Jennifer is a working mother of 6 with an incredible story that will absolutely bring you to your knees, make you think about motherhood differently, and remind you that not only are you capable of handling so much more than you think, but that sometimes our worst fears are the most profound blessings. I interviewed Jennifer for nearly an hour and was completely entranced, by not only her story, but her amazing insight and wisdom surrounding her circumstances. The interview was powerful, incredibly special, and so important for all mothers to hear….so of course, I had a terrible technology malfunction and realized, after the fact, that it did not record! Rather than take another hour out of Jennifer’s busy life to redo the interview, I’m retelling her story here.
Jennifer and her second husband Miguel were excitedly expecting their first baby together. Jennifer had 3 children from her first marriage, but this little girl was Miguel’s first. Everything was going great, and baby Kaidence was growing and developing on track. Her 12 week ultrasound was perfect, but at 20 weeks they received some scary news.
Kaidence was showing fluid on her brain. Obviously this news is so scary, something any parents would receive with worry and fear, but the doctor’s assured them it wasn’t that uncommon and that she would receive a stent after birth and grow into a well adjusted, normal kid. She could potentially have a few learning delays, but for the most part, she would be just fine. However, as the pregnancy progressed, Jennifer noticed some differences carrying Kaidence from her other kids, mostly in the type of movements she felt.
“Babies just aren’t supposed to move like that,” she told me. They found out Kaidence was having seizures and decided to induce. Kaidence was taken to the NICU after birth. They didn’t get to see or hold her right away, but were by her side waiting for the MRI results and neurosurgeon’s recommendations on when they could operate and place the stent.
Then, unexpectedly, a random doctor they had never met popped in and asked if they had been told the results of the MRI. They said no, that they were waiting for the surgeon, and she replied “there will be no surgery. Your baby has Lissencephaly, a fatal brain disorder and she will never walk, never talk and probably not make it until her first birthday. Her brain stopped developing at 12 weeks gestation. She’ll never grow past 2 months and her best case scenario life expectancy is 5 years.” Jennifer said she is not a dramatic person but in that moment she fell straight to the floor, her body just gave out on her. “When you hear that your baby is going to die, it’s just too much.”
In an instant, she went from thinking her baby needed a simple surgery to being given a terminal diagnosis. After the shock and horror of being told her new baby was going to die, she shifted into fear around around all of the logistics, “how will I tell my kids, how will we afford this, how can I take care of a special needs child, how will I go back to work?”
Life after that became a complete blur. Kaidence need an NG tube for food, she needed the be catheterized, she was having violent seizures. Finally they were able to take Kaidence home and slip into life as the new normal. Jennifer said those first few months were a blur, that she kept pressing the doctors for a timeline, that she wanted to know when she could expect her daughter to die. She wanted to prepare herself and she didn’t allow herself to get to close to Kaidence. Of course she took care of her, loved her but was always slightly detached, knowing she could be gone at any moment.
“I cried all the time. They almost didn’t let me take her home from the hospital because they were worried I was depressed. I wasn’t depressed, I was just so sad, so overwhelmed, so unsure how I could do it all. I was so focused on what I was losing, on everything she couldn’t do or wouldn’t be able to do. I was mourning the life I wanted. I was mourning the life she wouldn’t have”
“I had a hard time bonding with her because I was waiting for her to pass away. I didn’t let myself connect with her for a while. I kept my guard up and was just on automatic. I was obsessed with trying to determine when she would die.”
Then, one day at church when Kaidence was around 6 months old, the pastor was talking about treating your life like a CEO, about taking control of your circumstances and being in control. As a bank manager, Jennifer heard and understood this message as clear as day. She realized, in that moment that her family needed her to get it together. That she needed to be the one to pull her family together, to get control and lead them. She realized that instead of just waiting for Kaidence to die, that she would become her advocate, that she would fight for her in every way and do everything she possible could to not only extend her life, but give her quality of life no matter how long.
And so, she did. From then on, everything else changed. Jennifer feverishly pursued options in alternative medicine, they saw chiropractors that not only helped make Kaidence more comfortable, but has helped reduce her anti-seizure meds. They started her on a ketogenic diet, they worked with oils and therapists and did everything they could help her. And she has surpassed every expectation.
Kaidence is now almost 4 years old. Over the last 4 years, Jennifer has fully embraced their new life and has a profoundly new perspective on life and mothering. She decided that instead of worrying about keeping Kaidence alive, keeping her in a bubble away from the world, that they will leave her life in God’s hands, and that they will treat her like every other kid. They want Kaidence to feel the sand on her toes, and the water on her skin. They take her on vacations, to family BBQs, to church, and treat her the way they do all of their children, even though it’s not easy. Kaidence is still on a feeding tube, catheter, and lots of medicine. Kaidence has taught her siblings how precious life is, how much they have they take for granted and how to love without limits. They hold her, they know how to feed her, and handle her meds. Her 9 year old daughter can completely help with all of Kaidence’s care.
“Kaidence is an angel. She is incredible. She bring so much joy to us and to our family. Ever since her first ultrasound, in almost every picture of her she seems to have a halo. People love to be around her, she just radiates love and goodness. She is the most imazing, incredible, miraculous blessing. She has changed our life and our family.”
When Kaidence was 9 months old, Jennifer found out, unexpectedly that her and Miguel were expecting twins. “There are NOT 2 babies in there, are you kidding me!” was her explicit reaction. But there was and a few months later Teo and Jordan arrived. Just when she thought life couldn’t get any more chaotic, one of the twin boys, at 6 months old, started having infantile spasms that landed him in the hospital for weeks. For 6 months they watched him decline and developmentally regress, not knowing what would happen. But after sticking to her guns, following her natural health remedies, and fighting for him as well, he is completely normal, rambunctious and obnoxious 2 ½ year old. His docs were amazed. Through all of this, Jennifer has learned gratitude most of all.
“I used to be a frazzled, exhausted, not selfish, but just worn out mother who would get so annoyed by HAVING to do this, do that. But after Kaidence and the struggles with Teo, I now see parenting completely different. I think, I GET to do this. I GET to put them to bed each night. I GET to cart them to activities. I GET to break up sibling fights. I will never get to do any of those things with Kaidence. She will never run and play. She will never be like her brothers and sisters and knowing that, allows me to see what an absolute privilege it is to have healthy kids who I do get to mother. And my kids get to see it too, that everything they get to do, even chores, is something their sister will never be able to do. They understand what a gift their life is and to not take it for granted.”
On three separate occasions, Kaidence battled infections that they thought would end her life. Three times hospice care told Jennifer to start planning her funeral. Kaidence continually surpasses everyone’s expectations and is a reminder in the power of living fully for today, without fear of the future or what tomorrow may bring.
“Plans change and life changes. Sometimes life goes in directions we would have never planned. Give yourself time to mourn the loss of the life you had planned, but don’t stay there too long. Move forward, for yourself and for your family. Enjoying life is a choice. This is your story and it is completely up to you to choose happiness, chose to keep moving forward, and to make the most out of it, no matter what.”
Okay, once you wipe your tears, I encourage you to share this post with other mothers in your life. I know I needed this reminder and we all should thank Jennifer for sharing her profound wisdom with all of us. Agreed?