Simple answer, day by day. If past me knew what obstacles future
me would face, I would’ve said there’s no route to survival. I guess God knew
what he was doing when he wouldn’t let me see the future. The beginning of 2025,
I scrolled across a crossword puzzle from another medical mom on Instagram. She
wrote, “the first 3 words you find will be how your year goes.” I found
purpose, miracles, breakthrough in that order. I decided to manifest this for
our life. As a child, I was known for stubborn believing. For example, I was at
a Benny Hinn event for my birthday with hundreds of other people. I turned to
my mom and told her; I am going to get a picture with him. I found a security guard,
told him it’s my birthday, and that I would like a picture with Benny Hinn. Not
long after, I was called up on stage by Benny Hinn for a picture. Looking back
now, I was manifesting as a child. As l gained life experiences, some good,
some bad, somewhere along the way I lost that. This was the year I was
determined to gain it back.
Medical life can easily overwhelm a human being and it’s so
important to not let it break you down. Sometimes it’s your mental health that
gets you through a really tough situation. I have been blessed with a family
and friend support system. I have a mother and brother who signed themselves up
to be certified state caregivers to help care for my daughter. There is a page
of inspiring quotes taped in my bathroom. But when that’s not enough and the
weight of her health crisis is weighing me down, I reach out to diagnosis
specific support groups. Reading firsthand how other families navigate similar circumstances
is immensely beneficial for those walking their first steps.
But I didn’t just happen upon these groups, and I didn’t wait
for help to come my way. Early on in this journey, I had what I would consider
a mental breakdown. I was aware I was mentally drowning, and I knew doing
nothing was not a sustainable way to continue life. I was naturally born with a
fierceness and that’s what I needed to pull myself up and out. I took it upon
myself to sign up for mindfulness therapy not knowing if that was the answer. I
gained countless tools through therapy and learned that this in conjunction with
other healthy habits can help propel you forward and make life manageable again.
The exhaustion of mixing together a 24hr feed for your child and her machine,
administering multiple medications at different times, constant position
changes, therapy, and doctor visits on a daily basis is out of this world. Through
the exhaustion I would catch a glimpse of my daughter and tell her, “I would move
heaven and earth for you.” But how can I promise that if I am not in a condition
to do so? It is so easy to say my child is priority above all, but it is also
necessary to care for myself so I can advocate for her.
It's no surprise the system is setup for medical families to
fail. They make you fill out a book long application until your personal life
and finances are naked and bare for them to discuss how they please. Then you
may or may not be approved for pennies on the dollar. Mind you a simple google
search will tell you the average price of a basic pediatric wheelchair is
$4,000+, electric Hoyer lift to safely transport your child (not ceiling
mounted) is $3,000, a medical bed is over $2,000. Why do I tell you this?
Because no, insurance does not always cover everything, and you can’t save up for
these items because then you are ineligible to qualify for further help. But this
is not a dead-end street. If a group of people know how to find a way, make a
way, or create a way, it’s medical parents. There is a secret underground mafia
mom mob exchanging high-cost medical equipment and supplies. Okay, it’s not
really an underground mob, but it is a group of individuals who morally believe
not charging others who are in need is the route to go. It is out of the kindness
of their heart to help others, as the world should be. When you find this group,
don’t let them go! Don’t know where to look? Ask around and then ask some more.
Keep going until you find it.
The days that life doesn’t feel manageable, is where my faith
comes in. It looks different now than what it did before entering the special needs
parent world. I couple the reality of my daughter’s diagnosis with the hope
that miracles are still possible. When your child has one of the most severe
forms of epilepsy that affect her day to day living, you start seeing little
bits of her fading over time. I have to believe there’s hope, I have to manifest
it. I started 2025 off strong believing her life has a purpose, a seizure-free
miracle was coming, along with her breakthrough. I was in contact with the providers
about her research study getting published and how the medication we’ve been
waiting for was finally in a substance she could take. This was it! In August
the provider shattered those once hopeful thoughts. We discovered that
medication targeted a different pathway than what my daughter needed. There
were no alternatives or next steps offered. It was back to the drawing board. I
cried and prayed and cried and prayed some more. This was supposed to be her
year, why didn’t it happen? Through my processing I realized my early 2025
manifestations weren’t directly about Olivia as much as it was for God. That
his purpose for us is beyond anything we could imagine, he has worked miracles for
Olivia and still can, and breakthrough is taking place by merging western
medicine and faith. Maybe praying to God for strength to believe for a miracle
isn’t your thing. Maybe it’s a higher power of some sort or the universe. Whatever
it is for you, it is something you have to seek for yourself.
My character, my nature, is to give back. It helps refill my
cup. Now that I am over 6 years into this, I can see the gaps that existed in
the early years, and I can help to ensure other families don’t experience the
same. Find what fills your cup and continuously fill it. Overfill it if you can
so that there’s reserve on the days your soul is running empty. I am good at advocating and even better at
surviving. Maintaining my focus on day to day helps my mind from spiraling into
the unknown future. My hope is while you read this, you were able to pick up some
options to try out, and that you don’t have to seek and research every option, just
know that help is on the way.
