What I Love Most About Down Syndrome

After I found out that the August baby in my belly was a boy, I couldn't help but think: Oh no, he might struggle in school. You know what they say about August babies! I might have to hold him back a year.

I started reading these articles that talked about how boys mature slower than girls and that the most successful people in school are generally born in September. I remember even talking to friends about my concerns. When I look back on all of that now, I can't help but laugh at myself and the needless fretting I used to do. Of course the fretting continued once I found out Elliot had Down syndrome, but suddenly it was no longer about his chance of academic success. It was about his inability to finish bottles, his heart defect and his future.

Which brings me to my point today: Do you know what I love most about Down syndrome? I love that through Elliot's 43rd chromosome, I have learned to appreciate every single step along the way. I have learned that Down syndrome is a gift that God has given me that allows me to see life through a different lens. No longer do I feel the pressure to be perfect. No longer do I feel like I'm competing in this big race.

Watching Elliot learn how to roll over, eat, sit and get up on his knees is a humbling experience. Through each of his milestones, I see God's work. I see God's hands hovering over my sweet boy. And the thing is, God works in every life whether you acknowledge it or not. When Adele hit her milestones, God was working and hovering too. It just all happened so fast, I didn't notice. Having a child with Down syndrome gives you the opportunity to pause, to celebrate, to appreciate, to savor and to learn.

When Elliot sits up tall, I go on an emotional roller coaster. I have to hold back my tears at times from the gratitude I feel not only because of a milestone checked off, but also at this gift God has given me. God is still working on me. He always will be, but I am so thankful that now instead of worrying about whether my 3-year-old can write her name or get frustrated over my 1-year-old wearing size 3-6 months, I can pause to breathe in the moment. I can celebrate hard work paying off. I can appreciate long-awaited milestones. I can savor my children's childhood in a way I never dreamed. I can learn what God wants for my family.

As I think back to that mom one year ago whose world was turned over, whose eyes were burning with tears, whose so-called plans were dashed, I just think about how far God has brought me. I never dreamed I would thank God for Down syndrome, but I do. I thank God for picking me for this journey and for allowing me to have the key to life shown so blankly in front of me.

My Apologies

My perfect Elliot,

It was late Monday evening when Dr. Ball came into my hospital room. We knew you had to come out within 24 hours and we had to decide between that night or the next morning. I had a cold grilled chicken sandwich and chocolate chip cookies staring me in the face that I desperately wanted to eat. My nerves were on fire. I was so scared you would be six weeks early, but right then your dad and I discussed how 7/7/14 had a nice ring to it. We looked at Dr. Ball and said let's go for it.

The rest of the night is a blur of operating rooms, beeping machines and hushed voices. Your dad hovering over me telling me you had Down syndrome. Unanswered texts, missed calls. Finally falling asleep.

Over the next several weeks, months even, I dealt with many fears, questions, doubts. I learned to find happiness and comfort in the small things. God has sure worked overtime on my heart the last 365 days and I am grateful. Those early days with you, I was terrified and I cried... a lot. Looking back, there are few a things I want to apologize for.

I'm sorry for grieving over you those first couple of days. While I know that grief was a natural human reaction, I wish I could look back on how joyfully I received the news. Instead, I was emotionless, trying to stay calm so that my blood pressure wouldn't rise and that I could leave the hospital. When I went to see you in the NICU for the first time, I looked for all of the markers the doctors said pointed toward Down syndrome instead of looking at how adorable you were. What I failed to see were all the markers that proved you were a fighter. You didn't need oxygen. You were quickly out of your isolette. You grew stronger every minute. 

I'm sorry for basically yelling at the hospital chaplain that came to see me the day after you were born. He was the first person I saw the next morning and I think there was a part of me that hoped I had heard wrong or that I was dreaming the night before when I learned about your diagnosis. That if I just didn't see anybody that maybe I could just hang on to my old life. When the chaplain entered my room, it felt like a punch in the gut. Seeing him made it real. Oh goodness, they're sending the chaplain in to pray with me, he really must have Down syndrome. I just wasn't ready to face it yet, so I asked him to leave before he ever said a word. He politely obliged and said that he would pray for you. I wish I would have prayed with him because that's exactly what I needed that moment.

I'm sorry for worrying about your sister. In those first weeks, I felt bad for your sister. We were going back and forth to the NICU leaving her at daycare or with friends. I felt terrible that she was without us, without you. I constantly fretted over her future, worrying about how she wouldn't have a "normal" sibling relationship, concerned that she would ultimately become your caregiver one day, anxious over whether she'd have to endure people teasing you. I came to realize though that God didn't only choose your dad and I, but your sister too. He knew he would have to give you a sister with a cheerful heart, quick wit and tough-as-nails attitude. But he also knew that she needed you. That you would teach her compassion and patience. That because of you she will know at an early age what truly defines success, what truly is the heart of life. You two are the perfect match!

I'm sorry for being impatient. I thought patience was a virtue that I possessed and I'm learning that maybe I was wrong! I'm sorry for wishing you'd get out of the NICU sooner, roll over sooner, eat sooner. I'm sorry that here we are at a year, and I'm still wishing you'd sit up sooner. I can promise you though that I'm learning every day to accept your timeline and your pace. I'm getting better about living in the moment and meeting you where you are.

But through it all, Elliot, I can tell you that after spending an entire year with you, I am not sorry that you have Down syndrome. I have grown to love your extra chromosome because it makes you the perfect, smiley, loving, opinionated little boy that I have the privilege of calling my son. Watching you grow up this year, I have felt a mix of pride, joy and thankfulness at each of your accomplishments from the first bottle you finished in the NICU to sitting up for 30 seconds while playing with a toy. Seeing how loved you are by family, friends and neighbors has been humbling. Hearing how the ladies in the church nursery fight over who gets to hold you warms my heart. Spending time as a family with you our youngest member (but probably the mightiest) shows me how blessed we are that you are here - that God picked us. That God knew that we needed you.

Happy birthday my sweet son. I have more love in my heart than I ever thought I could hold. Thank you for bearing with me.

-Your Mommy

The Day I Threw The Squash

I threw a fit today. Yes, a raging mom fit that ended with me crying into a peanut butter sandwich while my toddler looked on. Not my best moment.

When I started documenting our life with Elliot, I told myself I would be transparent - that I would share our highest highs and our lowest lows. I've done a great job at showing off Elliot's milestones, his smiles, our unending love for him, but I have failed at talking about the hard days. Maybe it's because days like today are few and far between. Maybe it's because I want to focus on the joy. Maybe it's because I'm embarrassed that there are days when I feel inadequate. Maybe it's because I don't think anyone out there would understand.

No matter the reason why I avoid the tough subjects, I promised myself I would for two reasons. First, I wanted any other new moms of babies with Down syndrome to know they were not alone. But more than that, I wanted people to see what a God-given joy that a child with Down syndrome is and to tell the story about an ordinary couple. A couple that while they have flaws still try their hardest to carry out God's will for their family. The story about a woman who after she throws a mom fit finds herself on her knees asking for forgiveness, seeking guidance and giving praise to the One who has given her this platform.

Elliot's eating had almost become a non-issue. He was eating with us at meals, decreasing his bottles. Everything had finally come together. I noticed yesterday that mealtime was met with much less enthusiasm, but he still ate. Then today's lunch happened. Elliot was all giggles until I strapped him in to his seat. He immediately started screaming and completely refused his food. I pulled out all the bells and whistles. The Nuk brush, the mum-mums, the messy eating. He wanted none of it. So I did what any other normal mom would do. I threw the pureed squash across the table, duh!

Then the thoughts started flooding in. Why are we backtracking? There are other babies his age with Down syndrome eating table food and drinking out of sippy cups! And why won't he sit up? Am I doing something wrong? Am I not doing enough? What if he really is going to be low-functioning and not potty-trained until he's eight? What if? What if? What if?

That's when the tears started flowing into my sandwich and I heard a little voice say, "Mommy, maybe he just wants his bottle." Then through my tears, I snapped at Adele, "Because Adele, he needs to eat real food!" Again, not my finest moment.

I cleaned up the mess, apologized to Adele and reluctantly gave Elliot his bottle, which he downed. Once they were napping, I ate a brownie (obviously) and prayed (and cried again).

I'm a pretty patient person, but for some reason, I just lost it today. On days like this, I find myself asking the dreaded "why me?" I hate when I do that because I know the answer. God chose me. He chose me to be Elliot's mom. And even though there are times I feel like I am failing miserably, He is right beside me guiding me along the way.

A couple of weeks ago, I was reading in Genesis about Noah and the ark. What stood out to me this time wasn't the ark or the animals or the floods - it was that God chose Noah's family to carry out a purpose. When the rain stopped, Genesis 8:1 says, "God remembered Noah." That just stuck with me. God didn't forget Noah and He's not going to forget me either. Though sometimes I might feel like I am drowning in the flood waters, God remembers me. God has a plan for my life and for my family.

When you're living in the moment, it's easy to forget the big picture. It's easy to forget that one day I'm going to have to tell Elliot that that's enough pizza. It's easy to forget that one day I'll miss those days I didn't have to chase him. It's easy to forget that God has a plan for me.

God, thank you for your patience with me even though I acted like a child today. Thank you for choosing me to be the mom to these two adorable kids. I pray that I do a better job at remembering you just as you remember me. I pray that when I feel the tears coming on that I look to you and your promises.

So, I'm taking a deep breath as I hit publish on this post as I admit to the world that I threw a fit. But to all the moms out there that find themselves in a desperate moment, you are not alone and God remembers you always.

Father's Day Thoughts

It was not long after Justin and my first date that I realized I was going to marry him. He challenged me, he made me laugh, he opened doors for me, he went to church with me... I could go on and on about all the boxes he checked. I would daydream about our life together and I always envisioned how he would be as a father. I saw him working in the lawn with his son running behind him. I could see him out on the tennis courts with our kids practicing their backhands. I thought about Justin teaching our daughter how to drive one day. I could see him first row at the recitals. It all played out in my head.

Well here we are, nearly eight and a half years after that first date and Justin still challenges me. He still makes me laugh. He still opens doors for me. And, yes, he still goes to church with me. Every daydream I had about us keeps coming true and then some.

You see... Justin is all of the things I envisioned as a dad. When Adele was a newborn, he took turns waking up with her. He researched all of the baby contraptions and bought the best he could find. He cheered her on as she took her first steps. All of those were good things, but when Elliot came around, I realized just how exceptional a father he really was.

 

My daydreams were picture perfect, but what I have seen in the last year has been so, so real. The kind of real that brings happy tears to your eyes and makes you never forget to thank God. The kind of real you actually have to pinch yourself because you can't imagine anything this divinely wonderful happening to you.

While I'm sure that one day I will see Justin working in the lawn with Elliot running around him, what I've seen this year is a dad that is so much more. I've seen a daddy that rushed to the NICU to bottlefeed his premature baby while mom was still in recovery. A dad that meticulously labeled and stored pumped breastmilk while Elliot was too weak to eat. A dad that used his lunch breaks daily to come see his boy in the NICU. A dad that has made every single cardiologist and specialist appointment no matter the time of day. A dad that through it all, still reads bedtime stories to his daughter every night.

But most importantly, I've seen a dad on his knees in prayer. A dad who while his expectations were altered, picked up the pieces God gave him and stood strong in his faith. A dad that is completely and deeply in love with his kids no matter the amount of chromosomes they have.

I've told Justin many times this year that I can't imagine doing life with anyone else. And that's true. Justin makes me a better person, a better mom. So, happy Father's Day, Justin. You are loved. You are appreciated. Thank you for all you do for our family!

PS... I also have to throw in a shout-out for my dad and Justin's dad. What awesome men they are! How blessed Justin and I are to have the dads we have. Adele and Elliot definitely have the best grandfathers ever!

Five Jobs I've Learned to Tackle

I love being a mom and I'm constantly thanking God for handpicking me to be the mommy of two spirited kids! As their mom, I get to wear a lot of pretty cool hats - heart-shaper, teacher, hugger, boo-boo-kisser, cook, nurturer, mentor, personal shopper. While most of these hats I expected to wear as a mom, there are a few that I don't think people really talk about that I recently started thinking about.

1. Trash Collector
Why is it instinctive to cup my hands for my daughter when she spits out food she decides mid-chew that she doesn't like? She has a perfectly good napkin next to her, but for whatever reason spitting it in my hands makes more sense to her. More than that, she constantly brings me her trash. Empty fruit pouches, stickers that have lost their sticky, papers she is done coloring, broken doodads, etc. She brings me all of her trash despite my constant attempts at directing her toward the actual trash can.

2. Therapist
Are all 3-year-old girls as dramatic as mine? I feel like I am daily having to counsel her. (The following is all said behind uncontrollable tears and a red face) Daddy told me to wait until everyone got to the table to eat or I wanted to walk out the door first or This crayon broke. Everything requires a ten-minute therapy session. (The following is all said in the calmest voice possible even though some times I want to uncontrollably cry too) You aren't in trouble, it's just very important we eat as a family so we can spend time together or It doesn't matter who goes first out the door, we're all going to the same place or Adele, sometimes things like crayons break in life and we just have to learn to go on... there will be other crayons. When I found out I was having a girl, I knew I would have to mentally prepare for the teenage years because, you know, boys. Little did I know, I would get plenty of practice during the toddler years.

3. Crisis Control Manager
I majored in Public Relations. I'm happy to report I'm putting what I learned about crisis communications to good use... at home... with my kids. Step 1: Prepare for any situation. Ok, we're going to the playground for a play date today. Everyone has to use the potty/have a diaper change before we walk out the door. I have to remember to pack a snack and a change of clothes for everyone. Step 2: Be proactive if a disaster occurs: Ok, let me plan out what I'm going to say at the "press conference" with my daughter when I tell her we're going to leave the playground soon. Offer a plan of action: Adele, we have to leave now, but it's OK because we're going to go eat lunch! Step 3: Remain calm: Adele, it's OK that you spilled water on your shirt. It's just water; it will dry. Step 4: Have a plan B: OK, you really can't handle the water on your shirt? Here's the said change of clothes from Step 1.

4. Personal Assistant
Hello, I'm calling on behalf of Adele Wood. She was wondering if your daughter would like to come over to play tomorrow at 10 a.m. or I'm sorry, Elliot will be unable to attend therapy on that day, he has a pediatrician's appointment. I'm the keeper of their social calendar, the shopper of their groceries, the scheduler of their doctor's appointments. This in itself is a full-time job and requires more organization skills than I think I've ever used especially when you consider all of Elliot's needs.

5. Cruise Ship Entertainer
I always wanted to be the mom that played with her kids - the one that made lasting memories by building the forts, pushing the swings, participating in the tea parties, accessorizing the dolls. But, wow, it never ends! I mean, there's only so many times you can build a Lego tower and knock it down or dance around the living room to "Let it Go" before you start looking around for an adult to talk to. Here's the thing though... the second you stop building that tower or singing that song, the kid starts asking about the next activity and you're freaking out because it's still two hours from nap time. You learn to improvise... fast.

At the end of the day, I wouldn't trade any of it, of course. I have to admit that when their bedroom doors shut at the end of the night, it's nice to sit down with my hubby and reflect on a busy day of putting out fires, shepherding their little hearts and everything in between.

What A Difference A Year Makes

The room was dark, the gel was cold and I really had to pee. I didn't care. I had anxiously waited for this moment since we found out baby #2 was on his or her way. Justin was holding my hand as the ultrasound tech pointed out our baby's perfect little nose. The anticipation kept building as we counted the fingers and toes. Potential baby names and nursery themes were bouncing around in my mind while we waited for the news.

Flamingos would be fun for a girl since she will be born in the summer! Oh, but I LOVED that baby quilt with the bear wearing the bow tie I saw on Pinterest the other day for a boy! Ugh, but the name Alice would complement Adele so well... good thing this isn't up to me! I'd never decide!

Then after what felt like forever, the ultrasound tech said without much hesitation, but filled with excitement, "it's a boy!" I can't remember for sure, but I'm pretty sure I squealed. I would have been overjoyed either way; it was just so wonderful to finally know!

We spent the rest of the day celebrating by buying our little boy's first outfit, staging the perfect picture with our daughter holding blue balloons, and announcing the news to family over dinner. From sun up to sun down, that day was all about our sweet boy on the way.

Little did I know, that would not be the last March 21 we would celebrate our little boy.

We had no idea that day that our precious baby would be born with Down syndrome nor did we know that March 21 is World Down Syndrome Day. Earlier this week, I happened to notice the matching dates while scrolling through old pictures. There it was on my Facebook timeline. That perfectly staged picture with a date stamp of March 21, 2014, of our daughter Adele proudly holding blue balloons announcing to the world she was going to have a little brother. I couldn't believe it.

Ironic, isn't it? Poetic even?

It wasn't long after we found out we were team blue that the visions of my little boy started flooding my thoughts. We decided on the name Elliot because we thought it would look good on a campaign poster.

Elliot Wood, that's a strong name! He could run for office with that name!

We talked about how he would play tennis like his daddy, but he would have a musical side too like mommy - maybe play the guitar! We were already starting to vie for whose college alma mater he would attend. We talked about how he would probably get in all kinds of trouble as a teenager, but how funny it would actually all be in retrospect.

Every time I saw a little boy in public, I'd turn to goo thinking of my little one on the way. Life was perfect. It was turning out exactly how I had planned.

When we found out Elliot had Down syndrome after he was born, my world stood still for a moment. I grieved the little boy I thought I was going to have. This wasn't a part of the plan.

Justin and I have worked so hard to get where we are. Two college degrees, two believer's baptisms, two steady jobs, two great credit scores, one adorable daughter... this doesn't fit. How did we get here? How do we go from all of that to having a premature baby with Down syndrome in the NICU with a feeding tube and a heart defect?

I was scared. I was overwhelmed. I was unprepared.

I am embarrassed by those initial thoughts. But they were real, and most importantly, they were fleeting.

Though there are hard days still every now and then, my outlook on my little boy is the complete opposite from that day. I am so in love with my Elliot. Down syndrome might not have been a part of my plan, but it was a part of God's plan. And as it turns out, Elliot is the perfect fit to our family.

One year ago, I might have pictured Elliot differently, but now I know I have something, someone so much better on my hands than I ever could have imagined.

I have a fighter who pulled out his own feeding tube.

I have a little miracle whose heart surgery keeps getting pushed back.

I have a charmer who smiles at all the ladies.

I have a little brother who is already teaching his sister great compassion.

I have a giggle monster that thinks my face is funny.

I have a teacher who opens the eyes of everyone around him.

I have a son that I am proud of.

You might never see Elliot Wood on a campaign poster (or maybe you will, who knows!), but Elliot will do great things in his life. He will walk. He will go to school. He will read. He will play tennis with his dad and sing songs with his mom. He will have a job. He will love and be loved. He will change the hearts of those he meets.

As March 21, 2015, approaches, I am filled with excitement. I am proud to be a part of this global community that will join together to celebrate our kids and continue to open doors for children and adults with Down syndrome. I hope you'll join in on the celebration too!

What a difference a year makes.

Ditching the Mental Checklist (For One Night)

Every night at about 7 p.m. I find myself racing against the clock. As the minutes tick by, I'm marking off my mental checklist.

OK, if I can get the kids to finish eating by this time, I can get the toddler in the bath at this time, which means she'll be in bed at this time. We're totally only reading one bedtime book tonight though... it's been a long day and I've still got a baby to feed and put to bed and wash all the bottles and clean the kitchen and just RELAX and watch some HGTV and eat that KitKat bar I've been  strategically hiding all day. I just hope said toddler doesn't decide to play a game of 20 questions as I turn off her light.

I'm totally aware of the run-on sentence above, but that just gives you a quick picture of what's going on inside of my head. I've had enough conversations with other moms to know that I am not alone in this battle.

So tonight as we drove home from dinner with friends, I sat there preparing the mental checklist. Debating whether or not the toddler really needed a bath. I mean, did she really get all that dirty playing outside? (The answer is yes, she really did get all that dirty playing outside). Well, at least we've already eaten. Maybe we can do a quick bath... no toys, no inside jokes, no fun. Strictly business. Yes, that'll be great and she can be in bed and I can have my date with Chip and JoJo and my hidden stash of candy in no time!

That was the plan. So I put said baby in his swing and threw said toddler in the tub. I told her we were doing a bath as fast as we can tonight. She looked up at me with her big blue eyes and asked, "why?"

Now anyone with a toddler knows that "why" is simply part of their vocabulary. A common word used to go down the rabbit hole. Only this time... she wasn't trying to be funny... she genuinely asked it. I was about to just say, "it's late, so we need to hurry."

But then I thought... well, why? Why couldn't I give my daughter a little extra time just one night? Why couldn't I just relax and forget about the minutes ticking away for one night?

So I altered the plan. She played in her bath until her fingers were wrinkly. We danced to "Shake it Off" after putting on her pajamas. I blow dried her hair. I painted her toe nails in a hue of her choice. And, when it came time to crawl into bed, we read THREE books and sang THREE songs. We even made shadow animals with her lamp. Then as I turned off the light instead of getting huffy when she inevitably said, "Mommy, I want to ask you a question." I said (with a smile on my face), "yes?"

"Mommy, did you know that tickles make us laugh?"

I said yes, I do and with that we said our final good nights. I checked the time for the first time since before I put her in the bath. 9:15. A whole 45 minutes past her bed time. A whole 45 minutes well spent.

I'm sure tomorrow my checklist will return, because let's be real, mommy's gotta have some me-time, but for now I'm going to the relish the fact that I have a red-toe-nailed-polished-happy little girl tucked away in her bed and a sweet baby boy asleep in my arms instead of his crib while I type this post.