Raising a Child With Retinitis Pigmentosa: Coming to Terms

*Over the next few weeks I'm going to tell our family's journey of raising a child who has a degenerative eye disease to raise awareness of RP and to let those who are going through their own trials and tribulations know they aren't alone. You can find part 1 here, The Diagnosis.*

Kyla was just a few months into her freshman year of high school when we started the process of confirming what we already knew, that she had retinitis pigmentosa (RP).

We'd noticed a significant decrease in her night vision a few months prior to the first optometrist we saw (the one who started the ball on getting her diagnosed) but as much as I love my child (and I do dearly) she can be a bit of a drama queen. After all, this is the girl who told her third-grade teacher I was dead from a car crash just so she could get extra hugs every day (at that time she lived with her bio-dad and stepmom during the school year in Louisiana while Mike and I lived in Arkansas near his work). So needless to say with her rememberable past we were a little skeptical when she started increasing her claims to how much she couldn't see at night.

You can't imagine how crappy I feel for not believing my child when she told her this. Even though we had a legitimate reason for our beliefs and the knowledge that catching the RP any sooner wouldn't have changed the outcome of her disease it still stings that I didn't listen and believe her when she needed me to.  We've used this as a teachable moment, for not only us as parents but for the kids as well. It taught them that we as parents can really screw up without meaning to, that we aren't perfect but that we can learn from our mistakes.

By the time we realized what was going on, Kyla was months into being a Rebelette (our schools version of a pep squad) and trying to navigate her first year of freshman. Her teammates at first were very confused and that also thought she was exaggerating. But these young ladies soon realized how serious the condition was and y'all they amazed me. They banded around her, even the ones who weren't overly friendly with her were helping her find her place on the field, making sure she wasn't running into things and such.

Still, despite the new support from her friends, teammates, teachers, and family Kyla had a really difficult time accepting what was happening to her. Here she was in the prime of her young life, starting the growing process of who she will become as an adult and she's faced with a disease that will hang over her for the rest of her life. Can you imagine being 16, just starting to face what growing up means and getting excited about what it has to offer to be told you have a disease that won't kill you but that will affect your everyday life from now until the day you die?

She's had to learn how to date differently, she can't do things like going roller skating or dancing because the way the lights flash on and off causes her sight to go out and she's terrified of running over people. The biggest blow for her has been her ability to drive. For now, she still has enough of her peripheral vision that she is safe to drive, however, because of the swelling that doctors are unable to get completely down her center vision is so blurry she can't pass the DMV's eye test.
For her to be just on the cusp of being old enough to do it, to be excited over the fact that her birthday was just mere months away and then to have it yanked away from her was the cruelest thing. It broke my heart to see her dreams of teenage freedom being crushed.

It's taken time to come terms with what having RP will mean for her.  Even if she is able to get her license she will have driving restrictions, she won't be able to drive in low light conditions (storms, early mornings, evenings, and such) and she won't be able to drive at night. We tested her eyesight in the evenings a few months ago, I let her drive to a local grocery store just down the road.  Between the 5 minute drive there and the 5 minutes in the store, the light had decreased enough that she couldn't see well enough to drive. A fact made very clear by the near plowing into a parking lot lamp. It scared her more than me and devastated her all over again. At that moment she realized just how much RP was taking from her.

She has good days and bad days. Some days she barely acknowledges what her future will be like. Other days she's overwhelmed by the sadness that creeps up on her. She's watched Jim (her bio-dad) her whole life go through this. She's watched him lose more and more of his peripheral vision as time progresses. In some ways, he's the only one who truly understands what she is going through.  He's a bit lost when it comes to being so young with it, he didn't start losing his sight till he was in his early 20s. But watching him over the years has given her an idea of what to expect and helps calm her a little.

Still, it's taking time for her, for us, to wrap our heads around the fact that she will not have the typical growing up experience.  And it's taking time for us as her parents to come to terms with the fact that no matter what we can't fix this. There isn't enough money in the world to make this better for her, there is no amount of medicine that will heal her. That's hard for a parent to accept.

I'm not sure what the future holds but I do know that no matter what we will learn to accept it and to deal with it.


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