Jackson’s Journey
By Lara Gillham, Jackson’s Mom
Jackson Thomas Gillham. He was and will always be my first baby. He only had a short 6 months to be with us, but they were the best 6 months I could ask for- full of smiles, giggles, snuggles, and endless love.
Pregnancy
I remember when we found out we were pregnant and how I just ate up the blissful idea of a baby. The pregnancy announcement, the baby shower, decorating a nursery, buying adorable little baby clothes, and so on. The pregnancy was a dream- it was easy, it was exciting, and I was actually extremely calm the whole time, which is hard for a high-strung person like me. But I had nothing to fear once we passed the dreaded 12-week period of miscarriage statistics, right? So I didn’t worry. I had just started a great job, we bought a beautiful new house, and now we were going to have a baby- life was perfect. I ate up every minute of being pregnant and absolutely loved it. And to top it off, we were having a baby boy, which my husband wanted so badly since he grew up with only sisters. I was beyond thrilled for him.
Birth
When labor started, it was taking its slow and sweet time until suddenly and without much warning, I went from random contractions to pushing. What happened to the 5 minute apart warning they tell you about that indicates it’s time to go to the hospital? Apparently my body had decided it had enough and skipped that part entirely. So Jackson was born on our bathroom floor, with only me, my husband, and our doula (also a midwife) at 3:39am on Monday, May 21, 2018. Of course we went to the hospital afterwards, though he appeared to be completely healthy. They did the usual tests and confirmed that he was in fact healthy. Nothing of significance noted. We joked that his birth was going to be our crazy Jackson story, but little did we know that it would soon be overshadowed by a much sadder story.
Life
To be honest, I wanted a little girl at first. The thought of dressing her up in cute clothes and doing girly things together was just too perfect. But once we had Jackson, I quickly realized I LOVED being a boy mom. He was such an easy baby. He didn’t cry much, had no problem nursing, and just loved to be with us. He smiled at everything! He giggled at everything! He loved being held and playing with toys. I could already tell he was incredibly smart and well ahead of the curve, hitting all of his milestones early. He smiled, held his head up, rolled over, and pushed up on his arms earlier than we thought he would.
Towards the end of his life, he was learning to spin himself around on his playmat and he would take turns going in a circle and grabbing whatever toy was closest to him. He also started “posing” with his hand on his chin while laying on his stomach, which was adorable and came out of nowhere. Although he was only 6 months old, he had already decided he had a favorite color- orange. He would grab every orange toy in sight before touching the others and was infatuated with all of our orange fall decorations. This was especially pleasing to his dad, whose favorite color is also orange. I loved that they had that in common. Jackson’s first tooth came in just a few days before he was taken to the hospital and he was so calm about it that we didn’t even know until the babysitter pointed it out! He was starting to push up on his knees to crawl and he could even stand with help! This boy was so intelligent and excited to start going places. I couldn’t wait to see what he would do next.
Death
On the day Jackson turned 6 months old he had what appeared to be a cold, but he wasn’t eating normally and breathing seemed a little difficult for him so we decided he needed to see the pediatrician. I had a client meeting at work so Ben stayed home with him while I went to work. It was the day before Thanksgiving so I knew I’d be leaving work early and could join them soon. I was so excited about that day, not because Thanksgiving was coming up, but because it was the day we were going to give Jackson his first food and I knew he couldn’t wait! He’d been eyeing us eating for weeks.
I remember sitting at my firm’s Thanksgiving luncheon when I got a call from Ben saying the pediatrician thought we should take Jackson to the ER because of his labored breathing. While it did scare me, it didn’t seem like too big of a deal because we had done this exact thing when he was 2 months old and they sent us home after a few hours of observation saying it was bronchiolitis- just a viral infection, and he recovered just fine. This time was different. I showed up to the hospital and saw my little boy, who clearly did not feel well so I sat on the bed and held him while they attempted to get an IV put in him. After several breathing treatments and x-rays we were told they again thought it was a viral infection but all the tests were coming back negative. Because his breathing had not improved we were admitted overnight. That night was scary, but we honestly thought we’d just go home in the morning and everything would be fine. Morning came, and they told us they thought we needed to go to a more specialized hospital because Jackson wasn’t doing any better despite having had multiple breathing treatments overnight. It was Thanksgiving day. I remember a very sweet nurse running to the cafeteria to grab us thanksgiving food because she felt so bad for us. My little boy was put on a stretcher in an ambulance and I joined him while Ben had to follow us for 30 minutes to get to Children’s Hospital. Once we got there we were taken to the Pediatric ICU (PICU). I think that was the first time I understood the gravity of the situation. Upon arriving in our PICU room, a rush of nurses came in to get Jackson connected to more IVs and do more testing. I felt absolutely helpless as I stood by and watched. All I wanted to do was cradle my little boy in my arms and soothe him.
We spent 13 days at Children’s hospital. Each day Jackson would have more breathing treatments and he had numerous tests done. We were told he tested negative for everything, including the common cold, but he just wasn’t getting better. One of the hardest things to endure while we were there was watching our little boy scream as they tried to get an IV in him, which had to be done repeatedly because he kept accidentally pulling them out. As I mentioned, Jackson was incredibly calm and rarely cried, so seeing him scream and hearing the first time he said “mama” in the hospital while he was getting an IV inserted, broke my heart into pieces. I insisted on nursing Jackson throughout the stay- it was our bond and how he was comforted. On day 7 Jackson refused to nurse for the first time in his life. As I told Ben that he wouldn’t nurse, Ben looked down and said he’s turning blue. The nurse came in and put oxygen on him and in a matter of seconds a code blue was called and there had to be 20 different nurses and healthcare workers who rushed into our room while Ben pushed me out. I wanted to be in the room holding Jackson, but Ben said we needed to give them room to help him. So I did. They started performing CPR on him and it was incredibly difficult to watch. Ben went a few doors down to process and I stood outside of the room while one of the doctors explained everything to me. After a few hours of trying to unsuccessfully intubate Jackson, he was put on ECMO, to allow oxygen to circulate through his blood. After the procedure, he opened his eyes so we knew he saw us and knew we were there by his side. But it was only momentary as they had to sedate him due to the pain. That was the last time we saw the Jackson we knew so well. More tests were done and it was determined that Jackson had a very rare heart condition that caused an artery to wrap around his trachea, so he had a very narrow airway to breathe through and it was clogged with mucus from his cold, which kept him from being able to breathe.
At that point it was a waiting game to see how his body recovered from lack of oxygen. I stayed optimistic the entire time, thinking that yes, he would have some kind of impairment, but certainly he would recover. After several days, it was confirmed that while his other organs recovered, his brain did not. Our sweet, gentle, highly intelligent baby boy was brain dead. I couldn’t help but think of all of the things Jackson would never get to do. He never got his first real food, he never got to crawl, walk, run, talk, give us hugs and kisses, play with friends, go swimming, go sledding, play hockey with his dad. He was robbed of all of these and more. And so were we. So we spent the next two days with him, telling him our life stories, reading every imaginable kids’ book to him, getting his hand and foot prints, recording his heart beat, giving him his last bath, and just laying next to him.
On December 3, 2018, I held Jackson in my arms while they removed him from life support. Jackson came into this world just like he went out- beautiful, in my arms, and with an unbreakable grip on my heart.
Grief
We honestly had no idea what to do with ourselves after Jackson died. I had gone from being a wife and mom with a little boy back to just a wife. We didn’t have any other kids to pour love into. Not only had I lost my son, but I had lost parenthood. My entire life for the last 6 months had revolved around caring for that little boy. Now what was I supposed to do? I missed my little boy and I didn’t know who I was supposed to be anymore. Thankfully, my husband and I had each other. Without that, I’m not sure how I would have gotten through the first year. We were able to talk about Jackson together- the good and bad times, lean on each other, and just hold one another. Sure, we both had some differences in how we grieved, but it was understanding that and not pulling away from each other that got us through together. I think our marriage actually came out stronger after losing Jackson.
It is coming up on 2 years since his death and in that time we have done so much in Jackson’s memory. We built a garden in our backyard, colored with orange; we’ve met other bereaved parents of infants and have become quite close with a few of them; we have incorporated the color orange into so many facets of our lives because it reminds us of Jackson; we celebrated his first and second birthdays with friends and family (and a whole lot of orange); and most importantly we talk about him all the time and to everyone. For the first anniversary of Jackson’s death we took a road trip through several places named Jackson and even went to a place called Orange Beach. On that trip we handed out some Random Acts of Kindness cards in Jackson’s memory with his picture and a link to a facebook page about him. We now have a beautiful 3 month old daughter named Violet. We plan to tell her all about her brother as she grows up. She loves looking at the collage of photos we have of Jackson on the wall and smiles at them all the time, which melts my heart. They are two very different babies but they still share a special bond and each has a special place in my heart. Violet can never replace Jackson, but now I have someone to give all of the love I’ve built up in my heart.
