It’s Sunday night, and I”m tired.  But it’s a good tired.  Ben and I played a lot with the kids today.  And we put on rain boots and jackets and went splashing through puddles as we walked to Lou Malnati’s for pizza in the pouring rain.

And I was reminded today, as I was throughout this whole past week, how life reverses both ways.  From perfect, sunny days that turn rainy all the way back to rainy days that turn out to be fun despite the puddles.  Or perhaps, because of the puddles.

To give you the end of last Friday’s story, Lucy continued to cry all the way home.  When she continued to sob at home, I got desparate for something to calm her and went up to my closet where I store future Christmas gifts (yes, I know it’s only August, and I’m ridiculous for starting already, but I pretty much am a single-parent the month of December since my husband is in ministry, so I like to just get it done early).  Anyways, I went in the bin and grabbed the one thing she has been asking for the past year that I finally found on ebay– a retro Rainbow Brite doll (yup, that’s what I get for thinking I’m a sly, early shopper– the best gift is already ruined!)

And as I’m handing it to her, an even larger feeling of guilt sweeps over me as I realize that I’m instilling a materialistic comfort habit that will probably lead to her becoming an emotional shopaholic one day. (honestly when I told my husband about everything, he was completely understanding about the stroller accident, as something similar happened with him and Lucy and a bike a couple years ago, but he was really upset that I pulled the doll out!)

It did the temproary job of calming her down, however, and reassured me that the crying (which ceased immediately) was dragging on more out of fear than pain.

But as quickly as her tears vanished, mine appeared. An old friend had stopped by to see our new house, and as I was showing her the upstairs, I felt my voice break and I couldn’t compose myself. She, of course, told me that I was being too hard on myself and that she had done so many similar things when her boys were young.

And you know what?  Throughout the entire past week, I received comments and e-mails from people, sharing their “guilt stories” of ways their kids were injured on their account.  And while a couple of the stories honestly disturbed me, they really did help.  A couple of them even made me laugh and smile to myself.

And as my week progressed, I realized that there are a ton of reversals that occur in the span of a week, or even a day for that matter.  And sometimes life seems to reverse on its own when we give it a moment…..like when Lucy was pouting on Wednesday because there was a toy she wanted that I wouldn’t get her at the store. She ran into her room and shut the door, and I was too frustrated to try to reason with her, so I just sat on my bed and read with Elli, feeling like I had created this material=hungry little blonde monster.  But to my surprise, a few minutes later, she came hopping up on my lap and thrust a handmade card in my face that said, “I’m sorry mom.  I love you, daddy, and Elli more than things.” followed by a great, big bear hug.

And while I beamed and hugged her on Wednesday, I found myself feeling irritated on Thursday when both girls were whining and kept begging to watch tv all afternoon.  I kept waiting for the day to reverse on its own– for the girls to come prancing up to me with handmade cards again that said “We will never whine again and we don’t even care about tv!”  But the cards never came.  And I kept thinking, “Why does it take so much to make them happy?”

And it was then that I realized that it was my frame of mind that needed a reversal– not my day. I got out some play doh and sat on the porch with Lucy while Elli took a little snooze in her stroller near us.  We sat and chatted and played, and it seemed like just that hour of one-on-one attention turned the whole rest of the day around.  She frolicked around the house the rest of the night, singing little songs.

And I kept thinking, “wow, it takes so little to make kids happy.”

So I guess this is just how life is– one reversal after another.   And while it often takes so little to turn it around, it does take something.  

Whether a pause.  A prayer.  A deep breath.  An empathetic ear.  A shift in consciousness.  A brief moment of reflection is worth the likelihood that the day– or week or month or year– will turn around.



Have you ever had one of those days where you wake up feeling like you could conquer the world and go to bed feeling like the world conquered you? Friday was one of those days for me.

It was one of those rare, Midwest gift days in August where you wake up and open the windows because the humidity has finally dissipated long enough to turn the A/C off for a day or so.. On days like these, there’s no wrong thing to wear. Whether long sleeves or tank top, you are neither too cold nor too hot because the sun shines brightly, complimented by a crisp, clean breeze.

It was also my first free day with no plans in awhile and felt like the perfect day to get really serious about potty-training my 2-year-old, with my oldest daughter back in school As soon as I put minnie mouse underwear on her, she immediately ran to the potty and knew just what to do (though she forgot a minor detail that required some clean up– pulling her pants down– but close enough!) She then asked to go to Starbucks to get vanilla milk and I thought that would be a good reward (yes, my 2-year-old is a Starbucks fanatic, thanks to her dad!).

Before we left, I saw a facebook message pop up on my phone that said a good friend of mine had tagged doublevision blog and wrote how I inspire her. And then I saw an e-mail come in from another friend who clicked on her link and read our blog. She sent me an encouraging e-mail, saying how brave she thinks I am and how she related specifically to a certain post.

So I left on the 2-block walk to Starbucks in this perfect weather feeling on top of the world. Everyone I passed seemed to smile or greet us with happy conversation. Even the birds were attempting to join in the casual conversations. And a bagpiper played beautiful music in front of Starbucks to help raise money for firefighters’ families (seriously, what is it about bagpipes that always gives me goosebumps?!)

I sat on a nearby bench and listened while sipping passion tea and watching my toddler happily slurp down vanilla milk in her stroller. I watched as car after car stopped to hand firefighters dollar bills, showing no sign of a recession anywhere nearby..

As I walked home, I felt like everything was right in the world. I felt good that I had handed a donation to the firefighters. I was elated that little Elli was still dry. I felt inspiring and brave and proud.

And what’s that they say about pride always proceeding the fall?

The day turned on me like over-ripened fruit. Elli peed on our new rug 2 minutes after getting off her empty potty chair. I opened July’s electric bill. Two small foreshadowings of the havoc to come.

I picked my first-grader up from school and asked if she wanted to walk to the shoe store for new school shoes. She was excited and jumped in the wagon, but Elli cried for the stroller so I caved and decided to do the “faux double stroller” with Lucy on top of the stroller (as shown in “Mama on the Move“) As we approached the shoe store, I remembered that we hadn’t brought socks to try on the shoes, and not wanting to spend extra money on socks at the shoe store, I decided to walk the 2 blocks back to grab them from home. Since a friend called to say she was stopping by in a half hour, I began walking quickly, wanting to make sure that we had enough time at the store. I usually try to go slowly when I’m pushing the girls “double-decker” style and hold on to Lucy while pushing, but I was in one of those hurried semi-frenzies as we crossed the street to our block. I was trying to get across the street quickly since there was a car waiting (and I had recently been told by my sister that I’m kind of a slowpoke crossing the street when cars are waiting!) In my haste, I misjudged the distance between the curb and front wheel, and felt the stroller jerk back in protest. And as if in slow motion, my precious Lucy went flying off the stroller headfirst onto the cement sidewalk.

Immediately, people surrounded us and a man ran for ice. Lucy stood up right away but began running hysterically in circles, shrieking in pain. I caught her in my arms and just cradled her, repeating “baby, I’m so sorry” over and over, vaguely aware of Elli staring at us from her stroller, wide-eyed and onlookers shuffling around awkwardly, trying to figure out how to help. The people from the waiting car had kindly pulled over and were looking at her pupils and trying to reassure me with the fact that Lucy has rolled, shoulder first and hit her cheek, not landing head-on. A bruise had already started to form, and Lucy continued to bawl and shriek.

I think the woman from the car could tell that I was mortified and ashamed because she began telling me how her niece did the same thing a few days before. I nodded politely but I couldn’t let myself be comforted. What kind of mom was I?

I felt this ball of guilt and regret in the pit of my stomach. And I felt not one bit inspirational. And not brave in the least. And as I pushed the stroller home, Lucy walking close and whimpering at my side, I felt like nothing in the world was right.

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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.

I love summertime for a variety of reasons, but the main reason I love summer is that it stays light outside until almost 10pm here in WA.  For a person with night blindness, this makes a big difference.  It means I can stay outside playing with my daughter, riding bikes, and walking to/from town for yoga, gelatto, shopping – just to name a few of my favorite activities – well into the evening hours.  But I often feel like Cinderella, losing track of time as the clock ticks closer to nightfall.  Most of the time I’m very good at planning ahead to make sure that I am in a safe, well-lit place when the sun sets.  But at a recent family reunion, the planning wasn’t exactly up to me. Continue reading