Be Brave - Ask For What You Need

Recently, a friend approached me after church and asked if I would like to have lunch with her.  I very quickly, and probably with a little too much enthusiasm, agreed.  That’s when I realized that she meant right then, a lovely spur of the moment invitation.  Back-pedaling, I explained that I just wasn’t available that day.  My disappointment was reflected in her eyes, and I heard the all too familiar, “maybe another time.”  I know what that means.  I know that I won’t be asked again for months, if at all.  You can only say no so many times before the invitations stop.

What many of my friends don’t understand is that my life doesn’t manage “spur of the moment”.  I need planning time, for him and me.  A simple lunch invitation requires time to coordinate a caregiver for my son, creative manipulation of finances to afford lunch and said caregiver, as well as a detailed schedule, at least 24 hours in advance, for my son to be comfortable.  Sometimes, just the thought of putting all of that together precludes me from saying “yes” to those well-intentioned invitations.  This leads to greater isolation, loss of friends, and a very cranky Amy.

I’m sure many of you can relate to this feeling.  I’m sure many of you have thought, “if they just knew…”  I have struggled with my need for more social interaction, and my inability to maintain friendships due to the needs of my son.  I have felt abandoned, ignored, and even forgotten at times.  I get jealous when I realize my peers are out enjoying a movie or community event, when I’m alone in my home, caring for a child that rarely shows appreciation, and then I feel guilty for thinking such a thing!  It’s easy to get lost in those emotions, to sink into a pity pit.

So, how do we climb out of that pit?  We ask for what we need.  Oh, the horror!  Admit to needs unmet?  Admit that we might need help?  Admit that caring for our child, which we are often lauded for, is not the main goal of our existence?

Yes, exactly.  We live in a society that reminds us daily that only the weak ask for help or admit to an imperfect life.  I challenge that belief.  It is actually the strong who ask for help, who let their friends know exactly what they need.  How brave it is to call your sister and ask her to come help with your laundry.  How courageous to tell your friends about the difficulties in scheduling last minute plans.  How daring to admit that you miss those simple moments spent over a cup of coffee.  How gutsy to simply ask for a hug.

Asking for what you need, whether it be time, friendship, financial assistance, or help with the dishes, should not create guilt or shame.  Asking for help should build you up by creating a support network that understands, empathizes and works creatively to help you achieve your life goals.  By admitting to your needs, you break down the barriers that keep you isolated, fenced off from life. 

So, I challenge each of you.  Spend one day asking for what you need.  Just one day.  Love yourself enough to make those requests.  Respect yourself enough to follow through.  The world will surprise you.  

I Just Want to Brag About My Son

A little over 18 years ago, I prepared to meet my son, Kepler, for the first time.  Even though I did not know that he had male hardware, I had already created a basket of dreams for his future.  I imagined a child ahead of the curve, inventing, creating, helping, and playing.  I envisioned awards, accolades, and a shelf of trophies.  I had similar dreams for his older sister, but when the doctor shouted, “Boy!” I was positive this child, my son, would play center field for the Chicago Cubs, propelling them to the World Series – finally! 

By the time Kep was 18 months old, I knew that he was not progressing normally.  His motor skills were on target, but he had no words and he had frequent meltdowns.  Each successive milestone that was missed, felt like a missile aimed at that basket of aspirations.  It took another 18 months to get an official diagnosis.  That label destroyed my son’s carefully crafted basket, hopes and dreams exploding around our heads.

After a period of mourning those fragile wishes, I looked at my son and began building new goals for him, for our family.  I learned to think small, to break things down, to recognize the achievement in the mundane.   While our friends shared pictures of their children with soccer trophies and dance awards, we quietly celebrated the fact that Kep had learned to blow his nose.  As the other children were entering math competitions, we awarded Kep for new words, even the vulgar ones.  We commended Kep for each of his hard earned skills, but we did it without public fanfare.

As a parent, I want to brag about my child, but am rarely given the opportunity.  When Kep first told a lie, people were shocked by my jubilation.  An important developmental milestone, lying was a skill I wasn’t sure he would ever attain.  Friends were confused by my reaction, and some criticized my choice to celebrate.  Unknowingly, they robbed me of that joyful moment, and those moments are few and far between.

I have learned that taking pride in my son’s achievements, no matter how small, is an important piece of my parenting.  Without the little parties, hope would dwindle, and life would become joyless.  So, I may not post pictures on Facebook of Kep getting his driver’s license, attending prom or receiving a college acceptance letter, but I will publicly celebrate the moments for which he has worked hard.  His basket of dreams has evolved, becoming unique to him, and I am very proud of everything that he has achieved.

Wit's End

Have you ever been to Wit's End?  What does it look like?  How does it feel?  For each of us, the answers to those questions may be drastically different.  For me, Wit's End is an ever-evolving body of water.  On some days, Wit's End may be a tiny, shallow puddle, barely noticeable, hardly wetting my toes.  On other days, Wit's End is like a bottomless ocean, full of tidal waves, water spouts, sharks and giant human-eating squid!  Wit's End can make me laugh, and it can rob me of breath.  

Traveling to Wit's End is easy.  It can happen in a moment, no black hole or Tardis necessary.  When my son, Kepler, rubbed green and orange ink pads on his body until he looked like an Oompa Loompa, I immediately found myself ankle-deep in the Wit's End pond.  When he decorated his room with a full bottle of ketchup, I was thrown into the deep end of the Wit's End pool.  It's as if the moment, and the feelings attached are a magical mix with the power to fling my mind directly into a different space, a space that can be overwhelming and lonely.

I'm betting that you can relate to these feelings, that place.  As the parents of children with special needs, we may find ourselves carried to Wit's End more often than others.  We experience moments that others may not understand, like relief at a diagnosis or grief at a school conference.  Somehow we manage to navigate the watery depths of our own personal Wit's End with strength, humor, tears and determination.  

As I have swum the waters of my Wit's End, it has been the support of other parents that has saved me.  Life preservers are flung from caregivers on various shores, reminding me that I am hardly alone in this reality.  Just knowing that I can reach out and grab a ring makes the waves less daunting, and can even turn a terrifying shark into a playful dolphin.  

And so, I offer you this peer (pier), this place where we will support each other, laugh together and just be.  When the waves get high, we'll remind each other of the brilliant stars overhead, and the reminder that tough times are temporary.  We might even decide to join hands and jump in, providing strength in numbers.

If you are at your Wit's End, welcome.  You are not alone.