Love Letter to Audrey

(The eulogy I read at Audrey's memorial service.)

Sitting down to write a eulogy for your child feels like an impossible task, one that has not come easily to me this week. But I know it’s one one the last things I’ll ever be able to do for her directly and I couldn’t wait until I felt more ready. So yesterday I finally decided to go back to my roots and write the letter directly to Audrey, just like I did the first 6 years of her life. This is what I wanted to tell her.

Audrey. When you were born, I knew instantly everything had changed. For one, your very presence was unexpected. Your dad and I had a 5 year plan to wait before having children, but we became pregnant with you only ten days after we were married. Whoops. As soon as you were born it was clear you had several life altering disabilities. While expecting you, I had a vision of what our lives would look like, and had a hard time adapting my dreams of the future to our new reality. In what we would now call the “instagram worthy” life I imagined for us, there would be painted nails, dresses, first days of school, dances, and friends. Not hospital stays and baby glasses and wheelchairs. And what did this mean for our future family, with a one in four chance any of our children would have the same syndrome? I wrestled with all these thoughts while in my postpartum recovery bed, waiting for my epidural to wear off so I could come see you in the NICU. The loss of our picture perfect life was a lot to bear. But then we got to know you. As I gingerly stood up by your crib for the first time, you held my finger and stole my heart. I thought you were so strong and so brave. We spent every available minute at the hospital by your side. I remember a nurse telling us if we rocked you all day every day, you’d expect that same treatment when we got home. We just looked at her, not understanding why she saw that as a problem. After nine weeks, you came home and we quickly found a new normal. In the beginning it mostly consisted of doctor’s appointments and therapies and very, VERY little sleep. But eventually we figured it out, and with you our lives were full in the best way.

Over the years you welcomed four more siblings into our family and you were the sweetest big sister to them all. You were never happier than when you had a baby to cuddle. We went to Disney World with Make-A-Wish, and after we discovered how accessible the park is to you, went two more times after that. We took roadtrips, invited friends into our home, created family traditions. We moved into a new house, lived through a couple major hurricanes, the pandemic which ironically became the healthiest year of your life, and introduced a crazy puppy into our world, that goodish boy Ted. Until he outgrew it, his favorite napping spot was under your wheelchair. There have been countless stories read, dance parties, game nights, silly sounds, family get-togethers. We have mourned together, celebrated together, grown and changed together. It’s hard to imagine any of these things happening without you now. 

So that life I had dreamed for us while pregnant: painted nails, dresses, first days of school, dances, and friends? It all came around more beautifully than I imagined. The painted nails happened almost instantly. I THINK MiMi let you get home from the hospital before painting your toesies? But it definitely wasn’t too long after. Of course, you’ve never been without a closet of beautiful dresses. One of the perks of being the same size for so long is that your wardrobe is always expanding. The first day of school came much sooner than I thought, when we put you on the bus as a tiny three year old and waved goodbye from our sidewalk.  You made it to two Nights to Shine hosted at our church, a prom night experience for people with special needs. And most importantly friends. For a while, I wondered if you would ever truly have friends. I knew our friends would love you, but would there be someone who was drawn specifically to you, to be your friend outside of us encouraging that relationship? That was something that weighed heavy on my heart from the beginning. But sheesh, did you have friends! There are so many people who would see you from across the room and make a beeline straight for you. Sometimes you were visiting with people we didn’t yet know ourselves. More than once Dad and I have said “introduce us to your friend Audrey!” We will always remember those people because the surest and fastest way into our hearts is loving our girl. At the end of the 2020 school year, when learning switched to virtual, your classmates had a video chat once a week. At the end of each session, everyone would sign off in a popcorn pattern. Your teacher would choose the first student to start it off. And that student would choose a friend to complement, who would then choose the next friend to complement. And do you know, every time, the first friend a student chose would be you? Audrey, I love your hair. Audrey, I love your smile. Audrey, I love that you are always happy. Audrey, I love the way I feel around you. I remember logging off after the first online meeting in tears of gratitude that you have actual friends. Turns out, we didn’t miss out on much of anything living our lives with disability.

But we gained more than I could have ever guessed. Community. In the SLOS facebook group, at Hope Heals Camp, with strangers who randomly heard our story and turned into friends, even medical professionals. We gained perspective. Up until you Audrey, I didn’t give those the disability community much thought at all. Now, I can’t enter a space without seeing how accessible it is to people with different physical abilities. You’ve changed our definitions of belonging, of capable, of worthy, of inclusion, of strong, of beautiful. You’ve helped shape us into who we are today. And the things I thought would detract from our lives, I grew to love. For the rest of my days I will miss the wheelchair in the center of our photos. Ask anyone who has taken our picture. The five of us knew how to fall into formation around you without even thinking about it. We already feel lost trying to take a picture without you in your chair front and center. I imagine for the rest of my life I’ll notice its absence. Your baby glasses turned out to be the cutest thing ever. At some point within your first couple years we switched to contacts…but I stand by my earlier statement. Cutest. Thing. Ever. And even the hospital stays brought us joy. The last 11 weeks of your life were spent at Texas Children’s Hospital and they were hard. Really hard. It was long, we were exhausted, Dad and I missed spending time together more than just twice a week at our shift change. But even while we were living it, I remember telling your dad, there will come a day when she is gone, and we would give anything to spend 11 weeks with her at the hospital. So we didn’t take it for granted and we made the most of it. We had family movie nights with a projector and a sheet on your wall. We had a drawer full of card games for when your brothers and sister came to visit. We watched Astros games and took silly photos, watched the window washers outside, ordered food, raided the family lounge for snacks. Our family will look back on our TCH  days with you with fondness. 

So Audrey. You’ve given us so much more in 16 years than we could have anticipated when you were first born. I think of myself that night, a young woman of 24, lying in my hospital bed, grieving the life she thought she’d lost. And I wish I could tell her, a day will come…and that day is about a decade away, but blink and it’s here..that you will love this life you’ve been given, and wouldn’t choose to change a thing. Now I’m trusting that a day will come…maybe another decade out…where a future me will want to come back to myself just a week ago lying in a different hospital bed, grieving a different loss…and tell her that it’s still going to all work out for our good and God’s glory. 

To our doctors, nurses, medical staff: We love you.Thank you for giving us as much time as possible for us to spend with our girl. Nobody wants to live at the hospital, but for the 22 weeks we spent there in the last 8 months, it felt like a home away from home. Thanks for taking care of us, as well as Audrey. You will always have the softest of spaces in our hearts.

To our friends: A lot of people who live with disabilities also live in isolation. Because of you, we’ve never felt that way. Thank you for making space for Audrey in your homes and your hearts. You make our lives so much better. And for those able to be here today, we can’t tell you how meaningful it is to us. I feel like God has a way of using collective grief and mourning to take the weight off us individually. Thank you for easing our load. 

To our family: Many people have told us that the length and quality of Audrey’s life was a testament to how well she was cared for. If that is even partly true, it was certainly a team effort. For the first few years of Audrey’s life, I couldn’t take her anywhere without someone riding in the backseat to keep her from choking. That meant every doctor’s appointment, therapy session, or field trip, a grandmother accompanied us. As more kids came along, someone needed to stay with them while we were tending to Audrey’s medical needs. I could never list all the ways you’ve helped our family thrive. You are the real MVPs behind the scenes in our life. Thank you.

Liam. I always said having you was the best thing we could have done for Audrey. She rolled over for the first, and one of the last, times in order to see you the day we brought you home from the hospital. We laid you down next to her on a blanket on the floor, and as soon as she heard your cry, she laughed and reached out towards the sound. For a while people thought you were twins, because she was so tiny. But within 6 months you outgrew her and suddenly looked like the big brother. And while she was the oldest, in a lot of ways you were the first. First to hit all the milestones, first for us to parent in a traditional sense. You’ve always been the biggest help in caring for her, whether it was early days bringing me diapers and wipes, or when you graduated to making her formula and getting her room set up at night, or most recently when you started getting her feeds and bipap running before bed. You were always learning new ways to care for her, and understood it was the most basic way we could serve her and show her love. Thank you for loving her so well.

Ben. You’ve been Audrey’s biggest hype man ever since you could talk. You’re so eager to tell anyone who will listen about your MIRACLE sister who was never supposed to live more than a year and is now (fill in the blank) years old. Your face shines with awe when you talk of how God has moved in and through her life. And you were always aware of how to make a space more inclusive for Audrey, wanting to involve her in everything we did. I’ll cherish how important it was to you for Audrey to be included in your monthly special lunch with mom, since Audrey didn’t have her own lunches with me. I know you will never stop telling people about your sister and the impacts she had on you and other people in her life.

Abbey. You were Audrey’s person. Your connection with her was instant and will last forever. I have so many pictures of the two of you cuddled up together or playing. You invented really creative games with her like the laughing game. You’d say Audrey, let’s laugh on 3. 1….2….3! Then you would start laughing hysterically, which would make her laugh because she could spot a phony laugh a mile away. Then her laughter would make you genuinely laugh. The two of you giggling together was the most beautiful sound. More recently you formed a sister Lego club. This club consisted of you sitting on the floor in Audrey’s room playing with Lego…and I could be wrong but I don’t think Audrey ever touched a single one…and still it was a full fledged club with two members. Ever since you were tiny you would translate for us what Audrey “said” or wanted or how she felt. I’m sure all of your interpretations were correct. Even when it was something along the lines of “Audrey said I could have this toy of hers” I’d think, I know that’s exactly what Audrey would say. She would have given you the world.

Bradford. Here we are again. Father’s Day weekend and again experiencing one of the greatest losses of our lives. You were the absolute best Dad for Audrey. From day one you jumped in there and did the hard stuff I was nervous to do. You were the bather, the heavy lifter, the car loader, the hair brusher, the diaper changer, the comforter, the med puller, the pray-er, the furniture assembler and rearranger and rearranger again, the car seat cleaner, the song maker, the wheelchair pusher. You are the muscle behind our family and it never goes unnoticed. We make the best team and even on our darkest days find ways to smile, laugh, and cling to each other. There’s nobody I would rather live this good hard life with. 

And the last word for Audrey. We love you. Say hi to Lukey for us. We’ll miss you every day until we see you again. You’re forever our best girl.