Living with USH: the Anxiety of a Routine Appointment is Real and OK

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.

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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:

1. It’s ok to embrace grief whenever it arrives - and to expect it continually rear its ugly head from time to time. You are allowed to have your worries and fears. These are natural emotions. Process them, but don’t allow them to overwhelm you. Reach out for help if you feel you are drowning.
   
2. It’s important to celebrate when there is good news like we had today. We don’t know what the future holds. But good news is good news. Enjoy it. Revel in it.
   
3. This is a long journey and every person goes through the journey differently. My boys' experiences are different. Todd (my husband) and my journey through grief is different. And our family’s experience is different from other family’s. There is no right way. Accept that other family members may experience grief at various times and levels. Offer support for one another. You are on this journey together.
   
4. We are always learning. Look for the lesson in every situation and grow from the experience. Yes, this is hard at times but being on this journey has made me and my family stronger and it’s the path we’re meant to be on - even if I question it at times. 
   

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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