July 7, 2012

My Truth

I'm kind of the ultimate lurker when it comes to reading blogs. My Google Reader easily has 75 subscriptions to sites and blogs that I follow...some of which I've followed for years. I have felt connected to, challenged by, and comforted by these writers during all stages of my life. It's a diverse group of people that I take the time to read from every day. I read "Mommy blogs" before I was ever a mother, and I follow about 5 different Young Adult authors now that I'm well beyond that particular demographic. However, despite how much these other writers are a daily part of my life, I rarely ever leave comments or engage with other readers. Comment sections can be a scary place on the internet these days, and as a general rule, I don't even bother to read them, let alone join the fray.


This morning, I broke my long standing lurking tradition. Not long after I got up, I settled down in front of the computer to catch up on the internet. Waiting for me in my reader was this post from Momastry. I came to this site like a lot of people after her essay "Don't Carpe Diem" went viral earlier this year. After reading, and loving, that essay, I spent some time going through her archives and added her to my subscriptions. I like Glennon a lot. I like what she stands for, how she loves, the grace she offers and accepts, and the opportunities she creates for the internet to do amazing things through tiny donations.


However, this latest post kind of stopped me in my tracks. To begin with, I didn't know Glennon's story well enough to know that her son didn't have Down Syndrome. I thought I had just missed that bit of information when I had gone through her archives. So, when at the end of the post, she revealed that her prenatal diagnosis of DS was, in fact, wrong and her son was without that extra chromosome, I felt cheated. My hopes of finding another person who was traveling down our road with grace and courage were dashed. The rest of her essay was tainted for me because of this misconception on my part, which I fully realized and tried to take into account. I know she wasn't purposefully withholding this information. Her son is 10 now, I think. I just didn't know. So, the twist at the end of this birth story was not one I could immediately overlook to see her bigger picture of celebrating children with DS. It was the exact opposite of our birth story, and so it made my heart hurt.


I know that was a strong reaction. Maybe even an over reaction, except for that it felt true. And so I de-lurked and commented. Now, I know you can read through the comments yourself, so I won't rehash what I said and how others responded. I'm glad I did it, and I knew from the beginning that she had only good intent in sharing her experience with Down Syndrome. I never doubted it.


This essay and the comment section has been stuck in my head for over 12 hours now. I kept checking in on them throughout the day to see how others responded and to take time to connect with those who reached out to me. It's been a hugely positive experience for me and may convince me to de-lurk a little more often.


However, the thing I keep going back to is how often it gets said that children with DS bring joy and sunshine and rainbows. How they are special and happy and different from the rest of us in such great ways. So many of the comments on the essay and the Facebook page reinforced it. And there are so many writers and parents out there that can substantiate that. I love them all, and they bring me so much hope and peace on days when I don't have any. I love that people have taken the time to write books and blogs and welcome packets to encourage, uplift, and uphold those of us who have this diagnosis in our children. I have spent many a night pouring over them this past year.


But.


But.


It's not just joy and sunshine and rainbows that this diagnosis brings. It brings grief and pain, uncertainty and fear, medical bills that can devastate you and doctor's words that can literally fold you over in their heaviness. This diagnosis can and has repeatedly broken my heart.


I feel like I'm not allowed to talk about those parts. I feel like it's my job to shout from the rooftops how amazing my son is and what a blessing he is. Part of me is terrified, even now, to hit publish on this post because of the "what if?" What if some woman just received a prenatal diagnosis and is wondering what to do? 90% of women chose to abort. 90%. That is a staggering number that breaks my heart. And I feel like every negative thing I say about Down Syndrome will reinforce that number. Every time I admit to a night that I am bowled over by grief, or acknowledge that my almost one year old can't sit up by himself, or when I focus on the hard instead of the good...I feel like I'm responsible.


I know that isn't true. My website doesn't generate nearly enough traffic to matter much. But it's the idea that gets me. That if I'm not playing my part, if I'm not being uplifting and strong and courageous 100% of the time, then I'm not worthy of being a parent of a child with Down Syndrome who writes publicly.


Look. I know that's bullshit. I know that I'm entitled to handle this journey however I deem fit. I know it, and yet...I feel pretty lonely in my journey. I don't find a lot of stories about the struggles.


I know it's in my personality to focus on the negatives first, before I can see the positives. I know this about myself. Yet, I don't want that to be my legacy to Samuel's journey. I don't want to be the Debbie Downer of the Down Syndrome world. Wah-wah. I want to look for the good and to focus on finding the beauty. 


But for me, in order to do that, I need to share the bad stuff, too. I need to be honest with myself, and subsequently, with you, and just admit that some times I want off this ride. I want my baby to be whole and perfect and without that extra chromosome. I want to shout from the rooftops that spending 6 months trying to get your son to willingly eat and swallow a spoonful of rice cereal and STILL NOT SUCCEEDING absolutely, 100% blows. I've lost track of the number of times I wanted to throw a bowl of oatmeal at the wall out of frustration during feedings.


Please, please, please don't misunderstand me. I wouldn't trade my Samuel for anything. If I had known before he was born, I would have changed nothing. He is ours. Our son. Our beloved. For as long as he is in our care, we will love him and cherish him and empower him and move heaven and earth for him. He brings enough joy to temper the pain. The smiles and giggles while he is pushing the cereal back out of his mouth help keep me from dumping it over his head.


And please also know that I am completely aware that our journey with DS isn't even as hard as it gets. So many parents would kill for the past 11 months I've had with my child. Some times that extra chromosome is a cruel, cruel thing and takes one of these babies before they've even had a chance to frustrate the hell out of their parents. Trisomy 21 can be so medically devastating and there are parents out there with hearts more broken than mine. I know. And I'm so sorry.


With all these thoughts running through my brain and my conversations today, I think it comes down to this: I need to acknowledge my truth. My story. I need to not be afraid to share it, nor judge those who have a different truth than mine. I will try to not speak in generalizations about this diagnosis, because I don't appreciate it when others do. I need to have enough grace to not only to extend to others, but to myself also.   These were lessons I wasn't expecting today, but God gave them to me anyway.

13 comments:

  1. Honesty is a brutal, brutal business. Sometimes you can feel that if you're completely open with your feelings that something bad will happen - whether to you, a loved one, a friend or even a stranger who reads your writing. My 97 year old grandmother had a fitting quote or scripture for almost every occasion. But, on that rare instance when she couldn't find the appropriate rejoinder, she'd heave a deep sigh and offer, "It is what it is." Many times she also said, "You only have to be strong one day at a time." When you struggle every day to stay positive and strong, it's easy to forget that you're human. I've always felt that the hardest part of parenting is stopping - just giving yourself a break from trying to make the right decision every moment of every day. Sometimes we just have to stop, hold our children and love them and not be strong. I also think that's when God loves us the most.

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  2. I'm generally a lurker like you when it comes to reading blogs and rarely commenting. But I wanted to let you know that I really appreciate your honesty. My daughter was recently diagnosed with Aspergers and there are days that I want to throw the figurative bowl of cereal on her head because I just can't get through to her. Then there are other days that she gives me great big hugs and all the frustrations melt away. I try to paint a pretty picture for those around me that everything is lollipops and gumdrops. I may just have to try a little bit of brutal honesty and let people know that we really don't live in Camelot.

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    1. Go for it, Vicky! I honestly have felt so much better since I got some of it off my chest.

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  3. Stephanie SautelleJuly 8, 2012 at 9:11 AM

    My son is almost two and can't even pull himself up to a standing position. He still takes bottles most of the time, and refuses to chew Stage 3 baby food. At almost *two*. I know how you feel. I really, *really* know how you feel. Yesterday he said "Mama" and I cried w/joy, because up until then he had only managed Dada and Baba. Just to hear my name and know that it's his third word made me cry like a little girl. DS is a brutal, cruel condition, and I am NOT a particularly patient person. But I wonder sometimes if that's the beauty of my getting to be his mom - maybe God is using this to teach me not to focus on doing and achieving, like I tend to w/my firstborn non-DS child, but just to love the kid every day in *spite* of my frustration at not being able to get him to do the things a "normal" two-year old should be doing. I can't make this child achieve what I want him to, and I have to struggle to accept that every day. DS will slow him down his whole life. And maybe that's okay - at least it may slow me down too, in a good way. I have no recourse but to snuggle his chubby belly and shout and scream and clap at tiny little accomplishments, and deal w/the fact that this journey is indeed going to "blow" at times. You aren't alone at all in how you feel. Just know that. This was brave of you. God bless.

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    1. Thanks for sharing your part of this journey. Love the little accomplishments!

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  4. I didn't even know you were keeping a blog! Love the background. Also, what YA authors' blogs do you follow? I only read Veronica Roth's and Rhys Bowen's (not YA). Always looking for more!

    Secondly, you DON'T have to be uplifting and strong and courageous all of the time (or even half of the time). And traffic or not, everything you say matters. I'm sure there are people Googling "being a parent to a DS child" all the time who find your site that you don't even know about. If you even help one person to feel better about their own situation, that is a whole lot of mattering.

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    1. Thanks for reminding me that words matter. Mrs. Sawyer would be proud :)
      And I follow John Green's tumblr, Sarah Dessen's blog, Meg Cabot, and a few others I found through Goodreads.

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  5. You share so well the tension between wanting to join the chorus of yay-special-needs!, and wanting to express the genuine griefs and struggles of raising a child with disabilities. I enjoyed stumbling upon your blog, and look forward to more posts where you express that tension! Cheers to you and Sam. You can find me here: http://starinhereye.wordpress.com/2012/07/07/the-beginning-four-pounds-twelve-ounces/

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    1. That's a great way to sum up what it feels like...wanting to only share the best because that's what you want others to see, but needing to be real for your own sanity.

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  6. I came over to visit after visiting there and seeing your comment, and I just want to say...REAL is GOOD. This life is tricky. Parenting is tricky. Period. Having a child with Down syndrome or any other "exceptionality" is uniquely tricky. There is nothing totally flowery about parenting! It is great to be positive MOST of the time, but real ALL of the time. I have learned so much throughout my 9 years as a mom to Mylie and I want to be there for other moms who might need it. We have to be advocates for our children and EACH OTHER. Speak your hear. You will do others more a service. I just wanted to encourage you. And this post was beautifully said.

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  7. Lovely to find our blog via Ellan and Max. Thankyou for your raw honesty its very refreshing and real x

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  8. I think you absolutely should share your story. You are right. More of those moments and feelings need to come out. I feel guilty whenever I post anything that is not 100% positive and I need to stop feeling this way. The Ds blogging community has become so important to me, because it has provided just that: a community that I needed. Reading that others have many of the same thoughts and feelings is very validating and helps deal with the guilt of those feelings too. You are really not alone, so thanks for being honest.

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  9. Here's a blog I just came across, and thought you might be interested in: http://kelsicorner.wordpress.com/2012/03/19/welcome-to-kelsis-corner-having-a-child-with-down-syndrome/
    Thanks so much for writing and being open and honest about your journey!
    Cheering you all on!!! :-)

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