Reliving those moments…

Sometimes parenting sucks. Not the waking up in the middle of the night, or the food that gets hurled onto your new white shirt. Who really cares about a scuff on those $50 Striderite shoes or the fact that someone cut their own hair with the kid-friendly scissors?

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The most awful of times is when we can’t fix it.

It is that thing that you knew was there, or the times you knew would come. Those moments of 2am sickness, fevers that won’t break, flushed cheeks, or in our case, brief spells of total blackouts. Those moments in life where the cliché, why can’t it be me, becomes alarmingly appropriate. I wish I could sacrifice myself. The bedtime routine of her body all arched up in bed and snoring- her throat drying out as she gently falls asleep… and when I want to cry… a big, ugly cry. But she just wraps a sweaty little arm around me in her stupor, I breathe her in, and I can’t help but fall madly in love with that little being. I wish I could fix it.

Our perfect beings somehow become injured, no less perfect, but more vulnerable… making us, as their guardians, more exposed than we knew we could be. Our little hearts walking outside our bodies left helpless for moments we can’t even track, with ailments we cannot heal. We wait for the phone call from some staff member that says, No worries, Mrs. Martinka, she’s just being a toddler. Instead my phone rings and the sweet voice of a doctor comes on.

Oh shit.

It’s all I can think, and as they tell me exactly what I knew and never wanted to hear, I’m dying inside. A piece of my heart is marching around the room in her colorful cloth diaper laughing, and the part of my heart that is stuck in me is screaming- simultaneously stopping and racing at the same time.

#aisforadelaide #thehardestpart #parenting

You know what I am saying to myself as I choke back tears and gather the important information is every curse ever spoken. I’m getting names and numbers, and big words I’ll later look up on Google. The heat in my face is rising and I can feel my unborn kicking me from the inside. Just stay in there, Millie. I can’t keep you safe out here. A piece of my heart is breaking, and yet the silliest part of me is right there, running around, happy and perfect as the day she was born.

The moments of gasping. Blackouts. They have a reason. A cause. And I didn’t want to hear what I already knew.

And I hate it.

It’s another unknown. It’s reliving her diagnosis all over again without the acceptance that it will all be ok… not knowing what is ahead for us and longing for the ignorance that’s kept me company for the past 26 months.

As I hang up the phone, and make another appointment, send another update in an email, request another referral and get another approval code, the routine is different. This isn’t preventative, this is proactive. This is taking the next step. This is fear and hurt and wonder. And I crash my face into the pillow and scream, hot tears saturating the fabric beneath my eyes. Does it mean surgery? It means the possibility…

Because this is what parenting is, some days. And some days I don’t know if I can do it. But it’s possible that I can.

This warrior keeps me strong. She keeps me brave. She’s taught me more about living than I’ve taught her at all… and she’s only 2. This kid knows that happiness doesn’t come from money or things, it’s not all about the places we go and the people we meet. There are days that happiness is a good bite of avocado, kisses from the puppy, splashing in the bathtub, or seeing mama after a procedure. Happiness is what we make it, and this life we get- we sure as hell better live.

So here’s to us. Mamas, papas, guardians. Warriors.

Comments

  1. Gogo says

    My heart breaks for you. Thanks for sharing. At least we can virtually hug you and you little princess. You walk the unknown path as a pioneer for all of us who may have to follow.

  2. Robin (Masshole Mommy) says

    Huge hugs! I can’t imagine what you’re going through, but you definitley have support when you need it :)

  3. says

    Oh wow, that is beautifully written, I see how much heart and soul is poured out into this and your daughter being her mother. I don’t know what is going on, but I pray for healing. She’s beautiful and so lucky to have a dedicated mother as yourself. Thank you for sharing part of your journey with us.
    Heather recently posted…Five Credit Card Mistakes Moms MakeMy Profile

  4. Eli says

    I am sorry you did not get the news you would have liked. Thank you again for sharing your story. Addie has an army of the best doctors on earth looking out for her, and your family has an army of readers ready to provide support. All the best to you.

  5. says

    Dearest Chelley…
    There are no words. Just know that you have an army of women throughout this state and country wide who are supporting you every step of the way.
    love love love,
    Jess

  6. says

    My heart goes out to you . I was were you are now in January when my youngest started having seizures. It took us several long months to finally get the results of so many tests it is epilepsy but knowing the fact that our doctor was just as scared as we were freaked me out a little bit. So I will keep you and your family in my prayers.
    Melissa recently posted…Proud To Be A Railhawks FanMy Profile

  7. says

    Stay strong. As a parent, I can totally relate to this story. We want to see our kids happy and healthy, and in those moments that are way out of our control, it hurts us and breaks our heart. We want to magically fix everything and even though we can’t always do that, we have to stay strong for our families and pray for the best! Thinking of you during these times!
    Brittany C. @ Mom. Wife. Busy Life. recently posted…Gym Bag Essentials: Top 10 Gym Bag Must-Haves #FreshNaturallyMy Profile

  8. Lori says

    Beautifully written, Chelley! Wishing you strength and courage as you face this tough time. Stay positive!

  9. Becky Ware says

    Sending Prayers. I am grateful my grand daughter Vivian has only had the ENT issues at this point.

  10. Michelle Carnevale says

    As a mom of an 11 year child with achondroplasia, please don’t think I’m being glib…It’s ALL so gut/heart wrenching…but, something my mother always told ME… “This, too, shall pass.” It may not seem like much but it’s imminent…good imminent! Love you guys to the moon…and back…my heart follows your travels and squeezes with angst when I read your pain. I wish I could help you through, but, unfortunately, as moms of LP’s … we ALL earn our own stripes. You are always in my prayers, Chelley, Addie, and Dave…You too, Millie Martinka… <3

    • says

      Thank you, Mikki! We have been blessed that nothing has really been gut wrenching in our 2 years, just minor things… and the idea of 2 more surgeries in such a short time is so overwhelming. Time for some stripes, for sure!
      martinkadelux recently posted…LPA Conference Tips!My Profile

  11. says

    We don’t have any kids at the moment. I can only imagine what you are going through, as a mother who loves her daughter and wants to protect her. I pray that the doctors can get her better and for strength for you. To read this post and hear the love and passion you have for your daughter is so sweet. You are right, those moments like this make it really hard!
    Kelsey Apley recently posted…Establishing A Skin Care RoutineMy Profile

  12. Pam says

    I am so sorry that you’re going through this. Having an ill child is something no parent should have to go through.

  13. Shauna says

    Wow, so beautifully written… I can’t imagine what you are going through but all I can say is that you and yours are in my thoughts and prayers

  14. Lisa says

    12 years ago I had “that” phone call. My knees went weak as I listened to my daughters neurologist explain to me that the sweet arching of her back she had been doing was confirmed on MRI that she needed surgery. I had thought it was her sweet way of reaching for me to pick her up. Little did I know it was a classic symptom of spinal stenosis, I didn’t even know that was a thing. Now she is a 13 year old precious girl who has tons of friends, plays softball, and has 100’s of followers on Instagram (still learning all about that)

    All that to say, while it isn’t an easy road we’ve been given to travel, it is not one we are walking alone. Prayers to you and your girls!!

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