Friend,
In this world we are somehow both impossible to miss and invisible at the same time.
As a parent of a child with special needs,
We live parallel to the typically developing lives around us.
Many may offer condolences at first,
May call us superhuman for living a life we didn't even know we'd signed up for.
A life that has eventually become normal to us.
But there are times when it becomes painfully evident that it is anything but normal and few will truly understand.
As a member of the few,
I offer you my validation.
I see you making appointments.
I see you trying to grasp all the information coming to you in overwhelming waves.
I see you trying to make decisions for the soul who is so vulnerable and who you would do anything for.
I see you at IEP meetings,
Graphs and jargon spread out on a ream of paper,
Measuring every inch of your child's progress.
I see you cheering for the smallest baby step.
I see you trying to be gracious to well-meaning people who ask if you've heard about this or that remedy or if you've heard about a book so and so wrote.
I see you being polite but secretly irritated as if this is a problem simple enough to solve that way.
I see you in public,
Strategically making your way through your errands,
Avoiding certain stores or aisles or times of day,
Keeping your cool while your heart flutters,
Working hard to have tunnel vision,
Afraid to see anyone's reaction,
Especially if things get difficult.
Afraid your baby will be stared at,
Afraid you both will be judged.
I see you living in a bubble you've created in your home,
Comfortable in your own routines and schedules and way of caring for your child,
Occasionally almost forgetting how different it all is.
And then some mundane event,
A trip to the park,
A school event,
A birthday party knocks the wind out of you,
Shatters your peace in a split second and you are suddenly grieving again.
I see you loving your baby more than you knew you were capable of.
I see you feeling guilt for the resentment of the situation that sometimes rises out of the darkness where it hides because you wouldn't trade that child for anything and you love them just the way they are.
But sometimes the pain is so big it wraps around you and squeezes until you can't breathe.
You want them,
Yes,
But you also long for what you thought their life and your life would look like.
You ache for them to have all the happiness in the world and you wish for something to be easy.
Everywhere you look for everyone else it seems so much less complicated and you feel so alone.
I see you at night awake trying hard not to look too far into a future you can't possibly anticipate,
Walking the fine line with your heart between hope and fear.
I see you my friend.
I see you.
So often you feel unseen but I see you.
Release now all the air in your lungs.
Stress makes you breathe tightly and shallowly.
Release your eyebrows,
Your jaw,
Relax your shoulders,
Your abdomen,
Legs,
Ankles,
Toes.
Push out all the breath you didn't even realize you were holding today.
Now accept into your body fresh new air.
Pull it from the depths of your belly all the way up to your throat.
Hold it there for just a moment and then gently blow it out through your mouth.
Release now any shame that you might feel for not being the perfect parent.
Breathe in the forgiveness and peace you would freely offer anyone else in your shoes.
Breathe out,
Releasing today's mountain,
Whether you are staring at it in front of you,
Halfway up it,
Or collapsed at its summit,
Worried about the next one.
With this next breath,
Pull into your heart the peace of knowing you only have to take one step at a time.
Friend,
You have taken so many steps.
Allow yourself to see how far you've come.
Release the pain of longing for the life you imagined.
When it comes again,
Let it wash over you like a wave,
Knowing it will pass and you will rise again to the surface.
My friend,
You are not alone.
Feel the love of your family and friends who watch in awe as you navigate with no map or compass.
Feel the love and the community of many others who face similar challenges.
Feel us cheering you on.
Feel the love of your child who may not be able to speak these words,
But let your heart hear them.
Thank you.
I love you.
You are doing so much better than you think you are.
My friend,
You are good.
You are worthy.
You are enough.
Stay here in the safe and silent arms of this moment and breathe.
