I was working on my master’s degree in health communication
when I met my husband. Fast forward a year and a half later, I was sitting in
the NICU with our newborn daughter feeling like I should have paid more
attention to the practical aspects of the degree I had been working on. I
thought when we left after that hellish week, that would be the worst health
thing our daughter would ever go through.
I was wrong.
Fast forward again to when our daughter was 15-months-old, I
sat in the parking lot of an allergist office crying with relief and joy. We
finally had a name to what had been going on with my daughter – FPIES. I found The FPIES Foundation and through them various online support groups. I found a
virtual village of other parents that were leading equally ridiculous lives and
that “got it.”
One of the ways I deal with stress is through art, painting,
sewing, drawing, knitting, and so much more; really, I have tried my hand at
anything artistic over the years, even glass blowing!
One night I was laying in bed—exhausted -- it had been a
long day with a toddler and 4-month-old both reacting to something. As a mom of
two children with FPIES and other various medical complexities, I am used to
being exhausted, but somehow that day was especially draining.
By some miracle they had both fallen asleep relatively
early. By all that was good and holy, I was going to take advantage of that and
get some sleep! I lay down, but my brain wouldn’t stop working. I kept thinking
about how my children had such different lives, how my family had such a
different life, than almost all of my friends. I thought of all the medical
debt we were not so slowly accruing, and how terrified and helpless it made me
feel to be treading water emotionally and financially so much of the time, on
top of the already helpless feeling that comes from seeing your child(ren) sick
so much of the time. I sent out a desperate prayer (one that I had said many
times before), of, “Please help me figure this out! Please help me figure out how to take care of my family!”
All of a sudden, a fully formed idea flashed in my mind of a
line of illustrations featuring animals or critters with different special and
rare needs. Lists and images started zipping through my brain and instead of
falling asleep I was rolling over and reaching for a pad of paper.
Several hours later, I had a paper filled with ideas for
different animals that I had dubbed, Awareness Critters. I also had sketched
out and then painted an illustration with a mother mouse and her child carrying
teal pumpkins. With Halloween coming up
and Global FPIES Day right around the corner, with allergic reactions of my
children fresh in my mind, I felt inspired.
I went to bed feeling happy. It had been a long time since I
had been creative and suddenly I felt like I had found a calling – even if I
was the only one who ever saw the paintings.
Hesitantly, I posted my painting to my own Facebook page and
then to a couple of Facebook FPIES support groups. I shared the start of my
idea and waited to see how people responded. I felt like I had just jumped
naked in front of a giant crowd, and honestly wondered if my art was good
enough, and if anyone would like the idea . Self doubt can be exhausting!.
I was overwhelmed by the positive response and then by
requests for illustrations to feature specific issues - diabetes, vision
issues, Gtubes, NG tubes, leg braces, epilepsy, and so many more. Obviously, I
had hit upon an idea and a need that wasn’t being met.
I believe that everyone, especially the youngest and most
vulnerable in our society, should be seen, heard, and loved for who they are
and not who the media or society says they “should be”. We are all deserving of
love and compassion. We all have the same basic wants, needs and even dreams.
My hope for these Awareness Critters is that they bring
awareness to families and individuals struggling with Rare and hard issues.
I have big dreams for these Critters, bigger than I even
want to admit out loud yet. I dream of being able to do something that I love,
that can support my family and bring about positive change in the world. I
dream about being able to bring awareness to the amazing children and families
that face the challenging situations that special and rare needs bring daily. I
know the exhaustion, terror, isolation, and joy that come with raising these
amazing children. I dream that Rare won’t mean “unheard of” anymore!
This post was written by Brittany Huston. Brittany is the mama of four beautiful children, the two youngest have multiple complex medical conditions, including FPIES. Her family lives on a small five acre farm in the high desert of New Mexico. Brittany's days often consist of running around after small children, working on craft projects, and chasing free-range turkeys out of the family's garden. She uses her family's daily life, the joys and the struggles, and the nature that surrounds her to help inspire her art and writing.
This post was written by Brittany Huston. Brittany is the mama of four beautiful children, the two youngest have multiple complex medical conditions, including FPIES. Her family lives on a small five acre farm in the high desert of New Mexico. Brittany's days often consist of running around after small children, working on craft projects, and chasing free-range turkeys out of the family's garden. She uses her family's daily life, the joys and the struggles, and the nature that surrounds her to help inspire her art and writing.
