Tuesday, April 28, 2015

Down syndrome : where we are today

Note: I started this post yesterday... but like most things in my life, I didn't finish it as planned. 

Carry on...


 I was just inside my house putting Lily down for a nap when our son Tyler texted me from work – "are you doing anything outside today?" All weekend long I had been looking at the weather app on my phone and making a mental note that Monday was going to be a day of sunshine and perfect temperatures. This morning when I woke up I had every intention to make it outside. And then .. laundry and dishes and homeschooling and a puking child interrupted those plans. 

It took a text from my son to remind me that these kinds of days are not always a guarantee in our neck of the woods… so here I sit on a lounge chair in my beautiful backyard, soaking up the sun, and voice texting this post into my phone. The sound of lawnmowers is buzzing in the air, the smell of spring is everywhere, and the warmth of the sun is penetrating my Old Navy T-shirt and jammie pants....

And yes, it is perfectly okay to be in your jammie pants at two o'clock on a Monday afternoon. I looked it up in my Rules For Housewives Manual and it said so. In fact, it not only said it was acceptable, it said it was required attire for Mondays. (That's right underneath the paragraph that mandates chocolate for breakfast on Mondays, just in case any of you housewives lost your Rules Manual and were wondering.)

So let's see, what do I have to say on this lovely sunny Monday afternoon?

I will start with something that's been floating around in my brain for the past few days…

I have not blogged about Down syndrome in a long time.  I thought about this several times this weekend ..

And what I came up with was this : it's not because I don't care about the topic or that I don't have anything to say… It's just that it has sort of taken a backseat to things in our lives over the last few years, and I find myself forgetting that this blog started off with that theme in the first place. It's almost like an afterthought in a way - oh yeah, this used to be a blog about Down syndrome . maybe I should talk about that again some day.

typical day : Lily in her kitchen and Hayden questioning her sense of fashion for the day

I follow some young moms on Instagram who have children with Down syndrome who are just babies right now… These moms have such a passion and a zeal in their posts about their children, and I identify with them. I see myself in their words, and I remember what it was like to "feel all the feels" right after we had Lily and were new to the whole world of special needs.

And it's not that I care less about being an advocate now that Lily is five ~ it's just that time seems to mellow things, you know? I realize that we still have many years ahead of us, and many more challenges to face that we haven't faced yet… but at the same time, things don't seem quite as intense as they did when Lily was first born. 

For instance, in my experience (and I do realize my experience might be unique) I don't go into public with Lily on a daily basis wondering what people are going to say or think anymore. 

I think when she was first born I felt the need to explain things to people when they first met her – ( I have no idea why). I think I felt the need to kind of break the ice with some silly little sentence explaining that she was blessed with an extra chromosome, or that she had designer genes or something of that nature. It's not that I did it every time we met someone new - I just felt like it was the elephant in the room for a while, whenever we were out and about. 

But over the years I've sort of noticed that the elephant in the room was many times ... just an elephant in my head.

For the most part when people meet Lily, they just smile and say hello and remark on what a darling little girl she is . Occasionally someone might mention that they have a friend or relative with Down syndrome - but I have not experienced any negativity or pity in those comments since Lily was first born . In fact, I can count on one hand the times someone has said something negative about her extra chromosome - and those incidents have been so rare that I can pinpoint exactly when they were. 

Lily's genetic makeup is, for the most part, a non-issue. And if it does come up, it is never anything I feel I need to defend. 

I have been pleasantly - make that wonderfully - surprised at people's reaction (and even lack of reaction ) to the fact that my daughter has Down syndrome. Whatever negativity I once expected to face in the world has been microscopic compared to the overwhelming kindness and love and grace we have experienced thus far.

selfie with her boyfriend/brother

So right about now, there are probably some moms who are a few years down the road from me on the journey of special needs, who are reading my happy little post and thinking "oh just you wait."

And perhaps they are right- perhaps there are some very unexpected and unpleasant experiences just around the bend for us, ones that will knock me to my knees in despair. Lily is only five, and she is for the most part, surrounded by people who know and love her. She is homeschooled like her siblings, and I don't see that changing in the future. 

So we obviously haven't had to deal with IEP's or fighting with any "system" to get her the help she needs. I know that some of my friends in the Down syndrome community have had to step up their game as far as advocacy goes, once their children became school age - I've read blogposts and text messages and articles, and I've seen the battle that is still going on for many as far as inclusion goes. I know that in a sense I have been shielded from that part of the equation, because of our decision to homeschool Lily as we do our other children. 

stealing brother's schoolwork. because she LOVES to write :)

But school politics and IEPs aside, what I have witnessed on a day-to-day basis is a culture that is gracious and kind and accepting of my daughter's diagnosis ... and I'll go so far as to say that Lily is treated better because of her condition than if she had no condition at all. On a regular basis I have total strangers tell me what a beautiful little girl I have, and remark on what a blessing she must be.

At the eye doctor- she had the receptionist, the doctor, and all the nurses wrapped around her finger the entire time. She marched down the hall to the exam room with her purse on her arm like she OWNED the place, and they offered her about 25 billion stickers when she was done - I'm pretty sure they would have given her a pony if she had asked .

I'm really not trying to paint a unicorns-and-rainbows picture here of life with Down syndrome. We have had plenty of hurdles to overcome developmentally-speaking since her birth.

But what I have seen thus far is that Lily- just like all of our children- has strengths and weaknesses, and that many of the things she has struggled with were just delays.

For example ...

She rolled over from birth, smiled before any of our other children did, and was by far our easiest baby - hands down.

It took her four months to learn how to nurse.

She learned hundreds of signs before she could talk, began recognizing words and flashcards before she could stand, and could charm the socks off a stranger with one toothless little grin.

She never practiced standing - she just threw herself up in the air from a squat one day and surprised us all.

She didn't walk until she was two, didn't talk until two and a half, and she just mastered potty training last month.

She has been our healthiest child, with the least amount of trips to the doctor, and aside from getting tubes in her ears when she was two, she has had no surgeries. She is rarely sick.

When she is sick, it is almost impossible to get her to drink. She's had several "borderline dehydrated" incidents and one trip to ER last month for IV fluids. .. and it was quite a scare.

She loves to dance, has incredible rhythm, claps on time to songs in church, and sings along to the music (her own words.)

She is cognitively nowhere near where a typical five year old would be.

She does not really answer open ended questions  (what did you do today, where are your shoes, what do you want to play? etc) and often repeats a question back to us.

She can follow two or three step directions to a tee.

She can climb onto barstools and into the van, go up and down stairs easily, go down the slide at the park herself and chase her baby brother all around the house.

She does not hop on one foot or jump very high (yet), cannot snap or button her pants, and has a hard time getting her arms into her sleeves.

She recognizes many letters, reads over thirty words, has written her name several times, and knows exactly how to get on Duggars episodes on Youtube. By herself.

She cannot pronounce the letter F or V yet, she often says words backwards (nac for can) or jumbled (noccor for Connor) and we are working hard to use five and six word sentences.

She has an incredible memory, she knows how to open apps and play games on my phone, and she is an expert at taking five million selfies unbeknownst to me.

She is a little character. She has the biggest belly laugh you've ever heard and a wicked sense of humor - she makes us laugh til our sides hurt.

She works hard to overcome her delays, she is tenacious and determined and loves to learn, she is patient and sweet natured and affectionate to the max.

She loves to play in her kitchen, eat Cheerios, sit and read books, draw endless circles, play with her baby brother, color in coloring books, rock and sing and shush her baby dolls to sleep, swing on swings, and most of all snuggle.

She gives the best hugs, most tender of kisses, and her favorite thing to say is "I wullah" - which is I love you.

So this is where we are at, five and a half years since I sat down at my computer and typed the words Down syndrome into a blogpost for the first time.

I'm copying those words here- and leaving them as I first wrote them - when I didn't know that Down syndrome with a capitol D and no s at the end was the correct term for the condition my baby girl would be born with - and when I didn't know how good life was about to get.

I finally ask (the doctor) what is floating around my brain- is this a marker for downs syndrome? He blinks and nods his head and says yes, any time there is a heart problem, especially av canal, that is a strong marker. I ask- and the kidneys? He looks me in the eye, nods, and says yes, that is a marker too. I just stare at him, and he stares back and pats my leg and says "I know, it's not easy to hear." ...or something like that.

....We drove home and talked as we drove...Daddy reassuring me that we don't even know yet IF there is anything wrong...Kenzie very quiet in the back. I made several phone calls, decided we didn't want to tell your little brothers and sisters anything until we know for sure. Asked friends for prayer...stared over and over again at your angelic face. 

Calmed down- God is going to help me through this journey. 

Maybe it's a short one, and in 3 weeks we'll find out there was nothing to be concerned about in the first place. Maybe it's a little longer- maybe you'll need surgery and then our lives will go on as before, this just a bump in the road, albeit a big bump.

And maybe this is a life-long journey, one that will bring new changes, and challenges, and things we never knew we'd go through...

But either way, God is faithful and He knows the road. I know He is going to give me strength for whatever we go through. I feel it already. 

Baby, whoever you are, know this. You are loved. You are cherished, and longed for, and prayed for, and treasured, and so so loved. I don't care what you have, how many chromosomes, how many defects, Mommy and Daddy will take care of you and do all that we can to show you how very loved you are.

And she is.



Laura said...

I just wanted to say thank you for sharing the beauty of life, motherhood, children, extra chromosomes, and all. I don't have a little one with Down syndrome, but I do have a little boy diagnosed with autism and developmental delays around the same age as your daughter. It has been a challenging road since we adopted him, but we have seen God's hand guiding, strengthening, and helping us along. Just like you said and just like our other 3 children, he has strengths and weaknesses just like everyone else. I'm still trying to figure out "the elephant in the room"--when to explain my little guy's behaviors to others and when to let it be (and have a good laugh later about what they might think;) ). Anyways, I just wanted to say thank you--it's nice to know that families with children of "extras" aren't alone. I saw your blog on a friend's blog list a few months ago and I've enjoyed and appreciated your blog.

Naomi said...

Love this post.

Tara said...

Aw, Patti, you made me cry! Beautiful and so true. Down syndrome just becomes part of life, does it not? So glad we don't have to "feel all the feelings" at this stage of the journey. We are blessed, indeed, my friend!

MamaV said...

Oh hooray! She is so cute! I hope someday God blesses me with a little one with Down syndrome...

Unknown said...

I love this post (and every other one you share!). I love that kid and it's been so fun watching her grow up. I remember finding your blog right after she was born while I was on hospital bed rest waiting for my boy to come. She really is a special little girl!

lindley said...

Thanks for this! Your words are beautiful and I'm embracing them tonight! I've had the same experiences with Way out and about! I've never received any harsh or negative comments, but only positive and adoring and loving ones! Way is treasured by our family and friends, but is the super star out in public. Sometimes (don't tell my other littles), I feel bad for them when away gets all the attention! 😉 they are still young, but I think they pick up on it! All of that to say, I'm thankful for the positive responses and feel so very blessed!
Although he's still 2, not for much longer, we aren't as developed as Lily was and have some bigger delays in the gross motor and oral areas. I'm trying to breathe and trust and give it all to the Lord! All timing is the Lord's!
Just wanted to say---love this and your heart and your sweet family!
Xoxo from the South!

Anniken said...

Just wondering... Could you get therapist When you are homeschooling? And why/why not do you get it? Do you think you might miss out on some smart tips/methods by not have differensiert type of therapist? Any thougts on how you will hommeschool her? Different course than the other kids? Sorry for all the qustions... Hope you will write about it...

Liz said...

That last part brought tears to my eyes. I'm so happy that she's doing so well!

I have to say, I enjoy your blog so much! I love your perspective on parenting. I hope you'll write more about homeschooling lily as time goes on! My daughter is a year younger and I'm not sure yet what will be the right fit for her education.

Cindy said...

Oh my gosh, this is such a great post! I'm crying and smiling and laughing all at the same time! What a fun, silly, beautiful daughter you have!

Danielle said...

Can't read w/o crying... all those old words... but ooo she is a gift.. .such a gem... such a love... Shane's best friend... WE LOVE YOU LILS!

The Graham Family said...

I wish Beatrice and I could just hang out with you all day! LOVE this post and identify with ALL of it. Love the update on Lily. She sounds like quite a spunky little girl and doing wonderfully! :) Her and Bea could get into some trouble for sure!

The Magnificent Seven said...

Love, Love this post! Crying happy tears!!

Jennifer said...

What a beautiful post! How wonderful to look back on your first words about Lily and see how they have been fulfilled. She is so loved! Thanks for sharing your wonderful family with all of us.

ahoy.jenni said...

Nice! A good read, I get all that!
I've only had good experiences with my kids too (both have Ds). I'm impressed that you home school, I am thinking of doing it for my daughter when she reaches high school. BTW your Lily looks like such an old soul! I don't know if that stuff is true, but she just looks like she has ancient knowledge, know what I mean! :-)

MomToThemAll said...

What a beautiful blog post!! Lily is precious!! Thank you for sharing:)

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