Tag: severe autism

It Is Well With My Soul.

Posted on by Jessica Ronne

Over the past year I’ve witnessed the demise of many leaders; often pinnacles of faith who have fallen from grace, men and women who most assuredly began their careers with the noblest of intentions. Individuals who, through the passage of time, became enamored with self and blinded by fame & fortune; who lost perspective on their place within humanity because of a choice to turn from that still small voice.

I believe we each have the innate potential to fall far from grace; to perceive ourselves as better than we ought to. I know I do. Under different circumstances I could really embrace how special I think I am, hold on tightly to the perception that I’ve gotten this life thing figured out real good, lean into pride and her enticing offers & allow her to nibble away at my soul as she has with others who have climbed the ladder of success.

I think about all of this as I prepare to release a book and a documentary into the world.

Two creations that could potentially cast a pretty bright light on my life.

Perhaps.

I’m a first born, “me do it” Enneagram one who thrives on accomplishments and making a difference & these attributes are typically celebrated by society with lots of accolades and praise, & yes, this recognition is nice. I am human. It’s nice to be acknowledged for your achievements & even nicer still to have people perceive you as a good person; a person making positive strides in the steps of humanity; a respectful person with character. Of course it’s nice.

I’ve worked diligently & finished projects which might push me a little bit out of the shadows of anonymity & possibly into a world for which I am unprepared & yet –

I will continue to rise every morning
And diaper my 16 year old son
(which is as humility building as it gets some days)
And help him get dressed
And pour his juice into a sippy cup
And put socks upon his feet
And lace up his sneakers
And assist him to the car
And gently close the door but not until he says in his sweet sing song way –
“Bye! Have a good day!”
And I turn and walk away
With a smile on my face.
This is our routine
Me and my Luke
Every single day.

These monotonous actions serve as a reminder as they did with the apostle Paul – a prickly thorn that breathes humility into my swelling soul & deflates any pride that may try to sneak in; crushing it in an instant as my boy demands yet another round of –

“Paddy cake, paddy cake, bakers man, bake me a cake as fast as you can.”

And as his smile reaches for the stars, I lean into the understanding that he and I are created in the image of our Maker, one not better than the other, simply different with unique purposes & gifts, & the only attribute that makes us great is dutifully reacting in joyful obedience to the hard & holy tasks we’ve been called to accomplish.

Each staying faithful to the race we must run.

This uncomfortable road, this thorn of special needs & autism, this aching joy which serves as a gift – a gift that calls me to daily lay down my life & continuously keeps my head from ballooning & serves as a constant jab reminding me of who I am and who I am not by stripping away any pretenses. This gift which prepares a table before me in the presence of fame & fortune & pride; where Luke & I dine with the Shepherd feasting on humility & special needs & gulping down goblets of grace.

It is well with my soul.
It is well with Luke’s soul.
And that is enough.

Just keep livin

To My Son, I’m Sorry.

Posted on by Jessica Ronne

To my son with profound autism,

I’m sorry I didn’t try medication sooner.

I’m sorry that I was more concerned with side effects than possibilities.

I’m sorry you lived in an anxious mess of a mind for years because of my pride.

I’m sorry I assumed the worst and how it would affect you.

I’m sorry I hindered your abilities because of my inability to broaden my horizons.

I’m sorry I limited your communication when medication would have clarified your needs.

I’m sorry I restricted you from your siblings because the aggression, without meds, made you dangerous.

I’m sorry I sighed in resignation and helplessness over the thought of raising you forever when all you needed was a little help.

I’m sorry it took a global pandemic and a total shut down of the world as we knew it to set aside my pride & request something, anything, out of desperation.

I’m sorry for the years of progress I may have stolen from you because I was sure that medication would do more harm than good.

Son, I’m not suggesting that medication is always the answer or even your long term solution, but it has enabled your best life right here, right now & for that, I’m thankful.

From this day forward, I vow to be more open minded. I vow to continue learning & growing & expanding my ability to consider other possibilities & I vow to assume the best. I vow to never stop fighting for you.

I love you Lucas Aaron.

Mom ❤️

This was a difficult post to write & even more difficult to put out into the world, but I know there is a caregiver somewhere who needs to read these words. They need permission to look at options.

The Side Effects of Being a Caregiver – Insomnia.

Posted on by Jessica Ronne

Here’s the second post in a series about the numerous side effects of being a caregiver. I gave a short list of many of the side effects I’ve experienced in my journey in last week’s post where I highlighted a recent struggle with hair loss, and the ways I’ve combated this ridiculousness.

The next most common side effect I’ve experienced related to being a caregiver has been insomnia. Part of this is absolutely related to caring for 8 children, and part of it, I’m sure, has to do with this lovely stage of life I’m currently in called peri-menopause.

Now given, I am the most OCD sleeper on the planet, and I hate this facet of my personality. I am way too in my head and really struggle to sleep outside of my normal environment or routine.  I am extremely envious of people who can sleep anywhere and everywhere but this is not my reality.

A few things that I must do before going to bed.

First, good nights and hugs for the kids, read Annabelle a story, and give Luke his meds. Draw the room darkening shades and curtains. I require pitch black  in order to sleep. Then I do 15-20 minutes of restorative yoga, take a warm bath with Epsom salts (I like these)

and take one willow bark – a natural Advil alternative

 

 

 

and one  L-theanine which is good for relaxation and gut health.

 

 

After my bath, I take two of these magnesium supplements which I have found to be hands down the most helpful in my journey towards natural sleep preparation. In fact, I ran out of this particular brand for about two weeks, and I used another brand which I had on hand, and I kid you not, I did not sleep very well.  This brand is AMAZING.

 

I really, really try to avoid Advil or Benedryl because I know they’re not great for me or my liver.

And, at 9:30, it’s time for  yogi tea mixed with Reishi mushroom – both which have a calming effect on my racing mind and take approximately 30 minutes to kick in and then it’s lights out at 10:00 p.m.!

I’d say the tea and mushroom put me to sleep quickly and the triple calm magnesium keeps me asleep (for the most part) and last but not least, I rub tiger balm on my hips which have been aching since giving birth to my baby 5 years ago!  Get some here. 

 

 

That’s it. My extremely OCD sleep routine which is admittedly ridiculous, but I can’t function without sleep – especially as a caregiver to 8 children. Yes, I’ve tried Valerian and Melatonin. Both give me weird dreams. Maybe this routine will help someone else in need of a solid night of sleep.

Just keep livin!

 

 

(This post does contain affiliate links which I may receive compensation for).