Wednesday, March 15, 2017

When Special Needs Stinks

Special needs parenting is life-giving in so many ways. And I don't just say that because it's the right thing to say. I say it because I truly feel it deep in my bones.

But sometimes special needs parenting just plain stinks.

You see, I am typically a glass is half full kind-of-girl when it comes to special needs, disabilities, and the daily requirements of Clara's care.  Her life looks different, clearly, and her ability to function in certain ways differs drastically from that of her typical sister and peers.

In the everyday I am able to see past all the differences and focus on the beauty that Clara's uniqueness brings to our family.

Her world opens my eyes to what truly matters.

Love, joy, and peace. That about sums it up for Clara. And in turn, these qualities help refocus my heart when I am swayed by all the extra hard things that naturally accompany this journey.

Except yesterday.

Sometimes special needs parenting just plain stinks.

Clara was sent home Monday due to a low fever and irritability. I took her to the pediatrician yesterday to check for an ear infection (my guess) as she had been holding her ears on and off for a few days. This isn't uncommon behavior for her, but typically she only does this when something is too loud or a specific noise is causing her stress.

When the doctor tried to look in her ears, she couldn't see her eardrum. Because there was just too much wax. Which meant in order to fully see her eardrum to check for an infection, we had to first flush her ear out with a saline solution.

This would not be pleasant for any child. Ahem. But add in a language barrier and compromised intellectual ability and man, the unpleasant meter just went up 100 notches.

It took three of us to make it happen.

I had to physically lay by entire body over hers, gripping underneath the table for support. All the while she was crying, screaming, looking deep into my eyes.

All she understood was pain and her mom wasn't making it stop.

Her mom was contributing to the pain.

I texted Brandon the following . . .

Not having fun at the Dr. Probably the hardest moment yet having to hold her down. Had to flush her ear with a saline solution to thus flush the wax out to be able to see eardrum. Also doing a strep test. Not going to lie, this totally stinks.

I have taken Clara to countless doctor appointments, therapy appointments, and the like. And some are really hard. I typically can take it in stride, shake it off, and move on as we drive away. So when Brandon gets a text like this from me, he knows it was a doozie. A worse than normal experience for our little girl.

Body shaking and continuing a quiver-like cry as she grasp for my shoulders, unwilling to let go, it took Clara a solid five minutes to calm down, to settle enough where I could feasibly dress her.

Turns out she doesn't have an ear infection. She has strep.

I am really glad we went through the trouble to flush her ear, but I guess the silver lining here is that her right ear, for now, is wax free?

. . .

Psalm 139 verses 7-12 (MSG) . . .

Is there anyplace I can go to avoid your Spirit? 
to be out of your sight?
If I climb to the sky, you're there!
If I go underground, you're there!
If I flew on morning's wings
to the far western horizon, 
You'd find me in a minute - 
you're already there waiting!
Then I said to myself, "Oh, he even sees me in the dark!
At night I'm immersed in the light!
It's a fact: darkness isn't dark to you;
night and day, darkness and light, they're all the same to you.

So . . .

Even at the doctor's office, you're there!
Even when I feel overwhelmed at the challenges facing my girl, you're there!
Any situation or any circumstance, you're there!
When these mothering moments leave me tired and breathless, you're there!
When the guilt overwhelms, you're there!
Even when I want to throw in the towel and declare you picked the wrong person for this special needs thing, you're there!
When I don't feel the hope, you're there!
When this journey stinks, you're there!
You never change. You're always there.

. . .

She fell asleep approximately two minutes after getting in the car. All that fighting and crying sure wears a girl out.

Clara took a 2.5 hour nap yesterday and little sister enjoyed loving on her and showing some comfort.

This journey is beautiful, but sometimes it stinks.

I'm sure you all can relate in your own way, no?

Thankful for a new day and the promises tucked inside Psalm 139.

Let's focus there today.

Tuesday, March 7, 2017

Fix my eyes to focus my heart

It's so easy to do. I get caught up in the trap time and time again. Sometimes, although I hate to admit it, multiple times a day I find my eyes wandering to the right or to the left.

I ask the Lord to help steady my gaze but then the second my two feet step outside my walls my eyes start moving rapid-pace, everywhere but up.


Comparing my life to my peers, family members, or even complete strangers.

Comparing my road to the roads of others.

Comparing the hurt I've felt to the seemingly blissful blessings of others.

It's like a massive game of tug-of-war and I must be in constant communication with Jesus to keep me pulling in the winning direction.

Even still, when hardships and sadness creep in, it's much harder to keep my eyes in check.

Our oldest daughter should be starting Kindergarten in the fall, yet this is not her reality. So my eyes bounce from family to family whose child, the same age, is functioning appropriately and will be soon embarking on this adventure.

April will mark two years since I birthed and buried a son and while I fully believe in God's promises and faithfulness to my family, sadness still hits my heart. So my eyes bounce from family to family whose child is living here on Earth first, not the other way around.

And then God gently reminds me the secret to it all. I must remember to fix my eyes to focus my heart.

Why are you down in the dumps, dear soul?
Why are you crying out the blues?
Fix my eyes on God - 
soon I'll be praising again.
He puts a smile on my face. He's my God.
When my soul is in the dumps, I rehearse everything I know of you.
Psalm 42:5-6, The Message

When my eyes are steady, I worship well.

When my eyes are steady, I recall, more easily, all the ways God has blessed me and my people.

When my eyes are steady, joy and hope abounds and my attitude transforms.

When my eyes are steady, I remember that even though others might appear to have an easier journey, God is continually working for my best, and I should never take that lightly.

When my eyes are steady and thus my heart focused, I see the most beautiful blooms that I would otherwise miss all-together.

Chance's tree, in full bloom. Love this view out our back window. 

Thursday, March 2, 2017

It's Time To Talk About It (National Eating Disorder Awareness Week 2017)

National Eating Disorder Awareness Week kicked off this past Sunday. From the NEDA website. . .

Spearheaded by the National Eating Disorders Association, the goal of National Eating Disorders Awareness (#NEDAwareness) Week is to shine the spotlight on eating disorders and put life-saving resources into the hands of those in need. This year’s theme is It’s Time to Talk About It and we’re encouraging everyone to get screened. It’s time we take eating disorders seriously as public health concerns. It’s time we bust the myths and get the facts. It’s time to celebrate recovery and the heroes who make it possible. It’s time to take action and fight for change. It’s time to shatter the stigma and increase access to care. It’s Time to Talk About It!

I find it absoultely mind-blowing that I struggled through anorexia as an adult, for several years, and by the grace of a powerful God, have made it to the other side.

Mind-blowing because I can't imagine living in such bondage now.

Mind-blowing because I can't imagine feeling so out of control now, that food (or lack thereof) would become the source of security and safety.

Mind-blowing because I can't imagine going back to the old me. The me that let the scale become her God. The me that charted every last calorie that slipped past her lips. The me whose mind was continually consumed with thoughts of thinness, weight, food, and the like. The me that manipulated her body down to a meager 89 pounds. The me that became obsessed with the worship of self.

Six chapters of my book are dedicated to this very topic. Because I believe it is a message worth sharing. Because if my story can spare just one person from choosing body mutilation over freedom, it was worth it.

If you or someone you know could be walking through an eating disorder, please reach out. Tell someone. Don't sit alone in the struggle. Contact me and I will find a way to get the first six chapters of my book into your hands.

You can also access a free eating disorder screening here.

Other resources:
National Eating Disorders Association: Feeding hope
Eating Disorder HOPE
Hope, Help, and Healing for Eating Disorders: A Whole Person Approach to Treatment of Anorexia, Bulimia, and Disordered Eating by Gregory L. Jantz, PhD
Gaining: The Truth About Life After Eating Disorders by Aimee Liu

When Eating Disorders Consume Your Family 

It's time to talk about it.

© A Joy Renewed. Made with love by The Dutch Lady Designs.