School: Emelyn continues to make tremendous progress at her new school where she has been since July. I can’t tell you how grateful we are to have found this school. The goals they are working towards each day are truly meaningful to Emelyn’s development and independence. For example, Emelyn is more willing than ever to walk with support, likely because her goals at school include walking in her gait trainer three times a day for seven minutes each time. Once she becomes more stable, which will come with practice, she’ll be walking more independently in the near future. We’ve also seen Emelyn’s ability to feed herself, follow instructions, and make meaningful contact with the world around her improve as a result of the goals they are working towards at her school.
Care team: I joke regularly that Emelyn has an entourage. She has therapists, teachers, care providers, doctors, case workers, and more. Each one of them love and adore her and are constantly plotting with us to be sure we’re doing the best to help her progress towards independence. When Emelyn switched schools her old care provider, Jean, had to find a new position that offered full-time hours. While we were sad to see her go, we were grateful we’ve been able to keep a close relationship with Jean. They now see each other weekly and get to hang out on the weekends about twice a month. It took us a long time to find Jean, but to our surprise finding her replacement was oddly simple. Patience began with us in August and had worked with Emelyn in the infant room at the daycare she went to before it became clear daycare wasn’t a good fit for Emelyn. They’ve picked up right where they left off and buzz around town from school to PT, OT, speech, hippotheraphy, and swim therapy. We’re grateful to have such incredible people as part of “Team Emmy.”
Health: For some children with DDX3X there are sometimes significant health issues that come along with the diagnosis, including seizures, heart problems, eye issues, and more. We’re very grateful that these continue on our radar to look out for, but not a reality for Emelyn. This fall Emelyn had an inpatient EEG (known as an SMU) at UVA. She was a champ as you can see. She looked more like she was at the spa than having 20+ leads glued and then unglued from her head over the course of 24 hours. The test told us that while Emelyn’s brain waves are not typical, there are no signs of seizures. She also had an eye exam that raised no red flags.
Community: Just this weekend I had the opportunity to attend my work Christmas party for our foster parents, adoptive parents, and sponsored residential providers. I brought both girls with me and within minutes of walking in the door was approached by a woman who promptly greeted Emelyn by name. I had never met this woman in my life, but she knew Emelyn. Turns out one of her foster children attended hippotherapy at Healing Strides and she saw Emelyn each week. She asked if it was okay that she had added Emelyn to her church’s prayer list. I, of course, was more than grateful to her and her church for their prayers. And then it happened again, another woman, this time an adoptive parent, approached us. She said when her family walked in her son immediately said, “Look mom, it’s Emelyn!” They attend physical therapy together. In just two hours, with these two families, I was reminded that there is a community of people out there who love Emelyn and pray for her—people who we don’t even know. There are probably a few of you reading this blog right now who we do not know, but know we’re grateful that you are a part of Emelyn’s community.
Church: 2016 has brought a change for us on Sunday mornings. We were sporadic at best when it came to our church attendance, but this year we’ve made church a priority as a family. Just last week Emelyn was doing her normal chatting and giggling during the service, so Patrick got up with her to step outside. One of the church members, an usher that specific Sunday, told him, “Don’t you ever think she’s a bother to anyone. Everyone in this church loves that little girl.” And I truly believe that. There are countless couples and families at our church who cheer Emelyn on as she walks into church, but my favorite are the children who get the biggest thrill out of getting her to smile and giggle.
Friends: This blog isn’t the only thing that’s been neglected this year. Between work, the girls, working on my masters, the pregnancy, building a house, and moving twice in one year, I haven’t been the best at keeping in touch. That being said, every time I do get a chance to catch up with friends the first topic of conversation is typically Emelyn. Both Patrick and I are grateful to our friends for asking about Emelyn and not growing bored of our constant talk of Emelyn and her progress.
Family: It truly takes a village to raise a child…with or without special needs. If it were not for our family we’d all be a bit frazzled in the Snead household. Our parents chip in to get our girls to and from school each day, watch them on weekends when we need to do school work or work on the house, and feed us when one of us is playing single parent on occasion. Our extended family is only a call away and ready to chip in too when our parents aren’t available.
Diagnosis: Receiving the DDX3X diagnosis for Emelyn last year connected us with so many other families who understand what it’s like to walk in our shoes. Twice this year we’ve had the opportunity to connect in person with some of these wonderful families. We traveled to Chicago back in April, then to Pennsylvania in October. We also did some fundraising this summer and raised $1,700 for the DDX3X Foundation to support research. If you were one of the folks who donated please know how grateful we are for your contribution.
Siblings: Yes, you read that correctly, that’s plural. Aubrey and Emelyn will welcome a new little brother or sister next month. Aubrey’s an amazing sister to Emelyn and we figured, why not add another super sibling to “Team Emmy.” Life in 2017 may get a little busier, but we’re grateful to fill our home with even more love.
As our family looks back at 2016 we’re grateful to have you as a part of our journey and as part of “Team Emmy.” Merry Christmas and Happy New Year!