Thursday, April 10, 2014

It's not too soon

"Is it too soon to laugh?"

I was carrying a very wet Roo. Not because he had gone swimming. Not because I had just given him a bath. No, Roo was wet because I had just pulled him away from the toilet, where he was elbow deep in splishy-splashy fun. He was having a blast. I was not.

"It is too soon to laugh?" my husband asked.

I glared at him. And then burst out laughing.

I remember when Roo was first diagnosed, and I thought we would never be happy again. I remember thinking that we would pretend to be happy for the sake of our kids, but we would constantly have a cloud hanging over us.

Our lives have so.much.joy.

Not only have I learned to celebrate every little milestone, but now I am learning to laugh at life's little frustrations.

Like the day when Roo took off his poopy diaper and used it to paint his crib... and himself... and the blinds... and anything else he could reach. There was a moment when I opened the door and gasped, "OH. MY. GOSH!" And then there was laughter.

Or the time when he used his oatmeal bowl as a hat... before he ate his oatmeal. And there was nothing to do but giggle and grab a sponge.

Or the countless times that I discipline him and he responds with a silly look, or turns and scampers away yelling "RUN!" And I just can't help but laugh. (OK, I might need to work on that one, if I ever want the kid to listen.)

Because here is what I am learning... I am never going to look back and say, "I wish I had spent less time enjoying life. I wish I would have yelled harder, held more grudges, been more frustrated." No, I want to enjoy every single moment of this journey as much as I can.

So can I give you some advice? If you're ever in a situation where you think, "Someday I'll look back on this and laugh"... just go ahead and laugh.

It's never too soon.

Friday, April 4, 2014

Roo, 4 years later

When Roo turned 1, I made a video called “Down Syndrome, 1 year later.” I posted it again yesterday. I love that video.

And now as we celebrate Roo’s 4th birthday, I find myself wanting to give you another “State of the Zoo” address. But the title “Down syndrome, 4 years later” just didn’t seem right. This isn’t about a disability. This is about 1 amazing child, and the work God is doing through him.

So let me tell you a little bit about this 4-year-old who lives in my house.

He is incredibly sweet. Every morning when I walk into his room he says, “Hi, Mommy” in a soft little voice, trying not to wake up his big brother (who is invariably dead to the world). When I reach to pick him up out of bed (Yes, he’s still in a crib. Don’t judge me. I’m working on it.), he grabs my face with two hands and plants a beautiful kiss on my cheek. This is usually followed up with kisses to my shoulder and arm as I carry him to the changing table.

He is incredibly ornery. In fact, “incredibly” seems insufficient. “Ornery” seems insufficient. When we discipline him, he tends to respond one of three ways: 1-with a prolonged look of consternation, after which he decides, “OK, fine. I’ll obey. But only because I don’t really want to do whatever wrong thing I was doing anyway”, 2-with the same prolonged look of consternation, after which he decides, “Whatever. I’m cute. You won’t be mad for long,” and continues to do whatever it is you have just disciplined him for, or 3-by doing something completely ornery but so stinking cute that you have to walk away to keep from laughing—like making faces at you while you are trying to stare sternly into his eyes. Also, when I tell him to get out of a room (like my office, the pantry, the bathroom, etc), he will pause for a moment, then run away yelling, "RUN!!!!!" So he technically obeyed, while somehow making it out like he's being tortured by a monster and must get away. Or.ner.y.

He talks ALL.THE.TIME. We seriously do not have a moment of quiet from this boy, and it is wonderful. He still babbles in his own private language a lot, but he also has a ton of real actual words. Apparently he is much quieter at school, and after receiving his IEP report from the speech therapist that said she was hearing about 15 independent words from him (words that he spoke on his own, not just repeating what someone else said), I decided to make my own list of the words and phrases that he says regularly. The therapist’s goal was to get him to 50. So far I have come up with NINETY-THREE, plus some animal sounds and other noises. Next week I will share the list with you, because it is just so darn exciting. :-)

He loves music. LOVES music. Sing him a song, and he will start to catch on almost immediately. I have caught him in the grocery store, singing along with whatever is playing in the background, and think, “Where on earth did he learn that?” He especially loves “Jesus Loves Me”, “Happy Birthday” and “Let it Go” (from “Frozen”), but there are many, many others that he knows and sings. Far too many for me to list. Oh, but one bears mentioning: “What does the Fox Say?” If you ask this boy what a cow says, he won’t know how to answer you, even though he knows that cows say “moo.” The same if you ask him what a dog or cat or horse says. (He has trouble understanding questions.) But if you say, “Hey, Roo, what does the fox say?” He will answer emphatically, “Ding-a-ding-ding-ding-ding-ding!” For real. It is fabulous.

In case you need a visual reminder of his love of music, check out his singing skills here…
 

And his dancing skills here…
 

He is a runner. This is a somewhat serious issue of concern for me. (Dear Lord, thank you for this boy’s independent spirit that I know is going to be an attribute someday… but could you reign it in just a little? Thanks.) Because of this, his classroom is the only one in the school where you will regularly find the door closed. It has also gotten him into trouble at church (and we go to a big church with multiple additions that can be a bit harrowing to navigate), where he has (to name a few) shut himself into a classroom and no one knew where he was for forty-five minutes, run out of the classroom while other parents were coming to pick up their kids (fortunately, I arrived just then, so I was able to snag him!), and taken off down a hall without our realizing it—and we caught him just as he was trying to push open a door to a staircase that could have taken him to any number of halls (or outside). This is scary business for me. It also means that I have developed a bladder of steel, because heaven forbid that I need to pee while we’re out somewhere.

He is not totally bald. Don’t let the pictures deceive you. The fact is, he has three hairs on the right side of his head. Mr. Fantastic wants to cut them. I think they’re adorable. Also, his eyebrows and lashes are growing back, which makes us wonder if the hair on his head will grow back as well—and wonder if we really want it to. I mean, he really does rock that bald head.

He is delightfully small for his age. I recently tried some 3T clothes on him, and they are still just too big. At his most recent doctor’s appointment, he weighed just over 27 lb. (An average 4-year-old weighs 40 pounds.) To be honest, I think this works in our favor, as I think it helps people to be more patient with him. They don’t expect him to behave like a “typical” 4-year-old. Well, at least some people don’t. At other times, it’s hard for people to understand that we are teaching him boundaries and social expectations and what is or isn’t appropriate, but it just takes him longer to get it. Which leads me to my next point…

He needs to work on sharing. A lot. Is Roo playing with a toy and you want it? Tough. Are you playing with a toy that Roo wants? You’d better watch your back. The other day we went to the zoo, and we were the only ones watching the sloth bear. Then another lady came up to the exhibit and stood at the far end of the glass. Roo ran across the front of the glass and tried to push her away. Again, please don’t think that I tolerate this behavior—I do discipline him, for real. But it’s just such.a.process. His stubbornness + his orneriness + his poor short-term memory = the need for much patience. We don’t do many play dates, and the ones we do often end in tears—for me, not him. Between his tendency to run off and his tendency to demand/take whatever he thinks should be rightfully his, I have to watch him like a hawk during all social situations, and it wears this mama out.

He loves school. He gets so excited to get on the bus every Tuesday and Thursday. I haven’t had many opportunities to visit him in his class, but he was having a blast every time I have been there. And I *think* he is better behaved there than for me. You know the above social issues I mentioned? I don't hear about those from his teacher, so I take that as a good sign. (In fact, when I visited last week, he immediately climbed up on the table. When they told him to get down, he did… and then threw himself on the ground and started to scoot along like a snake. They assured me that he has never done that before, which I found funny, as those are both regular occurrences at home.)

He enjoys reading… on his terms. His favorite books are Five Little Monkeys Bake a Birthday Cake, Five Little Monkeys Jumping on the Bed, and Brown Bear, Brown Bear, What do You See? Oh, and now a pop-up book that he got for his birthday. Try to read him anything else, and he will slam it closed on your fingers.

He will finally sit still for a television show. Until the past 2 months, this was not the case. He had ZERO interest in the TV. Not that I want my kiddos sitting in front of the tube all day long, but… well, come on. A tiny bit of a TV break every now and then is kind of nice. Somehow, though, he discovered a show called “Paw Patrol”, and he is enthralled with it. Also, he has seen “Frozen” approximately a bazillion times, and will still sit through an entire showing. Actually, that’s not true. He gets up and dances to every song.

He LOVES his brother and sister. Once I’ve had my good morning kisses, he turns his attention to his siblings. First he calls for Monkey. If Monkey is still asleep (which he usually is), Roo climbs into his bed to wake him up. Then he needs to check on Lamb. When we pick them up from school, he starts calling for them by name as soon as we pull in the parking lot. When they practice the piano, he sits in the chair behind them and babbles off commands, or counts random rhythms for them to follow.

He wants everyone to be happy. He can be wary of strangers coming up to talk to him (especially women—he absolutely LOVES men), but show him someone with a frown on their face and he feels the need to fix it. And the less interested they are in him, the more determined he is to make them smile. He will bellow out, “Hi! Hiiii! HIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIII!!!!!” long after the unhappy person is out of sight, or make funny faces at people who are ignoring him in Walmart. If someone in our family is grumpy or sad, they immediately become his project, and there is no rest until he has elicited a smile or laugh.
He is irresistible. I think that's actually why some people refuse to look him in the eye--because they know they just won't be able to resist the cuteness if they do. People at our local Giant Eagle get upset if I come without him. People everywhere we go will stop and talk to him or tell us how adorable he is. People in random places will come up to us and say, "Oh, so you're Roo's parents?" Which always leaves us wondering how he knows more people than we do. But you just can't look at that smile without being affected. It is an amazing gift.

And that is my boy. All of that and so much more. He is a delight… and a challenge. He makes me laugh… and cry. I celebrate with him… and discipline him. He is by far my toughest child… and my most joyful. And when I tell people these things, they ask, “Why?” “Why did he lose all of his hair? Is it because he has Down syndrome?” “Why does he have no sense of danger? Is it because of his disability?” “Does Down’s make him more ornery and stubborn, do you think?”

I spent a long time being uncomfortable with those questions. (They are perfectly reasonable questions, by the way. Ones that I myself would have asked before Roo.) Attributing all of those things to a teeny tiny extra chromosome never sat right with me. No different than people telling me, “People with Down syndrome are always so happy!” (There’s a whole zoo full of people who witnessed me pulling Roo off of the carousel who could attest to the lie in that!) It’s just too simplistic.

So here’s my answer… It’s Roo. He does and is and loves those things because he is… Roo. God gave him desires, strengths, challenges, talents, weaknesses—and an extra chromosome. None of those things can be singled out, separated from him, because all of that makes up Roo. And that is pretty incredible.
 

Thursday, April 3, 2014

Throwback Thursday, Roo style

Good morning, bloggy friends! In our continuation of the Week of Roo, I am doing something I have never done before: participating in Throwback Thursday.

I made this video for Roo's first birthday, right when the fog of my depression and sadness (yes, two separate things, trust me) of his diagnosis were starting to clear. I was just seeing the light. I was just beginning to grasp that he wasn't great in spite of his extra chromosome, but with it. (I don't want to say "because of" it--I think there are many, many great things about that boy and I don't think it's fair to attribute them all to Down syndrome.)

So here is my TBT for my baby Roo...


Come back tomorrow for a full update on where we are today. :-)

Tuesday, April 1, 2014

Celebrate Good Times

It is day 2 of "The Week of Roo", and this morning I just want to share a few pictures from The Big Day.

We'll be celebrating with our extended family over the weekend, but tonight the grandparents--my folks and my mother-in-law--came out for dinner and a mini-party.



If you saw the video I posted yesterday, you may have guessed that my little guy enjoys the birthday song. And that he knows what to do at the end. Months ago, he started "blowing out the candles" at the end of the song, but this was his first time to do it for real. (Well, technically it was his FOURTH time to do it for real, but this was the first time since he started singing the song and pretending to do it.) I wasn't sure if he would really understand what to do. He did.



He also knew what to do after the candles were done.




Earlier in the day, Roo and I had run to the grocery store, and he saw the balloons. And one even said, "Happy Birthday!" What were the chances? It was like a sign. I had to buy it, right?



It was quite possibly the best $4 purchase in the history of ever. He.was.THRILLED.

And what is a birthday celebration without presents?



He had no trouble knowing what to do with those, either!



He immediately needed to read his new books. And Nana was happy to oblige.



It was a fun night. And then it was bedtime. For everyone. :-)

Thanks for indulging me a little with all of the photos for the past couple of days. Tomorrow, more of a real update on Roo. :-)

Monday, March 31, 2014

4

Four years ago today, I embarked on the most incredible journey of my life. And I didn't even know it.



Four years ago today, our family was joined by a teeny tiny miracle. Just 4 pounds, 2 ounces.



I didn't know that this was an extra special miracle. I thought it was your run-of-the-mill miracle--amazing, but no different than the miracles that all moms and dads bring home from the hospital.




We didn't find out for almost three months. That our baby Roo had, in that tiny little body, an extra chromosome in every single cell.



But here's the crazy part: we thought it was bad news. We didn't really get it. We cried and mourned.




We prayed for a miracle. And it was already right there in front of us.



We watched Roo grow and change, and we began to accept Down syndrome as a part of our lives. We knew we would be OK.



We saw Roo learn new things, and we celebrated. Every milestone--no matter how small--was a joy.



We worked relentlessly with Roo on things--life skills, stuff we thought was important. How to sit up, stand, walk. How to hold objects, feed himself, drink from a cup.



We learned that the harder you work for something, the sweeter the victory.



And then there were the things that Roo didn't need to work for, things that came naturally to him.



We realized that Roo had the uncanny ability to light up a room when he entered. The absolute joy that he emits (along with a hearty dose of orneriness) draws people in.

`
We saw him go out of his way to bring a smile to someone's face when they were upset.



We observed him tackle each new challenge willingly, but without desperation or fear. He wasn't upset or worried when he couldn't do something. He just kept trying.




We began to understand that we could relax. We stopped worrying so much about the outcome and began to embrace the journey.




And somewhere along the way, we realized that we had changed, too.



We no longer simply accepted Down syndrome. We became thankful for it.


Because no matter how much we teach Roo, he teaches us more.



When you reach the proper age
I will teach you to read and you can turn the pages
How to dress and tie your shoes
Your one plus ones, and your two times two's
And you'll teach me
Of hearts and dreams
And all the most important things
And all that I have lost along the way
And I can't wait

--Sara Groves, "I Can't Wait"



Happy 4th birthday, my dear sweet baby Roo.




Friday, March 21, 2014

World Down Syndrome Day



It's World Down Syndrome Day!!!!

March 21 (3/21) is World Down Syndrome Day because individuals with Down syndrome have 3 copies of the 21st chromosome. Pretty cool, eh?

Let me be honest with you here... in 10 days someone veeeeeeerrrrrrrrrrrrrrrrrryyyyyyyyy special to me will be having a birthday, so I am saving a "big" post for that. But I didn't want to let this day slip by unnoticed.

So today I want to ask you... what do you think of when you hear the term "Down syndrome"? Or the term "disability"? Or "special needs"?

Because I have to tell you...



Four years ago...



THIS...



is not what I pictured.



I had no idea...



just how...



AWESOME...



it could be!



Happy 3/21!!!!!!!!!!!! :-)


 

Monday, March 10, 2014

Bowling (with Roo) for Dummies

Yesterday we met up with some friends after church to go bowling. It is the first time we have been bowling in 2-3 years! Yikes! How are my children going to have a normal childhood when they only get to bowl once every 2 to 3 years?!?

Anyway, this was Roo's first bowling experience, and it definitely taught me some important life lessons. Here they are, in no particular order...
  • DON'T go bowling at lunchtime.
  • DON'T go bowling at nap time.
  • DO get Roo his own lane, so that he doesn't have to suffer the indignity of waiting for his turn. Failure to heed this bit of advice will result in wailing, gnashing of teeth, tantrums, and other gentle reminders that he prefers his own personal space.
  • DO grab the lane next to two special needs care providers. They will love him to pieces, and will even go play arcade games and win him a ball to play with, should you ignore the above rule and the poor child has to wait for other people to bowl.
  • DON'T press your luck. He may seem to settle down toward the end of the first game, but don't be fooled: starting a second game will only begin a new wave of tantrums and squirming.
  • DON'T forget your running shoes should you decide to let him "walk it off" for a bit, or in case some nice person gives him a ball that he then throws and chases around the bowling alley for the better part of an hour.
  • DO dress for summer. Wrangling and chasing Roo all over the establishment will be the best workout you've had in weeks. A long-sleeved shirt, sweater, and jeans will just be overkill.
  • DO go with caring and patient friends who will put up with all of the above.