To My Craft Wife, On Her Birthday

Today, as you are wished well for your birthday, take the sentiment to heart. Enjoy the little moments you observe so well, soak up the chance at another year. Try not to let your woes overwhelm you and remember that we all love you. Remember that despite the pain and the loss, the strife that seems set on taking you down, you’re still standing. And you are who you are largely because of these trials. Never doubt the impact you have on others and the inspiration you represent in the hearts of your children, family, and friends. Happy Birthday, Craft Wife!

Happy Birthday, fellow immature, mature person! Here's to another year of ridiculousness!
Happy Birthday, fellow immature, mature person! Here’s to another year of ridiculousness!

~L~

Wait, Wait, Wait…..

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I’m waiting in the doctor’s office. It’s apparently my thing now. Some people go out to eat, some go to bars, while others go shopping, I get to wait on doctors. I should have been forewarned about my present course of lifestyle long ago. But, unfortunately, there are many things you won’t hear once you or someone you love is diagnosed with a chronic illness.

For instance, I spend a lot of time rearranging my schedule or finding someone to help me take care of my children while I wait. I wait at the doctor’s office, hospitals, pharmacies, and if I’m really lucky, I get to wait with my ear glued to the phone while on hold with the insurance company, clinics, and my personal favorite, social security (eye roll). The most frustrating part, besides all the waiting, is knowing I will be doing it all again for follow up appointments, emergencies, or fighting with insurance and social security. It’s a guarantee. Hours of my life are spent with my butt glued to a chair dealing with something associated with my illness or that of my son.

Getting my son one of his medications got bad a couple years ago. It was so bad that I was on the verge of a breakdown. My son has a severe form of eplispsy and the best medication used to treat it was offered solely through a specialty pharmacy. This pharmacy needs a disclaimer, “Warning: dealing with our business is bad for your health”. In reality, that’s a problem with a lot of businesses and people who are supposed to help those with chronic illness, they really don’t.  All the extra appointments, phone calls, and paperwork just add to the already mounting stress of chronic illness.

So people like me wait. We wait for a break in hopes that something easier will come along. We wait for improvement in health so we can wait at the doctor’s office less often, we wait for the right medication so we don’t have to deal with pharmacies, insuance, and new medication schedules. We wait, wait, wait…..

When there is little in terms of health that we can control, it’s nice when we get a helping hand, a word of encouragement, or we are at the receiving end of a kind deed. And thank goodness those nice things don’t come with a wait…. they come into our lives and remind us we are not forgotten while we spend a good part of our days doing things we’d rather not.

If I have to wait for something, I’d love for it to be a vacation, a home improvement,  an evening, or better still, a weekend away but these things are usually physically and/or financially out of reach so that’s when the company of a good friend, a laughter filled conversation, or any time we can get to enjoy the things we love are invaluable. Chronic illness changed how I look at life and what’s important. When my mom takes time out of her day to wait with me at my appointments, my husband volunteers to be the one to fight with the insurance company, or my friend drives her shoulder to my house for me to cry on, it’s a big deal. When I feel like so much has been taken away, the little things become the big things that matter.

I know how hard it can be to find the right words when someone is struggling. In truth, there are no right words, what matters are those well intended actions. Even if you don’t know what to say, pick of the phone and try something like, “I wanted to see how you were doing today,” send a text, mail a card of encouragement, offer a smile, or volunteer a few minutes out of your day to wait along with someone like me or my son who spend a lot of time doing it alone. Don’t be discouraged if you don’t know what to say or do, being in the company of a friend is always worth the wait.

*d*

Silhouetted in the Background

I wrote a coming-of-age novel about guy and a girl who become best friends in elementary school but are ripped apart in high school by their very different personalities, outlooks, and plans for the future. Losing friends from your childhood is a normal, albeit sad, part of growing up. There’s a lot of gut wrenching scenes where they cut each other down while trying to protect their own feelings. It’s these fights that help drive the two characters apart.

It turns out, when you’re in your thirties, friends slip quietly away. There isn’t usually screaming or even scowls because it happens as subtly as time flying by, and everyone is so exhausted by life that even if they notice, they don’t speak up to stop it. There are children, spouses, jobs, and life in general that seems to drown out so much of what used to be in the forefront.

I’m mindlessly surfing Facebook and see my pal—we’ll call her Trixie—posted pictures of her kids. It reminds me that I haven’t seen Trixie in weeks, no wait, months. Someone I assumed I would always be close to now feels almost like a stranger. Almost.

If it weren’t for those tidbits of conversation, the random hilarious picture comments, the echoes of who we used to be, the thin threads tethering us to one another might finally snap. But it’s these moments that remind me that our friendship isn’t based on time spent or interactions had, but the fact that even after months, we could sit down and laugh like no time had passed at all. We’ll always have a connection, even if the ties finally break and we drift so far apart that not even an off-color joke over the internet can pull us back together.

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I guess that’s also what happens in my novel. I wrote about something I thought happened to other people. Not us. Trixie and I were solid. But the truth is people fade in and out of your life for any number of reasons. It doesn’t lessen their impact on your heart or their image silhouetted in the background of your mind. We’re all who we are partly because of the people in our lives, past and present. We shape each other and leave our marks and most times, our time together is fleeting. The truly meaningful relationships in our lives can fade, but they’re still there, waiting for a chance encounter, a long over-due phone call, to come out of the background and back into focus.

~L~

Reply by *d*

I had started my last post before you posted this one and it was so similar, I had to finish it. It is strange how we could be thinking along the same lines. It is sad to drift from friends but as you said, there is always time to reconnect and remember those good times. I am grateful for all my friends also, no matter when they drift in or out of life.

It’s About Balance

In life there are many times we can feel as if we love and hate something at the same time. For instance, women can love a pair of shoes while hating how it hurts their feet. I personally love chocolate but hate that I must limit my consumption of it. The same can be said for people like my husband and I who have a special needs child and social media. We love it and hate it. My husband now hates it and has deleted the Facebook app from his phone. I have been known to defend it because of the support groups that have proved to be an invaluable source of information and support. Lately, the negative effects on us have outweighed the positive.

With Facebook and other social media, users sign up to share their lives with other users. If I have learned anything from my high school social experience, it was the never ending drama that goes along with sharing so much personal space with other people. We can hope certain social manners will be followed but that would be silly considering we are “friending” many people we barely consider to be acquaintances. By allowing so many people so close to our personal lives, negative experiences are bound to happen. For us, it has caused disappointments that possibly have my husband finished indefinitely. I am still dipping my toe in the edge. I am involved enough to check in on a few friends but I don’t want to be over involved again.

Over the past seven years since we signed up on Facebook, we have tried to use our manners. We try to avoid arguments, we do not engage in political or religious debates, and we are respectful of the opinions and lives of others. The longer I use Facebook, the more I notice the lack of manners and general respect people have for one another. We have been pulled into fights and insulted. I have had to diffuse situations that blew up on social media for my entire list of friends to see. We tried to play it safe and hoped we didn’t put too much out there, but like most people on social media, we got burned because we assumed our “friends” were friends. Sadly, in some cases we were wrong. Some people just want to read posts to gossip, judge or disapprove of others. It feels like high school all over again. I am sorry but our emotional plate is full and we have had our fill of drama.

Another difficulty I have with social media is the lure to envy. We can all get caught up in it but for us, it can take a pretty hard emotional toll. I realize most people want to use the nicest photo of their family and desire to show off the greatest aspects of their lives but it is hard to stop comparing. Vacation photos are the hardest for us. I know a few couples that snap a picture in front of a great hotel where they celebrate their anniversary every year or families that are full of smiles while enjoying the latest weekend getaway. I keep reminding myself to appreciate what I have and continue to hope things will get easier. I do appreciate everything we are blessed with but it is difficult letting go of certain dreams. I look at those posts and jealousy rears its ugly head. My newsfeed gives me many more opportunities for those feelings to take over and make me feel sad about our life. I truly do want to be happy about my life. I am grateful for the positive changes we have made through difficulty. It is hard trying to continue to make those positive changes while dreaming of some other life.

I think that is what it comes down to for me, I can’t get caught up in some other existence social media provides. It feels like I am balancing two lives. I am working overtime with life one already. I love the continual support that I have found. I enjoy learning more about friends I have made and connecting with old friends but I can’t get so involved that I forget the little people in the same room. So I am choosing to back away for myself and my family.

I love my life in so many ways, but there are aspects I hate. I hate what has been taken from me but I love the compassion for life that has filled that empty space. I hate that I won’t know endless happy outings captured in photographs for the world to see but I love that I can appreciate the happy moments I am given. I love sharing in the lives of others but I hate it when I often feel alone. Just like my rocky relationship with Facebook, I am finding my balance. I have to nourish what truly matters and break it off with those things that bring me down.

*d*