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.


  1. I'm so sorry it was such a hard appointment :( (and on a light-hearted note, I'm so impressed your text message to Brandon didn't contain all capital letters and harsher language as it would have if it had been from me, ha) Like you said though, I'm thankful for you and Clara that today is a new day!

  2. This brought back a flood of memories from my little sister, who has also had to be pinned down and restrained for similar exams. There's no way around it -- it feels like trauma and it's hard. Thankfully it's momentary.
    Usually getting earwax washed out hurts a bit more when the eardrum is infected, so I'm glad to hear that Clara's wasn't infected. And it's a good thing you took her in to deal with that strep!
    May the Lord give you physical and emotional strength to get you through these situations!

  3. I'm really sorry- I know that must have been hard on both of you! I was sweating and panicking a little just reading about it :(

  4. I hope Clara is feeling better now. I just wanted to share that I read your book recently and really enjoyed it. Thank you for sharing your hope and wisdom in the book and here. Your writing is encouraging to me as a fellow special needs mom who is also weaving hope and grief and discovery together in my spiritual walk.

    1. Thank you so much. I am so glad the book resonated with you!!

  5. Ugh I hated reading this! I am so sorry. While I can't relate to special needs, I will say that I thoroughly traumatized Nora when I had to stab her with the epi pen. A month later and she still brings it up and asks repeatedly "why did you hurt me and make me bleed mama??" Totally sucks.


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