me speaking at The Orchard last weekend– an opportunity I never would have had if I hadn’t started writing regularly

It seems like I’ve been talking to a lot of people who feel down lately.  Some of the down feelings are

circumstantial, but for most of the people, it’s more of a disillusionment with the way their everyday lives are going.

And because I’ve definitely been there, it is causing me to analyze some of my “joy” data– and I’m not talking about my name here….. what brings joy into my life on an everyday basis?  (and this is beyond all those easy answers like God and children….)

For me, it’s words.  I remember loving the feeling of stringing them together as a kid…. that pure delight even in kindergarten when I wrote, “The Rose Girl” and had some vague sense that I had created something.

And maybe my first love of words had something to do with the fact that pictures were sometimes hard to see, and how the words describing them made them visible to me.  My toddler has a lot of first words books where I point to the  picture and she tells me what it is, and honestly thank goodness for the large, bolded words below each picture because I have trouble deciphering what most of them are even though she recognizes most of them right away.

I think it’s human tendency to withdraw from some of the things we really enjoy doing in life when we’re down.  I know I withdraw from writing when I’m feeling depressed (hence the lack of entries over the winter!)

Yet as I write daily– whether I intend to ever share it with anyone or not– it makes me wish that I had forced myself to do it over the winter because I feel like the days build on each other and increases my daily joy exponentially.

it sometimes takes effort, contemplation and soul-searching to sit down and do the thing that feeds us– or even figure out what it is.  But when it is found– whether it be yoga, art, long walks– whatever– give it a prominent place in your life.  Challenge yourself in whatever it is, and ignore messages clouding your brain that tell you it’s a waste of time.

For years I didn’t really write much because I didn’t think it would ever lead to a “career” or financial gain.  And honestly it may never end up putting a dime in my pocket, but I’d pay a whole lot of money to feel as alive as I do when I create with words.  I am so grateful for my amazing twin sister who had the idea to start this blog.  It has been my free therapy, my place to be honest, my place to grow and the place where my soul figures out it is satisfied.

I know I’m hovering on the cheesy side again, but I’m writing this for the people in my life who are down right now.  Because they have soul food in their lives that they aren’t eating.

Usually these soul food type of activities don’t come skipping along at just the most opportune times.  They usually arrive in the middle of the inconvenient times.  Like right now when I’m supposed to be scoring essays, for example.  I score state tests for Pearson from home to help pay bills (and with how slow I am at scoring, I barely make minimum wage, but my philosophy is that something is better than nothing!)

Many of my writing ideas enter my mind while I am scoring exams, which is completely frustrating because I have a quota to meet, and when I stop to write, I really lose time and money.  But when I don’t grab those moments of inspiration, they tend to disappear.  So lately, when I feel the inspiration to write, I stop whatever I am doing and just roll with it because I know it’s something that will keep building….. the more I am in the habit of dropping everything to do it, the easier it will be and the more joy I’ll get out of it, and the fuller my soul will feel.

And anyone I know who actually continuously practices the things that feed their soul end up heading in a life direction that they feel alive in.

My husband, for example, is a singer/songwriter, and for years he struggled to find his “niche” of listeners.  I worked as his booking agent, we hired a publicist and were determined for him to someday make a living as a full-time singer/songwriter.  After several years of late-night shows that didn’t really pay, I got really frustrated.  Why wasn’t this career happening?  But my husband kept plugging away writing and  performing, and at times I couldn’t understand why.

Then in 2010 he was asked to do a Christmas show in Aurora, and we argued about whether he should do it because we would be sacrificing a lot of fun plans and even a weekend trip with family, for him to do this show that involved late-night rehearsals, performances spanning over two weekends and little pay.

At some point I remember my husband making the point that ended the argument: “Joy, with my busy job and our family commitments, this is my one opportunity each year to connect with other local musicians and to put music first”

And it was at that performance that he met his current boss, who hired him one month later to do his dream job.  He now writes and plays music full time, like we had always hoped he would be able to do, and simply from continuing to do the thing that makes him feel alive even when it wasn’t convenient and didn’t pay.

I’m not suggesting that we will all end up with careers doing these soul food activities, but if we open up spaces in our days to do them and place them above all those nagging things like money and organizing the closets, we just might start to breathe easy again.

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.