summer

At The End Of The Day….

Jaycee Kemp1 Comment

I was in a research study recently involving blogging, deciding upon content, deciding upon platform, media, etc. It truly was an interesting experience–I guess no one ever directly asked me to tell my story in such a way before. While they interviewed over a dozen already, many of which where “mom bloggers”, I was the only one interviewed who addressed experiences as a family living with disability.

Their takeaway they volunteered to share with me? Their experience with other parent bloggers did not include the same judicious protection of content/overcontemplation of concern regarding the forms of dignity I discussed, nor did it involve the level of scrutiny that dug as deep as our level can go. And yes, they do blame their kids for tough days or recognize the universal struggles in a laughable or relatable way and are rewarded for that relatablity on social media. No one else struggled in that balance the way we do.

In our world, there is a fine line which moves it’s position depending on who you are talking to. We have a job as family caregivers of disability to be relatable advocates who set the bar for how we and our kids are perceived by the rest of the world. And unfortunately, I do believe it can be at the expense of self care or which ultimately affects they way we cope within our family systems for the benefit of our charge. We are held to a much higher standard out there in cyberworld under much more challenging circumstances than other parents. I forgot about this piece I wrote a few years ago, but it was on a day I had a similar epiphany at the end of a long, hot summer. Sometimes, I want to say funny things about being a mom too. And yep…sometimes I am selfish.

Running through Water

bunny hillThere are some days that my heart breaks selfishly a bit.

Days like today.

As A2 gets older there really are no more play dates. While kids are generally kind, there are limits to their patience. It’s hard to figure out how to play with another kid who wants to stand at the bottom of the water slide flapping rather than going down. His peers are now preteens and the adults that are close by interpreting for him, ensuring safety and cuing socially reciprocal behavior are going to inhibit his peers age appropriate wing stretching.

Today, as I sat entering in my second hour in direct sun making sure my guy didn’t keep going past the “do not pass” sign at the base of the water slide, I couldn’t help but notice the world around us. I had nothing else to do but try to clear my mind of things…

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At The End Of The Day….

Jaycee Kemp5 Comments

bunny hill

There are some days that my heart breaks selfishly a bit.

Days like today.

As A2 gets older there really are no more play dates. While kids are generally kind, there are limits to their patience. It’s hard to figure out how to play with another kid who wants to stand at the bottom of the water slide flapping rather than going down. His peers are now preteens and the adults that are close by interpreting for him, ensuring safety and cuing socially reciprocal behavior are going to inhibit his peers age appropriate wing stretching.

Today, as I sat entering in my second hour in direct sun making sure my guy didn’t keep going past the “do not pass” sign at the base of the water slide, I couldn’t help but notice the world around us. I had nothing else to do but try to clear my mind of things that poke at my side and wake me breathless in the middle of the night that were now tugging at the straps of my mom-suit on sunburned shoulders. I see the young women in their bikinis, laughing and hanging off of tattooed boyfriends and remembered a time where wondering if my thighs were firm enough or if my mascara was running were my biggest concerns. And at the time they really did feel like big concerns.

There are days….just like every other chubby middle aged mom, I just miss my youth.

I watch other moms read their books and drink stealthy mojitos next to the pool as their kids run to them at rest time asking for a hot pretzel. The lifeguards are there to protect theirs while I stand knee deep in freezing water wondering what would happen if I tried to do the same.

There are days….like every other mom of little ones, I wish I could lounge near a pool instead of  being on high alert waiting to save my kid from drowning.

I see the moms with wee-ones on changing tables and laugh as I remember being in the same predicament with a wet, slippery cherub in a soaking wet swimmy full of poop and trying to carefully slide it down over a squirmy tushy, not realizing the sides rip off for easy disposal. Today I am trying to find a dry floor free of clumpy toilet paper wads since my guy is now too old to place on a changing table.

There are days….like every mom of little ones, I just wish we were out of the diaper stage.

Once I shook the delirium of the midday sun and made my own mojito at home I felt less like I was crawling toward a mirage in the desert only to be disappointed by more sand.

I feel conflicted by my own selfishness.

I know the bottom line is if he is still oblivious to his differences and is still filled with joy doing what he likes to do whether it suits me or not, then we are still golden. And yet I can feel like I have received a sucker punch to the gut when I watch pubescent girls walk quickly in cliques past him whispering and giggling. I don’t know if my child worries about the same things I do or if he has crushes on girls or if he sometimes grieves his differences. I hope not. That way I can keep my selfishness where it belongs…to myself.

But here’s the thing.

Don’t ALL moms go through this? 

We have a sacred ground that feels like it is being broken if we say it out loud or admit to having a bad mom day.  Special Needs bad mom days and Typical bad mom days have a different script but definitely the same plot.

  • No.  I will never worry about my kid having a psycho girlfriend.
  • I will never worry about my child’s heartbreak of  being socially brushed off because he is wearing the wrong logo on his sneakers.
  • I will never worry that I did not raise him with morals or respect for adults.
  •  I will never worry about whether or not weed will be his gateway drug to heroin.

Those things are equally as important even though there are days I would rather worry about those things. Somehow it became not OK to admit to worry or heartbreak or disappointment for fear of being seen that we somehow don’t appreciate our children. I hesitate to share on these days I must sit quietly for a little too long and think about things a little too much. I am weary of feeling somehow missing our old lives or having a twinge of disappointment over “what could have been” cannot possibly coexist with loving our children with all our souls or appreciating their uniqueness in all their flappy, pool water drinking ways.

See…because you know what I miss too some days? My flat stomach with a belly ring that didn’t look like it was a way to deflate my abdomen. I miss not checking moles and worrying about skin cancer. I miss not having to hire a crane to hoist my chest up in a bathing suit. I miss drinking beer all afternoon in the sun and flirting. I miss working full time and then actually being bored in the evening when I couldn’t find someone to go to the coffeehouse to see some local guy playing acoustic.  And I dare anyone reading this to NOT feel like they miss those things too sometimes and that they too would consider trading their situation in to go back for just one day only to realize there would be no way in hell.  Because we will never be the same and for that the world will never be the same. This is the backward legacy that our kids give to us….as we gave to our parents.

I often wonder what kind of mom I would be in an alternate universe….and feel very selfish on the sad days. But ultimately, autism or not, I really don’t think I’m so much different from any other mom.