Written by Tiffany Pasillas.
This post was written to contribute to the topic of Motherhood for the What Lola Likes blog by Tiffany Pasillas. All facts, opinions, and professional tips are Tiffany’s.
Have you ever thought about all the tiny cells that make up your kids’ bodies and all that is possible when their life is created? I surely hadn’t when I embarked on the journey of motherhood. But, somewhere in the first handful of weeks, during cell division, my youngest daughter, Aiyana’s body made three copies of the eighteenth chromosome, instead of two. This is known as Trisomy 18 or Edward’s Syndrome. What that means in the medical textbooks and medical community versus what that means to her and our family are two very different things.
Trisomy 18 is written about in textbooks and taught in medical and nursing school as “incompatible with life.” Statistics like ‘85% will die before two weeks old’ and ‘less than 10% live beyond one year old’ are told to newly diagnosed parents and then they’re given the option to terminate or continue the pregnancy. Rarely is information given about living people, interventions, treatments or what care looks like of a child with T18. This bleak and hopeless picture sent me down the rabbit hole of the Internet to find the other side of this, when I received this diagnosis at 13 weeks pregnant, facing that exact decision. There had to be people and families living with this diagnosis. There just had to be.
What I found was more full of hope and life than I’d ever expected. I found groups of parents online with children with Aiyana’s diagnosis and Trisomy 13, a similar rare Trisomy diagnosis, caring for, loving, grieving and fighting for fair care for their medically complex kids. I saw parents of babies and kids who had passed and parents of living kids. I saw babies, toddlers, young kids and even teenagers and older adults. I saw the oldest known living people in the group with Trisomy 18: our Trisomy sisters Sherry-Lynne, who is 41, and Megan, who is 40. I learned that there has been almost no research on Trisomy 18 and that the statistics and odds that medical providers give care options from hadn’t been updated in decades. I saw about a dozen names of doctors and hospitals being passed around as “Trisomy friendly” because not all care is equal for T18 kids in the U.S. or abroad. From that moment on, I knew more was possible for her than the picture I’d been given initially. So, I fought for Aiyana with everything I had because even if she only lived for one hour, it was one meaningful hour that she deserved to live. Aiyana turns two-years-old this September.
Life “before Aiyana,” as I’ve affectionately dubbed it, was drastically different than life “after Aiyana.” There was more freedom to travel and choose what our days consisted of before but now there’s infinitely more purpose. Before, there were lots of playdates, events and parties. Now, there’s more time at home, doctor and therapy appointments and online celebrations. Mothering a child with Trisomy 18 has been like a shedding of skin for me. It’s been letting go of who I was to become the mother that she needed me to be. The amazing thing that has come from that though, for me, has been the realization that the mother I’ve become has been for the betterment of all of us: myself, Aiyana and Leilani, my three-nager.
This letting go process has required me to acknowledge and live with uncertainty. It’s been a leaning in to some of the scariest things a parent can face and smiling and laughing despite the fear. It’s learning how to stay in the present and appreciate what’s in front of me, rather than getting sucked too far into the past or future that I can’t control. It’s learning how to manage my stress and anxiety and reprioritizing what truly matters. It’s been going to great lengths to find doctors who would repair her congenital heart disease and congenital diaphragmatic hernia, eradicate Hepatoblastoma cancer, manage her epilepsy and optimize her feeding. It’s been creating normalcy for us while we lived far from home in hospitals and Ronald McDonald Houses for 8 months. It’s been finding hand therapists to open her once clenched fists. It’s daily physical, occupational and speech therapy for her. It’s been an intimate learning of how her unique body works and what it needs and fiercely defending that.
Yes, life “after Aiyana” couldn’t be more different than before. But, for all the uncertainty and sacrifice, there’s unimaginable joy and happiness. We’ve experienced richer relationships with those we know love us as we are. There’s a deeper appreciation for the little things and fun in the simple moments. To watch Leilani with Aiyana at home is something that love must be made from because it’s the purest thing I’ve ever seen. That’s what all of this has been about for me: making time at home with my two girls together possible. Oh, what an amazing year home it’s been!
It’s been the honor of my life to be her mom and in complete honesty, if I had to do it all again—give up everything I have, go through all we have—I’d do it again in a heartbeat because nothing is more worth sacrificing for than our kids, right? They are the biggest, hardest, most amazing things in our lives. That’s my littlest love Aiyana. Her having Trisomy 18 doesn’t make her any less deserving of that love or life. I’m just thankful we get to experience it.
TIFFANY LESLIE PASILLAS
Tiffany is the wearer of many hats but her favorite is mama to her two young girls, Leilani and Aiyana. Her pre-mom life consisted of 15+ years in the brand communications and marketing field, MBA from Pepperdine University and BA in journalism and marketing from San Francisco State University. She can be found on her Instagram talking about caring and advocating for a medically complex, special needs child with Trisomy 18, tiny house living in their 350 sq.ft. RV, life after divorce, raising empowered and emotionally aware daughters, whole family wellness, and their journey to a thriving new normal. There may also be tantrums, messes and hilarious things toddlers say because it’s mom life after all.
VISIT HER INSTAGRAM HERE.