As Birkley started school this past week at Rocky Mountain Deaf School in Colorado, I automatically prepared myself for the stress that comes with the first week. Will she eat for them? Will the teachers understand what she wants when she hits her mouth? Will they know what to do when she throws her head back? I had my phone close by just in case I got a call. Being a parent of a child with special needs is never easy, especially when transitioning to a new school. Usually once or twice that first week in a new program, I break down to a therapist, teacher or to my husband with all the emotional stress that the unknowns can cause. This year should be easier than past years, because for the first time in Birkley’s life, she’ll be returning to a familiar school.
We chose this school because Birkley needed another form of communication. She is deaf, and uses cochlear implants when she can. She can’t wear them most of the time because she plays on the floor, rolls, and sits off and on (a new milestone for her at the end of last semester) and the magnet constantly falls off. I have invented several things as Birkley’s mom, but with this, I have no idea. Birkley can’t communicate very well because, along with her profound hearing loss, she also has hypotonia (low muscle tone), motor delays, and developmental delay all caused by CMV or Cytomegalovirus. She doesn’t speak at all but she has started to sign a little and has her own way of communicating. We can all get frustrated because she can’t always tell us what she wants. She’ll bang her head on the floor and let out an angry cry when we can’t help her right away. It’s one of the bigger stresses in our household. Every time she starts a tantrum, I need to remind myself to breathe through the stress building up.
Just for a little background, my daughter was born deaf. At two months, we followed up the failed hearing screening with diagnostic hearing testing. We had no hearing loss in the family so we weren’t worried much beforehand. I went by myself because I didn’t think to bring my husband; I didn’t know we’d be hearing such a big piece of news I was told my daughter couldn’t hear. That was the worst day of my life, or so I thought. I remember crying hard and calling my husband to tell him the news. Later at three months, the doctors noticed more concerns, because she wasn’t holding her head up very well and she wasn’t hitting her milestones. We were visiting Children’s Hospital Colorado constantly for blood tests, EKG tests, and tests I can’t even remember. We met with almost every department: neurology, rehab, cardiology, GI--you name it--we did it. Finally, the last test was an MRI. Then a few days before her first birthday (even writing this, three years later, I still break into tears every time), I received a phone call from neurology. The doctor asked us to come in right away. I knew it wasn’t good. I was alone again and couldn’t stop crying; I was so scared. That afternoon, he told my husband and me that Birkley had Leukodystrophy. I don’t think we heard all of what he said that day, but we learned that Leukodystrophy was a set of diseases that affect the growth or maintenance of the white matter in the brain. The prognosis was grim: he expected a gradual decline in all her abilities. However, the doc planned to send her MRI to several of his colleagues across the country for their opinions, because Birkley’s other testing did not match this picture. She did, however, have some white matter missing in parts of her brain.
After that appointment, we felt helpless. We couldn’t do anything and honestly felt like our life had stopped. Our family was a huge support system for us, but even that couldn’t help us deal with this news. About six months later, after many prayers, neurology called us again and she was given a new diagnosis and prognosis, through the observations of a top neurologist in the Netherlands, who had not actually met Birkley. This specialist said that Birkley had CMV (Cytomegalovirus) and that she was stable. This was a huge turning point for us—it meant she wasn’t regressing. Crying again, I was so grateful that the first prognosis was wrong. From here, our life turned around. We started living almost normally again. Our daughter would live and could learn if we could figure out the best way to teach her.
When Birkley started school at the age of two and a half, the biggest hurdle was feeding. It took her two months to learn to eat with staff at the school. When she turned three, at a new school, it took her about a month. At four, in yet another new recommended program, it took her about 2 weeks to learn to eat there. For Birkley, her main nutrition comes from bottles or shakes, and learning to take the bottle from someone else is not an easy task for her. I often had to pick her up early because she would be so upset from not eating. Imagine that every time you pick up your child that she would be crying with frustration (and no doubt the staff was frustrated, too.)
Birkley has been to four different schools at almost five years of age, or one for each of her schooling years. When Birkley would finally start to get comfortable with her teachers, paras or peers, it was time to leave. As a parent, it was really frustrating. Her last Denver school was a deaf/hard of hearing program. The teachers and therapists were great but overall, Birkley was not getting the individualized, one-on-one services she needed. She had been placed in a class of fifteen with another boy who needed extra care as well. We wanted more--for Birkley, for me, and for our family. It came time to make a big decision. Do we let life lead us or do we create our own path?
Twelve months later, with a new town, new neighborhood and new school, I feel so happy that we made the decision we did. I feel like we have a new perspective and outlook on how we approach life’s challenges. I understand that not everyone has the same opportunities to move but one does have the choice to make change regardless of how small or big that change might be.
People always say, “You are an amazing mom. You handle everything so well. How do you do it?” We are fortunate that Birkley is improving all the time. We focus on that. When a physician gives your child a label that means she won’t get to grow up, you want to focus on the gifts of every day. We just want to live better and live more. I can’t change the past, so why not look forward? Let’s see how we can be the best family of five we can be. Let’s appreciate what we do have, today. I couldn’t live without my husband and our life-sustaining relationship—I think I would have gone crazy a long time ago if I didn’t have him. There is so much to celebrate and to learn, and I will push ourselves to do both of those things as long and as often as we can.
Editor’s note: Logan is a mom of three, including Devlin, Birkley and Bode, and notes that she is married to an amazing husband.
The Communicator welcomes parents and professionals to submit articles on any aspect of D/HH Plus and help us unwrap the gift. Please contact Sara Kennedy at editor@handsandvoices.org for more information.
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