Thank you, June | One Week Later

Writing is a healing thing for me. I came here to write something just for me. I wanted to make some notes about how it feels one week after June left us. But then I found this partially formed post saved in my Draft folder. I'm thankful for it. The last 8 days have moved very quickly, but simultaneously, I feel as if I'm moving in slow motion. I never want to forget any part of how this feels. I want to hurt because it means she made an impact on me. I miss her more than I ever thought I would. My best friend.


To my precious girl, June, who made me a mommy,

You made me refocus my faith in Jesus. Loving you allowed me to understand a little bit more of how God loves His children. I have had to trust Him more than I ever thought possible.

You made me forget about comparison in my business. Before you, I was so concerned with rising to the top and getting people to notice me. Thanks to you, I worry less about that and more about being my best self for my brides.

You have reminded me to look at my life NOW and not what could have been or what will be. Daily blessings. In-the-moment reminders of joy and grace and love. The first third of my life is over and it happened in the blink of an eye. You made me stop, smell the roses, breathe, enjoy the breeze.

Because of you, my entire life slowed down. Being a person who has been in constant motion for as long as I can remember, you forced me to relax and say no to things. I don't feel the pressure to sign up for everything now. I don't feel like I have to be all things to all people.

You brought your dad and I closer than ever before. Mommy and Daddy had to learn how to be best friends in a different way. We have had to lean on each other on some of the darkest days of our lives. We are stronger - and more ONE - than we ever were before.

We miss you, our little best friend. God certainly knew what he was doing when he sent you to us. We are better because we got to love you.


It's been 8 days since I held my beautiful girl. I can barely remember the weight of her in my hands. In some ways, it feels like June's life was just a dream. We don't have any school pictures or messy fingerpaintings. Her life was so short. This is the worst part for me right now. We have been writing down everything we can possibly remember. Like how she always smiled when she woke up in the morning. Or her silly bedhead. Or the way she seemed to laugh after every sneeze, even if there were 8 in a row.

We will absolutely never forget her, but I know some of the memories will fade over time, just like anything else. If you have a memory of June, or a small way she touched your heart, would you write that in a comment here? I would love to add that to the document we are creating. 

Eight days. Eight. It feels like eighty. Cal and I are going away for a while. We are taking some time to recharge, pray, see some things June would have really loved. Our lives were very much consumed with caring for this little person and we need to figure out what to do with ourselves. Thank you for your continued prayers as we heal.

Being June's Mom

If you would have asked me 370 days ago what the coming year would look like, I would have responded with one word. Sorrow. To our disbelief, we were give the most wonderful, beautiful, precious, and happiest year of our lives. My girl who was not supposed to live made it 370 days. Those were and always will be the best days of my entire life. 

Today, we said goodnight to our princess. I will never write about the circumstances of her death. I do not want that memory saved. What I want to hold onto are the memories that will make us smile and keep us going. It may seem shocking for me to write of this so soon, but I am still severely numbed to the pain right now and wanted to share some of my favorite parts of her.  

June loved music.  

June loved being held.  

June loved snuggling with us and slept in our bed almost every night of her life. She did not enjoy sleep training, so we obliged.  

June loved her nurses. She loved her friends at Edmarc Children's Hospice.  

June was so good at making everyone smile. She had the best smile. 

June had a birthday and Christmas and Thanksgiving and Easter. She got to celebrate it all.  

June was so loved by her grandmas and grandpas. She loved her uncle Coco and uncle Josh and aunt Sarah.  

She loved mommy and daddy.  

June loved bath time. Niles would sit with her for every single one.  

She loved going outside. She loved the sunshine. She loved the breeze.  

June never sat up on her own, but she tried with all her might.  

June astounded doctors. Just today, her neurologist praised her for teaching the entire CHKD staff about people like her.  

She had the most beautiful voice.  

June loved baby food and ice cream and puffs.  

She was the most important person in my life and always will be. Her dad and I miss her so much. What I want you to learn from her little life is that EVERY person has intrinsic worth. Every person has the right to live and be treated with respect. All of us are made in the image of God.  

I want her life and death to glorify God. I want Him to be honored in every season of my life. I am not perfect and I will struggle, but I know for a fact God will deliver us through our heartaches. He opened his arms to our princess and welcomed her into heaven. Not everyone goes there, I hate to say it. Jesus said, “Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these.”  Matthew 19:14. Our June was loved by our Father. She is in his care. I will love her forever and I long for the day we go home to her. 

Thank you for following along with June's journey. She fought so hard for so long. She is brave. Now it's time for mommy to be brave, too.  

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Being June's Mom | ONE WHOLE YEAR

I barely know how to write these words. I mean, June is ONE. June is ONE. She is an entire year old. 365 days. She is HERE. My whole world is a year old. 

This might be your first time visiting my blog and reading about June. You might wonder exactly why I would write an entire post about my daughter when I should be focused mainly on wedding stuff. True, I am a wedding planner, but I have always felt it appropriate and necessary to share about my life and family. This was never more true during my pregnancy, especially when we found out there were complications. 

At our 19 week anatomy ultrasound, we found out we were having a GIRL! AMAZING! But not too long after the gender was revealed, we also learned there were some measurement issues. She was in a weird position, so they wanted us to come back in a few days for a second ultrasound. Two more ultrasounds, blood test, specialist, amniocentesis, and lots of doctors later, we were given grave news about our baby. At 32 weeks pregnant, they told us to expect her to pass before, during, or shortly after birth. Those 8 weeks and 4 days were the worst of my entire life. I basically sat on my couch and avoided as much human interaction as possible. 

Needless to say, she lived. She is here. We are celebrating her first birthday TODAY! If you have followed along for the journey, thank you. I cannot ever say how much your encouragement has meant to us. We are strengthened by everyone who has shown us love and grace and compassion in this season of our lives. 

Feel free to catch up with June's story HERE for my pregnancy posts and HERE for my monthly June posts. I'll warn you, some of these are quite wordy, so don't click over unless you have some time to spare.

June is the happiest princess. She has 8 teeth (maybe 9 or 10...any day now) and has almost bitten my finger off on more than one occassion. She loves baby food, but still doesn't take very much by bottle, so we have her feeding tube do that for her. She loves music and bright lights. She ABSOLUTELY LOVES being outside, like more than anything else in the world. Her dad is her favorite person, but mommy is a close second. She stares at her kitties whenever they walk by, but they don't give her very much attention, unless she's in the bathtub. She outgrew her infant tub, so we graduated to a little bath chair that looks like a beach lounger. It is so cute! June is trying her hardest to sit up, she loves to stand if we hold her, and she will roll around on the floor, that is, if we ever put her down. She has the prettiest voice I've ever heard and will sing along with her baby songs.

By now, typical children would be crawling, walking, babbling, or pulling up by now. I will admit, it is still a struggle for me to see other babies her age doing so well in their stage of life. Sometimes, I look at them and think about our sweet little June if she did not have the challenges she does. The June in a parallel universe would be EVERYWHERE like her mama was at her age. We'd probably have everything baby proofed by now. She would most likely be scaling the furniture and clawing at every piece of food on our plates. But I try not to dwell on the things she doesn't do. She doesn't have to do these things to impress me. She doesn't have to be typical for me to love her more than anything else on this planet. She certainly doesn't have to keep up with the other babies because she has already won the prize of my heart. 

To celebrate her precious life, here's a little walk down memory lane. Enjoy! And thank you for reading! Thank you for your continued prayers.

Happy FIRST birthday, little June!

Being a special needs mom | Personal

With June's first birthday approaching, I wanted to share a little bit what it has been like to be mom to a child with extra needs. Don't worry, her birthday post is coming in just a few days! 

This post is intended to be educational for those who might want to learn. I don't intend to belittle or insult anyone. :) Remember, just a year ago, I was also inexperienced in this topic. Additionally, this a post is not meant to make you feel sorry for us. Yes, there is a huge learning curve, but we are happy to handle every part of June's care.

I've learned that people have extremely limited knowledge about people with special needs. Before June, I had almost no understanding of the difficulties of daily life. Medical equipment, diagnoses, various specialty doctors, and complicated terminology are just a few things I've been schooled on since June was born.

People are afraid of things that are different. Having a child with difficulties and some physical markers that make her stand out should make me more open to others, right? Nope. I am still uncomfortable around adults and children in wheelchairs. I don't know what to say to them. I feel nervous that I'll make them uncomfortable. It's okay to be honest about this. It is inevitable that people will feel uncomfortable around June as she gets older. As her mom, it is my job to allay their fears in dealing with my child with special needs.

One area where resources are lacking is the availability of toys for babies and children with developmental disabilities. Progress is being made, but I still believe there is much to be desired in this area. Fortunately, we have specialists and therapists who help June maximize the use of the toys we already have.

One burden I wouldn't wish on anyone is the paperwork. There is SO MUCH paperwork. It's like doing the equivalent of federal and state taxes. Every week. I call doctors daily. Medical billing offices are always reaching out to us about insurance cards, balances due, and payment plans. If I had a 3 wishes from a genie, one of them would be to have a June secretary. (The first and second would be to take away June's troubles and to move to Disney World.) 

Being the mom of a special needs kiddo is extremely isolating. My friends are so sweet. They try to understand. They are supportive. Our families are AMAZING and provide help whenever needed. But there is a piece to this puzzle I can't quite make them understand. There is a sorrow and a joy involved in raising June. Many dreams I once had for my children are gone and it is up to us as her parents to create new dreams especially for her.

For moms of special needs kids, we might need a little bit more grace. We may cancel on playdates and family functions regularly due to sensitive issues. I never thought I'd be that mom. "Press on and drag the kid along" was my plan. Well, my plans have changed and I have one very sweet little princess to thank for that.

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What I learned: A weekend free from social media

I have never done one of these social media free weekends or weeks. Golly, I don't even know if I've intentionally gone a day without opening one of my frequently used apps on my phone. It's not for everyone or every weekend, but I'd like for social media strikes to become a thing.  

I learned that I'm really only picking up my phone to scroll. On Friday night, as Cal and I ate pizza and hung out with June, I caught myself picking up my phone at least once every 5 minutes. The very first thing I did EVERY TIME was visit the app folder labeled "Social Media" only to find it empty. When I decided to do this, I deleted Facebook and Instagram from my phone. I never go on Twitter or Snapchat, so they weren't a temptation. Every time. Guys, that's ridiculous. Not once did I pick up my phone to text or call someone.  

And that brings me to my next lesson learned. I'm not really using my phone to connect with people. I rarely send texts just to say hi to my friends. I hardly ever call anyone, besides my mom and Cal. When was the last time I made an effort to check on someone who I knew was having a rough go of things? 

Thirdly, I use my phone too often when interacting with others. Five years ago, I would have thought you the rudest person if you texted while I talked to you. Now, I do that and then some. Email, scroll social apps, answer texts. Someone could be talking to me (like, real human interaction!!!!),  and I'm just chugging along, looking at my phone. Maybe I do it because everyone else does it and we are numb to it now.

There are apps one can use to track phone pick ups, data usage, activity, and more. Amanda Hedgepeth just wrote about excessive phone use on her blog. (She had a wonderful challenge that I've linked at the bottom here.) I had not really considered monitoring my phone usage until I put social media away for a few days. My biggest enemy in all this is my addiction to social media. In order for me to spend time with my family, hear from the Lord, and rest, I need to break off my dependency from it. 

Maybe you have not considered your social media usage. It might be you haven't ever had a real problem with it. I sure do. And because of that, I'm going to pick one weekend per month to be social media free. I challenge you to do the same. If not an entire weekend, try it for at least one day. You might be surprised to see how many times it crosses your mind. 

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Have thoughts about this? Leave a comment. I would love to hear what you do to limit your social media consumption.  

Link to Amanda's blog post: https://amandahedgepethblog.com/2017/08/03/three-day-phone-use-challenge-salt-air-entrepreneur/