Don’t Be Afraid When You Don’t Fit In

Last month, I had the opportunity to be a guest blogger for the Married to Doctors podcast website.  If you are not listening to Lara’s podcast, you need to start! She is amazing!! I am honored to be able to share our family’s story with other medical families who may also be struggling like we were in medical school and give them hope that it will get better. So be sure to check out my article below and give Lara’s podcast “Married to Doctors” a listen (You can tune in on everything from Spotify to Apple podcasts)!

Thank you again for all of your love and support! Don’t Be Afraid When You Don’t Fit In

Edit- I was just informed that the website is no longer working. So I am attaching the article below!

Happy Travelin’

Looking back now medical school for our family was all about chasing the highs and
weathering the storms of the lows. After moving thousands of miles across the country. Medical
school was the first time we had ever been completely on our own. It was just my husband and
I. If I had to describe myself back then, I’d say I was excited but nervous about the long medical
journey ahead. Four years of school and four years of residency training seemed like a lifetime
and for this reason, I couldn’t wait to meet all the other medical student significant others who
would be on the journey with me. I just knew we would all quickly be bonded for life like the girls
from the “Sisterhood of the Traveling Pants” movie. Unfortunately, I quickly realized that my
family stuck out like a sore thumb. The only way I can describe it, is that I felt like we were
unicorns in a sea of zebras! There were only a handful of medical students with families in my
husbands’ class but we seemed to be the only ones with kids who seemed different. We
couldn’t quite figure out why but early social events just didn’t feel right. Our kids weren’t
interacting like the other kids and we just weren’t enjoying ourselves at all. We had no idea why
and after a while we just stopped trying. It was devastating for me. I felt so alone.

About a month into medical school, we received news that our nine month old baby had
a rare disease called food protein-induced enterocolitis syndrome or ‘FPIES’. This explained his
persistent episodes of projectile vomiting and lethargy. He had 38 food allergies that could
cause an FPIES reaction. Each reaction seemed worse than the last and would leave my baby
gray and lethargic, too weak to support his own head and vomiting so forcefully that he had
trouble catching his breath in between retches. I was relieved to have a diagnosis but it also
meant a self imposed house arrest for us for the foreseeable future. He was at the age where
he would put anything in his mouth and a literal crumb could trigger a reaction. I made sure my
home was always so clean that you could safely eat off my floor. I treated my house like a Fort
Knox of cleanliness and allergen-free eating. The last thing on my mind now was meeting new
friends and having play dates in our new city. Instead, I was a mama bear who needed to keep
her baby safe from the allergen-filled outside world.

With all these allergies to common foods like corn, soy and dairy, he required special
formula just to avoid reactions. We could not afford this special formula on a medical student
budget so we had to use WIC (Women, Infants & Children) vouchers to pay for it. To this day, I
am so grateful for WIC and without that program we would not have been able to feed our very
sick baby boy. Luckily, by age four, he had actually outgrown all 38 food allergies and is now
bigger than his older brother! Those years of being trapped in the house and playing with him all
day long are now some of my favorite memories. To this day, I still find myself checking
ingredients for allergens, so I guess once an allergy mom always an allergy mom!
Two years into medical school, and days before my other son was about to start
Kindergarten, my world was again changed forever when we awoke in the early morning hours
to find him having a full tonic-clonic seizure at the foot of our bed. That night will forever be
engraved into my brain because, for a few moments, we thought we were going to lose our sweet boy forever. I will never forget my husband telling me he thought he was going to have to
start CPR, because he had stopped breathing. I remember screaming at my husband that I
couldn’t remember how to dial 911. Once he was transferred to the hospital, the ER doctor told
us this was likely an isolated seizure and would probably never happen again. The next night,
just to be safe, we decided to sleep in shifts and have him sleep between us. Sure enough, he
had another seizure. This time he was able to come out of it and managed to say to us, “I hate it
when that happens.” My husband and I were in complete and utter shock! We took him back to
the hospital for an EEG. After the test, the neurologist came into the room, sat us down and
said, “The EEG was abnormal. Your son has epilepsy.” After he said those words my body went
numb and everything was a blur from then on. We were admitted that night for further testing.
That was one of the longest nights of my life. I kept thinking of all of these awful things that are
associated with epilepsy. Luckily the remainder of his tests came back normal and he was
discharged on daily medication.

To this day, epilepsy has been one of the hardest things we faced in medical school
because it is still so unexpected and can strike in a moments notice. Every seizure still scares
the daylights out of me and, at this point, I swear they have taken years off my life. I hate that
my sweet boy has to go through this and I hate that his little brother and older sister have to see
it and step up to help me when their dad is at work. I am also grateful though, because it is
making them both more accepting and accommodating of those with disabilities and special
needs. Our daughter is currently writing a speech for her school project to educate her peers
about epilepsy and what to do if you ever come across someone having a seizure.
I know what you’re thinking, it can’t get any worse for this poor family right?!? Well, yes
and no… so before epilepsy was even a factor, we knew my oldest son was special. I mentioned
before that social events just didn’t work well for us. He always did things different from my other
children. He had special dietary needs, sensory needs, etc. So, after years of occupational
therapy and conversations with his pediatrician, I set up an appointment with a developmental
pediatrician. When I set up the appointment, my husband and I both suspected he might have
Aspergers syndrome, which is now considered part of the Autism Spectrum Disorder. After
years of being worked up with other GI doctors back home in Boston before medical school,
though, I kind of figured they would just say they couldn’t find anything wrong and send us on
our way.

So, after 15 months of waiting the day finally came! My husband and I made a list of all
the behaviors and signs that we had noticed over the past years. That day, the pediatrician
came in asked me some questions before taking my son in and performing the examination. A
few hours later I was called in and she sat me down and said, “You were right, your son has
Aspergers syndrome which is now a part of the Autism Spectrum Disorder”. Once again my
body went numb. For some reason, this diagnosis was harder for me to swallow at first. From
there, it took me months of grieving, acceptance and lots and lots of tears. Then finally, one day
I looked at him and realized it’s simply a diagnosis and nothing more. He is still my sweet boy
who loves cars, America and his family so much. Even though those first few months were tough, I definitely think it was important for me to go through that to be able to be the best autism mom I can be for him today.

Even though I didn’t manage to leave medical school with a pair of magical pants or a
sisterhood of best friends, I did have a kick ass team of family and friends that supported us
(many from across the country!) through the good and bad. If I could describe myself now, I
would say that I’m stronger for it and still hopeful for the future. I know my story may be nothing
like yours but it is just that, my story. Life is what you make of it. Even in our lowest of our lows,
there were people I would have never expected to be there who showed up for us. Those are
the people who matter to me now. They may not have a special needs kiddo or have a doctor
spouse but they are my tribe and I’m forever grateful.

So, if you ever find yourself in a sea of zebras, don’t be afraid to be a unicorn!


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