The Truth Of How To Be Strong

As I scoured the preschool floor for my missing earring, I heard her voice…”You are so amazing. I don’t know how you do it every day. You’re so strong. Like a supermom.”


Preschool drop off has never really been easy and lately, we are truly struggling – in many areas and ways. This particular instance involved quite a bit of physical and mental struggle and it took a lot reassurance, use of our picture schedule and storytelling. It took me sitting on the floor, face to face and heart to heart as I squeezed him so tightly I could feel it beating, my lips touching his soft little ear as I whispered our mantra of sorts, “You’re safe. You will have the best day ever. Mommy will come back after nap and snack. I always come back. I love you.”

As I stood up, brushing from my sweaty face, pieces of hair that had been yanked from the messy bun I’d slept in the night before, our eyes met. She’d seen me drop him off countless times. She’s seen us on the verge of meltdowns, the panic in his eyes when he realized his coat hook and cubby had moved location.

We never really spoke before this day, other than the customary etiquette that often ensues as parents go about the weekday ritual of delivering their children to daycare and preschool before heading to work. And largely, that’s because I’m usually always on the verge of tears as I leave the building. I want to say more, but I can’t. I need to hold it together until the car…God just let me make it to the damn car in time.

So many times, mothers of children with special needs are praised for their strength, perseverance and determination in raising their children. While it’s great being reminded that you’re a good parent, there is something inherently uncomfortable when you are told you are strong for raising your child that has special needs. When people share these sentiments, I know they mean no harm. If anyone reading has said this to me – or a parent raising a child with special needs – I understand it all comes from a good place. However, deep within me there is such an unsettled feeling that while the world around me sees me as this fearless, caped supermom, I know that on the inside I am insecure, scared, and every day, so completely overwhelmed by the road I am on.

When someone tells me I’m strong, there is a part of me that wants to scream at the top of my lungs how utterly weak and defeated I feel. I often nod my head, take the compliment, and know most parents in my situation likely feel that their strength is NOT an option. When you have a child that is medically fragile, autistic, developmentally delayed, or intellectually disabled, the only person that can advocate and fight for that child is the parent. There are only two choices (1) you take on the fight (2) you abandon your child. Most parents could never conceive of leaving their child, and therefore the only choice they have is to put on their big kid pants and plough forward, full steam – just like Thomas the tank engine. 

That particular morning at drop-off, and every time I hear it, the most difficult part of being told that I’m strong is that I feel like it means I’m not allowed to be weak or have moments where I don’t feel confident or happy. It feels like a lie. Most days it feels like I have to put on a brave face, but in reality, all I want to do is hide in my closet and cry on the floor – and I have. I never feel like I can be scared, frustrated, overwhelmed or sad because I have to be strong for my child. Over the past few months, I’ve come to the slow realization that I don’t have to be strong all the time. It’s getting too hard…

To all the moms in this special needs community, you certainly don’t need it, but you have permission to have a bad day…to cry…to scream…and to feel hopeless – and not feel guilty for any of it. We cannot always hold it all together. If we don’t stop to feel our emotions, we will only find ways to destroy ourselves.

The world sees us as superheroes for our children, and I imagine they believe we are cloaked in our vibrant capes as we dash to various appointments. But do you want to know the truth? The truth is that no single person is capable of being a superhero all the time. It’s natural to feel weak, to feel sad, and to grieve the life you thought you’d have…and the one you are now living. It doesn’t mean you are ungrateful or love your child any less.

The next time someone tells you how strong you are and how much they admire the color of your cape and your ability to be supermom, I challenge you to be vulnerable and messy with the people in your life. Tell them you don’t always feel strong. Tell them there are days you feel like it’s absolutely impossible to deal with any more stress…and that you just need someone to let you not be strong…for just a minute.

When I have forced myself to get honest with my friends and family, I have found that this is where I find my real strength. I feel their support as they listen to all my frustrations and sadness. We can’t keep it all in, all the time.

I encourage you to NOT be strong every single day. I’m working on it, and you should too. Your sanity depends on your ability to process all these feelings. Once you’ve had a chance to feel weak, it is only then, you will know the truth of how to be strong.

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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. 

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.

Now Autism 

I need your help in changing the way the world sees anyone who is different. The words that are to follow are important, and stringing together the appropriate letters to convey what is in my soul right now, feels just about impossible. Writing from my heart can be painful, but it’s 100% real, and real is what I always strive to be.
A few days before Christmas 2016, we went for a second opinion and more information regarding Luke’s cortical dysplasia/cerebral palsy. Our previous neurologist transferred out of state and we had made this new appointment with a very reputable doctor last Winter, waiting a year to see her. Going into the appointment I wasn’t worried. I already knew Luke’s diagnoses and challenges but I wanted a clearer picture, a better understanding, and to discuss some concerns.

So tonight, I want to share with you, and the world, that I have a son, his name is Luke. He just turned 3 and he is so perfect and so beautiful that even now, I still can’t believe he really belongs to me. He makes me believe in God and in miracles. He lights up my entire world…and he has autism.
And although this isn’t shocking to me – I have known in my heart for quite some time – I still have moments of shock. I know in a few days the sting will wear off more fully but what won’t wear off, is the overwhelming sadness and fear for those in this world that are tormented because of their differences. This is where my heart has been sitting since last week. I can’t talk about it without tears. Even as I type this, I can barely see through them all.

I’m not sad for Luke, I’m not sad for me, for our family – Luke is amazing just the way he is. I’m sad for the people in this world who are so closed-minded that they will never see the beauty in someone with a disability. Until you spend some good quality time with Luke, you may think he is a typical toddler, and in many ways, he is. But he struggles – interacting with his peers is extremely upsetting to him – so he doesn’t do it. He has meltdowns. His left hand frustrates him, his left foot isn’t as stable and causes him to sometimes fall or appear very clumsy. Transitioning can be absolutely unnerving for him and he has difficulty expressing and communicating. He is impulsive and at any given time an object could be on a trajectory for your head (unintentionally). He sometimes needs to repeatedly spin in circles (I would barf) or throw himself into hard surfaces – maybe even you.

I could tell you more about Luke’s challenges and things he struggles with, more of his quirks, but instead, I want to tell you who he is.

Luke is capable of giving the best and most amazing hugs and kisses ever. He has a great sense of humor and can make a room full of people laugh. He absolutely loves adults and is extremely engaging and a total sweetheart; everyone who meets him, loves him. He sees beauty everywhere – and he makes sure you see it, too. He is polite, he is caring, and so very sensitive. He is the best and biggest helper. He ALWAYS knows where the sun and moon are at any given time. He has amazing hearing, and tells us when aircraft is approaching long before we can hear or see it. He loves music and has some pretty fancy footwork. He is very bright and super inquisitive to the point of driving me mad most days! He has an absolutely incredible memory. I could go on and on…These are Luke’s gifts. Nothing of which to be ashamed, or to hide, they are uniquely his.
Most simply put, Luke is love.

It’s not disability that robs us. What robs us, are our minds and the negative thoughts we house in them. Each of us is a vessel through which either love and positivity flow, or, negativity and sadness. We have the choice every day as to what type of conduit we will be to each other and to the world. And as long as I am on this earth, I will do my damdest to be sure Luke will only know love and acceptance.

As you’re reading this, you’re perhaps thinking that I have it all together – that I’m so positive – and you’d only be half right. I am positive. I worked for that and earned that many, many years ago in my childhood. It’s who I am, and I thank God, because I never would have made it through without that thought. But having it all together? No way.

This last year has been extremely stressful and challenging as I kept silent in my heart what I knew about Luke, until we received a diagnosis last week. We are challenged daily by his behaviors. I have searched and researched, for every possible activity and experience to give Luke, so as to help him – our nights and weekends have been consumed. I’ve spent so much time at his daycare to help him better interact, his classmates now call me “Mommy” and it’s totally possible that if you were to peek in the window, you’d see me holding someone else’s child, or wiping their nose, or reading them a book, or just plain handing out hugs and giving knuckles. But I don’t mind any of it.
While I haven’t had much time for myself lately, it’s okay, because my son only has one shot at being helped early. Now is the time for the big push. He has made some great strides in the last few weeks and we know it’s from supports my husband and I have sought and have been providing both ourselves and through therapists. Now he will have access to even more and for that, I am so relieved and thankful.

So no, I don’t have it all together and this is not the least bit easy. I have a lot to learn. It’s not as cut and dry as heart surgery (but thank God it’s not heart surgery, again!) I am exhausted most days, cannot sleep most nights, and am often times the primary parent caring for Luke when he is struggling. He and I have a very strong connection that is different from that of he and his Dad. Being able to calm Luke comes very naturally to me and while it’s not always foolproof, most often I can at least desecalate and stabilize, and bring him comfort.
If I can ask one thing, please, educate your children, educate yourself. Talk to your children about the beauty of a world filled with differences. Kids are perceptive; they know when a child looks differently, acts differently, or talks differently. And maybe one other thing – stay connected to the people in your life. If someone drifts away, there may be very good reason, but perhaps not one they are able to, or can share at the time; don’t assume, don’t judge. Your text, phone call, offer to go to lunch or grab a coffee, will speak volumes to them, and could very well be the thing that gets them through some pretty challenging moments.

Remember that this life isn’t about YOU. This life is about others. What joy can you bring to someone else. How might you ease their discomfort. The measure of a life well lived isn’t in the loud displays, accolades, and self-seeking recognition. It’s in the quiet moments when you choose to be a conduit of love and pure acceptance to someone else and no one else knows – it’s between giver and receiver. We can all strive for this, every day.