Thursday, January 7, 2016

Why Do Blogs Die Out As Babies With Down Syndrome Grow Into Children?

When Addison was a baby and I was new to the world of Down syndrome, I did a LOT of blogging about Down syndrome and my baby Addison and how her diagnosis impacted our life in general. But something I noticed and discussed frequently with other moms with babies with Down syndrome was the huge lack of blogs following the lives of older children, teens, and adults with Down syndrome.

We secretly wondered- was it because once the "cute baby" look was gone, life got super duper hard and there wasn't a lot of positive things to blog about? Did "cute baby with Down syndrome" eventually evolve to "child with a disability" with a lot less shiny blogging glow?
Well, I certainly don't speak for the masses. I really only can speak for myself. But as Addison has grown from "cute baby" to "child with a disability", I have noticed something that has caused me to pause in my free style blogging about Down syndrome and about Addison.

I do not own Addison's diagnosis. As she has grown, she has made it quite clear that this is her life to live, HER diagnosis, her path in life. Not mine.

I do not apologize for the blogging I have done in the past, because as she was a baby and struggling with a lot of health problems, it did feel more like "my diagnosis" as I navigated these new waters of not only "special needs" but also "special health needs". And I really feel that this kind of open blogging is needed in a world where so many people with similar stories choose abortion because they think that is the only solution based on how little they actually know about Down syndrome. Speaking up and saying "Hey, I was confused too- but I chose the path of life and this is where it took us" holds a lot of value. There is something to be said for when your child is a baby and needing to tell the story until your baby can speak for herself.

But now she CAN speak for herself. And honestly how I feel about Down syndrome, or the things that I observe or think or  think I know about Down syndrome (I really know quite little even after 6 years because living with someone with Down syndrome is not living with a textbook outlining a diagnosis- it is living with a person who grows and changes every single day)- these things from my point of view don't really matter. My job in all of this is to be her support team to travel HER journey through HER diagnosis and HER life.

Not mine.
So the reason I have stopped blogging so freely about Down syndrome is not because "cute baby" has grown into "child with a disability" and LIFE IS SO HORRIBLE I CAN'T BLOG ABOUT IT. No. Not at all. Quite the opposite.

Life with Addison is amazing, and I find myself daily overwhelmed with gratitude for her personhood that I am loving getting to know better every day.

But when it comes to being a secondary reporter on a subject that I do not own- there comes the privacy issue of the party being discussed. I don't think this means that I have to stop blogging completely and SHUT DOWN THE PRESSES when it comes to Down syndrome. No. I still believe in my part as Addison's advocate. But I guess I'm still trying to figure out where this balance is between me writing about Down syndrome and me writing with the careful understanding that I definitely don't own her diagnosis and I don't want to put words in my daughter's mouth. (Her words are coming FAST and FURIOUS these days. Seriously, this girl's vocabulary is exploding and getting clearer every single day.)
So if you have a new baby with Down syndrome and you are wondering "Where did you go? Did it just get too hard?" I am here to assure you- no, no, NO, a million times no. In fact, it has gotten easier as she is now quite healthy and extremely capable and smart in so many ways.

As I learn and grow alongside Addison, I see a new side to life, to myself, to what parenting is all about.

And I am thankful for the privilege.

So what do I feel comfortable sharing at this point?

Addison LOVES going to Kindergarten and tends to sail into her classroom like she's making a stop on her Miss America tour, complete with a wave and "Hi, fwends!" (I am told that they respond accordingly and many excited voices shouting "Addison is here!!!" is not uncommon.
Addison can completely dress herself, but some mornings....she chooses not too. Ha.

Addison can completely feed herself (hello, g-tube baby). Some textures of things seem to still bother her, but if prompted, she tends to eat most things. (Always a fan of chocolate though) And she drinks from a regular cup. Sippy cup not required.

She gets quite agitated if her brothers wrong her in any way- crying out for JUSTICE and naming the wronged parties specifically by name. (She usually tacks on what she thinks their discipline should be. Boys should be thankful that she is not in charge of their discipline because she is a strict one!)

She still struggles with bolting, but this seems to come and go in waves. Right now she is doing really REALLY well with it (knock on wood), and last week during our mall walks (this is where we go to get our exercise when it is cold outside), she walked next to the wagon for about a mile and did not attempt to run off one time. (Pause to CELEBRATE the hugeness of this)

She knows all of her letters and numbers, and is working HARD on reading. Storytime is her favorite thing to do each night before she snuggles into her "new bed". (The bed is now about eight months old, but she still calls it her "new bed" and it is adorable to hear her ask for it.)

Last week was a tough week for the kids as we transitioned to a kitchen renovation, and Addison stepped up and quite maturely acted quite grown up compared to the boys- who completely fell apart.

She doesn't like to watch TV of any kind, but is obsessed with building blocks, wearing her jewelry, or tearing her room apart to try on new outfits. If I bring her an outfit for school that she doesn't like, she will hide the outfit and go pick out something else. (She got new shoes this week and basically refused to take them off even for bath. She asked me to take a picture.)
Addison is quite a social little girl. She loves to be around people- her fwends, her teachers, completely strangers on our mall walk- she loves them all.

If Addison wrongs her brothers, she will go back and give them a hug and tell them she is sorry. (Most of the time she means it. lol)
She LOVES to ride on the "noggin" (sled or tube). She has begged to go again all year round.
I don't get as many awesome pictures of her these days, because quite simply- she lets me know when she doesn't want me to take her picture. Fine by me. It is her right to say so. My desire to have a cute IG feed pales in comparison to her need to control her own privacy.

All of these are facts about Addison's life. Observances from my point of view. How I FEEL about her being in special education or needing a full time aide or frustrations with teaching her at times or any of these things- DO NOT MATTER. My need for cathartic therapy or online support does not trump Addison's need for a parent watching out for and protecting her in this very much non-baby stage. The only thing that matters is that she gets the support and love she needs each day to navigate her life to the very best of her ability.
(please excuse the necessary boob sticker. Out of control over here. I am claiming "8 months pregnant" on this one)

So I have slowed my blogging so that I can focus on giving her that love and support. Parenting is a bit of a minefield, and I have been working hard on stepping only on the little bombs. So much to learn. So many mistakes to apologize for. So much love to give.

I'm sure I will be back here more as I have finally figured out this distinction of why blogging about Addison and Down syndrome has started to bother me. Once this baby is born and hopefully my brain comes back just a bit (I have been in an 8 month fog), I hope to continue work on my next novel. I don't feel that my fiction work infringes on her privacy at all as it takes concepts from our life and applies them to a completely made up story. I still believe strongly in my job as advocate. I just also believe strongly in my job as parent and the importance of keeping those two things in harmony with each other.

1 comment:

Thanks for reading about my Everything and Nothing. I would love to hear from you!