It was about 3 am.
My son had been screaming for about 10 hours. This was our life, vomit,
epic blow out diapers, screaming, and never sleeping. For the past 22
months, every single day, this had been our life. It was 3 am, and I was
desperate to find something, someone who could help my son. He was in
near constant pain, and failing to thrive, and no one knew how to help him.
For what felt like the
millionth time, I did a google search of his symptoms, but that night,
something new showed up. A disease I had never heard of, and a website
that was still in blue, and not one in purple that I had searched through a
million times before. The FPIES Foundation. It asked questions
about symptoms, and every single one of them was something that was affecting
my son. Suddenly, I felt hope. Suddenly, all of the pieces feel together. In that moment, I knew. I knew I had found
the answers. I printed pages and pages of information to take to our doctors,
and that is how it began.
In the year and a half
since then, I have been able to connect with other moms whose children have
FPIES, moms who get me, and support me, and pray for my son. I will never
meet most of them in real life, but they are my bond, they are my people, and
together we will change the world.
Now that I have the
resources technology has given us, I have access to everything I need on my phone,
and I can take my sons information for his doctors with me everywhere I
go. I can keep his food diary, symptom
log, sleep log, and all the other important information I need to get him the
care he needs, on something smaller than my wallet.
Twenty years ago, this
would have been impossible; I probably would have never found answers for what
was wrong with my child, what was making him so ill. He probably would have died, and I would have
never had the chance to help him. Even
ten years ago, this would have been hard, there were few blogs, and much less
information out there. The more people learn about technology, the more they
will share online, and because someone did, it saved my sons life.
It all started with a
google search, and then after a diagnosis, a facebook search for support, and
it has changed everything.
Now, I know what is affecting
my son, and now, I have the help and tools I need to get him help, and
treatment. Now, I have people in my corner, a support system, and a
community of moms backing me up. Now, I can return the favor by
advocating, volunteering, and bringing awareness about this rare disease, so
that another mom, in a frantic 3 am google search, can get the answers she
seeks for her sick child too.
It was 3 am, I was
desperate, I did a google search for what I told myself would be just one more
time, and it changed my life forever.
