Sunshine and Spoons: Meet Simeon - Spina Bifida Awareness

In honor of October being Spina Bifida Awareness month, I interviewed Mary Evelyn from What Do You Do, Dear? about her son, Simeon who was born with Spina Bifida.

I've followed Mary Evelyn's blog for several years now and love her honest, humorous style of writing. She doesn't candy coat what it's like to have a child with special needs but somehow manages to bring out the beauty of it as well.

In addition to raising her two awesome and completely adorable kids, Simeon and Franny, Mary Evelyn is a school librarian which sealed the deal as far as me being a devoted follower of her blog. Librarians unite! Sorry, I'm just keeping it non-fiction over here.

Without further ado (and my sincere apologies for rambling), here's Mary Evelyn!

What condition does your child have?

Myelomeningocele, commonly known as Spina Bifida.

How does it affect your child? How does it affect daily life?

Because Spina Bifida typically causes paralysis or weakness of the lower limbs, Simeon uses a wheelchair to get around. He had a shunt surgically placed shortly after he was born to drain excess fluid on the brain due to a condition called hydrocephalus, which is very common for children with Spina Bifida. Even with these differences and others that come along with the diagnosis, our daily lives look pretty typical. Simeon goes to preschool and loves riding the bus. He's able to access most public spaces using his wheelchair and he loves finding ramps to zoom down. We do have to keep an eye out for shunt malfunctions-- watching for symptoms of a malfunction is a common worry for parents of children with SB-- but thankfully this isn't a constant concern. Simeon receives physical therapy as well as speech but we use the extra driving time to blast our favorite show tunes (he's currently stuck on Oklahoma and Hamilton!) and hit up the Starbucks drive-thru.

When did you find out about it? Tell me about that experience.

We found out at our 20 week ultrasound. I remember feeling an awful combination of numb and terrified. Looking back, it felt like a dream. I remember my OB immediately referred us to a high risk doctor and as we were walking out the door, she asked if we were okay to drive--I think that's when it hit me that this was a game changer. It's typical for parents to go through a grieving stage after their child is diagnosed, I certainly did. Looking back, I can say that the grief I experienced was a necessary part of my own acceptance process. I think I'm able to love my son better and fully appreciate all the wonderful things about him in part because I allowed myself to go through that time of sorrow and fear.

What happened after your child received their diagnosis? How did you react?

After the diagnosis, we started the process of learning everything we could about what life with Spina Bifida would look like for our family and our son. We met with doctors and connected with other families who had children with SB. I felt like I was overloaded with information. There were things I loved about the learning process (I'm a librarian so research is my jam) but there were definitely times when I needed to step away from the computer and do regular pregnant lady things too.

How does your child feel about their diagnosis?

Simeon is only 4 years old. I think he's still learning about his differences and how they affect the way he interacts with the world. He loves his wheelchair and feels confident using it. He enjoys playing with his sister and other children who are typically developing. I don't know that he fully recognizes his differences yet. He is beginning to grow uncomfortable with the extra attention he gets. Strangers frequently say hello to him or ask for high-fives. People are certainly well-meaning but I can see him pulling away from the spotlight a bit. Sometimes he doesn't want to say hello or hear people ask questions about his wheelchair, and I think that's natural and healthy. We're trying to help him strike a balance between protecting his privacy and using his manners.

What kind of good or bad experiences have you had because of your child's condition?

The medical challenges can be difficult but the connections and friendships we've made with other families have been a huge joy. Knowing and loving my son has opened my mind up in a way that it wasn't open before. I understand the world differently, and I'm glad of that. Plus my kid is the absolute sweetest, and I love him so that's a heck of a good experience.

What has been your biggest challenge?

It's difficult when milestones seem out of reach or when achievements that come easily to other children come much slower for my child or perhaps never come at all. This can feel scary or frustrating as a parent because we want to fix and do and push to make all the things happen easily for our little ones. The challenge for me, and the thing I remind myself of often, is to remember that my son is happy and that who he is is far more important than what he does.

What has been easier to handle than you anticipated?

The day to day. Life for us isn't dramatically different. Before my son came along, I assumed that life with a disability was a 24 hour struggle. Not so. Most of our days are filled with regular old family stuff--work day, driving kids to the sitter, breaking up fights between siblings, movie nights, playing outside, dance parties, timeouts--the usual.

What was harder?

Dealing with stereotypes and figuring out how to share our story while also protecting my son's privacy.

What kind of support system do you have?

We have great support through family, friends, and our church community. We've also made connections with many other families that have children with SB. Getting advice and ideas from other parents has proved invaluable.

What would you say to a parent whose child has just received the same diagnosis? What advice would you give them?

Spina Bifida will not be the most interesting thing about your child. It's okay to cry a lot and yell angry things and feel all the feelings. Know that you can do this. Get ready to welcome your baby. Decorate the nursery. Register for a million cute baby things. Paint stuff. Find other parents of children with SB online or in your local community. If you can, meet up with a family for dinner and get to know them and their kiddo. Name your baby-- it's easy to feel disconnected from your child after diagnosis, giving him or her a name can help. Last but not least: life with Spina Bifida is 10% tough and rough and scary but it's 90% lovely and fun and absolutely normal. You are going to be happy-- so is your kid.

You can follow Mary Evelyn's family's story on her blog, What Do You Do Dear? and on Facebook, Twitter, Instagram, and Pinterest.

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Meet Simeon, an amazing little boy with Spina Bifida!

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In honor of Spina Bifida Awareness month, I designed a new shirt for the Sunshine and Spoons Shop. It can be purchased here in different sizes and colors.