Rescue Patrol

He fought the tears and tried to be strong, anxiously wringing his not so chubby – but still little – almost 4 year old hands, until they were red.

I searched him if only for just a glimmer of understanding…begged him to use his words, to tell me – even one word – how he felt.

And then finally, a quiver in his soft, small voice, sounding as if it carried with it the death weight caused by all the archers tools, it came…

”shaky…it makes my inside…shaky…Mommy”. 

There’s no on/off switch when it comes to parenting. You’re 100% in, or you’re not. Some days that means being the rescue patrol to your little darling when therapies don’t go as planned. 

Having any time to myself is an extreme rarity, as I’m sure many moms can relate. Today was supposed to be that day for me…to relax, decorate, zone out while cooking a delicious meal. Those things won’t happen. Not today.

And yet it’s okay.

Because some days – actually, most days – we don’t even get to scratch the surface of what we had planned.

Some days life isn’t okay.

And in those uncertain moments of heartbreak and suffering, we must seek to understand. We must do our best to accept and sit with the discomfort of all that is, knowing that it’s okay for every soul, to not be okay sometimes.

And so we sit, silent and shaking, holding onto each other, to love.

Holding fast to the magnificent power that comes when parenting through the pain. 

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Okay Together

“You’re my best friend, Mommy.”

Yes, Baby.

There’s so much emotion attached to his statement. If I were the mother of a typical 3 year old, I wonder if I’d feel differently about his words. The fact is, I am his best friend (his mother, his OT, PT, speech therapist, his nurse, his advocate) and forever his biggest fan.

But as much as this melts my heart to know my sweet boy sees me this way, it also stings. It stings because I know it’s true. He doesn’t have friends in the traditional sense and I can’t help but wonder if he ever will.

I know what you’re thinking – he’s THREE! Stop overthinking!

We are early in our journey and there’s so much progress to be made. Yet still…my heart cannot help but ache and long for him to know true acceptance from someone other than his mother. I pray this every day as I drop him at preschool…

“Please, Lord. Give him a friend. Give him comfort and strength. Watch over him.”

There is so much we don’t know – can’t know – until it all unfolds. That’s hard for me. Really hard. I want to know if he’ll ever be able to comfortably associate with peers. I want to know if he will ever initiate instead of always needing an adult to prompt.

Some of the fiercest battles we fight as special needs parents are the ones inside our own hearts. We battle between fact and what we hope and pray will be. We do our best to stay strong and positive and sometimes…sometimes it just becomes too much. In spite of our best efforts, we crumble. Under all the pressures and demands, necessary and self-imposed, we succumb to the battle, knees falling to the rocky ground, and we plead with all that is in us to just make it all okay.

“Please, Lord, let it all, always be okay.”

And when we finally pick ourselves up, brushing off the fear, anxiety, and yes, sometimes anger, we see that our knees bear the scars of having fallen countless times before and yet still, we rise. We rise to do it all again and again because these precious souls have been entrusted to our care. And for as many times as we fall and hurt, they hurt just as much and more – and still, THEY rise.

Our babies fight no matter what. They don’t give up, they don’t complain, they march onward – and so must we.

I would battle thousands of lifetimes to be the mother of the son I have right now. He was meant to be mine, of this I am certain. Our souls have been, and always will be, eternally intertwined.

So yes, Baby. I am your best friend. Today, tomorrow, through every sting and every scar. Together, it will be okay. Together we are okay.

Yet.

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Seeing the glass half full has not always been intrinsic to my nature. Positivity is a trait I had to earn through years of dark struggle, therapy and self-reflection, combating demons – past and present. Until I saw absolutely no other way to be, it was as if a light was turned on…what was once a flicker, a glimmer in black night, turned golden, fiery, and burning bright.

We all have struggles. Life is rough. We learn what we are made of in times of uncertainty, discomfort and doubt. When all the odds are (seemingly) stacked against us, we have a choice. We. Have. A. Choice. Always. How many times have you taken the path of negativity? It’s so EASY, isn’t it? We wallow in self-pity, thinking of all the wrong and mess in our lives, we spiral down like a roller coaster, our stomach in our throat, knots of anger and perhaps even loathing and envy for what someone else’s life may seem to afford. It’s nasty – negativity. It breeds like a brown planthopper insect, carrying with it a virus and the ability to infect and devastate its host and the crops surrounding it. It can take out the best and strongest of us even in our finest season.

But…we can rise above it. We can find that flicker of light, however bright, and we can cultivate it. We can nurture positivity, we feed it into our lives by the thoughts we keep. The deep thoughts, the ones at the core of who we are, in our soul.

Here is my example.

Luke has been struggling with the use of his left hand, something I didn’t want to fully admit to, because of all the other medical and therapeutic appointments we keep on a weekly basis. Privately, I would work with him, always researching methods and creating games and activities to facilitate use of the hand he guards and keeps so tightly fisted. It has bothered me greatly, this lack of use, but not for the reasons you might think. Certainly I want him to have full function. I want him to be able to hold a cup, feed himself, pick up and throw a ball, pet his dogs with an open palm. To not be seen as different or weird or incapable. But he has been seen this way. A stranger felt the need to point out that he could not grasp the Cheerio he was trying so deliberately to pick up and “shouldn’t he be better at this at his age? What is wrong with him?” (I won’t delve into ignorance – that’s for another time.) His determination would not let him quit. He struggled and tried again, concentrating, fixating all his energy on that tiny “O”. It’s heartbreaking at times, to watch as he struggles, but I know one thing. One very important word – YET. Luke doesn’t have full use of his left hand – YET. That one little word changes everything. It changes the tone, the meaning, the attitude, the perception of ability. Before you could ride a bike, could you ride a bike? Of course not! You didn’t have the balance, the coordination – the confidence! Our thoughts become beliefs and our beliefs become words and those words we either whisper or scream profoundly, become actions and actions become the path we walk. We can choose what we tell ourselves, what we tell others. I know what I tell Luke, and what I will always tell my son who for now, never gives up. If ever the day arrives (I’m sure it will) when he is made to feel inadequate or cannot do “that thing” my response will be, “yet” – “You can’t do it, yet.”

We need to repeat positivity until it bleeds the blackness from our thoughts, from our words. Until it becomes the only way we know how to be. It’s hard, I will not lie. Some days are a real struggle. Recognize the struggle. Own it, replace it with full, shining, bright and pure light and move on. Move past the doubt you have in your heart. If you can’t do it today, in this very moment, let tomorrow be your chance at “yet”. I know you can do it.