Hi, I'm Allie, and I need a vacation!
When I was eighteen, in 2011, I had my first daughter, Ivy, at 24 weeks gestation. She was 1lb 4oz, 12 inches in length. She had a 117 day NICU stay, heart surgery, and eye surgery. She survived the NICU, but was left permanently disabled, both cognitively and physically. I was a single mom, attending college, working and caring for my medically fragile child. My life felt like a huge mess!
My (future) husband came home from his mission in 2014, and life sped up from there. When we started planning our future together, my best friend gave me the gift of the Mothers Who Know planner. She knew I had a wedding to plan, college to finish, and many doctor appointments to manage for my daughter.
My husband and I got married, but were far too broke to take a honeymoon. We were just happy to be together.
We were so excited to be pregnant with our daughter in 2017, we were so relieved that I had made it to full term. The morning we went in for our scheduled cesarean, our baby girl kicked me all the way to the hospital. By the time we were checked in, they hooked me up to a monitor...and she no longer had a heartbeat.
A few days before, a texting driver had rear-ended me going 40mph, when I was completely stopped. My doctor had assured me the baby was fine, but the accident had caused a concealed abruption, and our baby had slowly been losing her oxygen supply. It was just terrible timing for her to die twenty minutes before her scheduled birth. Norah was born on September 5, 2017 at 6lb 1oz 21in long, silent and beautiful.
It turned our lives upside down. I could hardly function. My empty, aching arms weighed me down until I could barely get out of bed. I relied on my planner each day to remember simple things, like taking my medication, remembering to shower, and each month I would meditate on the quote, reminding myself that I would see me baby again someday.
Less than a month later, tragedy struck our family again. My youngest sister-in-law died unexpectedly. Lindsey, our beautiful, incredible, lacrosse-playing, choir-loving, baby of the family was taken by Toxic Shock Syndrome. She was on life support for ten days before no brain activity was present, and we made the decision as a family to end her care on October 1, 2017.
Shortly after the deaths of Norah and Lindsey, my surviving daughter was diagnosed with Obsessive Compulsive Disorder with psychosis. We hospitalized her many times, and she just did not seem to be getting any better. My husband and I felt incredibly broken, but held fast to each other, and held out hope for better days.
On Christmas Eve 2017, we found out we were pregnant again. We were overwhelmed with gratitude for our Savior, and used my planner to document the pregnancy, as well as the things we were grateful for each day. In July of 2018, our baby boy, Judah, was born at 32 weeks. He had a 26 day NICU stay, followed by an additional five weeks intermittently on other units for aspiration and arrhythmia issues. In September of 2018, I was driving in the car with both of my children, and Judah refluxed and aspirated. I successfully administered CPR for eleven minutes, saving his life.
Though I managed to save his life, the trauma of that event, losing Norah and Lindsey, and Ivy's NICU stay all caught up to me. I was back to using my planner as my life line. "Take your medication. Wash your hair. Call your doctor. Keep track of your symptoms. Remember to eat. Remember appointments 'A', 'B', and 'C' for the kids.
Because of Judah's health problems, he has an NJ (nasojejunal) feeding tube, oxygen, and monitors. He must be tube fed 24 hours a day, 7 days a week. His monitors must be watched at all times, so either my husband or myself are awake at all times. We have not slept in the same bed for over four months. (Needless to say, we need a vacation. Together. Somewhere warm. And quiet.)
Medical debt has piled up, and we were forced to leave our home. We are currently staying in a family member's basement, just trying to stay afloat. Though we would love to take a vacation, it is just a happy fantasy for now. We by no means feel sorry for ourselves, we are incredibly grateful for our beautiful children. We are hopeful that things will get better for our family.
I did not have enough money to purchase a 2019 planner, but luckily my sister gave me one as a Christmas gift. It inspired me to get back on top of my life and to-do list. Yesterday, I was able to schedule all of the appointments I needed to catch up on for the kids, my husband, and committed to getting myself the mental healthcare I need and deserve. My planner still reminds me to take care of the important things, like ordering more feeding tube supplies for my son, and take my daughter in for her physical therapy. It gives me a sense of order in the chaos that is my wonderful life.
My husband and I would love to go on a vacation to remember why we fell in love, and what it feels like to be able to laugh and play together.
Connect with Allie instagram at: Mom.still.standing