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. Today was Dalton’s annual visit to the retinal specialist. I can’t tell you how relieved I was to hear the words “there has been no change in his visual field since last year - and actually not really much change at all since 2019”.
I’ve been going to these appointments with both boys for about 15 years now. It is an anxious time waiting to hear what the doctor will say. After all these years, they don’t get easier. Before and after the appointment, I’m always flooded with emotion, so to process my feelings, I’m sharing them with you and leaving you with some things I have learned from this most recent journey. I should start by saying this flood of emotions always occurred with Conner too, but for some reason they seem stronger when it comes to Dalton (since he’s my youngest). And, if I’m being honest, the feelings have been more intense lately all around. Why? Maybe it’s because these last few months have been hard for me - there has been a lot going on with the kids and that has sparked a lot of feelings of past grief for me. Grief is a funny thing - I’ve learned it’s more like a roller coaster with big ups and downs. Just when I feel like things are under control, something else changes. But why grieve today? I’ve been doing a lot of soul searching, trying to figure out why grief is hitting yet again right now - 20 years after our initial diagnosis of Usher syndrome. I think it relates a lot to the eye appointment today - the anxiety I hold inside for my son. And I believe it stems from a fear of the unknown. That may sound strange coming from a mom with an older son with USH who is thriving, but in my reflection, I have determined this could be the case because their experiences have been so different. In fact, I don’t think I’ve ever really come to terms with the fact that Dalton has Usher syndrome like his older brother. Yes, I do a lot in the field of deafblindness so I know it’s not rational to be in denial. But, here I am. As I said, Dalton’s journey with Usher syndrome has been so different than his brothers - thankfully with a much slower vision loss progression. While the slower progression is such a blessing - I spend a lot of time worrying about when the bomb is going to drop. I recall, like it was yesterday, when Conner was Dalton’s age. We were switching schools yet again because of challenges in class. Conner has been night blind since he was about 5 and his peripheral loss was so significant that by the time he was Dalton’s age he was struggling in school. At 15, Dalton now, on the other hand, continually tells me that he is not yet night blind and doesn’t notice peripheral loss. Not that I want to doubt Dalton, but because his progression was so different from my experience with Conner, I was always worried he just didn’t recognize the symptoms. Today we pretty much confirmed with the retinal specialist that, yes, Dalton has not experienced any significant vision loss. The relief for me is palpable. But even with this news, I still spend a lot of time worrying that one day Dalton will wake up and will have lost a significant amount of vision - because it’s what I knew with Conner’s journey over the past 20 years. This lack of control paralyzes me at times. For today, I can put those worries aside. My baby boy’s eyesight has not really gotten worse in the past 4 years. I hold hope that maybe his progression will continue to be significantly different from his brother’s, which is ok - even wonderful. Or, in these moments of good news, I can accept that maybe tomorrow the bomb will drop like I have always feared, but Dalton will persevere just as his brother has. In today’s moment of hope and strength I remind myself that this is his unique journey and I shouldn’t compare. We are all ok and we will be ok, no matter what tomorrow brings. My lessons learned that I share with you today are:
I am thankful for all of you - my village. You help pick me up when I am having a bad day. You also help celebrate when we get good news like today. I hope I can reciprocate for you. And I hope you do for others. The community is what makes us stronger.
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AuthorLanya (Lane) McKittrick is the Chair of the Board of the Usher Syndrome Coalition, 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
September 2023
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