Remembering Jackson: Codi’s Story
I will always go back to the day I found out I was pregnant – scared; anxiety and fear when having your first child. I wish more than anything I could rewind my life to that moment and naively realize what could have been like I was back then.
I had a picture-perfect pregnancy. Everything goes smoothly, at least as smoothly as you could ask for, until it doesn’t. I was 40 weeks and 3 days pregnant with our sweet Jackson and was then induced. Mistake number one? Maybe, but we’ll never know.
Jackson was born on February 21, 2024… Died. He has NO heartbeat. Nothing. He’s gone. He doesn’t cry. They had to resuscitate him. My now husband met Jackson before me. They came back to talk to me about what was going on with Jackson and were given several options including taking off life support and not giving him a fighting chance.… I haven’t even SEEN my baby yet .
I lost it.
How can you tell me to let my child die when I haven’t even met him yet?
Some time later, he was put on a lifesaving flight with my husband and I was released four hours after giving birth to make the two-hour drive to be with them at the children’s hospital. We got there a little after midnight, found my husband where doctors were questioning him about what happened and trying to stabilize Jackson. I touched my baby – and was basically told “You just had a baby – go rest. He’s stable enough and we’ll talk more in the morning.”
The following days were a blur. HIE was explained to us, how it happens, what it means and what it entails. Jackson was cooled for 72 hours and we were able to put our hands on him but couldn’t hold him. He had an EEG that showed no brain activity. Even the cooling – not exactly what we expected. But maybe things will change?
After 4 long days I finally got to hold my son for the first time. I cry as I write this – because it still feels like it was yesterday. I finally remember FEELING like a mother to the baby I’ve been carrying for the past 40+ weeks. The feeling of his skin touching mine is the most soothing feeling. I couldn’t keep him for long because he was still running the EEG because he had a normal temperature and they had to compare with the previous EEG.
The next few days of testing and holding our son ended up being a blur. Woke up.. went to NICU, loved Jackson, slept, ate and repeat.
Day 5 is MRI day.
On day 6.. we scheduled a care team meeting for that afternoon. I sit here writing and still cry as I remember that day clearly. They brought in a photographer to take family photos of all of us and I remember as clearly as day a nurse came in and said “The results are in – Severe damage globally.” Well, so much for the “happy” family photos we were supposed to get. All you see in those images now is the excruciating pain as I began to realize my son would not live.
The encounter… was as terrible as you’d think.
Jackson won’t be able to walk, talk, he’ll go blind, he’ll need a tracheostomy, and he probably won’t be able to breathe on his own without a vent.
We discussed what life would be like for us – and what life would be like for Jackson if we decided to keep up what we were doing. Shelby and I asked for a few days to sort out our feelings and talk and actually… have more time. How do you make a life or death decision on the spot? Especially with your own child you’ve been used to for 6 days.
Life became blurry again. I know they have started “memories for later” projects as I like to call them. Art projects, stories, handprints, footprints.. Castings.. everything.
On March 1st – I remember our favorite doctor, Brook – came in and told us that she needed to have a frank conversation with us. She basically said that as a doctor, she couldn’t understand how a parent could put their child through so much when they knew the outcome, but as as a parent – she understands that sometimes those conversations about life choices need to take different turns. We talked more about the life Jackson would have. We will have to take care of him for the rest of our lives. And finally Shelby and I agreed that later that day we would take Jackson off life support; knowing that he could then pass at any time. We signed the DNR. The pain in my chest right now as I type these words is as real as it was that day and being the one to say “yes, you can remove his vent” while I was holding my 8 day old baby I watched them take the life support machine away from him.
We had a photographer in the next room to take family photos because we didn’t know how long we would have Jackson with us and we wanted some pictures without his tubes and vents .
The next day, we cuddled with Jackson and really felt like parents. He tried and he fought. We talked; we laughed and we just liked him. We took so many pictures and loved every little sound and hiccup he made knowing the end was still lingering.
On March 3; We asked our family to bring our dog up from home. I want my family to be together and I want a full family photo. Bentley immediately knew who Jackson was and fell in love and kissed him immediately. I will be forever grateful to the staff who allowed this moment to happen for me and my family as I will forever remember it fondly.
That day, we returned to our room in the NICU and Jackson turned around, immediately as if meeting Bentley, he was almost saying “I know mom and dad will be okay.”
That day we watched his skin lose its color. Know that the end is near. We had dinner and I remember my mother leaving that evening with tears in her eyes as she returned to the hotel “knowing” that she had just kissed her grandson for the last time.
At one point I called the doctor in because his breathing was the weakest it had ever been, and she confirmed his time had come and she and the nurse left. I hugged Jackson tightly. Maybe too tight. With my husband in the background as we talked to him and promised him that we would be okay and that his dad and I would fight to stay together and would keep his memory alive. We told him it was okay if he was ready to go and that she would feel better soon.
More than anything – I remember feeling his last breath leave his body and just knowing he was gone and calling the time on the clock myself on March 3, 2019 10:27 pm.
Dr. Brook came back probably about half an hour later and confirmed. I told her the time of death and that’s what it said on his death certificate.
We kept Jackson there for a few more hours while we waited for the funeral home to take him away. We packed up our things and I held Jackson on my chest. It was the most peaceful I’ve felt in the last 10 days and it felt strange. I still can’t describe it to this day because I honestly haven’t felt that peace since.
The funeral home showed up and I remember wrapping my beloved Jackson in a blanket, kissing his face, telling him I loved him and handing him over to the nurse as she walked away holding my baby.
We never saw him again.
My mother offered to drive us to the hotel but I said I needed to walk. Tells about the loneliest journey in our lives. We held hands and walked back to the hotel in silence, unable to hold back our sobs in the minus 10 degree weather on the ice.
From there began a completely new life that I had never imagined. Shelby and I signed the papers at the funeral home the next day and we made our way to the beach to get to the beach and try to find some peace for the next week without anyone to question us or make us reminisce. what we just went through. because. Honestly, it was the best decision we could have made.
Jackson was cremated and the day we picked him up and brought him home was peaceful. I was finally able to bring my baby home – not in the way any parent would expect.
It’s been 3 years – we’ve been on a journey of grief. The days were hard and the nights were long and sleepless for a long time. It felt like everyone’s world was back to normal and ours was stuck. I was crazy – hell, I’m still crazy. How is my life?
In our HIE group, I probably got 50 messages and I barely responded to any of them because it was so difficult. But for whatever reason I replied to Ashley Stremer. She and I hit it off when she lost sweet Peyton Rae Hope Stremer to HIE just a month before Jackson was born. Our stories are very similar and while she had a wonderful 7.5 months with Peyton – I just felt so connected to her and her daughter. I swear to this day she is part of the reason I am still here because we talked so much for months on end. We have remained friends all this time and she will be our Maid of Honor at our upcoming wedding. She is the one in my heart; and I love your daughter Peyton as if she were my own, even though I have never met her.
Sadness is like the ocean. You hear it all the time but it’s true. The waves come and go and they wash over you. Sometimes you’re treading water – sometimes you’re drowning because there’s no air. The HIE loss support group is amazing – and full of support and love. My heart breaks every time a new parent introduces themselves and tells their story to the whole group like what we’ve been through that you can’t even imagine.
But the legacy of our children and grandchildren lives on.
They live through us, as their parents. Because sometimes that’s all we can do. I talk about Jackson as often as possible. I include him when people ask how many children I have – no matter how uncomfortable it makes others feel.
In the hospital with Jackson, they gave us a recording of his heartbeat while making a Mickey Mouse bear and Mickey is now wearing Jackson’s first costume and going everywhere.. I mean EVERYWHERE with us. It’s like I’m taking Jackson on vacation with me. He’s been to Disneyland, Hawaii, and even went to Colorado as the ring bearer at my sister’s wedding.
To honor Jackson and his memory as well as help other families, we have established a non-profit organization to help fellow NICU families with NICU survival kits for both dads and Mom. We do awareness walks as well as fundraisers every year with Jackson’s name and cute face plastered everywhere.
Ultimately, a bereaved parent’s greatest fear is that people forget about their child – that people stop talking about them. I want more than anything for people to always ask me about Jackson if for no other reason than that I can talk about him.
We have his footprint on his forearm and that’s my favorite thing when people ask about him and how old he is. His sister’s footprints are right next to him and I can talk about both of my children.
Isabella entered our lives during the COVID shutdown. Pregnancy is scary but she is the light of our lives and I know for a fact that Jackson chose her and sent her to us when he knew we were ready. Ashley (mentioned earlier) gave her a book about her brother Jackson and Bella reads it often. She knows where his memories are and frequently touches the ridges on his arms and legs and she is very picky about who gets to touch and hug Mickey.
I often feel guilty because this is not our life. This is not how I ever imagined my life to be and even three years later, there are still days when I have to give up a lot to actually hug Jackson again. The thought of being able to see him again someday is what keeps me going – along with the fact that I KNOW he sends us signs when we need them most. He sends us feathers in the most random places, he often appears to my sister in the form of a butterfly, and I know he’s the reason Bella constantly giggles while playing. sleeping or talking to the corner of the house with nothing in it.
I could type for the rest of my life about Jackson. I can almost tell you how many hairs there are on his perfect little head. But I know this has gone on long enough – and there are other stories to read from other parents. If you are a family member of someone facing HIE – just know my family and I send our love.
To the doctors and nurses – remember to help and love these families every step of the way and sometimes taking the “doctor talk” out of the equation is all we need with being a parent in this scary world.
Special to Jackson’s team.. You all are amazing. You have forever touched our family and we are forever grateful to call you “the family we never wanted to have.”
Dear Isabella – I promise to always tell you about your brother and make sure you know how much your big brother in heaven loves you.
To my husband, Shelby – I promise to continue to keep my promise to Jackson to keep our family together.
And to my sweet Jackson – I will keep talking to you forever until I can hold you in my arms again. Keep sending us signs and know that your dad, mom, sister and dog brother love you forever and to the moon and back a million times over.
To YOU who read the whole thing.. Thank you for sharing this part of our life story. I wish you a wonderful remaining year, but honestly THANK YOU for allowing me to share Jackson with you because I can’t do it enough.
Best regards,