6 Truths about Down Syndrome I Want You to Know

I can't speak for all parents of kids with Down syndrome, but as I reflect on the last seven months, I am so thankful God put so many people in our lives that just "get it." Every now and then though I come across people who I think are just uncomfortable talking about Elliot. Like I've said before on a previous post, I didn't know anything about Down syndrome before we had Elliot, so I don't blame anyone if they don't know what to say or think. I wrote this post in hopes to help people understand that  our life is just like anybody's else's.

1. Don't Be Sorry
Thank God no one has told us personally that they are sorry, but I've heard so many stories of other parents who were told these words after given a Down syndrome diagnosis even by medical professionals! When we found out Elliot had Down syndrome, a scenario played in my head of friends driving away from our home after a good visit and saying to themselves, "Poor Melinda and Justin." I shuddered at that thought. I didn't (and I don't) want anyone to feel sorry for us because we see Elliot as a tremendous blessing just like we do Adele. I have no idea if anyone does this, but I hope not! I know the unknown is scary, but I hope that those around us see the joy in our lives over the obstacles; Elliot's smiles over the doctor visits; the love over the worry. God gave us a healthy, happy, thriving little boy. There's absolutely nothing to be sorry about. God doesn't define perfection the way the world does. He has a purpose for every life. "Do not be conformed to this world, but be transformed by the renewal of your mind, that by testing you may discern what is the will of God, what is good and acceptable and perfect." Romans 12:2

2. We Are Not Snowflakes
I've noticed a few people get tongue-tied when talking to us about Elliot, but let me let you in on a little secret... Unless someone is being blatantly disrespectful to my child, that person is not going to offend me. Ask me questions. I love talking about Elliot! I also don't expect people to know what to say or how to say it. I had no idea how to talk about children with special needs until I had one, so it would be completely unfair of me to hold everyone to some standard they know nothing about.

3. We Are Overjoyed At Your Child's Development
If I'm being 100 percent honest, when your child who is Elliot's age (or younger) meets a milestone that Elliot isn't close to, it stings a little. It's a reminder that already at seven months old, he's falling behind. That being said, I genuinely am so happy to see your little one develop and I want to hear about it! That face of determination, the giggles, the "Mom, I got this" expression is priceless on any baby and I love that there are so many awesome kids in Elliot's life that he gets to grow up with. So please tell me your baby stories, send me pictures... I love your babies!

4. Elliot's Just Like Any Other Kid
I've said it before, but I was terrified to see Elliot in the NICU after they told me he had Down syndrome. I was scared that I wasn't going to feel a connection. I was scared I wasn't going to know how to be his mom. It's difficult to admit those initial thoughts now because he has become such a part of me just like his big sister. Elliot is just like any other child. He needs love. He enjoys being held. He laughs when you make faces. He's mesmerized when you read to him. He gets grumpy when he's tired. He's going to take a little longer to crawl, walk and read, but he will get there. He will go to school and make friends. He will have goals and aspirations. Having an extra chromosome will not take those things away. So don't be scared! Down syndrome is nothing to fear.

5. There Are Days That I Get Scared
OK, I know I just said all that stuff in #4, which was all true, but if I'm keeping it real, there are moments when I am overcome with my own fears of the years ahead. Most days are like any other family's. Busy. Fun. Loud. Filled with laughs one minute and temper tantrums the next. But there are times when my mind is filled with thoughts of his increased risk for autism and leukemia, the fact that he could be nonverbal, and his likely open heart surgery at a young age. I think about his future education. Will his elementary school support inclusion? Will the kids in his class accept him? Will he have a girlfriend (and even a wife) one day? And then I go down the rabbit hole. Don't get me wrong, these days are few and far between, but they do creep up on me. When I'm having these days, I usually keep my thoughts to myself, but if I choose to share them with you please know I wouldn't change anything about my son. Please know that not every day is filled with doubt. Just listen to me and pray that I get over this wave of fear soon.

6. We Are Not Superheroes
I can't thank people enough for the kind words of affirmation they have given us over the past several months, but, truthfully, we know we are ordinary people that God chose to be Elliot's parents. We'd be lying to ourselves if we bought into thinking we are anything more than imperfect people that God called to a purpose. The only superhero in our home is Jesus Christ who has been abundantly faithful in his provision for our family. He's the one that brought Adele into this world after my delivery started to go south. He's the one that kept Elliot cooking until 34 weeks despite what the doctors said. He's the one that allowed him to breathe on his on despite being premature. He's the one that closed one of the holes in his heart. "But he said to me, 'My grace is sufficient for you, for my power is made perfect in weakness.' Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, persecutions, and calamities. For when I am weak, then I am strong." 2 Corinthians 12:9-10

So, while your praises at our parenting skills mean so much to us, all of the glory goes to our mighty God. Also, at the end of the day, we are doing what any loving parent would do - taking care of and loving our children.

Wonder, Worries and Three Birthday Candles

Motherhood. A phenomenon where pure joy meets gripping panic. Where love, thankfulness, exasperation, cheerfulness, pride and fear all have their place in your daily life. An overwhelming and constant awareness of a piece of your heart living outside of your body. An ever-present knowledge of the seconds ticking away.

It was just yesterday wasn't it when I was shaking on the operating table? We heard her cries. Justin, inches from my face, whispered, "she's so beautiful." They showed her to me and I thought, "Of course. That's her! The little girl I dreamed up long ago is right in front of me."

I can't believe that was three years ago. How fast those seconds tick away.

I look at Adele with a full heart. Full of her giggles trapped in my memory. Full of the songs we've made up together. Full of the prayers I've prayed over her as she's slept. Full of all the words I want to say to her.

My daughter. My beautiful girl. The perfect combination of sweet and sassy. Thirty pounds of imagination. Living proof of God's provision. A walking reminder to live in the moment, be silly, put down my phone, sing loud, soak up the cuddles, pray and pray harder.

When I look in her eyes, I see an infinite amount of possibilities. A future for the taking. I find myself on my knees praying for the path she takes. Praying that she chooses God. Praying she's a magnet for all things good. I pray for the friends she meets, the teachers she has, the man she marries. I have so much hope for what God has in store for her. So much excitement in watching her grow. So much pride in seeing her be a big sister.

Yet with all that hope, excitement and pride, the worry still seeps into my thoughts. What if I screw up? What if I don't do my job? What if she feels neglected with so much of our focus on Elliot? What if a boy breaks her heart one day? What if some catty little girl hurts her feelings? Or worse, what if she IS a catty little girl? And OMG THE MIDDLE SCHOOL YEARS.

The seconds keep ticking. The worries keep coming. I keep clinging to God's promises.

"And we know that for those who love God all things work together for good, for those who are called according to his purpose." Romans 8:28

So as I trust in God and learn to let go of the worries, I will cherish her childhood. I will play make-believe. I'll wear a tiara made out of pipe cleaners. I'll study her tiny hands. I'll brush her hair. I'll try not to curse the toys I trip over. I will think to myself all of the words I want to say to her.

Adele, my sweet girl, enjoy your third birthday. May it be a year filled with playtime, wonderment, music and fun. May God protect you, mold you, capture you. May you be little as long as you can. May your imagination never stop short. Your mom and dad want the very best life has to offer for you, but for now, we want you to know that you are loved. Truly, deeply loved by not only us, but by God in heaven. There is so much life ahead of you. From baby dolls to ballet lessons. From bike rides to lip gloss. From your first concert ticket to your first speeding ticket. I am so looking forward to every second of your childhood. I'm going to live in the present and savor every bit of you I get. Happy birthday Dell Bell. Your mommy loves you so much!

New Year Reflections: Finding Rest

I've never been big on New Year's resolutions. One year I gave up looking at gossip magazines and websites because I felt my love for all things pop culture was getting out of hand. And, well, while I still love reading a People magazine every once in a while, I think it's safe to say that I'm not a celebrity news junkie anymore (unless it has to do with Britney Spears or Prince George). Although I suspect that has something to do with growing up rather than making it a resolution. Another year in college, I gave up sodas. That one didn't last long (sips large Dr Pepper from Chick-fil-a). Those are really the only two I can think of...

I thought about making one this year and thought how on earth would I have the time to fit in a resolution? And that's when it hit me... I have no time. Why is that?

I'd be lying if I said I was sad to see 2014 come to a close. My sweet Elliot is the year's saving grace. I spent most of the year in a really tough pregnancy battling sciatic nerve issues, high blood pressure, hospital bedrest and an early delivery followed by Elliot's surprise diagnosis and six-week NICU stay. Once Elliot was finally released we've had to learn to navigate his needs and the Down syndrome world. I also had to resign from a job I loved and had no intention of leaving, which then caused Justin and I to acclimate to living on one-income. I'm not saying all this to complain; I'm just saying 2014 was rough and I've never been so excited for a new year to start.

When I look back on the year and look at making a resolution for 2015, I can only come back to one thing: time. Between Elliot's appointments and therapies, potty training a toddler and keeping a clean, happy home, I feel as though the last time I rested was, well, when I was on bedrest in the hospital. How ironic it is that I can look back on what I felt was like prison and think, "Wow, if only I could get some rest like that again!" So there it is... my new year's resolution... to rest. Physical and mental rest in Christ.

I read this blog post last night that encouraged you to find a Bible verse to pray over in 2015. I found it encouraging and a useful tool in finding the Bible verse I'd like for our family this year. And after much praying and pouring through my Bible, I decided on Isaiah 26:3:

"You keep him in perfect peace whose mind is stayed on you, because he trusts in you."

As the blog post suggests to create, my prayer for the year for my family is this: God, you are so great. I thank you for the many blessings in disguise that came our way in 2014. I pray for perfect peace in 2015. I pray that our hearts and our minds stay on you this year and every year after. I pray our trust in your perfect plan for our family only grows with each passing day. I pray that Justin and I trust in you and model that trust to our children. I pray for rest, for peace, for your continued grace as we adapt to our new family. Thank you for another year. Amen.

This past year tested me in ways I've never been tested. I'm a better person, a better wife, a better mother for everything that went down in 2014, but I do pray that 2015 can be much calmer and that our family can find some rest this year... maybe even take a vacation, imagine! Maybe I'll be ready for some excitement in 2016, but for now, I just want a year filled with Saturday morning cuddling, HGTV watching, front porch sitting and healthy kids. Here's to 2015 (holds up previously mentioned large Dr Pepper.)

A Letter To 18-Year-Old Melinda on her 30th Birthday... Just go with it.

Words of advice to my 18-year-old self on my 30th birthday.

Dear Melinda,

Hey! It’s me! I mean… it’s you! Happy birthday! Wow, 18. Can you believe it? You just got your acceptance letter to Baylor. You’re smack dab in the middle of Madrigal season. Your friends are throwing you and Amy a birthday party tonight. You’ve got the world on a string.

Right now your biggest concern is your outfit for tonight and if they remembered to buy the big sparkly candles for the cake. And you know what? That’s OK! You’re a kid… you shouldn’t have to worry about much more than that.

You’re probably thinking, “Yikes! 30! I’m so sorry about how old and ancient you are.” Well, while I definitely have more gray hairs and random aches that I care to admit, I’m not old… OK, I’m not THAT old and I have a learned a thing or two in these first 30 years. I thought I’d share some advice and insight on what’s in store for you! Get ready… the next 12 years are going to be good to you!

1.  In a few months you are going to try out for a solo for pop show and get only one night instead of the two you think you deserve. #firstworldproblems. Oh, you don’t know what a hashtag is yet… Basically, get over it! There are starving children in Africa! Take your one night and rock it. Besides, you give up the music major thing in like two seconds once you get to college. It’s totally fine.
2. Don’t waste your freshman year of college. Meet people. Go places. Study. Pray. Repeat. Sounds like common sense, but you’ll be reluctant to do these things because you will be heartbroken. Spoiler alert: your boyfriend is going to break up with you over the summer. And no, you don’t get back together and get married despite what happens three years from now. But that’s OK, because four years from now you are going to be in Brett Walker’s truck in the parking lot of Mezzanine Lounge (not as fancy as it sounds) waiting to leave and some guy is going to hop into the passenger seat and introduce himself. He will be what we call a game-changer, an answer to prayer, a knight in shining armor. No, it’s not Matt Damon or Nick Carter, but don’t worry, he’s still really hot and will become your rock in life.
3. Learn to say, “no.” This will save you from a painfully awkward date your freshmen year of college, taking a job you don’t want and probably even the hypertension you’ll be diagnosed with in ten years.
4. Do not let Amy and Jessie give you “Christina Aguilera” highlights in the summer of 2005. Disaster waiting to happen.
5. Be patient when it comes to your career. You’re going to be sitting at your college graduation silently freaking out in your head because you don’t have a job. It’s OK. You will get two offers on the same day three weeks from now and you’re going to leave the one you pick in about six months for what you think is your dream job. You actually won’t have your real dream job for another ten years from now. That job will change your life and your outlook on youth. You’ll also leave this job in only two years to be a stay-at-home mom. I know, right? Not you! Yes, you. It’s cool; trust me. So, again, just be patient and take life as it comes.
6. You will be invited to go on a river trip in the summer of 2007. Don’t go. But if you choose to ignore my warning, for the love of Pete please buy the strongest sun block you can find and just lather that stuff on like every 30 minutes.
7. On New Year’s Eve 2007, you will be asked to housesit. Just do yourself a favor and put the key on your key ring. Not only will you save a ton of money on a locksmith, but you’ll be able to go out to ring in the new year instead of pacing back and forth on the driveway panicking about how your friend’s dog is assuredly peeing everywhere inside.
8. On your honeymoon, just skip tropical drink night. You’ve been forewarned.
9. You will fondly look back on New Year's Eve 2010 as your favorite of all time. It will be a weekend to remember for sure with friends you love so much. That's why you can't let anyone eat at Bill Miller. Stay away.
10. Be content in those first years of marriage. You’re going to have a beautiful wedding and you are going to be so in love with your new husband, but all too quickly you will stop getting distracted by your wedding ring as your hand rests on the steering wheel. Your cozy apartment in the city that you found so charming is going to start to feel cramped. The sound of your new last name won’t be as exciting. You’re going to be ready for a house. Then soon after a dog. Then soon after a baby. All of these steps are big and wonderful, but just don’t forget to enjoy the step you are on. You will never get those days back so drink up those quiet days as a new wife.
11. When you have your first child, don’t freak out about how much she cries. People are going say, “Oh, she must have colic,” or “Maybe it’s reflux.” You’re going to spend a lot of nights crying to yourself about how she won’t sleep and you’re going to obsessively Google, “my baby cries constantly.” And, guess what. Your daughter is just a crier… A stubborn, willful little firecracker in pig tails that challenges you daily and you are a better person for her. So, when she’s a tiny baby that cries all night, just hold her close. You will be surprised how quickly that time goes and how much you will actually miss those late nights (or should I say early mornings?) when all she wanted was to sleep in your arms.
12. You and Kim are going to go to a standing room only Backstreet Boys concert in December of 2013. Yes, Nick Carter is still ridiculously hot, but the moral here is: do not underestimate overaged teenyboppers. You get there early and be ready to fight for your way to the front!
13. In 2014, your second baby will arrive. Your pregnancy is going to be rough. His birth will be early. He’s going to need much more care than you anticipated. But despite all of that, your heart is going to be so full of joy and love every time your eyes lock, every time you wake to his happy babbles, every time his hand wraps around your finger. He’s going to smile with his entire body and it will melt you into a big puddle. He’s going to teach you that God’s plan is greater than your own. He’s going to show those around you what love really means. So, when it comes time for his birth, it’s OK to process your feelings. It’s OK to be confused. Just take comfort in the fact that God doesn’t make mistakes and that this little boy is going to change your heart for the better.

So there you have it. Nothing crazy monumental and most of these you come to on your own. Have a great birthday! Maybe I’ll write another letter to you on your 30th birthday in 12 years. I’ll definitely be old then!

Love,

Melinda

PS – Your friends DO get you and Amy the big sparkly candles tonight! Yes!

Waiting Rooms

Today Elliot had another cardiologist appointment and it went really well! She said his heart looks the same as it did during his last echo, which is good. She also said she won't need to see him again for another two months and after that she thinks we can go to seeing her every six months! She took him off of the Lasix too. I'm just still in amazement with how well he is doing. He's gaining weight and reaching all of his milestones on track. He really is a little fighter. We know surgery is on the horizon at some point in the next few years, but how wonderful it is to be able to just enjoy my baby and not have to worry about surgery right now.

Waiting for the echo!

While we were in the waiting room this morning, a little girl with Down syndrome was playing and reading. I couldn't help but watch her and think what was in store for Elliot. Her mom noticed and came right out and said to me, "Your little boy has Down syndrome like my daughter, doesn't he?" I said yes and we got to talking about our babies. This little girl was 12 years old and has been through five (yes, five!) open heart surgeries in her lifetime... all at Texas Children's, all successful. She told me her birth story and I told her Elliot's. She gave me some tips and told me that Elliot was just beautiful.

I've said it before, but Elliot truly brings out the best in people. We now have this instant connection with all these families that have children with DS. There's no awkwardness. There's no big elephant. There's only love for your children and mutual respect for your respective journeys. It's so wonderful to have that bond with other families, but I can't help but think how rich life would be if we all acted this way. If we all struck up conversations in waiting rooms and prayed over strangers' children... how beautiful life would be. Having Elliot really has taught me so much about prayer, relationships and hearts (both figurative and literal). Next time you're at the doctor's office, don't be afraid to talk to the stranger next to you... you never know who you might meet, whose day you might brighten or what they might need prayer for!

21 Things

OK, I totally stole this from another mom, but I loved the idea! In honor of Down Syndrome Awareness Month, here is a list of 21 things I love about Elliot. See what she did there with the 21st chromosome? Cute idea, right? You can see her list here... she has an awesome blog!

Here it goes in no particular order:

1. His little nose! It's the same nose Adele has, their dad's nose and I love it!

2. He is such a fighter. I think back to when I was still pregnant with him and the doctors kept saying his heart rate was going to dip and it never did! And, obviously, we can't forget how he spent six long weeks in the NICU. I can't wait to see what else this kid overcomes in his lifetime!

3. I love his babbles. So flippin' cute.

4. This is a weird one - but this kid toots like a grown man. It's hilarious. Justin and I can't help but laugh when he does it!

5. He watches his sister constantly. His eyes just follow her wherever she goes.

6. He's so alert. I remember Adele would instantly fall asleep on car rides or walks at this age, but not Elliot. He loves to check out the scenery and I love watching him already starting to explore the world around him.

7. He's a show-off. He loves to show people his new tricks like rolling over or babbling. He makes me one proud mom!

8. I love his tiny little fingers and toes. His pinkies are crooked and he has larger spaces separating his big toes from the others. These are beautiful reminders of God's plan for him and I wouldn't have them another way.

9. I love how he seems to listen in church. Because of his heart condition, we aren't supposed to leave him in the nursery yet, so he sits with us every Sunday. He's usually wide-eyed through the whole service. His babbles slip sometimes, but I don't think our neighbors mind much :)

10. Have you seen his big blue eyes? Again, just like his sister's. I'm convinced the color comes from my grandmother who I miss every day. When I look in to Elliot's eyes (and Adele's for that matter) I can almost still feel her presence with me.

11. He sleeps through the night consistently. We put him down at 11 pm and he wakes up around 7 am... smiling I might add. Hallelujah. I paid my dues with Adele.

12. He's so chill and normally happy as a clam. (Side note: Why is this a saying? Are clams really that happy?) Nothing bothers this kid except being hungry... he will put his mean face on when he's hungry.

13. He's a fast learner. He still struggles eating sometimes, but he's getting better every day! He's also starting to hold his head up more and more.

14. I swear he's already puckering his lips when I go to kiss him. He just loves his mommy, I guess.

15. Every morning when he wakes up, he has completely turned himself around in his crib and in a swaddle nonetheless.... my little sleep scooter.

16. I love how when I feed him a bottle he holds my thumb. Every time. I can barely stand how cute this is!

17. He looks great in green. Sic 'em Bears!

18. It warms my heart to watch Adele be a "mother" to him. When he cries, she wants to soothe him. She runs ahead of me to pick out his clothes in the morning. What a beautiful relationship already forming between them.

19. His face when he sleeps is adorable. He smirks. He sticks his tongue out. I could stare at him forever when he sleeps!

20. His baby breath. If I could bottle up his baby breath and keep it forever, I would.

21. Elliot brings out the best in people. When we first found out Elliot had Down syndrome, we were shocked. We grieved. We needlessly fretted. We were consumed by fear for a few hours, then all of those feelings soon faded as so many reached out to us. We were loved on by friends, family, neighbors, coworkers, our medical team and even people we haven't spoken to in years. We were also welcomed in to a new community of families. I have been in awe of what this little boy has done to people's hearts in just 3.5 months.

In closing, many of you may have seen a recent article by a woman who wishes she could have aborted her son with Down syndrome. That makes my heart hurt. I want women to see how wrong that woman is... how wonderful and beautiful and "normal" (I say normal because the woman in the article longed for a "normal" family) life with a child with Down syndrome is. So please share this post! I deeply want women receiving a prenatal diagnosis to hear from moms who love their children with all of their hearts... not from Negative Nancies!

It's Down Syndrome Awareness Month!

Move over pink, October is also Down Syndrome Awareness Month! Just kidding, don't move over pink, but please share the aisle... there's enough love in our hearts to celebrate both! Now as a mother of a precious baby with Down syndrome, I want so badly to spread the word about Down syndrome mainly because I realize how much I didn't know about it until I became Elliot's mom.

You've got to be kidding me with these cheeks?!?! 

Before Elliot, I knew nothing about Down syndrome. All I could think of was this little girl at my elementary school that would run out of her classroom when the teachers weren't looking. As mentioned in Elliot's birth story, I was terrified. Some days I still am, but not of him. I'm more scared of Elliot growing up in a world that doesn't understand how amazing he is because trust me I can already tell he is one awesome little dude! I read stories of kids being kicked out of gymnastics because they can't keep up or adults losing their jobs because they had to have a job coach help them (I'm looking at you Papa John's). It's all so hard to hear while looking down at this little boy that I see as absolute perfection.

I want the world to see that God doesn't measure success the way we do and he does not make mistakes. Elliot is here for a purpose and I believe that purpose is to open hearts around him to help spread the word that children and adults with Down syndrome are not scary... they can do many (if not all) of the things typical people can do as long as we allow them the time and support they need to get there.

As I've already said, I'm guilty too. There are two recent encounters of children with Down syndrome that stick out boldly in my mind and neither of them put me in a good light. Last summer I was perusing the aisles in Target (shocker) and there was a mom with her two daughters in front of me. One of the girls had Down syndrome. She was just hanging out in the aisle with her mom and sister looking at earrings. I remember thinking to myself, "that poor woman." I also felt a fear creep into me. Justin and I had just started trying for another baby, and it hit me at that moment that no one is immune from having a child with Down syndrome. I bet if that woman could have read my mind she would have said, "You're the poor woman!" And she would have been right.

The next memory is we were touring day cares when we moved to Atascocita and when we visited one, there was this little boy in the two-year-old class running around throwing toys at all the other kids. He also had Down syndrome and my shameful thought this time was, "How is he allowed to be in here? Doesn't he need a more special environment?" If I could go back in time and slap myself in the face, I totally would. For one, now that Adele is a full-fledged two-year-old, I realize every kid runs around and throws toys. Also, that little boy was exactly where he needed to be... with peers his own age being challenged in his development!

Can you believe I thought these things? I'm so embarrassed to admit them, but it makes me think that as a Christian, an educator, a college degree holder, a loving wife and mother that if I can think these things, that most likely A LOT of people would have these same thoughts and we have to change that. There's no room in this world for this kind of fear. There's much bigger issues to be afraid of.

I have no idea why these instances are so vivid in my memory. Maybe God made them bright spots so that when Elliot was born I could remember how "normal" these little kids lives were hanging out with mom at Target and participating at day care, which meant their moms' lives were also "normal" shopping with her daughters and keeping a day job.

So, this month, I urge you that when you see someone with Down syndrome out and about don't be fearful. Don't feel sorry for their parents. Just smile and recognize them for who they are... a person first who God so dearly loves.