Special Needs Spotlight || Eleanor

Miggy: Welcome Whitney and fellow limb difference mom. Let’s start at the beginning, can you take me back to the day you knew your daughter would be born with a limb difference? Do you remember how you first felt? Can you compare those first thoughts and feelings with how you feel now?

Whitney: The day we found out about Eleanor’s condition felt like being blind sided with a baseball bat to the gut. My husband and I happily walked into the doctor’s office to confirm the gender and measurements of baby. Our technician began measuring and describing everything to us. We were laughing and making jokes and kept staring at the screen trying to figure out every single detail. At the very end, she began measuring the legs, she kept going back and forth on belly and she became very, very silent. She didn’t say anything to us. My husband and I were still smiling and holding hands. Finally, the technician stopped. She told me to go empty my bladder. I hopped off the table and frolicked to the bathroom. I came back quickly to hear more about my sweet baby. She was no longer in the room. She was down the hall on the phone. Finally she came back. She told us our daughter had missing fibula bones (the calf bone) in both legs, very short tibias (the shin bone) in both legs, no foot on the left side, and only 4 toes on the right side. My smile vanished and I became very confused. While I was in the bathroom we learned, she was on the phone with my OBGYN, he wanted to see us immediately.

Miggy: Could you please educate us about your Eleanor’s diagnosis and explain how her needs affect your day-to-day life? 

Whitney: Fibular Hemimelia is the absence of the fibula bone. It affects 1 in 40,000 people unilaterally, most being male. Since Eleanor is affected bilaterally, and is female, it makes her condition a little more rare. At 13 months we came to the super difficult decision to have her little feet amputated. We flew to Salt Lake City (the closest Shriner Hospital to us) to have her surgery done by the best surgeon we could ever imagine. She was put in a Spica cast for 4 weeks. After her cast was taken off, a month later, she was fit for 2 prosthetic legs and has been kicking butt ever since.

Miggy: How can people best approach or respond to Eleanor? Is there something you wish other people knew so as to avoid awkward or hurtful situations?

Whitney: Eleanor was in Physical Therapy weekly for about 3 months until she could walk unassisted. Every day we put her legs on and take on the world. Most of the time people hardly notice the difference. But there are times at the water park, or at the grocery store (when she doesn’t have her legs on, and her stumpys are out in all their glory) and she gets some wild stares. I totally get that people are curious or that its unusual to see a toddler without feet sitting in the cart. Above everything else, I appreciate those who humbly and respectfully ask about her condition. I would much rather have a direct question asked to me, rather than a stare, and then a pretend not stare, or a super loud whisper saying “sweetie, don’t stare!” to their child.

Miggy: What are the biggest worries you have for Eleanor? On the flip side, what are your hopes and dreams for her?

Whitney: There are days I worry for my daughter, I worry that the day will come and she will realize that she is very different. For now, she lives in cupcake and rainbow land and I want her to live like that forever. As parents we will teach her to educate people, we’ll teach her to be open, honest, and understanding toward people who are curious about her legs. She’s different and imperfect, just like everyone else on this planet is different and imperfect.

Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations? 

Whitney: There are days where I literally can’t believe I regularly say the sentences of: “Ugg, we forgot her leg.” Or “Turn your leg around honey.” Or “Do you want to put your legs on? Yes? Hurray!” I’ll never get tired of it.
Miggy: What is the biggest lesson you’ve learned since becoming Eleanor’s mom?

Whitney: Since becoming a special needs mom it’s been amazing connecting with other families that have children with the same condition as my Eleanor. One of my biggest fears was wondering if the rest of my future children would have the same thing as Eleanor. Oddly enough, the day of Eleanor’s surgery, there were identical twins in the hospital room next to us, one of the twins was recovering from his amputation surgery, the other was there for support (completely unaffected by Fibular Hemimelia). We know now that this was just a mutation, and it chose our family. I’ve learned a great amount of patience. It’s not always fun putting liners, socks, and prosthetic legs on a screaming toddler. I love the mobility her legs give her and I can’t wait to see what technology provides for us, as she grows older. Every day gets better with Eleanor in my life. I wouldn’t change it for anything.

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Whitney, thank you so much. To say I can relate to a lot of what you’ve said is an understatement. The punch-in-the-gut ultrasound appointment, weekly physical therapy, disbelief in asking my husband if we left the baby’s arm at home (I sorta miss those days :)), and the realization that we’re all imperfect and disabled, in one way or another. Once again I see that fear to love journey. The devestating fear of that first ultrasound to today, where you easily proclaim “Every day gets better with Eleanor in my life. I wouldn’t change it for anything.” Yep.