My lighthouse

Is it Friday already? Time has had a jarring presence in our house lately: speeding up then slowing down, each day blending into the next, not adhering to the laws of physics. I rarely leave our home, and if I do I don’t go far, never wanting to miss a moment when Miss A might open her eyes or in fear of her taking a bad turn. I feel like I’m adrift with no land in sight. But there is one thing helping me keep my bearings amidst these rough waters: Jackson. I know everyone thinks their kid is incredible but this kid, Adelaide’s big brother, is really something else. He is my lighthouse in the storm.

PJ cuddles, October 2019

PJ cuddles, October 2019

We’ve never hidden Adelaide’s medical problems from Jackson. As I wrote in “Big Brother” and “Jackson’s Song”, he has witnessed seizures and coached her through oxygen desaturations. We’ve fielded his questions as they’ve come and watched as he’s taken pride in teaching his friends and classmates about his sisters medical equipment. He even wrote a song for his sister and made an appearance at last years CURE benefit. This bizarre medical odyssey has become his normal too. So, when we made the difficult decision to transition Adelaide to hospice it only felt right to let Jackson know what was happening.

We chose the Sunday before he started second grade as the day for our family meeting. Not knowing how he would take the news, we figured that starting the new school year could offer him a much needed distraction. In the week leading up to our conversation I ordered several children’s books on grief and Miguel and I discussed what we would say. After reading the book “The Memory Box” about a child who collected items that reminded them of their lost loved one, I bought craft supplies so Jackson could make his own memory box. I hoped the box could bring Jackson comfort in the future and goodness knows my son has never turned down a good craft.

I grew incredibly anxious thinking about having to tell Jackson. It felt awful to have to share this dark cloud with him but we knew it wouldn’t be fair for him to be surprised by her death either. Through tears, we explained to Jackson that his sister would not grow up to be a big kid like he was. That her brain was really sick and that no doctor in the world could make her better. That we weren’t sure when, but at some point in the next few months, Adelaide would die. Our hospice social worker had explained that it was very important to use the “d” word to give him the best chance at understanding. Jackson has since expressed that he wishes to grieve privately because his feelings are his “private information”. So out of respect, I will refrain from sharing his response. 

The memory box, September 2019

The memory box, September 2019

That afternoon we made his memory box and he has slowly and quietly been collecting its contents. To be honest, following that initial conversation, I wasn’t sure that he got it. Death is a lot for an adult to process so how in the world would a seven year old make heads or tails of it all? Once a week or so I’ve chosen one of the books from his shelf about grief and loss to read as his bedtime story. Afterwards, I’ll check in with him to see if there’s anything he wants to talk about. Most of the time he doesn’t say much but a couple times he’s let me know, in a very clear way, that he understands what’s happening and how he’s feels about it. It’s sort of shocking to hear a child working through such complex emotions and in such a healthy and mature way. Then 2 minutes later he’s making fart noises and telling me about some crazy thing he saw on YouTube. Kids are resilient, man. Really freaking resilient.

About a year ago we started Jackson in therapy. He referred to his therapist as his feelings doctor and he loved having his own one-on-one time to talk about himself and his feelings. Through this process we learned that many times the able-body/minded sibling(s) will hide their own painful feelings from their parents out of fear of further upsetting them: in an unnecessary role-reversal the child tries to protect the parent. With his therapist though, Jackson could be completely honest. Of course we’ve let Jackson know that we are here for him and that he can tell us anything. I often wish he would be more open with us but if he’s more comfortable speaking with someone else, then thats ok too. The most important thing is that he’s talking. So when our hospice team offered therapy for Jackson in our home it was a natural progression. In addition to open communication and therapy we have made sure that Jackson’s support system runs deep. We told his current teacher, as well as his past teachers, what is going on at home and he knows that he can request to speak with any of them at any time. They maaaaay also be doling out a few extra hugs on the side.

I’ve accepted that I can’t change Adelaide’s future but I can make sure that Jackson has the best opportunity to emotionally navigate his. To do this though, we have to be sure that Jackson is not neglected while everyone clamors to keep his sister safe and comfortable. Miguel and I cannot unknowingly sacrificing his well-being while grieving hers. So, I will continue to get out of bed everyday because he needs me to, but also, I need him too. As I write this, sitting with Adelaide and analyzing her breathing, I can hear Jackson laughing and playing in the other room. Even in the midst of the most suffocating dark he brings light into our home. Guiding our ship on this journey one fart joke and squishy kiss at a time.

Photo Credit: Jennifer Loomis Photography

Photo Credit: Jennifer Loomis Photography