Wednesday, September 26, 2018

A Little Extra

As a mother of a child with Down syndrome, I often feel like we (all the people involved in this little man's life) are a minority.  Most people do not experience the same repetitive challenges, moments of pride or depth of love that our family endures on a daily basis.

Before I go more into that, let me say that I am grateful for this unique adventure.

I sometimes feel a bit separated from other people because they might not know how to talk to us or even want to engage with us because Braeden is different.

But discomfort provokes a need for change.

And these changes have induced strength and purpose in myself and everyone else who loves him.

I know Brady P. won't just get by in a regular school with regular classes and regular friends without any extra effort.  His education would take a huge hit.  

Same with his medical life.  He doesn't just get by with the annual well-child appointment.  He has seen specialists from soon after his time of birth and will continue to all his life.  And the normal "cold" for him can turn into a panic attack as he struggles for a breath through his abnormally small passageways.

So, as his mother, I have to be proactive.  I do research.  I make phone calls.  I attend meetings.  I join groups.  I take him to therapy appointments.  And then I take the tools I have earned and use them the best I can to build an enriching life for Braeden.

It takes a staggering amount of time and energy.

But as a middle-aged white woman, I wouldn't know what it's like to be a minority if I didn't have Braeden. It is humbling, yet empowering to have this extra work placed upon me.  And I feel like I have more of a voice because we have different needs.  The spotlight mysteriously shines in our direction.

But we are not just different, we are extra.

Brady P. has an extra chromosome.  I know I've said this before, but it makes him more and not less.  I've written about how his hugs make people's day.  I've written about how his sweet little voice saying someone's name melts their heart.  I've written about how looking into his eyes shows you the depths of the universe.

That, my friend, is all extra.

So what can a person do when they feel like most people don't understand them?  Get with the other people in their minority group!

That's what we did last Saturday.  Grammy Linda, Brady P. and I went to the Mine Shaft bowling alley for the annual back to school party put on by the U.P. Down Syndrome Association.

I love that group.

Every person who goes to those events is extra.  The spotlight kids have an extra chromosome which exudes extra light.  Their siblings show extra love and learn extra patience.  The parents are extra real, extra supportive, extra understanding and just down right extra cool.

Watching his ball roll down the lane

I cannot express how much it means to me to be in a group of people who have all been humbled, yet empowered by the child that blessed their lives.  

I don't think anyone who truly loves, cares for and advocates for a person with Down syndrome could even fathom putting on a facade for the sake of popularity.  Because that special person in their life has taught them that it doesn't matter.

It doesn't matter at all.

It's what's inside that counts.  It's how we affect others that matters.

And Brady P. continues to teach me and all the people in his life that.  We are all able to see a more meaningful side to life, which humbles our ego.  Yet, at the same time, a true knowing of what is important in this life is then able to rise from within -- and that is the strength and purpose we find.

I am fortunate to experience this on a daily basis.  And I am grateful through and through.  And, as a writer, I am moved to share it with everyone who does not experience it first hand... and I hope that the world will be able to see it with a little extra light.

Wednesday, September 19, 2018

Wednesday, September 12, 2018

Leading From the Heart

I started this week's post by typing a pep talk to myself in hopes that inspiration would strike for today's topic.  Once I wrote the next five words, I had it figured out:

"Just write what you feel."

Zap!  It hit me like a lightening bolt.  The rest flew tirelessly.

What you feel is right.

Because feelings come from inside.  They come from the heart.  They are real desires of the spirit.

If I wrote what I thought I should, I would be guided by society's expectations of me.  Enough people do that.  I don't want to do it too.  It does not inspire me.  It does not seem real.

I have spent the last year undergoing a transformation in my life.  I didn't take any mystical classes.  I didn't read any specific authors religiously.  I didn't get advice from a counselor.

I simply started feeling.

I started listening to my heart.

At first, I doubted my heart a lot.  Because my heart didn't always make sense.  It didn't conform to the norms of civilization.  It wanted me to do things that seemed idiotic to other people.  Even to me.  Prompting me to make big, difficult decisions and stick with them.  

But I felt I had to make them.

Otherwise I couldn't eat.  

That is how strong my heart, my soul, my purpose was crying out to me.  To think (notice the word think, and not feel) that I could go back to the easy, more acceptable way of living made me nauseous.  I lost 14 pounds last fall because my heart and mind were in such a battle.

Luckily, my heart won.

And here I am, continuing to share its ever-beating glory with you.

You might think I am crazy, but that's okay.  Last year, I would have thought this was crazy talk too.  But once I started feeling, I embraced the beautiful changes that were happening in my life.  That were happening around me.  That were happening to Braeden as he sensed my peace.

And the latter was enough to confirm that I was on the right track.  Okay, that and the fact that I could eat solid food again.

It should come as no surprise that Brady P. is a feeler.  He acts from his heart.  Well, he is at the egocentric stage of development right now, but overall, that is how he operates.   And once he entered my life, he emanated that.  I had no choice but to follow his lead or I would be ignoring the greatest gift I had ever been given.

The gift of a teacher of love.  The gift of a son who is basically cognitively unable to conform to the norms of society.  Even as he ages, a more selfish, inhibited, even cold way of life will not be able to route into his neurological pathways.

That extra chromosome is a gift.  It keeps him true to himself.  And in turn, he is true to others. 

I want to share this video with you.  I hope you watch it because it illustrates my point so beautifully, and the star of it is a man with Down syndrome.  The first person with Downs to own his own restaurant, in fact.  

Not just any restaurant, but the friendliest restaurant.  Ever.  Because the owner, Tim, greeted every person who entered, whether he knew them or not.  And gave people hugs, as warm as Brady P. does.  He pursued his dreams by following his heart and changed his path when something pulled his heart into a different direction.

I challenge you not to cry while watching.  I can't personally not cry, but the subject is certainly dear to me.

As the old saying goes, "You can't stop love!"  Especially in someone who leads with their heart.

Wednesday, September 5, 2018

Preschool Days

Short and sweet today. 

Just like Brady P.

He started preschool this week.  What a little man.  And I wasn't going to do the obligatory preschool picture, but I caught him in a few candid moments as we left on the first day.  

That is the one room school house in the background.

Enjoy the sparkle in his eyes.

Down the steps like a big boy

He's got that swagger

My handsome little man

See you next week!