Raw Thoughts

My heart feels sunburned today, as if it’s peeling and a bit dry. For 8 years, I have advocated for my daughter in her health struggles. I was largely dismissed, and diagnostic tests were not done despite multiple annual requests. We switched health care physician’s groups, and within months a scope was done. The scope confirms our hunches; that parts of her body are not communicating properly with each other. 

My emotions slosh back and forth like waves in a bathtub. I am angry, indignant, rage-filled, and overwhelmed with grief at the years she has lost. I am so angry about the injustice of our needing to be compliant with the health care protocols, so I dutifully took her to counseling to address the psychological aspect of her healing; while the physicians blindly prescribed the same medicine every visit; the medicine that probably contributed to this health issue! They failed to see her as a patient with emergent symptoms and instead blindly did what they always do, prescribe the medicine; get the kickbacks, keep her diagnostic costs down…while her health has faded. 

The worst part is the utter feeling of betrayal, knowing that I have spent countless hours and gas money to initiate change within the same health care provider; volunteering my time to ensure a smoother process for the next patients to enter the system behind me. 

As I held her yesterday and she sobbed, I thought back on the countless messes I have cleaned up for her; of the years of agonizing tears and questions of why she has to be the one to wrestle with this. 

Bitterness and rage would be so easy to embrace…but Christ stands in the way. 

I see Him.

I see His scars, the ones meant for me. 

I hear His agony when He asked why God had forsaken Him…and realize that God forsook Him for me. 

I sinned, I hated, I raged, I manipulated, I coveted, I wanted what I wanted…with no thought at all about anyone but myself. 

My mistakes and deliberate choices to serve myself have all nailed Christ to the cross…before I even was alive; before I sinned. 

I have been loved so deeply, so undeserved; how could I not  love others with the same depth of grace that has been lavished on me? 

I forgive them…every single Dr., Nurse, and Physician Assistant, all the bureaucrats that passed regulatory guidelines pressuring the medical providers to care more about seeing cost reduction and less about seeing the symptoms of their patients. I forgive myself for feeling trapped and tired, and failing to fight harder. 

The presence of forgiveness and grace doesn’t mean lack of accountability, however. I am more determined than ever to make things right for my daughter, who has lost 8 years of her life to an embarassing medical condition. I am tenacious in my dedication to be vocal on behalf of the voiceless. I refuse to sit idly by and allow other children to suffer through thinking that their Dr. has the only say in their health. Second opinions are an important part of discovery, and diagnostic tools are valuable tools to be utilized for the benefit of the PATIENT, not to be avoided for the benefit of the bottom line! 

I will be present and vocal at meetings, I will ask the toughest of questions, and I will not be bought. I will represent the voices of the poorest, the ones who don’t even realize that advocacy is their right. I will respectfully debate and persuade and hold accountable those in leadership. I will embrace the forgiveness of the one who forgave me, while still lovingly revealing areas where change is needed. 

My daughter deserves a legacy. Hers will be one that delicately embraces the passion of admitting the wrongs that were committed while gracefully offering forgiveness. It will be the most demanding and beautifully painful dance of my life. As I embrace my Father God, I trust that He will tenderly lead my steps to the music He sings over us. 

He is big enough and omnipresent enough to dance with you through your journey as well. Pour out your heart to Him, yell if necessary. Be breathless as He tenderly and strongly leads you into wholeness. Do you hear the music? I do. His song is your invitation. 

May our hearts have courage, may we leave our fears behind, may we boldly join Him on the dancefloor of life, and may we forgive as we have been forgiven.

West Michigan Get Well Wishes

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(C)Gracie K Harold 2015

Simpatico Coffee
http://www.drinknicecoffee.com
And Great Lakes Raw Honey which I bought at http://familyfare.spartanstores.com/spartannash
The combination has been soothing as I rest and get over my upper respiratory issues.
    Do you have any get well soon remedies from your local area?
Stay and/or get well,
Gracie

Engulfed

“Scars are a reminder that healing has taken place.” – (c)Gracie K. Harold 2014

The most profound thing was discovered by my surgeon during my recent hysterectomy.

Before I divulge the discovery, however, I need to share an event that preceded surgery.

I had been doubled over in pain for weeks; and I was on my 5th round of antibiotics.

James and I attended church despite the pain.

After the service, there was an invitation to be prayed for; and James and I met our friend John up front.

Together, John and James held my shoulders as John began to pray that I would be healed.

As we prayed, I felt so loved and accepted and I knew that God is a loving Father; I felt assured that he approves of me and is proud of me; not because of what I’ve done but because I’m HIS.

I felt the sensation of warmth inside my abdomen, right where the pain was.

It felt like a hot tub was bubbling inside of me!

My pain went away, and even though I continued to have exhausting days mixed with good ones, the constant pain was gone.

While I was in the recovery room post-op; my surgeon met with James and asked him who had treated my Endometriosis.

James was confused, as he had no idea what the Dr. was talking about.

The next morning, my surgeon came in to do my discharge exam.

I told him about the prayer at church and he said, “That explains it then.  Your uterus showed scarring over the Endometriosis, as if it had been surgically treated.  Huh.”

I realized that my scars are a reminder that healing has taken place.

May we always see our scars as proof of healing, and may we always rest in His great love for us…and be engulfed!

Engulfed (c)Gracie K. Harold 2014

Engulfed (c)Gracie K. Harold 2014

Blue Cake

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My friend made us dinner a few days after I was home from the hospital following my recent hysterectomy.
She came over to drop everything off, and on her way out (after visiting with James and I for a bit), she told us that there was a cake in one of the pans. Her son, who is the epitome of a curious, inquisitive “son of thunder”; and who I absolutely adore in all of his full/throttled (mis)adventures, took great pains in decorating the cake with sprinkles.

After we practically devoured the meal that evening, James brought me my slice of cake. Bright blue frosting was painstakingly dotted with polka dot sprinkles in a deliberately energizing way. It looked like a lively party was going on amidst blue waves.

I grinned, ate the cake, and we all took turns showing off our bluish teeth and lips. It was hilarious!

The pain meds do put my mind on a bit of a delay, but the next day I realized why she baked us a cake.

In one of my posts, “the Cake is old and moldy”https://adjustmentstonormal.wordpress.com/2014/08/15/the-cake-is-old-and-moldy/ I referred to my uterus as a piece of “old and moldy” cake that needed to be discarded. I explained my journey to acceptance, finally understanding that my identity as a mother doesn’t change simply because some of my organs are removed.

I opened the lid on the cake pan, and silently took in the festive cake in all of its polka dotted radiance. I broke off a corner piece and savored a bite. I thought about my other friend, Stacey, who hand wrote me a heart note with the reference of Jeremiah 29:11 as a reminder.

The verse says, “For I know the plans I have for you”, declares the LORD, “plans to prosper you, not to harm you, plans to give you hope and a future”.

I grinned my biggest blue teeth grin and thought that a confetti cake was the perfect way to celebrate this newest chapter of my life… Motherhood sans uterus.

Survivor Story – Heather Von St. James

"Cloudbreak" (c)Gracie K. Harold 2014

“Cloudbreak” (c)Gracie K. Harold 2014

Cancer.

It’s one word that conjures a myriad of emotions within me.

Grief and sadness for the dearly loved ones who I’ve said an incredibly early “Goodbye” to,

fresh tears for those I miss deeply,

and tears of gratefulness for the ones who

have survived and conquered Cancer.

I will never claim to understand death, suffering and pain.

I will instead joyously celebrate the stories of survival.

Please know that in some small way, I hope to honor the memories and the lives of those dear ones who are missed,

even as I proclaim the stories of Survivors.

***Please note that some of the links that I provide are sponsored by certain legal firms.  
Gracie K. Harold and her blog “Adjustments to Normal” as well as her book, 
“Across the Street From Normal” are in NO way, shape or form, endorsing ANY legal firm mentioned, implied, or otherwise noted.***

Heather Von St. James

Heather was a new mother when she received the news that she had Mesothelioma, a Cancer that is caused by asbestos exposure.

I cannot fathom what life was like in those moments when life tilted unpredictably for Heather and her husband Cameron, as well as their newborn daughter.

Cameron recently contacted me to request that I share Heather’s story today, on Mesothelioma Awareness Day.

Before agreeing, I did some research into Heather’s story and the cancer that she has overcome.

I am amazed at the brilliant skill shown by her surgeon, Dr. David Sugarbaker, as well as the persistent faith and courage that Heather, Cameron and even their young daughter continue to demonstrate.

The link to their story is here.

Thank you for taking time to read and to share so we can spread awareness as we honor those we miss as well as those who live on!

Love,

Gracie

Pieces

Sometimes, glass has to be broken in order to make something new.

Occasionally, pieces are left looking jagged and rough.

Unexpectedly, though, the ARTIST solders and places each piece together in a complementary unity.

A new beauty emerges.

The lines aren’t always scars.

Sometimes, the lines are reminders that the ARTIST was here.

Intentionally Pieced Together (c)Gracie K. Harold 2014

Intentionally Pieced Together (c)Gracie K. Harold 2014

Today, may your eyes be opened to see the artistry.

Be loved.

Be. loved.

Rain Delays

"Rain" (c)Gracie K. Harold 2014

“Rain” (c)Gracie K. Harold 2014

“Rain Delays”

Rain.

Torrential downpour.

Overpowering.

 Soaking.

Drenching…and revealing that which was previously hidden.

Exposure.

A deluge.

My fear of being washed away and lost breaks open, and is replaced by comfort, safety, warmth and the realization of truth.

I am loved.

I am safe.

The truth permeates my soul.

Rain delays movement and slows me down so that I can grow.

Rain delays nourish my parched soul

and I heal.

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Sesame and Sunday

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Our son, Rex, is anaphylaxic to sesame.  In the past, he has needed an Epi-pen® Jr. injection after accidentally eating some sesame chips.  This past weekend, James and I cooked hot dogs and hamburgers for the kids.  We have bought the same hot dog buns for months.  This weekend, we were in a frenzy due to a busy schedule and the fact that I am still tired and not quite up to 100% health yet.

We ate hot dogs Saturday night, and again Sunday afternoon.  Immediately after eating, we drove Rex and Ruby out to their grandparents’ home for a sleepover.  We noticed upon arrival that Rex had quite a few red marks on his neck.  He commented that they were bug bites from the bonfire we were at the night before.

We dismissed it, since he was exuberant and giddy.  We made plans for the two kids to stay in with an extra cell phone while grandma and grandpa went out for a bit, just around the corner.  We hugged our goodbyes and left for home.  20 minutes later, James picked up the hot dog bun bag and yelled, “Gracie! The buns list sesame as an ingredient now!”  I bolted over to him to inspect the bag as David said, “Mom!  Maybe those weren’t bug bites!”

I picked up my phone and frantically dialed the number for the cell phone that the kids had.  No answer…three times.  I texted. No response.

I texted my mom, and told her to call immediately.

She left her husband’s side to call me, and took off for home without even telling him what happened.

I asked if we needed to call an ambulance or not.  She said she would call back when she saw Rex.

Meanwhile, I called the allergist, who called the Emergency Room at the hospital.

Mom called back and spoke to James while I spoke to the Dr.

After I hung up, James and I hopped in our vehicle and took off for the hospital.  We packed caffeine as we assumed that we would be there for a long time.

We were at the hospital first, and I preregistered Rex before pacing and watching for the car that had my son in it.

They arrived, I rushed out and swooped him into a wheelchair, and marveled at the way he was giggling.

We pulled up to registration, and the nurse asked how many hot dog buns Rex had eaten.

I leaned over and asked him.

“None, mommy!  I didn’t eat any hot dogs. I had hamburgers!  A little voice in my head told me NOT to eat any hot dogs, so I didn’t.  Not yesterday either!”

We stared incredulously.  Thank God that this little man listened to that voice of warning!

The doctor checked him over just to be certain that the secondhand exposure hadn’t triggered his asthma, and he passed with flying colors.

James started laughing first, then Ruby snickered, my mom chortled, Rex giggled, and I shook my head as I laughed at our failure to ask the most obvious of questions.

The doctor assured us that we did the right thing, and that we could rest assured knowing that we knew what to do if there had been an actual reaction.  He did join us in snickering over the craziness of our Sunday.

We hugged our two kids goodbye again, and mom said, “Oh, shoot!  I never told my husband where I was going or that I was leaving!”

I quickly sent a text message of explanation so that once he walked home, he could retrieve the phone which he had left for the kids.

James shook his head and snickered every half hour for the rest of the night, as we sat up watching movies (we both had downed more than our share of caffeine!)

So we forgot to ask a crucial question, and made an assumption, and drove in two separate frenzies to the hospital…but at the end of the day, we laughed.

We laughed because Rex is alive.  We laughed because we care so much about him that we would not hesitate to do it all again to keep him safe.  We laughed because perfection is not a prerequisite for parenting.  We laughed because we were together, flaws and all…and we.are.loved.

‘Roids, unfiltered.

Four rounds of antibiotics later.

My body had enough.

Hives emerged and multiplied  like “Gremlins” that got wet.

I saw my Dr. and she ordered a *mild burst of steroids.

I am going to the bathroom every 2 hours at the most.

I am drinking (8) 16 oz. water bottles filled plus coffee plus juice plus smoothies plus Vitamin Water in a day…

and I am still thirsty.

I am eating every 90 minutes, and desperately trying to mix in “healthy fillers” with the chocolate that

I.am.craving.

Last night, I laid in bed for 1 very long  hour, too tired to move yet unable to sleep.

I fell asleep for 2 hours, would wake to use the bathroom,

and would lie awake for the next hour.

This continued ALL NIGHT LONG IN A 

MIND-NUMBING PATTERN:

LAY DOWN-TRY TO CALM YOUR BRAIN – FALL ASLEEP- WAKE UP-PEE-REPEAT.

I woke with James’ alarm in the wee small hours this morning, and despite exhaustion, could not fall back asleep.

I did manage to spill water on the bed, the power cords, and myself when I gagged on my multivitamin.

Through it all, though, we still have our humor.

I am grateful that my family understands that I am really trying to have and demonstrate self-control through my clenched teeth

and tight lips, really I am.

My skin is crawling.

It feels like I am trying to molt; as if my skin needs to crumble off of me…like this:

molted creepy steroid skin (c)Gracie K. Harold 2014

molted creepy steroid skin (c)Gracie K. Harold 2014

I am tired.

I will probably cry at the drop of a hat, and then maybe I’ll laugh about crying.

I am healing, and eating…and trying to rest.

On the bright side, maybe, just maybe, I will lose some extra water weight…

since I am spending the majority of the day and night in the bathroom.

😉

 

Unfiltered Truth (c)Gracie K. Harold 2014

Unfiltered Truth (c)Gracie K. Harold 2014

Fixated

Fixated (c)Gracie K. Harold 2014

Fixated (c)Gracie K. Harold 2014

Guess what’s in this photo!  What do you think it is?

Seriously, indulge me.  =)

I discovered this image a while back when I was zooming in on a photograph that I had taken.  I remembered a workshop that I attended one year during the Diversity Seminar while at Taylor.  We watched a video clip and had to guess what was happening.  We were all surprised when the answer was revealed, as it demonstrated that our assumptions were not correct.

Grief can reemphasize our existing assumptions.  It can fixate us on our loss, on our own pain, and eventually cause us to push away the ones that we love.

It’s not a purposeful isolation, but it happens.

This week was hard.  Terribly hard.  I was processing so much, so many things.  I retreated into myself to sort things out.  I caught myself, though, only having “good moments” with the kids when James was home after work.  Granted, I was tired, and ill, and trying to figure things out…but I inadvertently closed down emotionally.

I snapped out of it yesterday, when God mercifully reminded me that they.are.still.here.  I am NOT minimizing my losses or my grief.  I am simply saying that death is an unfortunate part of life.  It sucks, it hurts to say goodbye, it hurts to be apart, but it happens.

If I allow myself to only think about what I’ve lost, or who I’ve said goodbye to; eventually I become fixated on what I’ve lost and I miss what I have right here in front of me.  I have people in my life who need my love.  I can be physically and mentally present here today for the people around me, whether or not they originated in my womb.

Grieving is a journey.  It takes time.  You have permission to grieve.  You also have permission to honor your loved ones by living life.  See the ones who are still here.  They love you, and are here to join you on the journey.  You are surrounded and engulfed by a bigger support than you realize.  Open your eyes and see the big picture.

Take a deep breath, pray for courage, and then step out in faith.

He’s already there.

Contact me if you would like, but know that I am praying today that your grief journey finds you enveloped by love, support, acceptance, and healing.

Love,

Gracie

P.S. Here’s the  Fixated Answer

“True confidence comes from realizing the view.”
– Tulku Urgyen