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.

The Dance With CHD

June 12, 2013

Today I heard your heartbeat for the very first time. My own heart fluttered in anticipation of all the beautiful days to come. What will you look like? Sound like? How amazing will it feel to hold you to my breast, comfort you, keep you safe…Your heart was beating so rapidly and loud. The doctor said your heart is very strong. It was the most beautiful sound I’ve ever heard.

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September 12, 2013

You’re a BOY! I knew it! I felt it with every part of me…and I also felt for weeks, that there was something wrong. The ultrasound technician was hovering too long today. She stopped talking. She was intent and focused. Repeated freezing of the screen, contrasting red and blue…The doctor explained there is something significantly wrong with your heart. He didn’t give much detail, only that we will need further testing in the next few weeks.

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September 24, 2013

 You have coarctation of the aorta. We are being referred to St. Christopher’s Hospital for Children. Oh – and we’re not supposed to Google…I’ll behave – for now. Because maybe, just maybe, if I don’t Google, then it’s not real. There’s a chance this could all be a mistake…some blip on the screen that was misread. This is one time when I pray my intuition is completely wrong.

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October 2, 2013

We went to St. Christopher’s today for a very detailed – and long – echocardiogram. I didn’t want to be there. I hated that I was there. I hated the reason. Despite what I felt in my soul, I prayed they had it all wrong. These doctors would apologize for us having had to drive all this way for nothing but a mistake on an echo. We would stop for lunch on the way home, shop for more nursery items…that’s what I prayed. That’s what I knew deep in my soul, would never happen. Life wouldn’t be the same after today. There’s no un-telling of a truth…Right there, in black and white and gray…contrasts of red and blue…it was all laid out. Your defect was critical…I was critically devastated. “Immediate surgery”…I made it through the consultation, drawings of your heart, questions of whether I’d ever taken any medications while pregnant, family history…I had few tears…I was holding it together. Until I wasn’t…Until I made it to the parking deck and clung to the railing as I sobbed, unable to take another step. As if climbing the stairs would signify the uphill battle we were now about to face.

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June 20, 2017

We’ve been facing battles of all kinds for the better part of nearly 4 years. And on this, the eve of my sweet Luke’s yearly echo, I am yet again reminded that this heart journey never ends. It’s sting lasts long after the scars begin to fade, and like a houseguest who’s outworn their welcome, it lurks in hidden chambers, refusing to ever completely leave. It’s like a lost soul, inhabiting it’s host…never fully here, never fully there…if we are fortunate, it will stay at rest, find peace.

Peace.

I’d like to say I’ve made peace, found peace. But I’ve not…this dance with a disease I can’t see brings tremendous burden…and it’s not Luke’s heart that is the burden. It’s my dance. It’s my own feet that get in the way…I stumble, I trip. I’m falling all over…

It’s my own heart, my own fears, my own anxiety, that are the real uphill battles. It’s in the 2:00 AM wakings – 3 years later – to check on him. It’s in the visual reminders of arterial line scars, cut down scars on his neck, arms, groin, feet…and his back.

The yearly echo is a reminder of how far we’ve come and where we’ve been. It’s a yearly dose of reality slapped square in the face. I wish I could say I am beyond the anxiety and the fear that this day brings…but I’m not. I clumsily continue the dance, stumbling with the ghosts. They can’t ever leave because they are the truth of the past. They hold all that was ever lost, all that has ever been gained, and all that is yet to come. I fear to let them go, I will lose footing on sacred ground. That I will forget, that in great pain and grief, the dance must continue. And I understand that while I may dance with peace and acceptance for a song or two, ultimately, my partners will change – often. It’s the impermanent nature, the uncertainty, of CHD.

 

 

To The Mom Stressed and Worried About Her Child’s Health

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Dear worried and stressed Mom,

I see you. I see you smiling and hustling and bustling through life. Going to work, working from home, in the grocery store, running the roads, the parks, stroller in toe. Happiness and laughter, but with a slight twist of hesitation. I see the shadows lurking in the corners, ready to stomp across the sunshine in your eyes. The imminent gray that grows and swells, and in a moment, will envelope your happy – if you let it.

I see you going about your day, responsibilities and regrets. Worries if you are spending enough quality time with him. Phone calls to doctors and therapists can wait – but they can’t…I see you pulled and stretched, molded and shaped in directions of choice and directions of fear. Like warm, pulled putty in a toddler’s hands, you’re thin, drooping and sagging. Good, bad, insensitive and well-meaning remarks – they all cling to you, lost in the sticky sea of your soul, they become a part of you. Don’t let them become you.

I see you late at night, wearily standing at your kitchen counter, drawing weekly meds. You wait until he sleeps, for this disease has robbed enough of your time together – you will give no more. While most have a junk drawer, yours is chock full of medical supplies and drug interaction pamphlets. I know what’s in your head – with every pull of the plunger, filling a vial higher and higher, flick of the syringe – this isn’t fair.

Doing this isn’t fair. Being here isn’t fair. This life is sometimes so unfair. So full of hurt you can’t explain unless to another who has also been there. You hurt for your child, although they know no different – you do. And you weep inside and out for what they must endure. You weep because you feel helpless, powerless and you must watch them endure.

I see the pain behind the smile. It lurks in the words of positivity you often speak. You can’t fool me. I know you. I know your scared, overflowing, joyful and broken heart. I know it has no bottom for that dear one you adore. I know it stings. I know it’s sore.

Momma, I feel you. I feel your heartaches, your nausea, your headaches, your sleepless nights, the hesitation in your step as you drag yourself forward because –  THERE. IS. NO. OTHER. WAY. I feel the desperation in your longing – the day you pray will come – when worry of health and sickness will wither away, wash away. Please – take all this away.

I hear your heart stop when the doctor enters the room with results. When a fever is never just a fever, a cough is always something more, weekly therapies, visits to specialists and the ER are your normal. I know the staggering halt that encompasses your entire being. When the world stops revolving and begins spinning, spinning, spinning, out of your control. I know you want to make it stop.

I smell the sweet victory when you can overcome that fear – fight the foe with all that is in you, and then nestle tightly in the quiet moments where the intoxicating scent of your child’s head, the stroke of your finger along his soft and fleshy cheek, holding tiny feet in the palm of your hand, is the elixir of all that is right, and good enough, to always bring you back. Back to carefree, worry-free, stress-free. Even if only for a little while.

I see you there. Soaking in every. precious. moment. Because we know too well, Momma, another one of these is never guaranteed.

I see you playing with him, chasing, tickling, giggling, loving. Wholehearted love. Fierce love. Love that defies anything this messed up earth could bring. A love that fights, hopes, and a love that stings like no other when you find you are helpless to the illnesses and diseases beyond your control.

I see you struggling to keep it all together, Momma. Fighting back the tears, the lump that grows in your throat that you never let out – can’t let out – are afraid to let out. I see you change the station because you simply cannot listen to “that” song – not today, not now. Maybe not ever. I see you congratulate a new mom, and I also see you cry in secret as the pain of your own losses, missed opportunities and anger over a cruel disease, overtake you. I know the guilt you will feel – for everything. For being too much, too little, not enough, wanting more, having more than you believe you deserve. For wishing your child never had to endure life living this fear. That you, wouldn’t have to live this fear.

I know that sometimes when you cry it comes out of your eyes, but sometimes, many times, it just stays in your soul.

I see you strong, Momma. I see you now. I’ve seen you in the past and I know I will see you again. Please listen to me. Read my words. Take my words. You are stronger than you know. You have more fire and feist than a pen of wild bulls, because this is your baby – your heart, your soul. When you feel weak and fragile, like you can’t even make it to your pillow – trust. With all that is in you, trust, and keep your faith close. Power comes in times like these. Strength comes in times like these – where in that brave, costly, intentional action of the heart, pure love wholly lives.

I know you, Momma. I hear you and I see you, and we never need words to speak what we know of each other in our hearts. Your worry is my worry. Your fear is my fear. My strength is your strength – so take it. When you are running low and weary from the fight, press on. When your chest is heavy and you can’t breathe, see the beauty in front of you, pour your heart into the joy that is before you. Hold that baby tight and carry him through…and I will carry you.

Peace be still, Momma. Peace be still.

Motherhood – Part 2

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This piece first appeared on the St. Christopher’s Hospital for Children website as a 3-part blog series.

http://stchrishospital.blogspot.com/2015/05/guest-blogger-laurel-youse-mother-of.html

GUEST BLOGGER: Laurel Youse

Monday, May 11, 2015 – Part 2: Motherhood

Mothers dig deep. We open ourselves to love in spite of the cost, in spite of the unknown. We harbor great burdens, hide sorrows only our hearts can know, and we relish in great victories and amazing joys. We cling to hope that is steadfast and sturdy and cherish the moments when a tiny, smiling face, an intentional and knowing glance, the tight squeeze from a fragile hand, can cast all doubt away. We find strength often times not of this world. We find the power to love unconditionally and without reserve. We find faith. Or maybe it finds us.

In the months and year that would follow, our little growing family would find itself faced with multiple challenges – a diagnosis of HELLP Syndrome for me, requiring early and immediate delivery of our Luke, heart surgery at St. Christopher’s Hospital for Children for Luke and the diagnosis of a kidney defect, ongoing physical and occupational therapies, and always more tests and procedures. And in the midst of all this – this path I certainly did not choose – I have found joy. Yes. Beautiful, bountiful joy.

While life can still be scary and uncertain, and although the original dreams I once had are gone, they have been replaced with better ones. Brighter ones.  More meaningful ones. The plans I made – expectations of the perfect birth, hearing his first cry, snuggling my newborn on my chest, nursing my son – those things still hurt a little. Some days, they hurt a lot. Maybe they always will. Developmental milestones – I will never take for granted a spoken word and no step will ever be considered ordinary. Yet, I’ve had great privilege – the honor – to know my child more intimately than most. I’ve sat at his isolette for hours, memorizing every feature, every crease and line. I’ve fought for him, prayed for him, whispered into his ear how loved he is, how his mommy is always there. I taught him how to drink from a bottle to rid him of that dang NG! I’ve shuffled bunches of machines and tubes and wires just to hold my baby only to have the pulse ox alarm with every slight movement. I have navigated my way through medical jargon and cared for my child in ways that are natural and ways that are very unnatural. I have learned him like the back of my hand. I have seen his heart from the inside. And his heart – his beautiful, perfect heart – was broken so that mine would one day heal.

This year – MOTHERHOOD – has taught me FAITH, JOY, PATIENCE, LOVE…and even more FAITH.

Luke’s heart taught me how to use my own: To be present in all the moments of life because tomorrow is never promised to any of us. So laugh. Cry. Give sloppy, wet kisses and squeezy hugs. Be positive – even when it’s hard and you think you can’t; dig deep. Give freely – your time and your love. Be not only a pillar, but an example of strength for your family. If you are reading this you have likely been touched by a child and although our journeys may be different, in many ways they are much the same. The story in your heart is the universal story of mothers. A mother’s heart always knows, always believes, and always whispers hope. Each one of our children has been born to us of perfect love and in that love we too, have been reborn as Mothers.

There is faith. There is joy. There is kindness. There is purpose in pain – we have to find it. And when we do, embrace it – as tightly and lovingly as a mother embraces her child. Nurture it and watch beautiful, bountiful life flourish. The gift, the blessing, of motherhood.