband, and my sons of a joy so much more filling then happy could ever compete with. The joy of having Fiona in our lives.



4 comments:

  1. Fiona has grown so much! What a beautiful response to the heartbreaking story. I read the original article at work and had to walk away. I was starting to cry. I just don't get why in 2015 there is still so much misinformation. Sure, it can be hard. But no harder than raising any other child. I hope we get to see a little more of your family on here again. They are beautiful.

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  2. Thank you so much for your post. I read about that situation, for lack of a better word, & had so many feelings, but could not comprehend a way to express them. My heart was also broken. I also want to thank you for not taking your blog down. Yours was the first I came upon after my son was born 7 weeks early & we were told a week later that he had Down's syndrome. I had all these books they kept giving me, but your blog was the first thing that made me feel like just a mom, looking for some answers for her beautiful son, who she didn't yet understand. You also inspired me to start my own blog - in hopes that lives could potentially be saved. You have a beautiful family. All my love. http://thekaleidoscopeeyes.blogspot.com/

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  3. The story you have read is really heartbreaking. I think she doesn’t have to resort to that. But then, she could’ve been afraid to face the outcome that’s quite vague at the moment. As you’ve said, it’s all a matter of how one is able to live with it. Anyway, thanks for sharing.

    Paul Quinn @ MedCare Pediatric

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  4. Hi Shannon, I really appreciate your blog and instagram photos. I have a little guy (just turned 3) with Mosiac Down Syndrome. Thank you.

    ReplyDelete

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