I’m A Shi**y Friend. {A Letter From An Overwhelmed Mama}

Dear You,

I am a shitty friend.

For 33 years, I showed up. I checked in when we missed connecting for too long. I saved  hard earned pennies to go to music festivals, embark on international adventures, and attend weddings, funerals, and graduations. Sometimes, I  hopped in my car and drove all night just to hang out with you because I missed you and I could. We cracked jokes. We talked deep for hours. We threw parties and planned adventures and surprises. We walked every step of our treacherous, joyful, fearful, conflicted, soul-seeking journey together. We shared sacred space in our hearts. Even when distance and difficulties stretched out between us, we always made our way back to each other

StJohnbridge

We became family.

I wasn’t always consistent. In fact, I can be a total jerkfaceasshole. And I really hate the phone, so that was never my strong suit. But you knew when your phone rang and I was on the other end, I would be 100% yours the whole time.

I wasn’t perfect. But I was all in.

When I got pregnant a few years ago, dynamics shifted dramatically. I puked my guts up for six months, and it took every ounce of energy to keep my part-time job and be a nominally decent human. I birthed an amazing baby who suffered a stroke, survived, and was given a life-altering medical diagnosis that made the most normal things ridiculously difficult. We were all thrust into chronic survival mode, became overnight experts on the medical system and waged a wild war to keep our baby alive and thriving. I was attached to a breast pump for almost two years. In truth, I have almost zero recollection of most of my mom-life. My brain and short-term memory have taken a blissful hiatus in order to continue the essential act of living. But of the sparse, dream-like moments I manage to recapture, I am painfully aware that I have been a shitty friend to you.

I’m sorry.

Motherhood has been magical and transformative. It has changed me in a million wonderful ways. It has also been an indescribable nightmare. PTSD, PPD, and PPA in addition to the normal physical/emotional/psychological challenges of new motherhood almost wrecked me. You listen with compassion and want to understand what’s happening. You want to be with me every bit as much I want to not be so alone in this. But there are no words for the challenges my family is facing. There is no way to bring you all the way to the core of this experience.  I can barely handle the pressure of it myself. I’ve had to hang on with all my might to keep even an ounce of that free-spirited, bright-spark, I-will-do-anything-for-you friend that you love. I know you miss her.

Carrie2008

I miss her, too.

My grace, my energy, my bright spark – it all goes to my son and partner right now. I don’t think it’s going to change any time soon.

And here is my present day reality: If there is something left after all of the doctor’s appointments, therapies, fighting insurance companies and working during naptimes and early mornings and late nights to alleviate the unbearable financial burden this stupid syndrome has placed on our little family, I unapologetically take it for myself. Because I can’t do life if I’m an empty husk inside.

SunsetTexas

I miss you. I miss my freedom. I miss being someone you can count on. I miss showing up on your doorstep at 1AM to hug you when your heart is breaking and laughing until we’ve completely forgotten how we started to begin with. Those days will come again. In the meantime, that grace you posses…the ability to navigate life and stay connected and keep things moving so well with your own set of challenges? Yeah, that. Your super power. I could really use a little bit of it now. I know it’s not fair to you because I am not an equal partner in our friendship during this season.  But I need you anyway.

MommyandECarrier

I’m on my way back to myself. I’m on my way back to you, too. I promise. It’s slow progress, but it’s happening one tiny step at a time. I still love you and you still matter to me, maybe now more than ever before.

And I’m still (always) all in.

Thank you for staying.

xoxo,

Your Shitty Friend

 

 

Dani’s Brain Tumor and Newborn Baby – #TinyTriumphs

This is Dani and her gorgeous two-year old daughter.  Days before Dani was scheduled to undergo major brain surgery to remove a benign but growing tumor, Dani discovered she was pregnant. Faced with an unimaginable choice, she opted to continue with her pregnancy and put the brain surgery on hold.  I hope you are as inspired by her determination, recovery, and healing in the face of (too many) massive obstacles as I am.

From Dani:

“This morning I came barreling down the stairs with my daughter in tow as well as a tote bag, purse, diaper bag, breakfast, and keys while walking down my steep driveway to my car. Ready to start my hectic day. I saw myself in the reflection of my car window. This mom is a human camel, and proud to be one too!
To explain, a little over a year ago we weren’t sure I would be able to walk down the stairs unassisted. In 2012 I was diagnosed with a “benign” brain tumor called an Acoustic Neuroma. It had grown with me over the years until it took almost all my hearing in my right ear, balance, and extreme vertigo was setting in. My new husband and I rushed to specialists who advised me to have surgery almost immediately. It was finally scheduled, and I was hopeful that all would be back to normal soon.
Four days before my surgery, I felt compelled to take a pregnancy test – which came back positive.
I had to have this surgery.
I wanted to be a mother.
I had no idea how this was going to work. My doctor gave me the go ahead to monitor my brain tumor during my pregnancy and postpone the surgery. There was not a lot of research on my situation, so we really had to rely on a hope and a prayer. As we inched up to 7 months, it became clear that the brain tumor had grown significantly. It was hard and painful to write. I became bound to a wheelchair and walker.
Dreams of a water birth were dashed. It was too dangerous to have my daughter naturally, or even with partial anesthesia in my C-section. I was placed under general anesthesia and my daughter was born at 38 weeks, which was an accomplishment in itself.  I was moved to ICU and she was transported to the nursery. I was able share two months of determined breastfeeding with my perfectly healthy baby girl, and I finally had my long-awaited surgery.
Two brain surgeries and over a year of therapy later, I can say my greatest gift is my wiggly 2 year old who challenges my balance every day!”
Dani1
Dani, your resilience and optimism are absolutely inspiring. Many wishes for continued healing and recovery.

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Do you have a #tinytriumph you want to share? Do you think your moments of victory might inspire other families to keep going? Do you want to find out how to contribute?  Click here to learn more.

Peace in the Passing: Why My Early Miscarriage Was A Relief

I have a confession.

Last year, I had a miscarriage.

And I was relieved.

It feels amazing to admit that.  It also feels terrifying.  The world is full of opinions about women and their bodies and family planning choices, abilities, and desires.  I know that.  But I’m going to share this anyway. Because this isn’t about a reproductive debate, it’s about my family. It’s about me.

In March of last year, my husband and I had mostly-protected sex.  We used a condom, but not until later in the game.  Nevermind that we have had sex this way hundreds of times over the course of eight years without getting pregnant.  We pushed our luck and it (finally) pushed back. We conceived.

Within days, my boobs started to feel like sharp razor blades were protruding from the inside out.  Random nausea assaulted me. I gagged and threw up when I changed my baby’s diaper because the smell was so horrendous, which had never happened before. I gained 10 lbs in less than a week. But the clear giveaway was the bone-crushing exhaustion.  My husband and I were cleaning and doing laundry on a Saturday while our the-nine-month-old son napped.  When he ran down to the basement to switch over a load of laundry, I felt an overwhelming wave of exhaustion hit me like a ton of bricks.  I went to our room immediately, crawled under the covers and slept for the next three hours without moving a muscle.

EchoNineMonths
My miracle boy, nine months old, and with a life full of challenges.

I woke up, disoriented, with the sounds of my baby and husband playing in the living room.  I pulled the covers back, put my feet on the floor and took three steps.  Then it struck me like a lightening bolt: I was pregnant. The boobs, the nausea, the heightened sense of smell, the rapid weight gain, the exhaustion…all of it.  And where was my period?  I checked my ovulation tracker on my phone.  Sure enough, my period was a few days late.

I fell to the floor, the wind knocked out of me.  I kept falling, my face hitting the cool hardwood as debilitating panic and despair instantly flooded my body.  My husband came in a few minutes later, hearing the hoarse, dry sobs coming from my mouth.  He laid down next to me, stroking my hair, waiting for me to get the words out.

“I…think…I’m…pregnant. I can’t. I can’t. I can’t.”

The next day, I woke up to blood everywhere.  I went to the bathroom where big clots passed through me, falling into the water below.  Having experienced an early miscarriage before I became pregnant with my son, I knew what was happening.  There was no joy in the passing, but there was peace. And I wept with relief.

The panic and despair that had flooded my body so intensely the day before slowly started to dissipate, along with the exhaustion, nausea, ultra-tender breasts, and heightened sense of smell.

Two months before the miscarriage, my son was diagnosed with FPIES.  I’ve talked about it here often, but at this particular moment in time, I was solely responsible for providing nourishment for him.  Because of his extreme FPIES allergies, he was unable to eat solid food.  His life was 100% reliant on my breastmilk, which required  me (and his milk donor in Texas) to eat a very restricted diet.

Pregnancy would have changed everything for us.  It would have put my son’s ability to thrive in grave danger.  We were already spending hundreds of dollars a month to ship diet-compliant donor milk across the country.  We were sinking into credit card debt to keep my son alive.  We had tens of thousands of dollars of medical debt from his birth, stroke, and stay in the NICU.  My husband and I were barely keeping it together.  Our marriage was cracking under the strain of daily demands. Life with a special needs baby is unimaginably challenging. It was a dark, dark time for us.

Another baby would have broken us all. Maybe irreparably.

I didn’t talk about the miscarriage much.  I shared it in passing with a handful of close friends. When people offered me their condolences, I shrugged it off. I changed the subject. I didn’t want them to know that I wasn’t sad. I didn’t want them to know I wasn’t upset. I didn’t want them to know I was more than okay. I didn’t want them to know I was relieved on a level I didn’t know existed and it seemed wrong to express that somehow.  Especially when some of my dearest and closest friends where experiencing profound infertility and wanted nothing more than the baby I despaired at having.  It felt ungrateful. It felt crude.  It felt heartless.  But maybe I was all of those things.

So, when it happened again last month, I said nothing. For weeks.  To anyone. Because the truth is, I still am not ready for another child.  My son is in a much better place now than he was a year ago.  I haven’t pumped since the end of February, and he has enough safe foods to no longer be dependent on my milk for growth.  My husband and I are healing and growing, along with our son.  We are digging ourselves out of the massive debt we accrued with all of the doctors and hospitals and extra measures we took to help our son heal and thrive during the first year of his life.

Getting pregnant this time did not induce a debilitating panic attack. (Although, it did produce surprise because we have been incredibly diligent about about birth control.) It did not send me into a downward emotional/spiritual/mental spiral.  But it did strike the same chord of relief when I miscarried.  Because I’m just not ready.  Life is easier but my son still requires loads of extra care.

When I finally started to share and the sympathy started rolling in, I deflected, changed the subject, and did the masking that I did before.

But I’m stopping all of that now.

I give myself permission to accept my reaction.

I give myself permission to feel deep relief without guilt.

I give myself permission to want another baby, but not right now.

I give myself permission to trust what is, and not what I think I should be.

It’s time to stop judging feelings as right or wrong.

It’s time to accept what is.

And this is what is: My relief does not make me selfish. It does not make me heartless. It does not disqualify my precious friends who are struggling profoundly on their fertility journey.  It does not mean anything at all. It’s just a feeling, and like all feelings, it will pass.  Something new will rise up in it’s place.

One day soon, I’ll feel grief for those beings who would be my babies.  I’ll feel grateful that they chose me to be their mama, even if it was only for a very brief moment in time. Maybe I will still feel the relief of knowing that life did not give me with more than I could bear. Or maybe I will feel all of those things at once.

But for now, relief is enough

.FamilyTwoyears

 

Mediterranean Tabbouleh {Gluten-Free}

This is a big day for me, friends. This is our first (of many) guest recipe posts.  It looks like this little blog is growing up fast!

Having tasted several of Kileah and Micah’s dishes, I can personally vouch for the delectable awesomeness of everything they make.  Plus, they call themselves hobbits and love all things Scottish (and apparently Middle Eastern).  All four of their tiny hobbit children are funny, sweet, curious, spirited and full of energy. Read on to see what they feed their brood, and fall in love with their version of GF Mediterranean fare.  

From Kileah:

My husband and I love good food.

We have a special food-shaped hole in our hearts labled Middle Eastern Food. In our most recent quest to make sure we live to 100 and not die on the couch watching our favourite Firefly and Arrow re-runs (gluten free brownie points for those of you who’ve watched all of the Firefly episodes!!!), we have been focusing on:

  • how much we eat
  • what we eat
  • the quality of our ingredients
  • it passes the “7-year-old test”

Because we have four small hobbits who also like to eat, if we prepare food that they don’t like…well…let’s just say we have a Shire Situation on our parenting hands.

Ok, back to food! So here’s our take on a quick and easy summer Tabbouleh. If you’ve never eaten tabbouleh, (insert sad hobbit face), it’s a middle-eastern salad chocked full of fresh summer tomatoes and herbs and the itsy bitsy teensy pasta. Normally, traditional couscous is made from wheat, but we prefer using a good brown-rice version of this tiny pasta and it’s just as fantastic! The brown rice couscous enhances the flavor and texture of the dish and leaves us feeling satisfied without the heavy feeling of traditional wheat pasts.

TabboulehGF1

(editor’s note:  You can get the gluten-free couscous at vitacost.com or whole foods, etc.)

Ingredients:

  • 2 c. water
  • 2 T. ghee
  • ¼ c. fresh lemon juice
  • 1 ½ c. brown rice couscous
  •  2 c. chopped heirloom tomatoes
  • 1 bunch of cilantro, chopped
  • ½ .c. organic mint leaves, chopped
  • 1 medium shallot, finely chopped
  • ½ c. crumbled feta cheese
  • ¾ c. roasted/sliced almonds
  • kosher salt and cracked pepper to taste

Directions:

  1. Bring water and ghee to a boil in a small pot, add in couscous and lemon juice, turn down heat to simmer for 5 minutes, then remove pan from heat.
  2. Add tomatoes, cilantro, mint, shallot, feta and sliced almonds together in a large bowl.
  3. Fluff couscous with a fork and add to the tomato/herb mixture. Add salt and pepper to taste
  4. Cover and chill in fridge until ready to eat. If you can wait that long.
  5. Live Long and Prosper!

May the Couscous Be With You!

-The McIlvains

Adi Hears {#Tiny Triumphs}

This is Adi.  She is a smart, bright, curious, and wonderful ray of sunshine to everyone who meets her.  She was born with profound hearing loss, and even though technology is advancing, it is unlikely three year-old Adi will ever hear without an aid of some sort.  In fact, recent hearing tests have concluded that her hearing is deteriorating in spite of the latest technological and medical advancements.

Even though genetics cause hearing loss about 50% of the time, the cause for Adi’s moderate to severe hearing loss is completely unknown.  

Hearing aids are costly.  The price for one aid is between $4,000.  Imagine putting that on a toddler’s head. Imagine communicating to your child, who cannot hear, that the hearing aid is precious and needs to be cared for with gentleness and the utmost care.  Imagine the anxiety and heavy burden of cost associated with the process of helping your child hear.  Adi attends speech therapy twice a week, and gets her hearing tested once a month. 

Adi Hearing Aid
Adi’s Hearing Aid

The kicker in all of this is insurance doesn’t cover a dime.  Hearing aids are lumped together in the same category as vision, except there is no hearing aid “plan”.  Adi’s parents get resourceful to cover her ever-changing needs, and continue to hope and search for a way for Adi to hear without a hearing aid.

Focusing on the small victories help keep Adi’s family’s spirits up, even while they face the monumental task of helping their daughter hear.  The small sounds we take for granted? Adi discovers them, brand new, every day.

Adi’s mom shared this great moment with us.

“Just the other day, she heard the soft sound of a dove singing. She asked me what it was – I explained and then she quietly listened – and heard it again! It’s those moments that make my heart happy that my daughter isn’t missing out on the simple sounds in life.” —Christie, amazing mom to Adi

This is Adi.  She is a smart, bright, curious, and wonderful ray of sunshine to everyone who meets her.  She was born with profound hearing loss, and even though technology is advancing, it is unlikely Adi will ever hear without an aid of some sort.    Hearing aids are costly.  The price for one aid is between $4,000.  Imagine putting that on a toddler's head.  Imagine the anxiety and heavy burden of cost associated with the process of helping your child hear.  Adi attends speech therapy twice a week, and gets her hearing tested once a month.   The kicker in all of this is insurance doesn't cover a dime.  Hearing aids are lumped together in the same category as vision, except there is no hearing aid "plan".  Adi's parents get resourceful to cover her needs.    Focusing on the small things help keep their spirits up, even while they face the monumental task of helping their daughter hear.

May we remember to relish the songs of the birds, and the sound of wind in the trees.  Thank you for reminding us, Adi.  We are all cheering you on!

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Do you have a #tinytriumph you want to share? Do you think your little moments of victory might inspire other families to keep going? Do you want to find out how to contribute?  Click here to learn more.