 We rarely talk about it, but raising a child with disabilities takes a toll on a marriage. As Todd and I celebrate our 25th wedding anniversary, at this turning point in our lives, I'm reflecting back and speaking out about what I've learned.
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 When your child has Usher syndrome, it's normal to be anxious awaiting annual vision and hearing screening results. As the mom of two with USH, even after 20 years, the flood of emotion tied to these annual visits remains, and that is OK.  Sometimes, as moms, it gets to be too much. Especially if you are a mom of children with disabilities. This blog is for all the moms, to let you know you are not alone, it's ok to break down and you will find your strength again.
 In the early months, when you know your child is struggling to learn but you don't know why, you can feel very alone. I know I did. Here is what I learned on our journey to getting support for my son.  If someone had told me six months ago that I would be leaving a job I loved, I would have thought that was crazy. Those who know me well know how much I love my job. It's been rewarding to participate in COVID-specific special education research, and I know that the work has helped many and that my contributions have been valuable. But for the reasons I explain below, I need to make a change. I'm excited to have more time to focus on myself, my family, and deafblind research and family support.
 I am sharing my story as a mother and professional researcher of two sons who have Usher Syndrome and are deafblind.
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AuthorLanya McKittrick is the Chair of the Board of the Usher Syndrome Coalition, co-founder of the Hear See Hope Foundation, and deafblind education researcher and founder of Lane of Inquiry. Lane received her PhD in Special Education at the University of Northern Colorado. Her research, advocacy and family support work are rooted in her personal experience as a mom to four sons, including two who have Usher Syndrome, the leading genetic cause of deafblindness. Archives
July 2024
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