Emelyn’s Got The Moves

Last August (2014) Emelyn made her first moves. She pulled herself about two inches on the floor with her arms – army crawl style. The tiny distance she traveled made it almost questionable to call it a crawl, but we were beyond thrilled. At 17 months old, she was mobile!

Over the course of the next year Emelyn began using her arms and legs to perfect her army crawl. She became quite quick moving around the floor. In physical therapy we worked on trying to get her on all fours, i.e. attempting to get her belly off the floor. However, her upper body strength just wasn’t where it needed to be to bear the weight of her trunk on her arms. Still we persisted. In June Emelyn began showing us her ability to pull herself from her belly to a sitting position using her arms. Each time she did this little Emelyn-style push-up she was strengthening her arms. This led to her newest trick – her swivel hips crawl. I’m still not sure if I’d call it a full crawl since she’s sort of sitting on her legs, but it’s new and it’s pretty efficient for Emelyn. And depending on her route and destination, she uses her new crawl and old crawl interchangeably to get her where she needs to go.

It’s hard to say if Emelyn will ever crawl in typical fashion. I’ve said it before and I’ll say it again, developmentally speaking, Emelyn does what she wants, when she wants. As you saw in a previous post, we’re working on taking steps, but for Emelyn's independence, it’s exciting to see her desire to get herself around on her own. This little gal isn’t waiting around for us – like Elmo, she’s got the moves.

Prayers

I've always found comfort in the stories other parents share about their special needs journey. They were a key part of helping our family not only accept, but welcome our not so "normal" family. As I wrote my latest blog post, I thought maybe other families might find comfort in my words as well, so I submitted them to The Mighty, one of my favorite special needs blogs. You can link to The Mighty and check it out, or read it below. Thanks in advance for your prayers!

My daughter Emelyn’s first year was probably the toughest emotionally. Suddenly my picturesque family portrait wasn’t anything like I imagined — there’s maybe a wheelchair or leg braces or facial dysmorphisms or who knows what. The thought brought me to tears on more than a few occasions.

Now, two years later, I roll my eyes at that picturesque family portrait for more than a few reasons. First, I’m so grateful to have connected with other families who also have children with special needs, and those families have some of the most beautiful family portraits I’ve ever seen. The presence of breathing machines or posturing or forearm crutches is not what I see — it’s a family filled with love and hope that I see. Second, the thought that my family would be something I’d be sad or ashamed of still baffles me. Today, I count my blessings each and every day and will continue to do so no matter what comes next for our family.

As I look back at that first year, I realize now I was still a stranger to the special needs world — to my own situation. I was still very much on the outside, in denial you might say, looking into a world that scared me. It wasn’t “normal.” I pitied myself. I felt sorry for my child and for her sister who would one day see her as a burden. I’m not sure what changed, but I’d like to think it was all those little Emelyn giggles brought to you by God Himself. I didn’t one day wake up to this new perspective in my life, but I’m grateful my pity party didn’t last too long. 

Now, however, I become impatient with others who want to pity me. It’s unfair, I know. They’re outsiders, and it’s impossible to understand when you’re peeking into my life. It’s probably why I took so long to share our journey publicly. It was a regular occurrence to share Emelyn’s diagnosis and developmental delays, only to receive a somber and pitiful, “I’m so sorry,” or “I’ll pray for you,” from the other person. It’s not that I don’t want someone’s prayers. Emelyn is in my prayers every night, and I’m forever grateful to everyone, including perfect strangers, who also pray for her. But please don’t pray for my child because you feel sorry for her.

Pray for her the same as you pray for our “normal” (insert lots of sarcasm here) child. Pray she grows strong and healthy, stays safe, is always loved and happy, and knows and loves God. Those, my friends, are all I ask from you.

There’s no need for pity. I can promise you that Emelyn doesn’t feel sorry for herself. She finds herself to be quite funny, actually. And Emelyn’s big sister, Aubrey, certainly doesn’t see her little sister as a burden. To her, broccoli is a burden; her sister is the most important person in the world to her. I don’t ever see that changing. 

So, it’s with my insider’s view that I share my perspective on what I believe are God’s unique blessings. The next time a friend, co-worker, family member or perfect stranger tells you about their child’s unique challenge, whatever it might be, don’t apologize or take pity on them. Lift them up and share in their hope and love for their child. Don’t be afraid to ask questions. Ask about today. Ask about the future. Ask about ways to support their efforts. You don’t need to pretend to understand or be in their shoes. We get it — you’re on the outside looking in and we’re grateful to have you as a supporter sharing our journey.

And the next time you see a family portrait that isn’t a “normal” family, know that life may not be easy for that family, but it is a blessing nonetheless.

A special thanks to Aprille Tobey Photography for the amazing images of our not so "normal" family!

Facial dysmorphisms = beautiful!

It was December 5, 2013 - Emelyn was nine months old. It was our first meeting with a developmental pediatrician. I had no idea what to expect, but our pediatrician had told us Dr. Pineda would be very warm and kind. After nearly two hour of questions and evaluations, Dr. Pineda closed her laptop and began sharing her thoughts with us. She was indeed warm and kind, but her words still stung. She wasn’t telling us anything we didn’t already know, and therefore, she was confirming our fears. Terms like significantly delayed, medically complex, movement disorder, a number of possible syndromes, and more came from her mouth. Then, at the end, she said something to the effect of, “And you’re going to see a term in the notes that says facial dysmorphisms and I want to explain. Emelyn is a beautiful child, but she does have facial features that could indicate a syndrome…something genetic in nature. I just don’t want you to see that and think the worst or that your child isn’t beautiful, because she is.” For days following the appointment I remember looking at Emelyn and seeing nothing more than a beautiful little girl. Yes, her ears are slightly asymmetrical and her forehead is a bit prominent, but I wouldn’t call them dysmorphic. That sounds so ugly – like she’s disfigured. I’m grateful, however, to Dr. Pineda for easing us into the term that day. To be honest, I didn’t think much about Emelyn’s facial features as we moved past those early appointments. Other doctors would note facial dysmorphisms in their notes and I wouldn’t dwell on it, it was their job to document their medical findings.

Then, on September 16 of this year, we laid eyes on the other girls with DDX3X for the very first time. Patrick and I both looked through the tiny thumbnail pictures in the study sent to us by the genetic counselor and were amazed at how many of the girls resembled Emelyn. Then, that night we connected with other families on Facebook and began seeing family portraits, candid shots, and school photos of the other girls sharing Emelyn’s diagnosis. While our girls do have similar facial features, they also share similar smiles, expressions, and laughs. Other parents post pictures frequently of their daughter’s and I see our Emelyn in their daughter’s faces. They’re all so very beautiful and their smiles are filled with the same happiness as our Emelyn. It’s nothing short of amazing. With permission from some of the DDX3X parents, I’m sharing some of the other young ladies also diagnosed with DDX3X below. I know you’ll agree, our daughter’s share beautiful faces and endearing smiles!

Lucy | 17 months old | California

Emelyn (right) | 2 years old | Virginia
Emelyn is pictured with her big sister Aubrey.

Hadley Mae | 2 years old | Texas

Mila | 3 years old | Illinois

Sparrow | 3 years old | Washington

Vivi | 4 years old | Alabama

Morgan | 4 years old | Texas

Peyton | 4 years old | Illinois

Harper | 5 years old | Arkansas

Ashlyn (left) | 6 years old | Texas
Ashlyn is pictured with her big brother Cameron.

Kate | 7 years old | Oklahoma

Taytum | 7 years old | Alabama

Lanie | 8 years old | South Dakota

Alex | 9 years old | England

Alayna (middle) | 9 years old | California
Alayna is pictured with her big cousin
Lyric and little sister Presley.

MacKenna | 15 years old | Alberta, Canada

Marie | 16 years old | Ireland

My baby’s first AFOs

You know how most parents keep their baby’s first pair of shoes – the little patent leather Mary Jane’s or in Aubrey’s case, the pink size 3 Nike’s? As it seems to go, things will be a little different for Emelyn. We’ll instead be tucking away her first pair of AFO’s (ankle foot orthotics) very soon. Like with Aubrey’s little Nike’s, we’ll pull them out in a few years and ooh-and-ah over how absolutely cute and tiny they are. By then she’ll probably be on her fourth of fifth pair of AFO’s and the cuteness will be long gone. They’ll probably be dirty and smell like feet and all I can think about is – bring it on! Since Emelyn got her AFO’s this past March, she’s made incredible progress bearing weight on her legs and is now consistently taking steps with assistance from one of us or a gait trainer. We even had to have the velcro refreshed and the “pringles” replaced (only other AFO mom’s and dad’s know what in the world that means!) because of the frequent use they were getting. (A big thanks for my father-in-law and Virginia Prosthetics for making that process painless for Patrick and I!) 

Emelyn waiting on PT to start.
(PT stands for play time, right?)

Emelyn doing some standing with her good
buddy, Emeline (her friend in the mirror), and
her physical therapist Ashley.

We’ve been talking about Emelyn’s feet since before she was born. It was her feet that first raised concerns in utero. While we’ve since turned our attention to other parts of Emelyn, we still often come back to her feet. Because of her low muscle tone, Emelyn’s joints are very loose and flexible. In her feet, this means the soles of her feet turn in as opposed to hitting the floor flat, even when bearing her full weight. To me, it looks painful to bear weight this way, but it doesn’t seem to bother her. Then again, not much bothers this kid. When Emelyn was younger we used heal cups in her shoes to help keep her feet in the proper position, however, as she grew and began bearing her entire body weight for longer periods of time our PT recommended AFOs . I wondered if they would be welcomed by Emelyn or cause distress, but like with most things, Emelyn doesn’t mind them at all. In fact, she enjoys being upright. Standing and taking steps are becoming routine to her. 

Emelyn's natural weight bearing position without her AFOs.

I get asked regularly, “Do you think Emelyn will walk?” It’s a question I once dwelled on, but not so much anymore. To be honest, dwelling on much of anything with Emelyn seems fairly pointless. Developmentally speaking, she does what she wants, when she wants. We’re just there, along with her wonderful therapists, to help the process along. I do believe Emelyn will eventually walk, though she may always need assistance, but I don’t think any of our happiness in life is tied to her ability to get around via traditional methods. Who knows she may just drive her Go Baby Go car around forever. We’ll need to work on the whole turning thing though – ha!

Emelyn in her Go Baby Go car back in February
of 2015, just before her 2nd birthday.