Megan Christie’s Journey in Alexandria with Neurofibromatosis

When Megan Christie found out her son Logan was diagnosed with Neurofibromatosis- Type 1 (NF- 1), a genetic disorder, she was fearful. A Speech-Language Pathologist (SLP) in Fairfax County, she was no stranger to neurological disorders, but seeing tumors grow on her then- 2-year-old was scary.

Ten years later, Christie is now an advocate for NF as the NOVA/DC representative for the Volunteer Leadership Council at the Children’s Tumor Foundation, an organization that provides education, advocacy, research and patient/family support for NF.

She now resides in Culpeper, Va. with her husband Ryan and her children Parker (13) and Logan (12) and works as an SLP at Culpeper Health and Rehabilitation, specializing in adults with acquired cognitive, communication and swallowing deficits.

How do you balance (your career/job) and family life, and what makes it easier?

When Logan entered school, we knew he would need IEP support and I was able to draw on my special education background to help guide the conversation and advocate for his needs. (Then), having extra doctor’s appointments and weekly chemotherapy, it was clear that flexibility was the only way to survive. I had to have open communication with my employers and adjust my work expectations. None of this would have been possible without my husband helping to carry the parenting load.

What do you love about parenting?

My kids always joke that the only reason we had kids is so that they could do all the chores! In reality, I always knew I wanted to have kids, but couldn’t tell you why. Seeing our children grow- physically, mentally, (emotionally), has to be one of the best parts. Watching them persevere through their challenges, develop their own interests and become more independent is all I can ask for!

How has raising a child with NF affected your parenting choices?

The hardest part about raising a child with NF is that we also have a child WITHOUT NF. Sometimes it’s almost easier to parent your medically involved child because their needs are so much more apparent, but what about the sibling? I find it hard, at times, to find those ways to make sure that he feels cared for, loved and attended to, when all he sees is how much time and attention his brother gets.

What’s the best piece of advice you’ve received?

STAY OFF OF GOOGLE! Don’t get me wrong, the internet can be a fantastic resource if used correctly. It’s actually the way we discovered Logan’s diagnosis before the doctors did. That said, it’s easy to get caught up in the “worst case scenarios” and most extreme cases I don’t know what Logan’s NF will look like 5 years from now, 10 years from now, but google doesn’t know either. All I know is what he needs now, and that’s all I have to focus on.

What do you hope your child (ren) learn from your career?

I hope my children can see that care and compassion can make a difference. The boys have been able to visit me at work with our puppy (hopeful future therapy dog) and see first-hand the joy that they can bring to people in very painful, scary or sad situations. I hope that this will help them develop their sense of compassion for others and to remember that even a small act of kindness can go a long way to change someone’s day.

Family Favorites:

Favorite Family Meal
Burgers and fries. Everyone knows I love the extra crispy fries, so everyone passes their crispiest fries to me and in turn I share my pickles with them.

Favorite Way to Recharge
We love to play board games and watch movies. There is also always a jigsaw puzzle on the table.

Favorite Family Vacation
We love any time that we can be with family, whether that’s visiting family in New Jersey or heading to the beach in North Carolina. As long as we are with our families, it doesn’t matter where we are.

Favorite Place to Visit in Alexandria
Our favorite place/event is the annual Scottish Walk parade in Old Town. Bagpipes, Kilts, Dogs and even Santa. Something for everyone!

Favorite Disability Advocacy Org.
We support the Children’s Tumor Foundation by fundraising and spreading awareness. It’s because of the research and advocacy of CTF that we are seeing better treatment options for Neurofibromatosis.

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