It Will Be Okay: One Mom’s Story of Life with an Extra Special Child

I have wanted to be a momma since I was four years old, so when my husband and I found out we were expecting our first daughter in 2014, I was beyond happy! I had dreamt of everything motherhood would be for a very long time. I immediately started following mom blogs, the most curated Instagram accounts and pinning all my favorite nurseries.

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We made it to our 20 week ultrasound, something I didn’t think much of since we planned to keep the gender a surprise. It was on that cold day in February 2015 that I experienced one of the darkest days of my life. After the lengthy ultrasound, we met with my doctor who immediately seemed less upbeat than usual. She started explaining that after reviewing our ultrasound, “The baby’s heart, brain, lungs look great but…”

I can’t really describe it exactly but that “but” hung in the air and the room grew blurry. She continued talking with my husband and calmly answered his questions. I didn’t understand. I don’t even think I heard her so I asked her to explain it again and she repeated, “your baby doesn’t appear to have a fibula bone and the right foot seems to be clubbed.” I told myself it was a dream — a bad dream and I would wake soon.

Little Girl With prosthetic leg | A Mom's journey dealing with her daughters disability

It took me weeks before I decided to start researching what I would later find out is called Fibular Hemimelia. No doctor at my practice had ever heard of the lower limb abnormality which made the diagnosis feel even more isolating. No mom I followed on Instagram seemed to have a similar experience. I felt alone and very sad. I didn’t feel adequate. I wasn’t strong enough for this.

“No mom I followed on Instagram seemed to have a similar experience. I felt alone and very sad. I didn’t feel adequate. I wasn’t strong enough for this.”

I started receiving baby gifts with cards that mentioned “ten perfect toes” and I would break down. Strangers would ask me about the baby’s gender and when I told them it was a surprise they would say, “Well as long as it’s healthy.” But what if it wasn’t? Was that still okay? Now that my sweet daughter is 3.5 years old, I can say with the most assurance that “YES!" it is still okay. Ten toes are great (my second daughter has ten) but four is really perfect too.

Goldie was born with six toes; four on her left foot and two on her right and just like the ultrasound showed, she doesn’t have a fibula bone in her right leg. Most importantly, she was/is the most beautiful human I ever laid eyes on the moment I met her.

 I started finding social media accounts of moms in similar situations, some with Fibular Hemimelia and many other medical abnormalities. I found a tribe and so much support in this place. We all knew what it felt like to receive devastating news and come out on the other side stronger and more in love than ever.

Little Girl With prosthetic leg | A Mom's journey dealing with her daughters disability

At ten months old, we handed Gold over to surgeons to have an amputation of her right foot and she’s been wearing a prosthetic since her first birthday. When I was pregnant and researching, I would skip any text that mentioned “amputation." Now prosthetics are a huge part of my world and I have grown to love that niche of the world. Goldie walks, runs, jumps, dances, climbs and rocks my world.

Life with an Extra Special Child : One Moms Journey | Prosthetic and medical supplies needed

Truly I want to share our story to let any mama know who’s received unexpected news about her babe that it will be okay. You will love that baby more than anything you knew possible. You will become an advocate with more passion that you knew was in you. You will go to a lot of extra doctor appointments, have tough conversations, and make hard decisions for your child, but that baby was given to YOU because you were made for that role. Most of all, you aren’t alone. I found peace in our diagnosis before Gold was born through prayer, reading the Bible, finding mom’s in similar situations, meeting kids’ with Fibular Hemimelia, journaling and ultimately deciding to choose a positive outlook. My husband loves to quote, “the only disability in life is a bad attitude.” ♥

Little Girl With prosthetic leg | A Mom's journey dealing with her daughters disability

(According to the CDC) 1 in 33 babies in the United States is born with a birth abnormality. If you find yourself going through a similar chapter of life, please reach out to me. I would love to chat and share some of my favorite resources with you!

If you have a friend that’s going through a similar situation it can be hard to know what to say but just love her well.

 Here are some tips:

  • Do research on her behalf and send encouraging blogs and information

  • Remind her that she is strong and capable

  • Pray with her

  • Send flowers

  • Be excited for her — the excitement of pregnancy faded a lot for me immediately after my diagnosis so a reminder that all babies are a blessing is very helpful.

A sweet video put together by Goldie’s dad detailing the journey to her foot amputation surgery. You will definitely want to watch for the sweetest moment at the very end…and make sure you have a box of tissues near by!

A video celebrating the one year anniversary of Goldie’s foot amputation surgery.

I asked Meg for some suggestions on helping children understand special needs and unique differences. Below are a few of her suggestions:

One | Mattie the Monkey | A book about a monkey with an extra curly tail.

Two | Finding Nemo | Nemo struggles with a limb difference.

Three | Finding Dory | In this movie there is an octopus with only 7 arms.

Four | Daniel Tiger | One of the characters in the show has crutches.

Five | Sesame Street | Julie from Sesame Street has Autism. (You can watch all the episodes of sesame street on Amazon Prime!)

If you have any more suggestions, head over to our facebook group and share them with all the mommas in our community!

Follow along on their journey through Megan’s Instagram or reach out to Meg with questions or advice through the email address provided on our contributor page!

 

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