A Mom's Thoughts on the R-word

I want to talk to you today about the word retarded (the r-word going forward in this post). I am aware that most people that still use this word are not intentionally trying to degrade my son. They are simply using a word that at some point culture deemed appropriate to say in place of ridiculous, silly or stupid (which honestly we discourage the use of that word in my home too). I was not one to ever really use the word, but it wasn't until I had my son with Down syndrome that the sound of that word cut right to my heart. Usually when people defend the use of the r-word, I hear (or read) 1 of 3 things. I want to take a moment and respectfully tell you why these defenses are flawed.

1. I'm not talking about your child.
Yeah, but you are. Whether you realize it or not, mean to or not, the use of that word diminishes the worth of my child and other people with an intellectual disability. When you are confronted with something unwise, disagreeable or outlandish, and then you describe that scenario with the r-word, you are (again whether you mean to or not) calling my son unwise, disagreeable and outlandish.

Unfortunately the use of this word has permeated our culture. I truly believe most people that use it are in no way trying to hurt me or belittle my son. But hear me now... you are. When I hear that word, I cringe. My face gets hot. I think to all of the hard work my son puts in to walk, talk and learn, and how with one word you have shown what society thinks of him. I know that sounds crazy, but it's true and you have no idea the depth of that word until you love someone with a disability.

If something's unwise, say that's unwise. If something's ridiculous, say that's ridiculous. It might take some time to phase the r-word out of your vocabulary, but you can make the decision to start today.

2. It's an acceptable medical term.
Yeah, but it's not. Health organizations have halted the use of the r-word for years now opting for intellectually disabled and in 2010, Rosa's Law was passed in the United States that replaced the use of mental retardation with intellectual disability in several laws. The vote was unanimous among party lines even. School districts as well have followed this example. The National Down Syndrome Society states that they "strongly condemn the use of the word (r-word)... Using this word is hurtful and suggests that people with disabilities are not competent."

While the use of this word was perfectly acceptable decades ago, culture has evolved and turned this word into something derogatory. It's happened before. The words moron, imbecile and idiot all used to be acceptable medical terms too in the early 1900s and I think we all know how commonplace those words are now unfortunately. So, please don't think it's acceptable to call my son's disability mental retardation... it's outdated.

3. Stop being a snowflake. It's just a word.
Yeah, but it's not. I know there is a lot of political correctness going around and I know that some people roll their eyes at it. But, part of being an empathetic human being starts with listening to people and hearing their experiences. If somebody tells you something hurts them, you can't tell them it doesn't. So if I tell you as a mom of a child with a disability that the r-word stings me, it's pretty disrespectful to turn around and call me snowflake. Which whatever, call me a snowflake, I can take that. What I can't take is taking the r-word a step further and use it to actually mock my son and people like him. That's unacceptable and the movement to end its use proves that it is NOT just a word.


So in closing, I hope you learned something and I hope that if you are someone that uses the r-word that you reconsider after reading this. It's interesting because while my son works so hard to walk and talk, he doesn't have to work at all at being a loving, happy individual. Sometimes I truly wonder, who is it that has the disability?

Photo by Erin Co. Photography

Will I ever learn to say away from comment sections?

I did something dumb this morning. We've all been there. You know that place... where you have just finished reading an article and for some reason you decide to read the comments. And then there in the comment section you see how terrible people can be when they are hiding behind their computer screens.

If you don't know, there was a report that came out this week that in Iceland 100% of babies with a prenatal Down syndrome diagnosis are aborted. They are not alone. Denmark, Netherlands and other countries are close behind. In America the percentage is still high at 67%. This morning, I was reading an opinion piece further exploring this report and that encouraged more awareness be brought to the discussion so that more women choose life. I scrolled through the comments expecting outrage at Iceland and crying emojis for all the babies who never had a chance to show the world how awesome they are. Not so. Instead I was met with comments like this:

"... if it's a personal choice to knowlingly [bring a child with Down syndrome into the world], what is society's obligation? Seems that it has implications to people outside the immediate family so it really is a bigger issue. Right now, people who have disabled children get public money to be a parent. (editor's note: Really? We haven't received a single dollar since Elliot was born. That's news to me.) That is wrong if society has no say."

"A fetus has NO awareness. Bringing a severely handicapped child into the world when you knew far before to the point of viability is nothing more than selfish cruelty inflicting unimaginable suffering to salve your own conscience. You get a bad egg you throw it away and start again."

"My taxes are through the roof because my kids' schools are filled with special education teachers, or because kids are being bussed out of district to special needs schools. The cost for 'special' children is a burden on us all, especially our children and the schools... It's too much."

That's just a sampling. The more I scrolled, the more I cried. It was like a train wreck I couldn't draw my eyes away from. I was telling a friend earlier this week that I felt like ever since Elliot was born, we've been so fortunate to live in kind of a bubble. Since I stay home, he's not in daycare and the only people we really see are family and friends who have all fallen in love with Elliot. I told her I was nervous about what public school this year will bring.

And for a moment, reading these comments, all I could think was there is going to be some parent at my kids' school that will see Elliot and only think about his tax dollars and how he's not worth it because he's "suffering" anyway. My next thought was... well, I have a lot more work to do then.

My son should not be reduced to a dollar sign. He is a little boy filled with potential. He loves dinosaurs. He loves to paint. He loves to throw balls. He loves to terrorize his sister. He gives the best hugs and is the first to offer a smile. And with the loving support of his family and an inclusive education, he will become a productive member of society. Sounds pretty much just like any other kid, doesn't he? This isn't 1960, people! The outlook for people with Down syndrome has changed. Unfortunately, perceptions have not.

Elliot is not suffering. He is LOVED beyond measure. Yes, he has health concerns we have to monitor. Yes, he has therapy appointments weekly. Some weeks it's hard. But you know what? Some weeks my five-year-old daughter and her attitude are hard!

We need to ask ourselves what gives a life value? Chromosome counts? Skin color? Academic success? Athletic ability? No, a life has value because it's a life and we are all image bearers of God.

The elderly woman in the nursing home? Image bearer of God.
The immigrant trying to put food on the table? Image bearer of God.
The African-American boy walking down the street? Image bearer of God.
The little girl with almond-shaped eyes? Image bearer of God.
The prison inmate? The CEO of a major company? Your Muslim neighbor? YOU YOURSELF?
All image bearers of God and ALL worthy of the breath in their lungs!

Hitler prescribed to eliminating people with disabilities, too, you know. And the entire world rallied against him. And I will continue to rally against that thinking by sharing Elliot's life with the world. Down syndrome isn't a tragedy, but outdated information and close-minded thinking are. It hurts my heart there are people out there that view my son as a burden. It literally brought tears to my eyes today. But, at the very least, it gives further fuel to my fire to stand for life, education and opportunities for people with Down syndrome.

Daughter of the King

I was not popular in high school. I had bad teeth and a hopeless fashion sense. I was a part of a specialty choir that dressed up in Victorian frocks and sang Christmas carols around town. Don't get me wrong, I loved it, but it didn't necessarily scream "cool." My friends and I did things like race cantaloupes down driveways for a good time. I had a tremendous group of core friends that made me feel loved and safe, but in the grand scheme of high school, I was a shy, introverted honor student that lacked self-confidence.

I've come a long way since then. Not only did I fix my teeth and learn how to dress, I also found my voice as I transitioned into adulthood. I slowly realized it's OK not to follow the trends. It's OK to be artsy. It's OK to have a few really awesome, genuine friends than a lot of fake ones.

I'm bringing up this subject because my daughter Adele is starting kindergarten this year and will soon start navigating the real world. A conversation I had with a friend the other day sparked these thoughts that follow. I confided with her that despite all of my personal growth since high school, sometimes doubt can creep in. I can run into someone from high school or be met with a new challenge and suddenly, I feel like that awkward girl again. I think to myself how did I land such a super hot husband? How am I fit to serve in the way God is calling me? How can meek, little me raise three strong kids?

These thoughts are fleeting, but they grab at me. When talking with my friend, she told me she often feels the same way and she asked me, "Are you ever scared Adele will feel how you felt?"

The truth is I do especially now that's she's starting public school. I've always told myself I'd make sure she would get braces. I'd make sure she knows how to style her hair. I'd make sure to give her every opportunity to find a sport or activity she can excel in. I'd volunteer in her classroom and be on the PTO. I'd do everything I could to make her feel loved and valued. Then as I was thinking about all of this, I realized something. None of that really matters. It's all secondary to teaching her to find her value in Christ.

Christ loved me when I was a nerdy teenager and he loves me today. Christ had a plan for me then and he as a plan for me now. Christ loves Adele and that's all she needs to know as she begins to find her place in this world. Of course, I want her to find her niche, make friends and know that her parents love her, but above all of that, I want her to learn how to be a woman of God. That's where she will ultimately find her true worth... that's where all of us can since we are made in his image (Genesis 1:27). And whether she's a star gymnast, a quiet poet or a struggling student, God loves her and has a plan for her life according to his will. It is my sincere prayer Adele learns to find peace with that and finds confidence in knowing that she is a daughter of the King.

Letting Go of Anxious Thoughts

Control. Such a hard thing to release, isn't it? I feel like ever since I had Elliot, giving up control has been a central theme in my walk with Christ. I didn't even realize how much of a control freak I was to be honest. I mean, I'd let Adele use the glue bottle on her own. I'd let Justin pick the restaurant. I had a classroom full of high schoolers who changed my desktop backgrounds on the daily and I didn't freak out about it. I didn't have a control problem, right?

What I failed to see was, sure, I didn't sweat the small stuff... but the big stuff? Health, family, the future... all of that was closely guarded. The crazy part of it is, the big stuff is the hardest to control, but there I was grasping at straws. I make no secret that when Elliot was born I went into a dark place for about 24 hours and it took several more days to fully grasp what was ahead of us. I thought about the weirdest things in that time... like would parents let their kids play with him, would Justin and I enjoy our retirement years, would teenager Elliot be able to use the men's room alone if I took him shopping? I googled things like "can people with Down syndrome drive." I was so worried at first about the future instead of what was in front of me.

It took a lot of prayer and a lot of sob sessions with Justin to teach me to tackle what I can and not worry about what I can't. So at the time, our first goal was getting him out of the NICU. Then we graduated to physical, occupational and speech therapy. And with each milestone that was slow-going, God taught me that "slow-going" was just fine. And when each milestone was met... how sweet those moments have been.

So here we are... another milestone coming toward us. Elliot is about to turn three and is all set up for public school in the fall. This is one of those moments I fretted about during those first few days. What used to be listed under "I can't tackle right now" has suddenly been moved over to the "I can" column. It's exciting and intimidating at the same time. I can't wait to see how Elliot shines, because I know that's what he's going to do.

Though I have to admit, as I was preparing for his evaluations, the control freak in me crept back up again. I poured over Facebook groups, read blogs about inclusion and researched laws. I read stories about kids with Down syndrome learning how to brush their teeth at school instead of how to read. I read Facebook comments from moms whose school districts refused to try inclusion (which is illegal, by the way). I drove myself crazy researching IQ tests.

Then suddenly I realized I was developing a chip on my shoulder. I was anticipating the school district would fail Elliot before I even gave them a chance and I was exhausting myself in the process. So there I was at 2 a.m. the morning of his evaluation stressing myself out when God brought me to my knees again.

"When the cares of my heart are many, your consolations cheer my soul," Psalm 94:19 tells us. Goodness, I love that verse. The NASB version starts with "when my anxious thoughts multiply within me." I feel like it's so easy to go down the rabbit hole of worry. Having a child with special needs brings on a plethora of anxious thoughts and they can spread like wildfire in my brain. I've taught myself when I get overwhelmed to turn off the noise and pray. Just pray. Cry if I need to. Breathe a lot. And pray.

About a week after his evaluation, I attended Elliot's first ARD meeting. I was so nervous. I prepared to walk myself into a room full of naysayers, but knew God was in control. When it came time for me to introduce myself, I pulled out Elliot's latest school photo from our church's mother's day out program. I set it up on the table so they could see his big blue eyes through the whole meeting. There was a collective "awww" when they saw the picture. Elliot can charm a room that's he's not even in!

The meeting went well. I made known our goals for inclusion when he gets to kindergarten and was met with positive feedback. He's also going to be at the same school as his sister, which is such a blessing! I truly feel that we're off to a good start. I plan to stay vigilant and on top of his IEP, but isn't it so comforting to know that God already has plans in place? Isn't it so freeing to relinquish that control? It's hard to do, but once you are able to trust God completely, suddenly those anxious thoughts drift away.

So go ahead, let go of the glue bottle. It might get messy, but God's always in control.

The Day I Got Into An Internet Kerfuffle

Let me say, I hate confrontation even sitting behind my computer screen. I don't do well in arguments. When someone has upset me, I'm the type of person that will pretend nothing is wrong until I just get over it. And if I feel like I've upset someone, I can't sleep for days. I've never been someone that engages in Internet battles with strangers and am usually the first to delete something I've posted that I'm worried might unsettle someone.

Well, there's a first for everything.

During my first two pregnancies, I immediately joined birth month groups on the What To Expect app. I loved logging in and seeing what fruit my baby was the size of that week. I enjoyed reading facts like her fingernails are growing or his hair is sprouting. I loved scrolling through discussions and "talking" with other moms due around the same time. So naturally when I found out I was pregnant with Wood Chip #3, I eagerly signed up for the February 2017 group.

For the past few weeks many posts have been dedicated to genetic testing. Usually moms are just eager to find out their baby's gender early, but yesterday someone typed something that unhinged me. To paraphrase, a woman responded to a post about genetic testing sharing that she terminated her last pregnancy because of a Trisomy 21 diagnosis and that her genetic counselor said that her baby would likely have a low quality of life and many health issues.

People, this is why there is a 92% worldwide abortion rate of babies with Down syndrome. Because there are genetic counselors out there giving outdated medical information and telling worried, vulnerable parents that people with Down syndrome have a low quality of life.

I responded to the original poster (not the woman who had the abortion) with Elliot's story and stated the facts about Down syndrome. I mentioned that I wanted to clear up some misinformation. Somehow this led to over the span of 24 hours me being attacked by a few women. I held my ground, but I won't get into specifics. Let me just say I have sat at my screen and literally cried my eyes out. And not because of anything that was said to me. But out of grief for all of those babies who will never have a voice. All of those babies who will never have the chance to prove people wrong. I cry because of all of those mothers who made a choice with false information in one hand and fear of the unknown in the other. All of those parents that will never experience the unexplainable, unmatched joy that a child with Down syndrome brings to a home.

I don't understand why genetic testing has been made into this sort of witch hunt for babies with special needs. I don't understand why so many in the medical community have seemed to adopt Hitler's views on children with disabilities. I don't understand how our culture has decided we get to choose which lives hold value and which ones don't. But what I do know is that no test or genetic counselor could have told me how loved and treasured Elliot would be. No test could have ever shown how full he would make my life or how happy we would make his.

One recurring argument in the internet exchange yesterday was that you never know what the range of abilities a child with Down syndrome would have. May I ask, how on earth is this an argument to terminate a pregnancy? All children have a range of capabilities! And what does that really mean? What if there was a test that showed your child will have some other learning disability? Or that your child will one day develop childhood cancer? Or that your child will grow up to be a convict? Or that your child will have blue eyes instead of brown? Would these be reasons to abort?

I feel all of this genetic testing though often well-intentioned (goodness, we just had it done so we could be prepared) has become a dangerous slope and is robbing the world of true diversity. There are entire countries, such as Denmark, boasting that they are close to eliminating Down syndrome. Let me be clear. You can never truly eliminate Down syndrome. It is a random, natural occurrence that happens in 1 out of 700 pregnancies, so the only way you can "eliminate" Down syndrome is by aborting every single unborn baby that prenatally tests positive for it.

I make no secret that when we found out Elliot had Down syndrome we were crushed. Down syndrome was not part of our plan. But we've learned so much since that day. We've learned that today thanks to early intervention and intentional parenting, people with Down syndrome go on to lead very full lives making friends and holding down jobs. We've learned that they can learn to live independently though most do remain at home contributing to daily chores. We've learned that most siblings take it as a privilege not a burden to care for their brother/sister once mom and dad are gone. We've learned that a whopping 99% of adults with Down syndrome are happy with their lives (I wonder what that statistic would be for typical adults). We've learned that while they do have many health concerns, modern medicine has lengthened their life span from 25 years old in just 1983 to 60 today.

But most of all, we've learned that people with Down syndrome are more like us than different.

I may be nonconfrontational, but I will not stand idly by while outdated information is being spread about Down syndrome. It will be my life's work if it has to be to show people the value in these children's lives. And as long as there are genetic counselors shoving doom and gloom down scared parents throats, I will continue to shout my son's worth.

http://www.ndss.org/Down-Syndrome/Down-Syndrome-Facts/

Crafty Fridays - First Fall Session

As many of you know by now, a few months ago a friend asked if I could do crafts with her kids. We invited a couple of other moms and Crafty Fridays was born! It's been such a treat to bring out the creative side of the kids who have come so far and I'm so excited to announce the calendar for the First Fall Session.

First off, I have to say that Halloween is my favorite time of year, so I'm crazy excited about these upcoming crafts (and the ones in the Second Fall Session for that matter)!

If you are interested in coming to Crafty Fridays, here's a little more info. Please read through to the end.

WHO:
Classes are intended for ages three and up. Crafts and books are selected to interest and engage children of all ages. So far we've hosted friends up to age eight. Two-year-olds are welcome as long as a parent doesn't mind assisting. Class size is limited to eight friends, so reserve your spot today!

With a background in teaching high school journalism, I love getting kids of all ages to think outside of the box whether that be on a yearbook spread or on a piece of construction paper.

WHAT:
Crafty Fridays aims to tap the creative side of all children by introducing them to picture books and allowing them to take the lead on their individual craft projects with guidance. Every class starts out with us reading a book together and then producing 2-3 crafts.

For example, we've read "I'm the Best Artist in the Ocean" and created our own squids with "squid ink." We've read "If you Give a Dog a Donut" and decorated our own cardboard donuts. We've read "When Louis Armstrong Taught Me Scat" and made musical, glittery collages. 

WHERE:
Crafty Fridays is held in my upstairs craft room. (Thought I must admit, we might travel to the backyard for some outdoor art if it's an exceptionally nice day!) To limit distractions, parents and younger siblings that are not participating are encouraged to wait downstairs. I have toys to entertain little ones and daytime television to entertain moms (ha!).

WHEN:
Crafty Fridays starts promptly at 10:30 a.m. and lasts about an hour. See schedule above for exact dates.

WHY:
Your child will work with all kinds of arts and crafts supplies from watercolors to acrylic paints and recycled materials to objects founds in nature. The idea is to show them that art and creativity can be everywhere they look. Paper plates can become moons. Pine cones can be painted. Aluminum foil can be your canvas.

HOW:
Classes are $5 per class, per child. You can pay upon arrival, but must RSVP at the latest by the Wednesday before each class. You can pay $25 up front ($5 savings) to be sure your child has a space in each class. I take cash or check. Though I understand last minute cancellations are sometimes unavoidable, please be mindful supplies are purchased the day before accordingly. To reserve your spot, for more information or just to let me know you are interested, text me (Melinda) at 832.434.7997. 

 

Crafts, Friends & Donuts

This blog post is a bit different than my others, but I wanted to share something new and fun that we've added to our weekly routine! A few weeks ago, a friend asked if she could pay me to do arts and crafts with her kids once a week. People. I had been thinking/praying about this exact thing. Seriously for several months I had been thinking to myself, "geez, wouldn't it be cool to host art lessons for young children and get paid for it all while still staying home with my own kids?"

After I put the schedule together, this friend and I decided to invite a couple other kiddos into the mix and (ta-dah!) Crafty Fridays was born!

I start out each session with a book and then we craft off of what we read. We've painted with "squid ink." We've made bookmarks out of paint swatches. We've made hula girls out of washi tape. But guys, today's craft HAD to be documented in the blogosphere. It was just that cute.

When I saw that National Donut Day was a Friday, I knew I would have to plan accordingly. I reserved "If you Give a Dog a Donut" from the library and another mom volunteered to bring the donuts. Which of course all of the moms sat around and ate before class started because Shipley's.

After we read the book, we got started with our crafts.

1. Cardboard Donuts
I had this vision of each kid having three donuts to decorate that they could then use for pretend play, so I wanted it to be thicker than cardstock. Luckily we just had an Amazon shipment, so I took my x-acto knife to that box spending the better part of Tuesday night cutting out donut shapes. Let me tell you.... this craft was worth every hand cramp I had from cutting them out! I had the kids use water-based acrylics for the icing. For the sprinkles, I used leftover confetti out of cascarones (Easter eggs) that I still had in our cabinet. Guys, look at these! So darling. And I love that this craft was age-appropriate for each kid here since they range from three to eight years old.

 

2. Wooden Spoon
I found these wooden spoons for super cheap at Walmart, so I just had them use the same paint off of the donuts to paint a wooden spoon again for pretend play.

3. Aprons
I feel as though I should get a ribbon for creativity here. I found these aprons in a pack at Hobby Lobby for $11.99. With my 40% off coupon, I thought it was a good deal! I knew I wanted the kids to paint donuts on it, so I spent some time trying to figure out some kind of stamp or stencil... when it dawned on me. A pool noodle! I sliced one we already had into several stamps perfect for tiny hands. I gave them some fresh paint and let them have at it. These kids were so adorable. You could tell they were all so proud of their creations!

We wrapped up the morning with, of course, more donuts!

I am so thankful that God has given me mom friends that allow me to teach their kids in a fun way. This has been a fun few weeks and I'm so looking forward to what Crafty Friday holds in the future. I probably have room for two more children, *wink wink*.

Healed Hearts and Happy Shock

"But God has surely listened and has heard my prayer." - Psalm 66:19

It's taken me a few days to find the words to write this post because I haven't been quite sure how to approach it. On Wednesday we received some crazy, unexpected news at Elliot's cardiologist appointment. For those of you who have followed our journey, you know that when Elliot was first born we were told that he would need heart surgery before he was six months old and then at each cardiologist visit that timeline kept getting pushed back. Through it all though, we've been told that surgery is inevitable - that this kind of defect does not resolve on its own.

So when we went in last week we fully expected the same results from the echo, even bracing ourselves for a bigger discussion on what comes next since we were closing in on a year until three years old. But then, his cardiologist started talking about how his holes are closing and his cleft valve isn't leaking. And with a smile on her face she says, "I'm not recommending surgery and I don't think he'll ever need it now." She said she does still want to see him once a year to be cautious, but that his heart is now functioning like a normal heart.

I'm honestly still in a bit of happy shock. From the outset, I've been preparing myself for surgery and praying for healing thinking healing would come through a long, nerve-racking operation. It's not that I don't believe in miracles, but when a doctor tells you your son is going to need surgery eventually, you accept that reality. And when you're told your son isn't going to need surgery after all, you are so thankful, yet so bewildered at the same time.

In my short life as a special needs parent, I've been exposed to a new world. I'm a part of a wonderful online support group for new moms through the Down Syndrome Diagnosis Network and in that group alone I've seen moms and their little ones go through open heart surgeries, a leukemia diagnosis, long hospital stays due to RSV and flu, and sadly a couple of losses.

So when I hear, "I'm not recommending surgery," I can't help but think of all the parents that don't hear that, and while deeply grateful, I wonder why God chose to pick our son to bless in this way.

What I've surmised through prayer this week, is that first, God obviously knows way more than any doctor even awesome ones like Elliot's cardiologist who we love! Psalm 147:5 tells us, "Great is our Lord, and abundant in power; his understanding is beyond measure." We should never give up hope because God has the final say. You can have the best medical team in the world, but God establishes your steps. I might never understand in this life why God chose to heal our Elliot in this amazing way, but what I do know is that his plan is perfect.

I've also realized that this isn't about Elliot. This is about God's glory being shown. Absolutely God loves Elliot and wants to see him healed, but he loves every child just the same - healthy kids, kids that need surgery, kids who are healed in heaven - God loves each and every one of them completely. So, when God acts in a miraculous way, I think it has way more to do with him showing his power and glory than anything else. Ephesians 3:20-21 says, 'Now to him who is able to do far more abundantly than all that we ask or think, according to the power at work within us, to him be the glory in the church and in Christ Jesus throughout all generations, forever and ever. Amen."

All of that to say, I am beyond words thankful for God's great covering and provision over Elliot's health. God continues to leave me flabbergasted over his care for Elliot. But I have to add, I know that God would have seen Elliot through surgery. I know that God will see Elliot through anything that comes his way. But with every hurdle overcome, miracle given and goal accomplished in Elliot's life, it will always be my prayer that to God to be the glory.

Top photo: Erin Co. Photography

Looking Past This Alternate Reality

Like everyone does, I have a lot of labels.

Christ follower. Wife. Mom. Daughter. Sister. Friend. Crafter. Writer. Baylor alum. Hider of chocolate. But, there is one label I wish I could erase.

Worrier.

I am a chronic worrier. Just ask my poor husband.

If my kids take an extra long nap, I immediately think they might be getting sick. When the gas light on the dashboard comes on, I panic and look for the nearest gas station. If my phone rings after a certain time at night, I imagine the worst. I truly struggle with worrying so much that I have Bible verses taped up on my bathroom mirror specifically to address this issue.

Lately, the subject of my fretting has been this election year.

Y'all, it's just too much. The very thought of Donald Trump as a presidential candidate deeply concerns me. I am beyond unsettled by the reality that people who identify themselves as "evangelical" just as I would are voting for a man who continually defends Planned Parenthood, degrades every demographic outside of white men, mocks individuals with disabilities, and cannot explain in detail a single plan he has. How people don't see right through him is in a word: baffling. Having to choose between Trump and Hillary Clinton this coming November sends me into a downright tizzy.

I pray daily about what almost feels like an alternate reality... one where a man so filled with pride and hate can actually be winning at the ballot boxes. Then today during my quiet time, it hit me: I am living in an alternate reality. America is not my eternal home, and, while I respect the presidency, our commander-in-chief is not my final authority. God has prepared a place for me (and for you if you want it) so far greater than any nation mankind can create. First Corinthians 2:19 tells us, "What no eye has seen, nor ear heard, nor the heart of man imagined, what God has prepared for those who love him."

Lord, please help me cling to these words instead of CNN! Let me find rest in your assurances and not in the presidential candidate of my choice. While primary results come pouring in tomorrow, remind me that you already know who wins in November. You are in control of it all and yours is a kingdom that cannot be shaken. That's my true reality. Daniel 7:14 says, "... His dominion is an everlasting dominion, which shall not pass away, and his kingdom one that shall not be destroyed."

I voted already. I suppose that and pray is all I can do. Pray that Americans pick someone with character. Pray that people vote with hope in their hearts rather than fear in their bones. But, ultimately, pray that God's glory be shown and His will be done. And if the results tomorrow night set my worrying off, may I remember this life is my alternate reality; my true reality is found in the blood of Jesus.

The Lord Looks on the Heart

Filling out a developmental checklist at a well-visit for my 18-month-old child with Down syndrome reminds me of taking a test and not knowing any of the answers. I kind of stare blankly at the form unsure of what to circle. I bring my pencil to the paper. Take it away from the paper. Bring it back. No, take it away. I keep watching the door, scared the doctor is going to pick up my paper before I've had a chance to reason with my answers. I second guess. I panic I’m going to fail.

"Does your child have a few words?"

Does "buh" count? I mean, I think he made that sound last week while holding a book, so totally.

"Does your child walk?"

We're finally getting the hang of this unassisted sitting thing, so that's kind of the same, right? No?

"List any concerns about your child's learning, development and behavior."

All of the concerns. May I write on the back?

Elliot loves to make faces.

Analogies aside, I have truthfully come to accept Elliot's delays. I used to fret for days over these checklists, but now I have made peace with his timeline. I know he will walk and talk when he's ready, so the forms don't bother me because he's missing milestones. They bother me because they are only a snapshot of Elliot's abilities.

In 1 Samuel 16:7, the Bible tells us, "The Lord sees not as man sees: man looks on the outward appearance, but the Lord looks on the heart."

This verse has become the verse that I pray over Elliot. There is so much truth packed into those words. He might not look or act like a typical 18-month-old, but what does his heart look like?

He might not drink out of a straw cup. He might not stack blocks. He might not eat table food. But, Elliot makes friends with everyone he meets. He smiles from the depths of his heart. He educates those around him at all times just by being himself. He is a living reminder of what matters to God. God doesn't see Down syndrome when he looks at Elliot. God sees a sweet boy with a pure heart made in his image.

"But the fruit of the spirit is love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, self-control," says Galatians 5:22-23. Elliot's life so far has been a testimony of these attributes and he gives his parents a lesson in this everyday.

So while filling out the developmental form might feel similar to that dreaded test I was unprepared for, the results are completely different. Instead of walking away with that sinking feeling of failure, I can walk away with the confidence that there is so much more to this little boy's story.

 

 

 

New Year Reflections: Serving Others

Last year at this time my head was spinning. We were a new family of four navigating the world of Down syndrome. It had been less than six months out from my month-long hospital stay. I was adjusting to being a stay-at-home mom and learning how to budget on one income.

Y'all, I was tired. Just thinking about those final days of 2014 makes my eyes cross.

Around this time, I was inspired by a blog post to choose a verse to pray over my family for the upcoming year. I ended up choosing Isaiah 26:3 - "You keep him in perfect peace whose mind is stayed on you, because he trusts in you." I wrote about my choice here. All I could think about was how our home was in need of peace... that all four of us would benefit from a completely boring, utterly uneventful year while using that time to grow in our own walks with God.

Oh my stars. God is so good!

Can I tell you how boring 2015 was? It was incredibly ordinary. Sure, we had our ups and downs, but it was blissfully dull. God gave me the year of cuddles, health and HGTV-watching I dreamed of. Justin and I even had a much-needed getaway for just the two of us. I was able to get into a rhythm being home with the kids, carve out minutes for daily quiet times and figure out this whole budget thing (Pro Tips: you can live without going to Target twice a week and the HEB-brand stuff tastes just as good if not better.)

Now that the year is coming to a close, I felt it was time to look for a verse for 2016. Over the course of a few months God has been stirring in me. I've been asking him what he wants from me and our family this year. As lovely as my answered prayer for peace is, I know that as a follower of Christ, I cannot simply check off honoring God with daily quiet times for the rest of my life.

While I wholeheartedly believe we needed the humdrum year we were given, it's now time to think outside of the four people in this home. God has been working on my heart this year through his word and my prayer times. The verse I have been particularly drawn to and will be praying over my family is Galatians 5:13.

This year, I want us to be thankful for the restful year behind us and look forward to a year of serving so that our family can truly be a light in the darkness. I have few ideas of what this might look like for us.

1. Justin and I feel so blessed to be members of the church God brought us to. Every August our church asks members to choose a place of service. I've never been a part of a church where nearly 100% of members volunteer in some capacity. It's truly a blessing for everyone. Because of this, Justin and I got a jump start on 2016's verse. I've been volunteering with the middle school girls' lifegroup and the children's choir. Justin's been helping with the greeting team and men's ministry.

2. One of the biggest areas God has put on my service radar the last couple of months is hospitality. For whatever reason I have felt VERY convicted recently that we should be opening our home more. I feel like God has put every single Bible verse on the subject right in my face this past year. Seriously. I admit that I am guilty of being selfish with my time... the few moments of alone time I can get, my time with my kids, my time with husband... all of it. That's no way to live. Sharing a meal or dessert, playing board games or hosting a Bible study enriches your life and those around you as well. I know this and I have a goal of opening our home once a month for whatever God puts in our path.

3. I want my kids to get in on the fun. I want to be sure they know that serving others is a Gospel priority. While Elliot is still too little to grasp the concept, Adele is the perfect age to start learning about what service looks like. My hope is that I can start with having intentional conversations with her. On the Sundays we have to get to church early for daddy to serve, we need to explain that to her. When we have middle school girls over for dinner, we need to tell her why. I'm also going to commit to giving her one act of service a month in some area... baking cookies for the police station, helping me clean when she has little friends coming to play, etc. Having a servant's heart is a big deal in the Kingdom and I want to make sure I'm teaching my littles how to offer up their time and talents.

Can I let you in on a little secret, readers? Serving is addicting. When I signed up to help in the youth group on Sunday mornings, I couldn't wait to offer our house for youth gatherings. When they needed another adult to help with children's choir, I jumped. I also have a few other ideas for the year I didn't mention in the above list. It's a rabbit hole for sure. I know there is a time and place to say no, and that you should most definitely say no if you are drowning in commitments. However, I'm at a time in my life where God is telling me to say yes. And, I'm excited about it! "Do not grow weary of doing good." 2 Thessalonians 3:13 - that verse was a close second.

God, thank you for a restful 2015. You are ever faithful. I am constantly in awe of your provision in my life. I pray that your love pours out of my family this year as we step out of our comfort zone and serve those around us in whatever way you lead us. I pray that we build upon what we are already doing and that our kids learn how to serve by watching us. I hope that we honor you in our efforts because whatever we do is not about us... it's about you and your never-ending love for us. Amen.

I encourage you to find a verse too. Pray over it. Read it daily. God is faithful. Happy new year, friends!

Silent Night Thoughts

Friends, it does not take much to turn me into a weepy mess. Singing an old hymn on Sunday mornings. A proposal on a Bachelor finale. Noticing how big my three-year-old's feet are getting.

Game over. Tears will flow abundantly. It's pretty embarrassing.

That video circulating right now of the kids picking gifts for their families over themselves? I straight up ugly cried. Twice.

Today at a stoplight, the Sidewalk Prophets’ version of Silent Night sent me into a tailspin of sobs. Yes. A Christmas carol that I have heard 2,446,761 times in my life hit me right in the feels.

Silent night, holy night, all is calm, all is bright.
Round yon virgin Mother and Child,

Holy infant so tender and mild,
Sleep in heavenly peace,
Sleep in heavenly peace.

The lyrics got me thinking about Mary and, truthfully, all mothers.

There she was… a young, new mom with this precious baby in her arms. Hearing that song today, I could almost feel her heart swell as she looked at her newborn boy for the first time.

Moms, you know what I'm talking about. You carried that baby in your belly for nine months. Your back ached. You battled insomnia. You peed every ten minutes for the better part of a year. After all of that (and much more), you pushed out what surely felt like a boulder or endured an oh-so-fun c-section.

Then the nurse put that tiny human in your arms.

Magic.

Suddenly, the room was silent, calm, bright as you gazed down at this new life filled with so many possibilities. Suddenly, you didn't care that you possibly pooped during the delivery or that your husband will never unsee what he just witnessed your lady parts do. All you care about in that moment is this little baby.

I think about Mary as the shepherds came to greet Jesus. They told Mary the angels said to them that her baby lying in a manger is Christ the Lord. In Luke 2:19, Mary "treasured up all these things, pondering them in her heart."

Now, I beam with pride when my toddler gains an AWANA patch. Can you imagine the pride you would have over angels calling your child the savior? And despite that pride, how overwhelmed you might be at the same time?

Motherhood is a blessing. No amount of questions your toddler asks in the span of an hour can change that. No amount of blow-outs in a day can change that. No amount of eyerolls from your teenager can change that. Motherhood is a gift whether you are Mary, Angelina Jolie or a single mom in the inner city.

So, back to Silent Night.

I’m not sure how I got all of this out of a Christmas song today, but moms, I know we are all knee-deep in wrapping paper and tinsel right now. Can I pray for silent nights for you this week? I pray that no matter how many tantrums our preschoolers throw or how much sass our middle-schoolers spew, that we can still see God chose us for these kids. Though sometimes I struggle to believe it for myself, He has equipped and trusted us to raise these kids. When Mary first learned of her pregnancy, she only replied with "I am a servant of the Lord." I pray that we can serve God with an attitude like that. I hope that we can trust God fully with not only our lives, but our kids’ as well.

I leave you with this. It really is a beautiful song. Thank you God for the precious gift of motherhood. Thank you so much for the gift of your son.

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.