January 2020 

3rd Something I’ve thought often about is how we had to go from “the process of accepting that our baby has severe health issues and special needs and processing through the disappointment of that on no set time frame” to “every day we get with our baby is a gift because he is dying and he is perfect the way he is right now” within one phone call. The phone call with the results of a heart catheter procedure where they discovered a terminal heart disease in a severe stage. I went from “I’m processing shock and disappointment that this is my baby” to “I’d choose this over death any day”. 

We thought we had time to process the trauma and the shock of his birth and what we’ve been through with him and that we’d most likely be caring for Asa the rest of our lives. We gave ourselves grace that it was okay to be in that process. Of course we loved Asa, but the disappointment was real. 

Then all of a sudden, one disappointment was outweighed by a far greater one. One that would take my baby’s life. One that made us realize that every. single. day. is a gift from God, no matter how hard the day is. Sure, we had days where this wasn’t on the forefront of our minds, but for the most part, it’s hard to forget that your baby is dying. After discovering a heart disease that we weren’t even looking for, we dove right into believing that Asa was perfect and not wanting to change a thing about him. He was perfect the way he was, because he was alive. It’s that simple. He was with us. 

8th A lot of people ask how Koa has been since Asa passed away. I wrote some special moments out so that we could remember them forever. 

Koa was present with us and awake into the night while we had Asa’s body before the coroner came to take him. He arrived with grandpa 10 minutes after Asa had passed and sat with us on the ground, staying very present and open in his body language and in the way he watched each of us. Koa watched as friends and family arrived and as we all shared in tears, laughter, and conversation. From 5pm-10pm he was awake while Asa was lifeless. He never wanted to hold his body but kissed him, tried to give him his favorite toys, and put blankets on him. 

The next morning he woke up and some family had stayed the night. Koa was telling grandma that Asa was still sleeping (as he normally would) and I brought him to Asa’s empty crib. I simply said that Asa was not sleeping here and that he wasn’t going to be coming back. That he was with Jesus and as I pointed to each of our hearts I said Asa now lives in our hearts. Koa looked at me, bowed his head into my chest for a few moments, and said “Asa all gone”. 

That next day as Koa had watched lots of people hug us and cry with us. He was playing with his cousin under the kitchen table as someone held me while I cried. He stopped playing, came to my side, and said “mommy sad?”  I said “yes mommy’s sad, I miss Asa”. He bowed his head and bent his body over my leg as he hugged me and patted my leg. Then he said “I’m sorry mommy”. 

We don’t want to shield Koa from our heartache. If we hide our sadness from him, then we’re teaching Koa that it’s not okay to be sad that Asa’s gone. He’s learning so much from just being around us as we grieve. 

Koa is almost 3 years old and has always been an intuitive little guy. It was normal for him to commentate on what Asa was doing throughout the day. Sleeping, laughing, crying, playing, Koa was always telling us what Asa was up to. The morning after Asa 

Every night Koa would ask if each of us (mom, dad, Asa) were also going to sleep when we’d tuck him into bed. I said yes and yes to mom and dad then he asked about Asa. I said “Asa’s going night night with Jesus”. Now every night, when he gets to Asa’s name, he says the same. 

Watching the “good dinosaur” and in the part where they describe their families with sticks and circles, they bury the family members who have died, all without words. Koa turns to us and says “we miss Asa”. 

Crying out of no where and koa wipes my tears and lifts my chin with his hand 

Koa continues to be incredibly sweet and beyond his years when it comes to noticing emotion. Whenever Ryan and I cry and hold each other as we miss Asa, Koa always squeezes between us, and quietly holds our legs. He doesn’t demand attention or interrupt. He just stays with us. Countless times he’s brought tissues whenever he sees one of us cry (just happened this week). One time when I was sick in my first trimester, he saw me hovered over the toilet throwing up. He brought me a paper towel and asked if I was okay, then sheepishly asked, “Is the baby still alive?” In my second trimester he pulled me down to his level and whispered in my ear, “I love you and your heart is gonna feel better because we’re getting another baby”. And even as we welcomed baby sis, he’s stated a few times that “we have a baby now and we get to keep her forever!”, and the three of us talk about how much we miss Asa.

31st Ryan & I have talked a lot about wedding vows in this season of our lives. ‘For better, for worse, for richer for poorer, in sickness and heath’. Yes, yes, yes; we’ve done them all. But no one asked us, “Even if you have a sick child? Even through your child’s terminal diagnosis? Even if your child dies?” These are daunting questions that no one ever asks, and you simply can’t predict the future. You can’t predict the storms a marriage will weather. But how powerful to look back knowing all we have endured in a short 4 years, and still say, “Yes, even then.” 

That’s not to say this is easy. The statistics are not in our favor of marriage lasting. We start at a little above a 50% chance, and it gets more and more slim after having a child with special needs and losing a child. And I can understand why. Every person grieves differently and there’s no “right” way to grieve. We’ve been grieving since Asa’s birth, 18 months ago. Our marriage has and is weathering storms we could have never predicted. But I’d go back and choose you every time Ryan Ellis. This year has more pain than ever before, but it also looks brighter than ever before too❤️

February 2020 

16th The medical equipment that we couldn’t wait to get rid of is now the equipment I miss. I remember dreaming of the day we’d get to burn all the folders and files of his medical history, therapy reports, insurance info, etc. with Asa because he had been healed or because he had outgrown all the conditions that once needed monitoring. I dreamt we’d all dance around the fire as the flames engulfed those binders, a sign that we made it. Envisioning the day we’d say goodbye to each piece of equipment one by one as Asa outgrew his need for them. The day he’d no longer need oxygen. The day he’d no longer need feeding tube supplies. But here I am, wanting those things back. Missing their sounds and presence because it meant Asa was near. Before it all got picked up I recorded each piece of equipment turning on. Those noises were the soundtrack of our life the last year and a half. Then all of a sudden they’re just… not. The stark difference of life with Asa and life without. 

Just this week I saw those neatly organized folders and binders that I was talking about here. Instead of throwing them in the trash or burning them like I had once dreamt of doing, I put them in a box to keep. Maybe someday I’ll let them go, but not today.

April 2020 

7th The entire world is the closest it’s been to experiencing our daily life. Worried of sickness, extreme family isolation, and even grief. 

It’s oddly comforting that the entire world is experiencing a bit of the last 2 years of our lives. (I feel guilty for saying that but it’s true.) Constant fear of illness because it could end you up in the hospital, Koa couldn’t get out either because if he got sick then Asa did, extreme isolation, every part of our life put on halt.

September 20

14 How worship changed- being in Asa’s room, doing his normal cares and sensing the aroma of my life be pleasing to god. That I was worshipping in the most pure way that I’ve ever done my entire life 

This will probably become a complete post one day because it’s something I still reflect on often. Late one night as I was tending to Asa, holding him in his dimly lit room trying to soothe him back to sleep, I had this thought. I was exhausted in every aspect, yet I was still giving him everything I had. My life felt like a sacrifice. And since Asa was a gift from God, it translated to my life and all I did for Asa to be giving back to the Lord in a sense. I was diligently taking care of the gift he had given me, even when it cost me everything. But that goes for all we do in life. Worship isn’t just singing, it’s the things we do throughout the day to take care of our families. It’s the meal we secretly buy for someone in line behind us. It’s the way we sit in awe of nature. It’s the way we live our lives.