My best gal Lila is going to turn 9 on September 12th. Her birthdays always make me feel nostalgic. You see, six days after Lila was born she was diagnosed with full Trisomy-18. This makes me passionate about supporting terminally ill children and their families.
For those of you who don’t know, Trisomy-18 is sometimes also known as Edward’s Syndrome. T18 is a rare genetic disorder that is similar to Down’s Syndrome, but it is far more deadly. Lila is considered terminally ill. She has outlived her life expectancy by almost 9 years.
The day we received Lila’s diagnosis, the pediatrician with the worst bedside manner I’ve ever seen handed me a piece of paper with doom and gloom printed on it. She didn’t even say the words out loud. I had to tell my wasband that our baby was going to die and probably soon because she wouldn’t. When we asked about any odds of survival she made it seem like Lila was a lost cause.
There was no hope.
We could always have other children. She called in spiritual care (against my atheist wishes) and made it seem like Lila was on her deathbed. All of this despite the monumental successes we were seeing, like how Lila was able to breathe without support, and even eat some by mouth.
Over the next several days after Lila’s diagnosis there was a stupid amount of tests performed on every one of her major organs. She had multiple heart defects, weak muscle tone, dysmorphic facial features, a possibly wonky kidney, etc.
The doctors and nurses spent hours on end observing her perceived shortcomings and documenting them in her medical records. The focus was singularly on Lila’s terminal illness. There was nothing celebratory about those first days and weeks. When I look back on those times I just remember a grayness and melancholy and I feel sick to my stomach. Nobody wants to congratulate the mom of the baby who is supposed to die any moment now.
That is not how anyone’s first foray into parenthood should go.
I often get asked the best ways of supporting terminally ill children and their families. If you encounter a friend or a family member, what can you do?
Just be cool. Seriously.
Throw that baby shower.
If you’re nervous that the baby will die, which is a very real possibility, you could instead ask for things that would be beneficial for the parents during a lengthy NICU stay or after the death of their precious babe. Gift cards to local restaurants are great. They take the pressure off of having to pay for meals, and remove the need to cook for yourself and cleanup after. Gas gift cards in case excessive travel is necessary. Gift cards for personal care services. Money is often tight after a catastrophic diagnosis like this. Self care comes last. Help take some of the guilt away from the new parents by treating them to a haircut. Seriously. Even this far out, my self care game is still weak as hell. Also, cash is always helpful. Either scenario comes with a hefty price tag attached.
Celebrate the new baby.
Even if they are only here a short while. Even if they never make it out of the womb. They existed. It’s important for all parents that their baby be acknowledged and celebrated. Say their names. Shed tears. Give lots of hugs. If successes come their way, be a loud cheerleader. It can feel overwhelming hearing nothing but negatives when you’re super hormonal and your boobs feel like they were dipped in a meat grinder. I legit ugly cried like Kim Kardashian on a nurse’s shoulder out of the blue one night because everything just seemed so terrible. Nobody reminded me that my kid was actually doing really well. They just kept harping on what the books said would be coming.
Don’t fall into the trap of expecting the new baby to die.
Yes. There are monumental odds stacked against that tiny warrior, but with appropriate care the majority can go on to live meaningful lives. Assuming the worst doesn’t do anyone any favors, and expecting these people to become the next statistic is hurtful and alienating. Don’t fucking do that. These kids are resilient. When loved and nurtured appropriately they do amazing things.
I was told that Lila would always be a vegetable. They were even surprised she could cry because her functioning would obviously be so low. Now she swears. My 8 year old veggie is a daddy’s girl. She prefers him over me any day. Since birth. She laughs when her brothers get scolded. Like a typical big sister. She is a boy lover and will not hesitate to flirt and hold hands. Her first word was. “Hi.” I didn’t believe she was saying a word at first because I was told so many times she would never have that capacity. It wasn’t until multiple other people heard it at the same time as me, that I allowed my perspective to shift and change.
These tiny but mighty bad asses bring so much love and joy into the world. It doesn’t matter if their time with us will be seconds, or years. They all deserve to be loved fully and without reservation. Embrace their uniqueness. Love them hard and be really loud about it.
Again, throw that shower. Plan that birthday party. Make those happy memories, because those are what get you through the tough times. That’s the best way of supporting terminally ill children and their families.
