Days in the Sun…..

Wow…..It has been a very long time since I sat down at this site to write.  That’s not to say I haven’t been writing.  I write in my head all the time.  Sneaking away from my family, my job, my household duties, etc. is hard to do.  I must have a clear head and no distractions!  Not easy to obtain these days.

But a few weeks ago, I saw “Beauty & the Beast.” Have you seen it yet?  Please go.  It’s a beautiful film, with beautiful music.  Yes, we know all the songs.  But there are new songs.  And one of them captured my attention and then my thoughts.  I’ve included it here so you can listen.

The song is lovely and the lyrics are very meaningful.  This is the line that caught my attention the first time I heard it.

“How in the midst of all this sorrow, can so much hope and love endure?”

To be honest, I wanted to shout out “Jesus”!  Because that is what I believe.  As a Christian, we know that hope and love are here because of Him.  And He is truthfully the wind beneath my wings.  I don’t talk about that much, but my faith is what gets me through each day.  Somewhere in my DNA, God has instilled in me a faith and positive disposition.  It’s in my nature.  When things are really yucky, I might be down for a while…..but not usually for long.  I know where that will comes from.

There is also more to this song.  As I listened to it over and over……I recognized my community.  My little club of special needs families.  Our lives were like “Days in the Sun”.  And then it happened…..whatever we are facing.  A diagnosis we were not expecting.  A life we did not plan to lead.  Grief and uncertainty are daily companions.  Much like that of the Beast, Mrs. Potts, Lumierre.

And yet, for most of us, like the characters in the story, we still have hope.  Hope for a cure.  Hope for a better future than the one we look towards as our children become adults.  Hope for improvement in our loved one’s symptoms.  Hope for new skills to be learned.  Hope for a good night’s sleep.  Hope for a day to be seizure free.

Madame Garderobe sings the following line.  “Oh, I could sing of the pain these dark days bring.  The spell we’re under, still, it’s the wonder of us I sing of tonight.” Oh, yes…….we special needs parents can sing our woes.  We talk about the pain, the hurt, the uncertainty.  But when I look at my community, I also see joy.  Along with the wonder and admiration that we have for each other. We laugh……we laugh about things other parents can’t even imagine.  I mean, can “poop really hit the fan?”  According to my friend, the answer is yes.

Where does the joy come from?  I believe it’s love.  We love our kids fiercely despite the challenges they bring to our lives.  We love them when they accomplish new goals and when they regress to behaviors we thought they had left behind.  We love them when they sleep (we love them A LOT during sleep!).  We love them when they can’t express an emotion and they act out with aggression or when they hug our necks and play with our hair.  Joy comes and it goes……and this life is not always joyful.  Not every day.  But I think I have a truer appreciation of each joy when it shows up.

Belle sings, “I was innocent and certain, now I’m wiser but unsure.”  Boy, I can relate to that.  You grow up, you get married, you have kids, you raise your kids, they start their own life.  I had that plan all mapped out.  I was so innocent and certain……that is true.  And then, BAM……God said, “No, I have a different plan for you”.  That was not what I was expecting.  I’ve had to learn and to grow, to persevere and be creative.  I’ve had to come to terms with our situation – still working on that.  I am definitely wiser and more unsure than ever.  Yep, I think she is singing about me!

And then to me the crescendo of the song is the part that really hits home.  Belle sings “I can feel a change in me, I’m stronger now, but still not free.”  I am stronger.  And my fellow parents are stronger as well.  We have grown, but we are not free.  There is no freedom from the worry or the work that comes as a parent of a special needs child.  Parenting a young one is hard….but every day I am realizing that those days were a breeze compared to parenting an adult that should be living their own life.

Jesus will be with me on this walk.  He has already carried me more times than I can count.  His presence is real.  His love is certain.  That’s how my hope and love endure.

Days in the sun will come shining through.   Eventually. Here on earth if a miracle happens.  Or in heaven, when Tanner can finally tell me why he got up so early every day!!!