Father’s Day

I think most pregnant women throughout their pregnancy think a ton about how their husband will be as a father. I know I did. We’ve always had a very equal partnership and I wondered if that would continue as we grew our family, since I had heard the opposite from so many other women.

Scott goes above and beyond for our son every day. I don’t know a dad who does more for his family and though I try not to get too braggy about all he does for us, I’m always making an effort to thank him and tell him how much I appreciate all he does.

In light of Father’s Day, if there is one day of the year that I am going to brag on my husband, this is it.

It started in the earliest days of my pregnancy. Him making sure I had enough sleep, proper nutrition, exercise, and foot massages – even though he can’t stand feet. It continued when we learned of Luke’s critical congenital heart defect – he researched, asked questions, became an expert on his son’s heart. I watched closely as he redid a bedroom for his unborn son – rebuilt a closet and chose paint color and decor. I saw his physical labor of love and determination to make things just right.

I remember the look on his face the night I was admitted to the hospital in a critical state, with the news Luke would have to be delivered early. He stayed by our side the entire weekend. He took care of us – of everything – when I was not even able to care for myself.

And when Luke arrived and was transported to St. Christopher’s Hospital for Children, he joined him immediately. He texted me photos and videos of our son for 3 days because he knew how hard I was struggling, having to be separated from them. I remember the phone call he made to me, such pride and joy and love in his voice, telling me what a “cool little dude” he is and how I have to focus on getting better so I can join them soon.

Scott was Daddy, but he was also Mommy to Luke in the first few days when I could not be present. He changed our son’s very first diaper, gave him pacifiers, participated in his care, held him and sat and talked to him for hours on end, day and night.

We were supposed to be there together – partners, parents – yet he did it all alone, and he loved him enough for the both of us.

I remember how he researched breast milk and proceeded to inform me of all the many benefits and the differences between foremilk and hindmilk and I recall thinking to myself, “who IS this man?”

I so distinctly remember how on multiple occasions he helped hold my pumping parts in place because I did not have a hands-free bra and hadn’t anticipated that I would need to pump because I wanted to nurse. How he brought me hot compresses, bottles of water, made sure I ate every meal.

I remember how he was my biggest cheerleader and supporter during the toughest days…and how he loved Luke more than anything in this world and would do anything for him, including waking up multiple times a night to feed or comfort him. How he would never leave his side.

I remember the way Luke slept on his chest for hours and how he loved every second of it. I remember the way his face lit up the first time he said “da da,” ate his first solids, rolled over and crawled, and took his first step.

I could go on and on about how he helps so much around the house, cooks dinner for us most nights or does sweet things like wash my car or refill my gas tank when he notices it is low.

And how during the extremely stressful and scary times of caring for a child with multiple medical needs and never-ending diagnoses, tests and procedures, brings you to your knees, he is always there, kneeling right beside me or ready with strong and open arms to lift us all up.

I think the bottom line is that he cares so much about our family that it’s natural for him to be a wonderful partner and father. It’s a quality I very much admire in him and one that I know will set a good example for Luke as he grows and learns about love and relationships.

I feel so fortunate to be able to celebrate Scott on Father’s Day, taking a moment to acknowledge all of the things he does, big and small, and how they make our time together as a family so special. How he always makes us feel so very special and loved.

Heartiversary

Four years ago today, as snow began to heavily blanket the earth in the early morning hours, we prepared for the unpreparable.

I remember my head and heart in constant battle as we learned the medical team was having difficulty getting to the hospital due to road conditions. If they didn’t arrive and surgery was postponed I’d get to hold on to my baby just a little longer…I wouldn’t have to face this.

My head knew he needed surgery to survive but my heart and arms just wouldn’t let him go. The halls were silent that morning but for my muffled cries. I was numb as Scott and I wheeled him to the OR doors. I fought the fearful thoughts creeping in my mind, as this walk eerily felt like a funeral procession…and I was so afraid it was.

I was cold and hollow and at the same time, full of more love and warmth than I’ve ever known.

Physically ill with fear, my stomach was somersaulting in my throat, then plummeting to my feet and back up again. In one minute I was preparing myself to say a forever goodbye and in the next, I knew with all that was in me, that he would be okay. I was like a ball with all the pain of being slammed to the ground and then tossed high up to the sky in exhilarating joy. Up and down, up and down, for all the hours of his surgery until I could lay my burning and bloodshot eyes on him once again.

(1/3/14 post op)

I’ve never spoken of the fear I had in this very moment. It’s something I try not to think about too much. It wasn’t for lack of faith in our medical team, it was the knowledge that our children are never really ours…they belong to God…and He calls them home in His time. His time – not mine. I was not in control.

Would Luke’s purpose have been served in his one month and 10 days on this earth? I prayed with all that I was, that it wasn’t. I prayed for a long, healthy, happy life. Together.

Our walk down winding and sterile halls that morning was a walk to new life. It was a walk to rebirth. The door to Luke’s heart was opened that morning and he was gifted life for the second time. Life I could not ever give him.

(Happy Heartiversary cake)

There are times on this earth when we can prepare…and there are times when no amount of preparation will ever be enough. Times we are in control and times when all control must be surrendered. In those hours all we can do is hold on to each other, to Love. Hold on to faith. Hold on to the Peace that there is so much more than this life…so much more.

As mom to a heart warrior, I honor life with that knowledge, living every day in love, faith and so much thankfulness.

Happy Heartiversary, my sweetest Luke.

❤️💙

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. 

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.

 

 

Diagnosis Doesn’t Define Love

Here’s the thing – and it’s a big thing when the doctor says those words. When the details play over and over – and over again – in your mind for hours at time, days, weeks, years to come. Here is what I want you to know and believe with all of your heart. To lift yourself from the muddled depths of grief, sorrow, guilt and anger, you must first make room, and sit with it. Allow the tangled waves of despair to wash over you, in all of its rawness, embrace it.

And then, you stand.

A diagnosis explains and defines a lot of things, but never does it define love.

So love until you’re running dry, until your heart bursts. Love fully for every day with which you’ve been graced. Stand tall and rise with burning love ❤️

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.

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

IMG_7455

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.