There’s something in me that needs things to be in chronological order, so before I share Izzy’s birth story, I’d like to share this.

I’m doing a big ‘unfinished writings in Notes from my phone” dump to this blog. Throughout Asa’s life, his terminal diagnosis, his passing, and the year following his death, I’ve gone through times of being inspired to write my heart out and times where there just wasn’t energy or words to write. Some of those thoughts got written in Notes on my phone and I somehow mustered the strength to clean them up and share them with you. However, most of those thoughts got written in Notes, never to be finished or opened again. And that is what I’m dumping here, the unfinished reflections about my time with Asa.

Most of these are the not-so-pretty, not-so-positive thoughts and feelings. There’s lots of turmoil, questions, reflections that I didn’t know how to tie up for a complete post.. and a few F-bombs. This post, Part 1, includes all the Notes from before Asa passed and the few days following. Most of which are written after discovering his terminal diagnosis. Part 2, coming soon, will include the Notes from after he passed away. Some will have thoughts I’ve added today labeled in red ink, what I like to call the insight of hindsight. Others will be left how they were originally written, incomplete and imperfect.

April 2019 

16th Lately, the desire for “normal” has been brought to my attention more and more. I notice it often with parents wondering if their children are normal. “Is this behavior normal?” “Does this physical feature seem normal?” 

May 2019 

5th Total weakness is total dependency. 

June 2019 

21st When I look at Koa I experience joy, a love so big it almost hurts, and a silly side of me that only feels appropriate to show a 2yo. When I look at Asa I experience love, wonder, magic, awe, and a deep honor for the life he has already lived in his short 1 year old life. 

24th This season keeps taking turns we’re not ready for. It’s hard to even call this a season when it just feels like this is just life now. This is our new normal. Yes, it won’t be like this forever, but it’s a damn long season. This is Asa’s third ER trip that turned into admittance in 1.5 months with each stay lasting between 1 to 2 weeks. Ryan and I think we find a good stride. Asa isn’t crying all day and we’re able to get out in small spurts and do things with him, until all of a sudden it’s a quick turn and his oxygen saturation’s aren’t stable. Suddenly we can’t support him with our home equipment and to CHOC we go. My initial reaction this time was anger. Ryan had left that morning for a week long work trip and it was Sunday so I was with the kids by myself. Asa was desating and I knew where it was heading. I was mad. Again!? Really!? Anger and frustration were brewing, until I broke out in tears of sadness and defeat. Nana and Papa came and got Koa and I got Asa ready to go to the ER.

July 2019 (The month we received his terminal heart disease diagnosis)

23rd Any parent who has a child with special needs knows that joy and pain can coexist in immeasurable ways. 

August 2019 

1st Grief will always be at my doorstep. Whether it’s a monster or a flower, it will be there. 

After discovering Asa’s terminal diagnosis, grief, more than ever, was present every day. I noticed some days it showed up gently, with a light knock at the door, while other days it came raging through the door destroying everything in it’s path. And I realized it would always be like this. Grief would always be part of my life, always be at my door. The flower symbolizes when it shows up and I get to lightheartedly remember Asa. A sweet memory that makes me smile, or tear up. A smell that brings me back. The monster is when it comes uninvited and overwhelmingly. When I spiral into the painful darkness of missing him.

10th When it comes to our kids, everyone is looking for “normal”. I’ve sat in the OR waiting room my fair share of times. As surgeons come out to talk to parents to explain how procedures went, the most common, underlying question for these parents is if their child is “normal” and if everything will be normal for them. Even outside of the hospital, “is this toe normal?” “Is this behavior normal?” “Is that development normal?”

My life was submersed in so much that wasn’t normal, that normalcy stuck out to me like a sore thumb. My intent was to write about how things that aren’t normal can still be beautiful, can still be ‘okay’.

10th If you’re good, you’ll heal him. Yes, that would be a very good thing. But that’s not what defines God’s goodness. On my worst days I’m angry and loaded with questions. On my best, I’m realizing I am on a journey of acceptance, continuing to let go of expectations I once had and still have of Asa.

18th What makes God a good God? Is it because he died so we could find eternal life? Is it simply because he’s God? Is it because he keeps us from pain? 

Since Asa’s birth, the things I’ve grown to believe about God just because I’ve been told them have all been challenged. I got saved in college about 8 years ago. Whether new or old to this faith, there are things we’ve been taught that just never get questioned. Asa’s life has challenged me to need to know for myself. It’s not my theology that is challenged, it’s my assumptions of why God does certain things. It’s my assumptions of why God allows certain events. It’s the question of why we suffer. And honestly, “because we live in a fallen world” hasn’t been a satisfying answer for me. I think there’s more to pain than it simply coming from the devil or from god. 

One of those things is “God is good”. I know the Bible tells me that God is good. The search into the definition of the word “good” ..

This was me, re-defining what “good” means. Or maybe unlearning and re-learning what “good” means. When we say God is good, it doesn’t simply mean because he answers our requests or does what we think is right. He certainly didn’t heal Asa the way I wanted him to. But we’ve even found a “goodness” in how everything transpired. His ways don’t always look like ours, maybe even rarely. To be honest this thought still circles through my mind to this day and I just can’t find the words still.

September 2019 

14th I’d rather have known and lost him than to never know him at all

14th What to do with bitterness? 

In the last few months I’ve noticed something change ever so slightly in me. I’m weathered and worn. I’m fragile and exhausted. And I’m starting to realize that maybe my soft heart isn’t so soft anymore. Well-meaning comments will strike me like a blade. When I see people pray for healing, I wonder if He’ll do it for them because it definitely hasn’t happened for us. I’m losing sight of my naivety and “life is good” and falling face first into “shit happens”. Part of me wonders if this is a part of growing up. The more life you live, the more pain you see. Some days I feel betrayed by God. (While other days all I can see is His goodness in my life.) 

Some real shit is going down in the Ellis home. A recent diagnosis has forever changed our lives. The only thing that I know in this time, He can hold it all. 

A few months back while in worship, I imagined myself in the middle of a storm with my hands held high as a sign of strength. I told God how worthy He was of such praise and joyous adoration, even in the middle of my storm. I took a good look at that image and realized that’s not how I felt at all. The worship leader started singing “let it rise” and all I heard was “let it fall”. The next image I collapsed to my knees, buried my face in my hands, and cried all while the storm around me was still raging. And He said “I’m even worthy of this”. 

My weakness is what he wanted, not some conjured up strength. All I have to offer is weakness right now. And even that he is worthy of. He’s worthy of it all. Of my fear, my pain, my utter and complete weakness. Yes, he even wants that part of me, because that’s when He can do what He does. He gives us joy for mourning, but we have to give him our mourning. He gives us beauty for ashes, but he gets the ashes. He gives us a garment of praise instead of a spirit of despair. What does that look like practically? To me, it looks like inviting him into all of it. I don’t need to hide the weakness, the ashes, the mourning. I won’t search for the morning if I can’t acknowledge it’s dark out. 

16th When my 2 year old Koa gets sick, we confidently ride it out at home or take him to the pediatrician’s office. When my 9mo Asa gets sick, he goes to the ER or the urgent care at his children’s hospital that knows him so well. Having a medically complex child is a constant reminder of how fragile life is. Asa’s life has opened my eyes to a world I’ll never be able to unsee. From physical appearance differences and disabilities to child loss, my world will never be the same. I’m not sure how I was so unaware of this world before having Asa. The families around me are healthy and whole, planning their next vacations with children who are consistently reaching each new milestone, on time. The new families on my Instagram feed are in and out of hospitals, specialty clinics, and even sometimes cemetery visits. They’re advocating, fighting insurance companies, and exhausted beyond belie, all for the sake of their child. They are nurses without nursing degrees. 

When someone tells me “I don’t know how you do it”, I have a tendency to tell them that if they were in my situation they’d do the same thing. They’d rise to this unforeseen occasion too. I usually tell them that this season with littles is hard for anyone, so my situation is still relatable and so I’m not downplaying the tough time they feel they’re having too. But you know what? It’s not the same. Unless your child has special needs, it’s not the same. This season is hard as hell. No, it’s not comparable to just having young children. It’s FAR more difficult. 

But you know what else? I’ve never seen families celebrate life more than families who have kids with special needs, or families who have lost a child. I’ve never seen milestones and birthdays more celebrated or children more adored than those with special needs. The storm around us HIGHLIGHTS the light shining through, when it does. We are forced to find and hold fast to joy, not because it comes easily but because we know they’re worth it. And when you work for it, it strengthens like no other.  

20th A letter to Death:

I know you eventually come for all of us, but you’re coming for my son far too soon. And shame on you for that. He was never even given a chance. He was supposed to grow up and be partners in crime with his big brother. He was supposed to become a big brother one day. How dare you steal the plans and dreams we had for our family of four. And because of you, we will never be the same. 

But you don’t get the last say. You’re part of the path to Jesus, you’re part of the path to peace for our sweet Asa. For that I am grateful. You will take my son to his Creator where he will never experience another day of pain again. Where no surgeon will cut him open, no needle will poke him, and no doctor will examine him.

In a way, you’re part of the path to healing. It’s not the way I intended or believed for, but you will still bring my baby healing. Asa gets Jesus through you. 

October 2019 

3rd Nothing particularly hard happened today, but it doesn’t take something extraordinary to happen for it to be considered a hard day anymore. Hard days are the norm around here. The looming timeframe of our sons death hangs over our heavy heads. It occurs all day long if we choose to pay attention. “Easier” days means some numbness and distraction. 

November 2019 

5th The numbness I talked about liking has worn off. I guess it’s also the shock wearing off too. Death isn’t quite at our doorstep, but it’s on its way to our home.. uninvited. I hold Asa sometimes and cry over him telling him “I’m so sorry” over and over again. And other times I find peace in what’s coming, because it means rest for him. 

13th I was recently asked what I thought Asa’s legacy is. This question punched me right in the gut. 

On one hand, I know his legacy will far surpass his time spent here. His life is no less powerful than one lived for 100 years. On the other, it reminds me that I’m angry. I hate that Asa is leaving Earth so early. I hate that he’s leaving me so early. Instead of Asa creating his own legacy, our family will have to do it for him. You each experience Asa through our lens, not his. And that frustrates me. Since finding the terminal heart disease, my mind has gone dark places. I’ve wondered what we’ll say at his funeral. We love him so much, yet we barely know him. He’s an infant.. 16 months old but developmentally about a 4-6month old. It feels like we’ve been caring for a newborn his entire life. How shallow to say what his favorite toy is or that he likes to be bounced. That’s no legacy. 

December 2019

7th- Asa passed away

8th– 9AM The silencing of the soundtrack of our lives the last 17 months is deafening. The machines have been turned off and we no longer hear their rhythmic hums and chimes. The baby monitor is off, which reminds me that there’s no baby to monitor. However as I feel my heart, the anxiety of anticipating Asa’s morning cry is gone and oddly peace has taken its place. Knowing he soaked through his onesie due to the diuretics and continuous feed and waiting for him to wake so I can change his clothes and bedding while he screams in discomfort and give him meds and change his feeding bag .. 

12th Nothing about his life was easy. That was the hardest fucking thing I’ve ever had to do. But he deserved so much love and he deserved so much attention. So I gathered it from the depths of myself. I have no idea where it came from and had no idea it was there. I can only assume any mother would draw from those depths in herself if called upon like that. I didn’t choose to go through this but I fucking showed up for Asa and I’m so so so thankful I did.