So I first started working on this post 2 weeks ago, but was only one sentence into it when my 5-year-old woke up vomiting. An hour later, my 22-month-old began vomiting, and thus began an entire night of fun. The next morning I got sick, and though it was a quick bug, I haven’t been able to get back in the swing of things since. It’s these kind of dreaded times as a parent that give me a newfound respect for my own parents and the long nights they spent cradling sick children and cleaning up puke. I don’t think I ever fully appreciated or even thought of these moments until I became a parent.
When my daughter turned 5 last March, I remember the thought dawning on me that she’s the age I was when I was diagnosed with RP. While I had always grown up thinking about how RP affected me personally, I had never stopped to think about it from my parents’ perspective. And based on the twinge of pain I feel even when watching her get a shot at the doctor’s, I had a hard time imagining being told that my little girl was losing her eyesight. I have no idea how I would react.
I remember my dad taking Jenelle and I to an eye specialist at age 5, trying to follow the big bird figurine that the doctor moved from side to side, and having countless tests performed. As I recall, my sister and I were not the most compliant little patients, and I can only now imagine what a stressful day that must have been for my father by himself (have you ever tried to place hard contacts in a little kid’s eyes before? Two kids?)). At the time, my mom was pregnant with girl #4 and chasing our 2-year-old sister around, and I’m sure the news my dad brought home after the visit was overwhelming for my mom. I have no idea how the conversation went or the thoughts that went through my mom’s head as my dad relayed the news from the doctor.
I think Jenelle and I, both now parents, began to wonder what it was like for my parents. So when we asked them to write a post from their perspective, I think that we were half-way expecting this long, emotional recollection. And we were both admittedly disappointed when we first read our mom’s article with educational advice to parents. While her post was probably much more helpful to parents of kids with RP (which was, in fairness to my mom, the whole point!), we selfishly wanted a new glimpse into our childhood. We wanted to know what I guess every adult kid wants to know: “What were you thinking and feeling as you raised me? And what did you think of me?” (okay, I don’t know if every adult wants to know that, but I did.)
The telephone conversations following my mom’s blog entry were difficult– I kept beating around the bush, trying to get more out of my mom– pressing her for more than she was able to say. I remember my mom’s voice suddenly breaking in one of those phone conversations and her saying, “I feel like you’re wanting me to feel something that I didn’t feel or that I somehow failed you as a parent.” I faltered for words, clumsily trying to reassure my mom that she was a wonderful parent (something she is always doing for me– encouraging me as a mom– and here I was stumbling to do the same.) The conversation ended fine, but I was still bothered by it over the next few days. And my mom was too. She ended up writing me an e-mail that really helped bring closure to our conversation, and here are some excerpts:
“When I said that I didn’t remember any disappointment, I meant for myself as a parent; I really never felt like I had been dealt a bad hand of cards. I choose to see the possibilities, not the disabilities. Yet, now that more blogs are being written and the memory locks are unlocked, I do remember many times of frustration, sadness, and even fear. I just didn’t want to admit it in my mind. I have hidden them so well all these years. It is a protective mode as a parent; protective of my emotions and protective and respectful of your process. It was difficult to talk to you both about it because you avoided it and were upset whenever we brought up anything to do with your vision impairment. Dad and I realize now that we should have and could have pushed harder to talk about it. I never wanted anything we said to convey overprotection, but fear did drive a lot of my actions or comments. I wanted all of life’s challenges and excitements for you, but feared them and then hid those feelings. It seems being a parent is also a lot like being an actor.
In your early years I remember wanting you to join in on family or friend volleyball games, Halloween trick-or-treating, and/or other activities, so that you would not feel left out. We told the family members not to discuss it, just to help you along. Then it turned out to be very difficult for you, but you had fun. You have a better memory for experiences, but I hope I have conveyed the maternal feelings.
And for all the things we did or did not do to support you in your vision impairment, we are so sorry. We had no guidance, only scientific talk from the doctor, and misguided learning disability talk from the school people. We did all that we knew to do, which wasn’t much, but we could have done more, I am sure of that. I do think you got a great education. Even without appropriate adaptations you thrived. College at SPU and further college endeavors was the ‘icing on the cake’ for you. You are excellent writers and do many things better than people with complete vision.”
I remember crying as I first read her words, and here I am crying again now as I reread them (if you’ve been following this blog long enough, you probably think of me as the sappy twin.)
Reading her words made me realize how hard we can be on our parents and how I hope my daughters will extend me grace someday when looking back on their childhoods. Parenting can be difficult and lonely, and we aren’t given a guidebook…. and we all do the best that we can.
I think one of the biggest gifts my mom gave me was actually hiding her fears from me as a child. I don’t think I would have been as confident or fearless if my mother had been one of those nervous, fearful moms who is always doting. Yes, because I”m a big proponent of counseling, I think that family counseling to help bring out at least some of these emotions as a family growing up would have been helpful, and I would recommend that to any family dealing with RP. But just allowing your kids– RP or not– to experience life fully, uninhibited by worry and fear, will allow them to do their best. And we’re all trying to do the best we can– as parents, kids, adult kids….. so a little grace here and there can also go a long way.