Friday, October 26, 2012

The Extreme Parenting Project

Extreme Parenting. What a great way to describe parents of children with special needs and what we do day in and day out. We will go to any and every extreme to give our children what they need. It could mean staying up for 24-hour care giving shifts day after day; traveling to hospital stays, doctor appointments, therapy; carrying out research and making life and death decisions; maintaining endless patience helping our children learn a new skill; accepting that today is not what we might have expected it to be; developing new priorities.

Elizabeth Aquino, writer and mom caring for a special needs child, posed this question:
Knowing what I know now, what might I have told myself on the day of my child’s diagnosis?

She took this idea and developed it into The Extreme Parenting Video Project. This is a video that everyone must see, not just "extreme parents". But for the "extreme parents" who watch it, you are in for a few moments that will inspire you for a long time to come. This beautiful and insightful video will allow you to pause. You will remember that what you do is an adventure beyond anything you might once have imagined and you will know that you are not alone.

I encourage you to take a few minutes (about 3 ½ minutes in length) right now to view it. You will be comforted, soothed, and energized all in one.

What might I have told myself on the day of Evan’s diagnosis?

I imagine the person I am now, eight years later, stepping into the hospital room of the young and bewildered mother I was on the day Evan was born. I might say to myself:

“You can do this and you will do it well. Take one step, and then another. Stop to rest when you need to. You are going to become stronger than you ever imagined. This little boy will be your Ambassador of Joy and he will teach you how precious life really is.”

What would you have said?  I would love to know.  Post your words in a comment below.

Thursday, October 4, 2012

Puppy Love

About a month ago we adopted a puppy.  For the first time in a long time, we had a tiny bit of breathing room.  So we took a big breath and filled that space with a puppy.  This crazy move could mean that we have lost our last shred of common sense.  Or it might mean that we are finding our sense of joyful abandon again.

The newest member to our family is a Boston Terrier named Jasper.  This little guy came into our lives unexpectedly.  Gail, our friend who breeds Boston Terriers, had been nursing along little Jasper (a preemie puppy weighing just 4 ounces at birth).  For years she has shared her terriers as therapy dogs and has helped Evan interact them.  One of the dogs plays ball with Evan.

Gail introduced us to Jasper and told us his story.  It was through her wise, vigilant, and determined care that this little guy is here today.  He is her little miracle puppy.  Holding Jasper is amazing.  His little warm body melts into your arms and makes your heart swell with serenity.  I first held him when I was walking off excess energy before a radio interview in August.  Those five minutes of holding Jasper calmed and centered my mind.  I knew he had special powers that could bring healing to my family.  I’m sure that Gail sensed it too.

We borrowed Jasper for a half-day here and there; then a full day; then an entire weekend.  We fell in love and now he is here to stay.  We wanted the puppy especially for the boys, but he has had an impact on all of us.

To start with, Evan is no longer the youngest member of the family – and Evan knows it.  For now, Jasper has taken over center stage.  Initially Evan was confused as to how we could be lavishing so much attention on the puppy (attention that usually went to him).  There were moments of jealousy and uncertainty.  Now it seems this shift in attention is helping Evan continue his quest to be independent.  He understands that members of the family need to take turns being center stage.  Bringing Jasper into the mix has been the perfect way to put this lesson into action.

Evan is a natural caregiver to his new puppy, having been the recipient of care for so many years.  He lets Jasper out of his crate in the morning; he sits patiently by Jasper (who often needs company while he eats); he is gentle with his petting; he walks Jasper around the yard; he loves to give him reward treats; he is eager to help train Jasper to obey commands (he seems happy to be the one giving directions for a change).

Jonathan finally has a companion dog.  He loves the quiet moments he spends next to the sleeping puppy - that little bundle of warm, soft, loving goodness.  It is the soothing and steady presence for which he has yearned.  There is a part of his heart that desperately needs a pet’s love, unconditional and always there for a moment of stress-free, happy companionship.

The boys are experiencing what we had hoped for.  I am surprised at the impact the puppy has had on Randy and me.  We have found our hearts softening as we play with the puppy.  As parents of a child with special healthcare needs, our hearts have toughened up.  Toughened up in the sense that we have learned how to take hard news without feeling it well up inside of ourselves and break our hearts.  We can’t let emergencies send our bodies into a state of panic.  We can’t let disappointments slow us down.  In some ways, we have become almost stoic. 

Perhaps one of the unexpected effects of this toughening up is that we don’t take in the good stuff completely either.  Part of us is always on guard for a healthcare crisis, which would be all that much harder to bear coming from a happy place.  It seems all our emotions had melded into one mostly neutral, content with where we are, state of being.   Bringing this puppy Jasper into our lives is allowing all of us to let down our guards, soften our hearts, and allow a sweet playfulness, joyful abandon even, back into our lives.  He reminds us of this each day.