Saturday, October 22, 2016

That Moment When You Realize Your Plan Is Not Better Than God's

Have you ever have a moment where you stop and say "Oh okay, God. I see what you did there."?

That happened to me today in a big way. This morning I went to Addison's Parent Teacher Conference at school. I realize that doesn't sound like the usual buildup to a dramatic AH-HA moment, but hang with me here.

You see, this past spring/summer I was a woman on a mission- to sell our house and move over one school district. We did some really big renovations (which honestly needed to happen anyway), put it on the market, worked our little hearts out to do a million showings while keeping the kids alive, fed, and mostly clothed.

And in spite of our very best efforts, it didn't sell. Which was surprising considering how gorgeous it became with the renovations and how much a sellers market it is here. Was it perfect? No. But it was a good buy, and we knew it (no bias whatsoever here lol). It was so puzzling and obvious at the same time that God simply said "No".

(Not to mention- the entire time it was on the market, there wasn't one house that we wanted to buy. Not one. We couldn't agree on a single house. It was obvious that this "no" was a firm one on multiple levels.)

Feeling a bit defeated, we pulled our house off the market, but within days something strange happened. A deep contentment just came over us. We were supposed to stay here for at least another year. Why? We didn't know. So we set plans in motion to add just a bit more room via a finished basement (and another bathroom!) and settled down to just enjoy our renovation work for at least a year before we tried that insanity again.

And honestly- I have been LOVING the renovation work. It has been such a joy to stay here and take advantage of all my favorite colors and things (hello new kitchen!). And according to Instagram, I have been filling the walls full of some cute stuff, some helpful stuff, and some cannibalistic stuff. (You can't win 'em all.) It's been nice to "move back in", and it was nice to have the motivation of selling to do things around the house we had been meaning to do for years. Now we get to enjoy our hard work.

But.....every time I thought about our attempts to sell, it stung a little. A lot. It felt like a failure. So much hard work with not the outcome we wanted. Why? I didn't know.

Until today.

I walked into Addison's Parent Teacher Conference with pretty low expectations. I know Addison can be a bit stubborn, and I wasn't sure how she was performing at school. It's tough to get a good read with a thirty second pickup- especially on the days I end up carrying her to the van or she tries to run off. Just not a lot of chat time.

Her teacher- let's call him Mr B- asked me if I had any questions. I said I had questions on two levels- how was she doing socially and how was she doing academically.

He launched into a report of her social progress first, and his eyes shone as he talked about Addison. I could tell right away that he was very enthusiastic about teaching Addison.

He started in on how she works hard; she is so kind to all of the other students; she is quite good about getting classroom routines down; and she delights in participating in all activities with her peers. He particularly mentioned reading group with a peer and how their reading time was just like any other reading group.

Somewhere in there he revealed that he has a 65 year old brother-in-law who has Down syndrome. His BIL was not offered the level of education, support, or inlcusion available to kids with DS today, and Mr. B has always wanted a child with Down syndrome in his class so that he can pour into that student all of the educational opportunity that his brother-in-law never got.

Wait for it...

Addison is his very first student with Down syndrome.

Somewhere in the conversation Mr. B's eyes teared up as he talked about his brother-in-law and Down syndrome and Addison and a dance party the class had the other day which ended with Addison and Mr. B rocking it out together in the middle of the room. These things all kind of blended together as his past with Down syndrome lit up his present experience with Down syndrome. The DS joy continuum through time was a beautiful thing to witness.

In that moment I got a clarity over the past year. We were NOT supposed to move because Addison needed to be in THIS CLASS. This exact class with this exact teacher. THIS was her perfect 1st grade classroom. If I were to dream up my ideal educational scenario, it would be exactly what Addison is getting. Exactly what this teacher was offering her. If we had moved districts or even to a different part of this one- she would have missed out on this incredible experience.

She is getting the education of a lifetime. Mr. B is doing everything humanly possible to keep her included with the class, to see her excel academically and socially, and to celebrate her for exactly who she is (along with her aide and SPED). When the teacher tears up a bit as he passionately speaks about Down syndrome and what it means to him and how excited he is to have Addison in his class and what a joy she is- you know you've found a good one.

And her peers- the same peers that she had last year- know her so well that they will often interpret for Mr. B or others if Addison isn't understood because she is speaking too quickly or mumbling- as she often does.  Oh and when she does have her stubborn moments, she is motivated by her peers coming alongside her and asking her to come join them and the rest of the class. They love her, understand her, and help her. I really couldn't ask for more.

You know how some parents take in book or presentation to explain to the class, "THIS IS DOWN SYNDROME. THIS IS HOW TO CELEBRATE DOWN SYNDROME"? I left feeling like this teacher and this class should come teach me how to celebrate Down syndrome. Because they are doing a heck of a good job. Addison beamed as she showed me her class today. And as I talked to Mr. B, she immediately grabbed some books and ran to the front of the empty classroom to "teach".

Oh and she can read. I found this out today. SHE IS READING AT SCHOOL. And she gets better every single day as she goes to school in this hugely supportive environment and gets treated with such fantastic student dignity and support. All of the supports that she has right now are really allowing her to thrive academically and socially like she never has before.

Sadly, Mr. B's BIL with Down syndrome is in the hospital right now, dying. If we had moved, Mr. B. wouldn't have the encouragement of Addison in his class every day during this rough time of saying goodbye. I mean really- the one year that he finally has a child with Down syndrome in his class is the one year that he is dealing with this difficult goodbye. Coincidence? He said his wife asks every night what Addison did that day, and they both smile and get such joy out of her performance that day in class.

I am kind of in awe about this, actually.

I am thankful that my hopes and dreams of a bigger house for our growing family were crushed for this year. So, so grateful.

Because this kind of education- this kind of classroom environment for Addison- money cannot buy and no amount of house awesomeness can replace.

I left the Parent Teacher Conference in tears. To hear Mr. B speak of his brother-in-law, to hear him speak of Addison, to see how Down syndrome connects hearts in ways I can't even understand, but somehow I get a front row seat to witness- this is absolutely thrilling in a way I had no comprehension of when I first got Addison's diagnosis.

This is more than CHEER Down syndrome with peppy Facebook memes and flashy pictures of smiling babies. No. This is deeper, much more complex happiness that I feel gets more and more revealed to me as time goes on. Connections, life experiences, joy, a feeling you just can't put into words.

Down syndrome community extends far beyond a matching extra chromosome. It allows a new way of looking at life- a new way of connecting- a new way of experiencing joy. I am so thankful and blessed to be a part of this community because of Addison.

I am currently sitting in my house that didn't sell with my daughter who has been sad all afternoon that she wasn't at school (because of conferences). Rain is falling outside in sheets, almost in an attempt to put out the fiery tree color surrounding us these days.

I am sitting in the Dining Room, exactly where I WASN'T supposed to be because- hello new house Dining Room? And yet this is exactly where I'm supposed to be. Exactly.

I am thankful for the "no". Sometimes one simple "no" means a thousand times "yes" in more important areas.

Sometimes I get so up in my head about THE WAY THINGS NEED TO BE and I forget that God always has a better plan. Always. (I am a slow learner on this matter and just for the record, the title of this post makes me roll my eyes at myself so hard.) My trust in him needs so much work because my amazement over this school situation probably should have been more like an "I knew it" instead of a "WOW" with a dropped jaw.

I am thankful for his better plan. And I'm thankful for his grace to me even as I fought against it.

Here's to the most awesome school/teachers in the world. And here's to a 1st grade little girl who is having the time of her life.

Tuesday, October 4, 2016

I Know A Girl Who...

I know a little girl who accessorizes with the flair of an Egyptian Queen, flaunting her strings of beads and large dangly bracelets as frequently as possible.
She loves to tease her brothers, pulling hair or stealing their stuff and just waiting with devious anticipation for their response.

This little girl kindly reads to the baby whenever the mood strikes her, gesturing wildly and articulating words on top of words and yet even more words until the story always somehow seems to make sense.

This little girl has Down syndrome.

I know a little girl who begs to cook with her mommy. She grabs the roller and rollers the heck out of the dough whenever the situation calls for it. And cheese needs to be sprinkled? Sauce needs to be spread? I know a girl.

She pouted as her mother dropped her off at school this morning, her teen-like attitude as thick as pudding, but definitely not as sweet.

Speaking of pudding, this little girl adores chocolate. I feel like "adores" might not be a strong enough word?

This little girl has Down syndrome.

When this little girl was a baby, she stared death in the face, but stubbornly clung to life, returning to us to remind us that not one single day should be taken for granted.

Her birth was closely followed by two baby brothers and one baby sister. She holds strong to the title "Big Sister" and gets quite bossy when the situation calls for it (and even when it doesn't).

These siblings (minus the baby) run around like crazy- playing in a pack. A tight knit pack where she is an equal member.
This little girl has Down syndrome.

This little girl knows all of her letters, can count to 15, is learning to play the violin, is SO close to reading, and on the days she has music class she comes home saying "Ti ti ta!" with all the enthusiasm in the world.

She makes her bed and cleans her room (ish) and is an eager table setter. Her keen eye scopes out which plates do not have spoons- detective style- and lays out the needed spoon with all the precision of a surgeon making that first cut.

She'll sit at the table at Papa's house and serve herself- her strong hand remaining steady as she pours more cheese sauce over her broccoli. And then she'll refuse to eat the broccoli. She just really wanted to pour sauce over it.

She prefers to sit with the adults and chat as the other kids run off to play. She has a lot to say and she knows that they will listen.

This little girl has Down syndrome.

I know a little girl who has a lot of friends. She comes home eagerly chatting about her day with them, and when she arrives the next day for more school- they cheer to see her.

She is quick to forgive and quick to smile and her hug is like no other.

This little girl isn't perfect. She pitches fits and get mad and makes messes (and blames her brothers for the messes).

When she doesn't like the outfit that has been picked out for her, this little girl hides it, and goes to pick out a new outfit.

Her outfit is almost always better. Or at the very least more interesting. This girl has killer fashion taste.

This little girl has Down syndrome.

I know a girl whose presence fills the the house, yet she is small for her age. Tiny, really. With hands that fit perfectly in her Little Big Brother's hands as he helps her stay safe loading the van. Her tiny feet are quick to run and jump and climb because- hello- brothers need to be caught up with!

I know a girl who has alabaster skin, rosy red cheeks, blue eyes, and blonde hair. Sometimes that hair curls when it is feeling particularly saucy. Or humid.
I know a girl whose smile lights up the world, whose frown tugs at the heart strings, and whose tears can melt the hardest of hearts. (She has been known to use these tears to work at the hard heart of her mother who withholds ice cream cones for not eating dinner first. Can you say Mean Mommy?!)

This little girl has Down syndrome.

October is Down syndrome awareness month, but what is it exactly that you are supposed to be aware of?

This could go many different ways, but my point of this post is that Addison is a person- just like you, just like me. This list, that I wrote specifically about Addison, could really describe any number of little girls- Down syndrome or not.

She has likes and dislikes. Things she's good at and things she's not. She experiences intense joy, intense pain, and everything in-between.
If you are expecting a baby with Down syndrome, I cannot in good conscience promise you that your life will be all rainbows and unicorns because of your "extra"- anymore than I can promise this to anyone expecting any baby- extra chromosome or not. I can, however, promise you that you are giving birth to a human being. A person. An amazing, beautiful soul who will change your life forever in the best possible way.

And just like birthing ANY human, you will have good times and you will have frustrating times and you will have times you wonder "Is it too late to just get a puppy instead of having a baby?" times.

But so go the growing pains of raising a human being. A person. It comes with the territory. (Believe me, this happens equally with all four of my children. Down syndrome doesn't hold the rights over these roller coaster emotions of parenthood.)

And if you are just curious about Down syndrome and perhaps want to be friendly to Addison out and about, know that she is a little girl who loves to chat, and she has parents who don't mind telling you what she just said if she talks too quickly and you don't understand her. No need to panic. Just ask!

Life with Down syndrome has incredible take-away-your-breath highs and frustrating lows...oh wait...that kind of sounds

And even though there can be frustrations, I would be lying if I didn't set something straight. The message going to new parents with a child with Down syndrome- the message of "this life probably isn't worth it" and the doom and gloom and the "life can't be happy or normal because of the frustrations this child will bring"


I can't say that strongly enough. I have experienced severe health needs and huge delays with Addison and I say as strongly as I can say it- WORTH IT. Worth every single blessed second that I have had the privilege of being Addison's mother.

I know a girl who lives life to its fullest- her laugh tickling the air and making it somehow sweeter to breathe. Her step is full of confidence, not a fear in the world.

I know a girl who gets frustrated and says, "I can't" but then when she keeps trying and trying, no smile is bigger than hers when she proclaims, "I did it!"

I know a little girl who has so much potential. She can do anything she sets her mind to. The milestones she has already achieved blow my mind on a regular basis. The sky is the limit for what she can accomplish in life, and I am honored to be on her cheer team.

I know a girl who knows its worth it to try. That all good things are worth fighting for.

I know a girl who has Down syndrome. She is my daughter. And she fills my life with joy.

Down syndrome awareness month. Welcome to October. Let's celebrate difference by choosing kindness. Getting to know the person. Celebrating life.

I'm celebrating Addison. She is the peoplest person that I know. And that's saying something. (-;

Here's to Down syndrome, personality, and chocolate- in that order. (Addison wouldn't have it any other way.)
 (Professional pics taken by Floor Three Creative)