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.

When You're Tired of Circling "No"

At the beginning of the year we received a questionnaire from the new insurance policy that helps cover the cost of Clara's daily ABA therapy/school. 

Oh man, here we go. 

I touched on it briefly in my book. About how I've come to expect these times and questionnaires and list of run downs be it from the pediatrician, insurance, or some other party that needs information on her development to assess where she is at or if she still qualifies for x, y, or z service. 

And while I always feel strong and prepared going into such a task, still, four years into this whole special needs thing, I somehow am still caught off guard.

The sting of circling "no" or "never" for the hundredth time just saddens this mama's heart. Because I want to much more for my little girl. 

I desperately want the answer to be "yes" or "usually."

I desperately wish she would get to a place where forms like the ones below are not our normal. 

But we keep filling them out and trusting and praying that one day, our pen will circle a different answer. And maybe it will. Or maybe it won't. This is where faith meets my everyday.

We press on in hope because the Word tells us that hope does not disappoint us. God promises that when my mama heart grows tired and weary, when I feel that I am stumbling around in this world of special needs not having a clue what I'm doing, that hope is what renews my strength, day after day after long day (Isaiah 40:30-31).

And we pray without ceasing for our little girl because God also tells us that prayer is powerful and effective and that He always listens and takes note of the words we lift to Him (1 Peter 3:12).

I don't know what you're facing today. It might not be anything related to child development or milestone markers, but I'm sure there is something that stings every now and then. A "no" or "not right now" that you really wish would just be a resounding "YES!" 

Oh, how I would love to wave a magic wand and make it all better for you, your circumstance. I really wish I could.  

However, I am slowly learning that sometimes the "no's" are a gift. It's  in the "no's" that I slow down my pace, refocus my eyes, and step back into trust with my Savior. I step out of the allusive drivers seat that I so often try to climb into and, once again, take my proper place, behind my God.

"No's" can be a gift because I learn that I'm really not in control after all. Imagine that.

So I will keep filling out the forms, embracing the sting, and all the while pushing my girl to reach her full potential. I will keep petitioning my God to mature Clara's development because nothing is too hard for Him (Jeremiah 32:27). And I will remember that it's in the "no's" where I tend to feel the closest to the Maker of Heaven himself.

Louder Than Words

I've been battling a bad sinus infection for the past week. While I am feeling better overall, thanks to antibiotics and steroids and decongestants, I'm now dealing with some lingering ear issues that have me feeling a bit crazy, down, and thankful for fluid-less ears that I so often take for granted. 

'Tis the season for sickness! 

We stayed home from church Sunday (Camille was also on the mend from pink eye) and I spent most of the day lounging in bed. The upside is I finally finished this book and got about halfway through this one. If you're looking for some new reads for the New Year, I highly recommend both. 

One thing I'm learning about parenting a child with special needs is that even though some kids aren't able to talk, they are still highly in-tune to the overall tone of the home, the atmosphere. 

Clara crawled up into bed with me and snuggled up for a few solid hours. It was the best. I would rearrange from time to time to get comfortable, and she would immediately pull me closer and bury herself in my arm a bit more. She knows when momma isn't her best.

It's as if the morning cuddles she showered on me was her way of saying "I love you. I'm here. I'm sorry you're sick, mommy. I hope you feel better."

Clara is teaching me that sometimes actions speak louder than words.

That sometimes it's not what we are able to say, but what we are able to do, in love, that makes the biggest impression.

That sometimes we need to stop talking about what were going to do for someone else and just take that first step and do it.

That sometimes a smile or a hug or the giving of time, the purposeful choice to clear a schedule and sit together with a hurting soul in the silence, is all someone needs to feel cared for and respected and recognized. Loved.

And while I will continue to pray that Clara learns to use her voice in a typical way, I will continue to pray she never stops teaching me such valuable lessons. 

Because an action given freely in love is the best medicine.

(That, and 60 mg of daily steroids.)

Dear Clara, (a brag letter to my girl at age 4.5 years)

Dear Clara,

In the last few weeks we have seen a burst in your development. It is the coolest thing to watch and we are so proud of you. I have teared up multiple times in the last month (I know what you're thinking, shocker, mom, because you cry at everything.)

To some these milestones might appear insignificant, and definitely not noteworthy, but for you, a child whose brain requires a higher demand of training and consistency to grasp a skill or concept, well, you better believe we have pen and paper in hand, sweet one.

First up?

You are showing courage and bravery and taking new risks. We visited a local farm a few weekends ago, and while you put up a fight to get on the pony, once you relaxed you rode like a champ. I knew you would love it if I could just calm you and hug you tight enough until the ponies started to move. Deep pressure is so important in calming you and helping you feel safe. It is a good thing I had sunglasses on, Clara, because I would have embarrassed you had I not. Eyes were watering as I walked you around and around and around. As your mom, I don't expect you to enjoy typical kid activities and I am prepared for this reality in the everyday aspects of life, but when you do? Cue the waterworks.

You are starting to show affection to family members in new and adorable ways. A few weeks ago we were driving home from your cousin's birthday party in Galveston. Camille was zonked and you leaned over to grab her foot and held on to that foot for a solid fifteen minutes. Melt my heart, Clara. It's as if this was your way of telling her, "I love you, sister, and I want to be near you."

Another thing that gets me? When we are driving and I wave to you in the rearview mirror and you point to my hand. You better believe I will always twist and turn in whatever way is needed to reach behind my seat and hold your hand. I have dreamed about this day and I will savor every single second of hand holding.

Not only are you showing bravery and affection, you are working so hard to meet your school goals. We spent time at your school last week, as you know, and I was impressed with how much focus and attention you were giving to using a spoon, a goal that has been on your treatment plan for a long, long time.

And I love watching you interact with Camille. Camille loves helping you use your PECS, and she is ready and willing to help you at home, too. She loves you to the moon and back, and so do I.

Your PECS is starting to translate over functionally at home, which is the absolute best! You brought me a picture of a banana last week, the first time you have EVER pulled a food card, and I about lost my mind! And today? Your pretzel card. I love that you now have a system, a voice, to help me know what you need or want.

Though some might only see your differences and feel a sense of pity, please don't for a second think any less of yourself. Their loss. You are a beautiful creation and what these same people don't see is the behind the scenes of our world.

The laughter. The beauty. The immense joy that radiates from your face. This is the good stuff, Clara. The stuff that truly matters. Worth is not measured by your ability to learn your A-B-C's or 1-2-3's or go to a typical school or attend a typical college or hold a typical job. There are many who achieve all of that but lack love and happiness and fruits of the spirit. I'll take joy over achievement any day, sweet girl.

Clara, you are one of God's best gifts to us. Keep being you. Keep shining your light. The world is so much brighter with you in it.

Love,

Mommy 

Annual CT Vacation 2016. . . Part 2

Click here for Part 1 of our annual trip to New England.

 And picking back up where we left off . . . Playing/snuggling at home. . .

Give Clara a piano and she is content for hours . . .

On our last final day, we spent time walking around Collinsville and ate lunch at our all time favorite local spot, La Salle's Market & Deli. If you are ever in this area, you must stop at La Salle's!

After our time in Collinsville, we stopped by a park to play . . . 

Isn't this house just the cutest? Had to stop and snap a picture . . . 

And that's a wrap. CT, we love you! See you next October . . .