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