Category: Parenting

What We Realize About Our Parents When We Become Parents

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.

Advice: From Parent to Parent

Yes, I am still alive and well in case you’re wondering why I haven’t posted in quite awhile.  I am going to blame it on this busy season of parties, baking, shopping, sledding, and sneezing.  As if it’s not bad enough that I’ve taken so long to post, I am not even writing this post by myself.  This one has been in the making for quite some time, and it is a collaborative effort between Joy, myself, and our mom.

After receiving a lot of great comments and emails from parents of children with RP, Joy and I decided to create some blog posts that offer advice and encouragement to these parents and their children.  We started by asking our parents for their perspective, which sparked a number of interesting discussions and emails.  This process was really eye-opening for all of us, but more challenging than we expected.  I think any time a family takes a trip down memory lane, it is normal to have different memories of the same events.  Not to mention the fact that children process life events very differently from adults.

Now that Joy and I have children of our own, we are well aware of the fact that kids do not come with guidebooks.  And while this post is intended to offer advice for parents who have children affected by RP, we recognize that each child is unique.  There may be suggestions that are effective for one child, and yet not useful to another child.  Especially given the spectrum of RP.

With that said, the biggest piece of advice we can offer you is to have on-going open communication wtih your child regarding their vision.  While that might seem simple and easy to some, it can actually be a challenging process.  Based on information we’ve read and experienced, children who grow up with disabilities or anything that makes them feel different than other kids, often feel a natural sense of shame and want to hide it.

As Joy and I have expressed in this blog, we often felt secretive about RP.  Looking back, we appreciate the fact that our extended family didn’t make a big deal about our vision and just helped us (which we know now was what our parents sincerely requested of them),  But it was talked about so little, that when it did come up, we felt awkward because we didn’t know how to respond.  Even the sweet innocent comment of a younger cousin, “I’m sorry about your eyes” felt devastating to hear as children.

Our mother, Judy Derpack, has some more advice, relating specifically to education.  In addition to being a parent of two children with RP, Judy has a degree in Early Childhood Education and many years of experience as both a classroom teacher and parent-educator:

“Here’s what I have gleaned and learned (but didn’t always do well): In all situations, look for adaptations.  Your child does not want to be left out of anything (probably with the exception of PE class!)   Be creative.  Find a way to include them.  Make your family, friends, and educational community aware of how they can help your child.  Follow through to make sure adaptations are actually being followed. Lastly, and most important, YOU are your child’s best advocate!  Don’t let pride, ignorance, or ineptness keep you from advocating for your child.  Use your emotions and education to guide you as you advocate for your child.  I am so darn proud of my daughters that I can’t even find the words to describe the feeling.”

Joy and I would like to tag on to our mom’s words of wisdom.  Please also make sure to actually sit down and ask your child what they need.  Some of the adaptations we received in school were really not helpful to us at all.  RP is very different from many other visual impairments, so doing things like blowing up worksheets can actually make it worse for students with RP.  Especially at the beginning stages of RP, there may be very few adaptations that your child really needs, besides the awareness of the teachers.  Forcing adaptations that aren’t helpful to your child can make it even harder on your child (i.e. pushing books on tape when they really are fine reading on their own.)

Also, along with being included in the classroom, your child doesn’t want to stand out or be singled out, so find ways for the adaptations to be seamless and natural– not obvious and forced.  This just adds stress to what is probably already a challenging school environment. Always check in with your child to see what is actually going on in the classroom and beyond.  Teach them to be their own confident advocate so that you don’t have to do the talking for them.  One of my biggest pet peaves to this day is when someone asks another person to assist me when I am standing right there.

As previously mentioned, this is the first post in what will be a series of blog entries about raising children with RP.  We hope that it is helpful for families affected by RP, and we welcome your questions and comments.  We also want to acknowledge our parents for their role in creating this series of posts.  We know that sharing these feelings and revisiting these memories that have been tucked away was not easy, so Joy and I really appreciate their willingness to share with such humility and retrospect.

First to the Bus Stop

So last week my daughter was the first one to the bus stop. I knew we were running ahead of schedule (a rare novelty), but I still wondered if maybe school had been cancelled (or was it Saturday?) as my kindergarterner, toddler and I stood by ourselves at the bus stop.  No seriously– where was everyone?

Worry turned to amusement as a 3rd-grade-boy approached the bus stop and said “Good job being first, Lucy!”  My 5-and-a-half-year-old could barely contain her excitement at being first as she pranced around the bus stop.  And honestly, for a little girl who must be coaxed out of bed every morning and dresses herself in slow motion, I myself felt like prancing around in celebration of her feat.
Soon, the rest of the herd arrived and the 3rd-grade-boy began telling each kid where to stand in line (just because Lucy was first to the bus stop did not mean she’d be first on the bus– the 3rd-grader had organized a system to allow each kid a turn to get on the bus first…he’s quite the organizer).
As we heard the squeaky groaning of our giant yellow friend rounding the corner, 3rd-grade-bus-stop-organizer asks, “Lucy, where is your backpack?”  Oh gosh.  Panic  “Mom– it’s by the back door!” Lucy yells.  Without missing a beat, I turn to the other moms and say, “I’m running for it!”
I begin sprinting toward the house (take note, VIPs reading this are WINCING because they just KNOW that an injury is about to be had, for rushing + low vision almost always equals an accident). Lucy’s princess bike lay in front of the door inside the garage leading to the house, and even as I trip over it, the pain in my ankle does not fully register because the backpack mission is still underway.
I then hear shouting from the bus stop as I open the door to the house.  I hear Lucy yell something that sounds like “I found it!” I feel quickly around the front door, try to scan around the room to see if the backpack is there, and then decide that she must have, indeed, found it since I don’t see it anywhere.
I race back to the corner. All the kids are on the bus waiting, and Lucy is standing there staring at me, asking for the backpack.  Apparently she had yelled “hurry”, not “I found it” (yes, I know– those two phrases sound nothing alike….)
Lucy starts to walk back toward the house, unaware that she is about to make 30-40 children late for school, so I turn her back around and tell her it’s too late and that she needs to get on the bus without the backpack.  She hangs her head and looks like she is going to cry.  I try to think of something–anything–to say that will make her get on the bus.  “I’ll drop your backpack off at school!” I blurt out, despite the fact that I had no idea how I would actually get to her school. She slumps onto the bus, and I slump home with Elli, limping on my swollen ankle (this was a week ago, and I STILL have a giant bruise from it!)
Of course, when I walked back into the house, the backpack was sitting right by the garage door, in plain view, taunting me “I-was-right-here-all-along!”
Fortunately, I ended up getting a ride to deliver the backpack from my good friend who took pity on my description of poor Lucy slinking onto the bus.  But the stress of the morning– silly as it sounds now– stuck with me throughout the day.  Why didn’t I notice that she wasn’t carrying her backpack?  I was tempted to get all upset about how RP loves to wreak havoc on my day but then remembered a conversation I had recently with a friend and loyal blog reader.
After reading my last post “Good Grief/Dear RP“, she told me how there were a number of things in my “hate letter” to RP that she finds herself doing, unrelated to vision, and pointed out that some of the incidents I end up feeling embarrassed about are things fully-sighted people do too.
As Jenelle and I talked about this conversation later, she said “Yeah, I have had friends not see props at yoga class or need me to point things out to them that I would have been too self-conscious to ask about, thinking it was because of my vision.  I think sometimes we give RP too much….something”.  Yes, too much credit or blame.  Sure, it does result in a number of accidents that are clearly vision-related.  But some mistakes, mishaps and embarrassing incidents are just from being human, and if we are constantly embarrassed, thinking that every little thing that goes wrong is due to RP, I imagine that we could become pretty darn paranoid, not to mention a complete drag to be around.
There are, of course, certain precautions that we VIPs should take.  Like using mobility training or asking for assistance.  And, clearly, slowing down (but again, this is a lesson that non-VIPs sometimes need to learn as well).
A VIP-friend of mine just told me about how she was rushing the other day and knocked a glass off the counter, cutting her hand in the process.  She said that she cried because she was mad at RP and really hates the idea of it slowing her down.  I remember telling her that I sometimes feel thankful when it slows me down– when I’m stuck without a ride and have to miss something and stay home instead– it sometimes keeps me sane…. the slowing…..  It also allows me to be more aware of my surroundings and to fall in love with the small joys in my day.  It reminds me of a line that keeps repeating in a new favorite book I’m reading:  “Life is not an emergency.”  Truly, it is not, but I often act like it is when I panic over forgotten backpacks.
VIPs and non-VIPs alike– be gentle on yourself today– you’re allowed to make mistakes once in awhile, and to slow down your pace and pay attention to the subtle joys.