Stopping in with a post today about something near and dear to our hearts. Over the last five years of therapeutic interventions, animals have been a significant part of our journey. Most recently, we were introduced to Aimee’s Farm Sanctuary. Aimee’s compassion, grace and generosity blew us away. We were allowed two full hours of interaction with special needs animals as an individual family coping with ongoing trauma from special needs: anxiety, OCD, and sensory challenges at no cost.
Families like ours spend a significant amount of personal resources to see our kids thrive. Honestly, we’ve never received any sort of love and attention therapeutically without a price tag attached!
Aimee’s Farm Sanctuary is in financial duress due to a change in their lot status. A loose rental agreement for the lot has been changed to a buyout due to developers – investors – wanting to build.
This feels like the movies we watch with our kids.
And we so deeply desire Aimee, the animals, and our community to see a happy ending!
Our visit to Aimee’s wasn’t only healing for Bliss, dear ones, it was healing for me. I walked away from that space with tangible proof that our God is a good God. Still. And there are beautiful, incredible humans that will take the time and energy to love our children where they are at. Aimee is one of those people.
P.S. As I went to write this today, I felt as though the Lord placed his hands on me to say “be still and know that I am God.” We know that we are not of this world, but every little bit we can do to bring love and light to those we walk alongside is so, so important. This life matters, dear ones. We matter.
I’m sitting here in the depths of real, raw motherhood today. My precious Bliss recovering from a virus by my side. Recovering. I should mention… the virus itself is gone. But the side effects – the virus recovery – has more to do with her mental health (and mine) than her physical well being. Because physically, she’s pretty well. But as I’ve shared before, it takes a few days or so for her to fully be in her body again. To regain the awareness necessary to cope with our world. Sensory-wise, yes, sensory processing disorder is not “gone” – she’s just learned or is learning to manage it. And so, here we are.
Here. We. Are.
Her and I. Working to thrive.
Missing my favorite meeting of the week. The meeting that brings me into a reality I didn’t know to be true. That there are many moms like me. And that there are many children doing battle like my Wild girl.
So today, I want to ask you a question. I want to ask you what if we do fit in? What if we are not so different from one another?
Brittany, one of the mother’s in this gorgeous shot from NVS photography speaks about this exact idea here. It’s a beautiful read about the journey of, into, and beyond living with a postpartum mood disorder.
As I continue to share our journey – often specific to mental health… hers and mine – I am in awe of what the Lord is doing here. How He powerfully places humans in our life to point back to His plan for us. That we need one another here so, so much.
Our story – Now & Then
And as I listen to this morning’s replay of Bishop Jakes at Elevation Church I wonder.
I just wrote about the roar.
A blog post for a women’s collective.
A blog post about the postpartum rage I experienced a month after she weaned from my breast.
It was loud.
Hormones bumping and pumping.
Distress. A wildfire in my head.
Physical pain returning after 18 months of ease from chronic disease.
So I’m sitting here this morning listening to preachers with my sweet Bliss. She’s taking the day off from co-op, as her coping skills post virus are non-existent right now.
So she writes in her journal.
She processes the roars.
And I write here with you to process them too.
And I’m reminded of the roars then by the roars now.
And I’m reminded these roars are here to STOP what beautiful things our Papa is doing here.
The enemy does not like these chains being broken.
He loves the roar.
But, dear ones, he is unclear on how mighty she & I are. Mighty in Christ. Resilient beyond resilient. And ready for the good fight. For we know who goes before us.
KNOW who goes before you, lovely souls. KNOW Him. And you too will be mighty.
And since I have come out of hiding – hiding from the reality that (maybe) I am not super woman – I have come to believe many, many other souls know this too:
We must rally around all the moms all the time.
You and I probably have a bias toward one way of life or another, we are human – yes! Yet, if we can’t stand with others who are raising precious arrows, how do we grow in our ability to LOVE BIG? How do we impact the next generation if we can’t find it in ourselves to love on the ones raising them? How do we grow in our walk with Christ unless we dig into perfecting the ultimate craft: our God-given ability to love one another as he/she/they is or are?
We must rally around all the moms all the time.
Let me jump off my soapbox for a hot minute and share a little story or two with you.
First I’ll share hers… and then I’ll share mine.
I came across this story headline in December, right after it happened. The title stated,
“She left her special-needs son at a hospital, police say. Now moms are rallying behind her.”
And before I ever read one bit of the article, I wept. I wept, because her story resonated with my special needs mama heart. Oh, how I have needed a break! Do I trust God that He’s gifted me this child with purpose and intent? Absolutely. I know He is good. I know His plans are good. But I do not know His plans to expose His own greatness.
Perhaps her story is just this…
We give up and God gives grace.
We must rally around all the moms all the time…
I too have experienced moments in which I have needed a long, long break, dear ones. I have been in a darkness similar to Diana Elliot’s darkness (hello, 2015-2017!). Not the same – of course it’s not the same! Every experience is different. But darkness. I know it. I know it well.
Back to her story…
So, Diana left her special needs child at the hospital where he was safe. And do you know what happened?
Instead of passing judgement, MOTHERS RALLIED AROUND HER.
The article states, “Diana gasped” when she turned around in court and saw other single moms rallying to support her.
Why did Diana gasp?
Because most special needs moms are used to inadvertent community neglect.
We must rally around all the moms all the time.
I’ll take this time to do what I have promised this year, and tell you about the beginning of Bliss’s journey…
Wrapped up in the joys of my first healthy baby, I did not notice how our Bliss was different at first… I noticed how she cried on every single car ride. I noticed her extreme-extreme-extreme (!!) startle reflex. I noticed how she couldn’t sleep anywhere except on my chest. And I noticed how she was asked to leave part-time daycare… twice…
The beginning of it all. This was taken around the time our Bliss began her therapy for sensory processing disorder and OCD (she was not diagnosed yet) in August 2015. The same month this photo was taken. The same month she left a home daycare setting for the second time…
By 2015, while I believe I may have had many a great-mom moment… I was also recognizing some epic hardness. Conflicted spaces lacking acceptance or joy. I lacked joy often. And though I didn’t know it yet, I was already experiencing life as a special needs parent… One such moment (day) in the life looked like this:
My husband was gone for 15 days.
It was spring. And while he traveled first for business and then a family emergency, I cracked. By cracked, dear ones, I mean I really cracked.
Let me be clear that I wasn’t heartless; I was exhausted. Scott was exactly where he needed to be (well, at least the second ER-related trip). But oh my goodness, how I needed him. How I needed someone. We lived (live) in a state with no family… and at the time, I didn’t have any friends here either.
So it was after about 10 days with no breaks that I cracked. A radical shift took place within… a shift from ongoing anxiety to a rage within my belly that I had never known.
With the ferocity of a riptide my mental health plummeted. I went from treading just above water to being submerged beneath it. I was drowning. Drowning. The constant touch. The nonexistent sleep. The car rides complemented by constant crying. The grocery trips full of tears and meltdowns, too. The difficulty even leaving the house. The interruptions of every thought and every activity. The need of this child. The mass destruction that followed my sweet girl from dawn to dusk… I was drowning.
On the day that my mind sunk rapidly beneath the waters surface, Bliss wasn’t even two yet. Yet, she had scaled a brand-new gift for our son leaving it in complete shambles. Every bit of it was torn apart. A gift that was about ten times her size, none-the-less. A fabulous basketball game – the top hovering just inches below our 9-foot ceiling. She scaled it. Did I mention the not-even-two-years-old part? I think I did.
On that day my Roars came out. It was the first time I ever heard them… the deepest, most painful, guttural yells. The kind that make your throat sore. If you have not experienced those yells, oh how I envy you! I really do.
It was those Roars that landed me in recovery for my mental health later that year. I needed help.
I got it and I recovered, by the way. I did. But I am still a special needs parent. A special needs parent who has had many a day when I have questioned life. How could I be in charge of this wee one? How could I possibly help this child cope with life for just one more minute. There have been doors knocked straight through by her rage (part of living with a child with a severe anxiety disorder). I have been attacked while driving. I have had a busted nose and bruised up wrists. I have had a child whisper in my ear 50+ times in one day some of the most awful thoughts I’ve ever heard. Ones that scared her. Ones that scared me.
We must rally around all the moms all the time.
There are many of us walking on the wild side, friends.
We must rally around all the moms all the time.
Today, I have entered a space in life that is utterly complex. I serve moms. I walk alongside moms. I am a mom. And I have seen, heard, held space for JUST SO MUCH. So, while Diana’s story and mine differ because I haven’t dropped my gorgeous child off at a hospital for a break, her story resonates with me. It might just resonate with you, too. This dynamic is hard, hard, hard. And we need one another.
We need one another, and we MUST perfect our God-given craft. For loving one another is the only thing that makes sense in circumstances like these.
Do you agree?
I would love to hear.
Cheering you and your personal wildness on always.
A note about this post:
The story I share above about Bliss and I in 2015 was just the beginning of our walk with sensory processing disorder and OCD. It’s been five long years since the day that I was sucked under… and five long years of learning how to love WELL right here. I can promise you this, without a strong foundation of faith… without knowing God’s love for me… I would not be the often exemplary example of love and acceptance that I am in our home and community today. I truly believe that it is only when we know love can we hand it out. How do you get to know love? Get around good people. Online. (That’s where I started because we couldn’t leave the house for a long while as Bliss’s challenges progressed!) In person. At your church. I promise, incredible humans are out there. And you can find them.
Have you ever wondered what it might be like to feel absolutely smitten with motherhood?
The busyness here has led my heart astray again and again.
Which is what brought me to writing about what happens when the RUSH is over. Do we give ourselves room for release, dear one? We can. I promise, we can.
You can read my article here, and leave me a comment below on how you give yourself space to avoid burnout.
For me, it can be as simple as a walk alone – really alone – a few times a?week.
“Often, when the RUSH is over, my Wild one doesn’t recover like you or I.
And this last week, she had some important dental work done. I’ve been waiting for her to process it. Not on pins and needles like I used to, though. Just patiently waiting. Knowing at my core that for almost every gorgeous day we share, there will be heartache.
She did great on Dentist Day.
So, here we are… 45 minutes of heartache later.
Today, I would love to suggest that we all have a bit of Wild in us. When the RUSH is over, we don’t always respond well either.Especiallyas moms. It’s exhausting to be “on” in this season (in any season). Whether you identify as an introvert, extrovert, ambivert, or haven’t identified with any of these terms yet, it just doesn’t matter…
This side of Heaven, we won’t understand X, Y, or Z…
This side of Heaven I absolutely will not understand my daughter’s journey.
But, I’ve decided to skip the stress of it.
You can read the rest of my thoughts on the choice to skip stress this holiday season here, precious friends. This is your reminder that we “don’t got it” but God has got us. Always.
By the way, as I wrote this post, I kept hearing (and keep hearing) these timeless words from James:
Dear brothers and sisters, when troubles of any kind come your way, consider it an opportunity for great joy.
It takes lots of work to consider this space an opportunity for great joy, precious friends. But my Father knows what I need to remain close to Him… And sometimes, that just might mean letting a storm (or seventeen) get in “my” way.
Cheering on your journey! Always. Always.
Psst – here’s a picture of one of my opportunities for great joy in the midst of sometimes-trouble (aka this homeschool ride with an emotionally high-need wild child). Raising Bliss is a gift, in every season.
“While your light absolutely impacts hers, your child is (wait for it) NOT YOU. She is her own little or big person. She is responsible for her own light. Can you support her brilliance? Absolutely. Is it entirely up to you? Nope.”
We’ve had some beautiful homeschool moments these last few weeks, precious friends. We also had a day where I offered to drop my Wild one back off at school (ouch for both of us!).
It’s hard parenting a high-anxiety child with intrusive thoughts. Really hard. But God, in His infinite wisdom, has gifted me with the desire to become a better me. Let’s be honest… evolving as a parent… erasing the imprints that life has placed upon us – one’s that we absolutely do not want to pass on… it takes so much work!
I promise it’s worth it though. My mommy-meltdowns are increasingly rare. And when I ask for forgiveness, I believe it encourages my children to do the same. We are all growing into more empathetic, compassionate humans here. Humans with healthy boundaries.
It’s Sunday night – we are on an airplane ride home – and the most beautiful little girl on the planet is sprawled across my lap. Her feet brush our neighbor’s leg…
Fortunately, as my Father would have it, Lisa is a friend from church and she knows our Bliss. And by knows, I mean knows.
I am pleasantly surprised that Lisa is with us.
That she knows us is a gift.
Especially as over the last four years, I have become less and less me. The pre-motherhood me, that is. I speak a lot about this space – owning my identity in Christ because literally I’m dying to my own wants here. Daily. (And yes, sometimes that is excruciating!)
Yet, as I become less and less pre-motherhood me, I find myself more and more whole… and more and more known. And over the last four years, as my voice has become louder and louder around the adventure that is raising an emotionally-charged and socially-different and sensory-amazing little person… I find peace regularly. Pre-motherhood me had no peace. Post-motherhood me didn’t have any either for a while, too. Until I stepped into Christ-centered recovery to heal the hurts and habits that kept me from fully embracing this place and space of absolute wildness… But that’s a story for another day.
Back to the plane ride. Because of this – recovery and honesty… the increasing volume of my voice around special needs mothering and being known - I don’t need to explain anything to Lisa. She understands that Bliss has already (silently) decided that Lisa will be in the seat to her right; and in return for Lisa not sitting next to her older brother – older brother will get to sit with dad on this flight.
Somehow, I’m the last choice for comfort today.
Which is great, because I’m wearing a mask (the life of the immuno-interesting is complicated) and I’d really like to sleep.
We’re on the plane. It’s Sunday night. It is later than usual. And my babies have danced and hiked the weekend away.
Bliss is tired.
So we both sleep.
And, guess what? I don’t need to explain myself to sweet, amazing, precious Lisa. She’s not going to ask about the mask. She’s not going to question what Bliss needs in this moment. And I’m going to do my best to not happy-cry… because it is seriously exhausting to be in this life – often. Yet, it’s a lot less so when those around me know my Bliss. When they know me.
Which brings me to this morning. A few days post-plane. This morning is bible study, and I sit around a table of other women who do not know me or my Bliss – most of them are way more wise than I am in my short (and long) 34 years. And as we discussed relationships – our theme for the next few weeks – I raise my voice again. It is here that I recognize what I personally long for as we embark upon the God-gifted growth of women sharing time: I want to be known.
Actually, I need to be known.
And not just who I am… I don’t find myself particularly interesting even if life has thrown us a thing or 702… but in how I’m different.
How my life doesn’t always allow me to do the things I would like to do…
It’s a lot of work, this life.
I want my different to be known because I have found that few share first as I do. And when someone else’s different matches mine, we both feel stronger.
So at this table, I raise my voice to feel stronger. To collect a “me too” circle of different women. I need to share, dear one. I can’t thrive without it. And I’m willing to bet you need to share too.
It doesn’t need to be to an audience of ten-thousand or even ten. Start with one. Raise your voice to just one. I promise – as you do this over and over again… one person at a time – you will thrive.
We all want to be known.
We all want to thrive.
Now that I’ve poured out my heart and soul –
We had some wonderful wins in week two of homeschool and week five of Brain Balance. Bliss asked me if she was hurting my back as I carried her through mountain terrain (yes! Mama has feelings too, girlie! Cue me smiling so big. Empathy is gorgeous.) And also, Blissy encouraged me to “fashion” – she adores makeup and nail polish and fluffy skirts and everything that doesn’t really resonate with me. But I dove in. Bliss also started horseback riding again. She became a Junior Park Ranger at Muir Woods. And she’s hit a few new milestones in her growth plan with Brain Balance!
Note – If I had completed writing this before week three of homeschool, I would say that I see a glimmer of where this all is leading. But alas, we regressed again after our adventure. Obessive compulsive disorder is still a beast. Fortunately, our BB team was on it and we have some new coping mechanisms to work on. I’ll share soon on how that goes!
As we part ways, I’m praying over your journey. Know that what you envision is what you can manifest. I saw my support-system long before I created it and in raising my voice, it exists today…
Just one of the many ways that the Lord has provided. It’s a significant provision, though. There is power when two or more stand in His name and declare good things for His glory.
“When you do something for someone else, don’t call attention to yourself. You’ve seen them in action, I’m sure—‘playactors’ I call them—treating prayer meeting and street corner alike as a stage, acting compassionate as long as someone is watching, playing to the crowds. They get applause, true, but that’s all they get. When you help someone out, don’t think about how it looks. Just do it—quietly and unobtrusively. That is the way your God, who conceived you in love, working behind the scenes, helps you out.” – Matthew 6:2-4 MSG
This is me at a pretty cool photo shoot for postpartum doula life a few weeks back. Before I realized we would be homeschooling, I thought I would just be working with and writing for moms. But alas, God had other plans. Homeschool being one.
Homeschooling a special needs child gives you hundreds of opportunities practice small acts of kindness with great love in the dark. When nobody is looking, we’re tidying the tornado that rips through our world again and again and again. Sometimes with words. Sometimes with a squeeze. And sometimes by avoiding eye contact – because, like a dominant doberman, my daughter will aggress with too much social stimulation.
I’m so glad that I get to share this with you, dear one. Because if you are not currently raising a doberman yourself, then you get the blessing and opportunity of seeing inside our world. Which will organically make you more cognizant and (perhaps) more compassionate toward world’s you haven’t personally experienced.
If we haven’t met, welcome to my second post around the Brain Balance journey and our homeschool adventure. Why both at the same time, you might ask? Because the more we add to our life (with Wild) the more we must subtract. For her well-being… and ours!
Now back to the scoop on Brain Balance.
In my last post I didn’t quite describe what Brain Balance is. So today, I will. According to the book Disconnected Kids (a book written all about the Brain Balance program), it says this:
Each year, an estimated 1.5 million children-one out of every six-are diagnosed with autism, Asperger’s syndrome, ADHD, dyslexia, and obsessive compulsive disorder. Dr. Robert Melillo brings a fundamentally new understanding to the cause of these conditions with his revolutionary Brain Balance Program(tm). It has achieved real, fully documented results that have dramatically improved the quality of life for children and their families in every aspect: behavioral, emotional, academic, and social.
For all the families out there who have no idea what half of this language means (me raising my hand four years ago, before our diagnosis with Bliss aka Wild), it’s saying that Dr. Melilo took the time to explore how the brain functions in cases of challenging kids.
Challenging kids meaning that the world isn’t made for them. And it’s incredibly hard for them to function in it, at times… or always as in our case.
Which leads us to why we started Brain Balance.
Honestly, we’ve tried it all. Naturopathy. Homeopathy. Occupational therapy. Talk therapy. Exposure response therapy (ERT). Chiropractics. Nutrition. Probiotics and gut healing. Therapeutic baking (if there is such a thing). Yoga. Meditation. Mindfulness. Art therapy. And probably a dozen other modalities including Energy Healing (and yes, I’m a Christian!). Exhausted by a child that ravages our world, we have relentlessly pursued stability for her. Healing if it’s God’s plan (I believe it is). And safety for us.
Earlier this week, I described what Brain Balance has been doing for our girl… the regression we’re experiencing; and the hope we have in what is up ahead. I’ll share exactly what I did with our family and friends, for full transparency:
Just a few days ago, Ry told me he just wanted it all to end. He was referring to the madness. The regression we’re experiencing as his sister’s brain pathways heal…
In the adventure toward creating true “brain balance,” Bliss has reverted to behaviors we haven’t seen since three. Sudden rage. Compulsions. Fears. Frustrations. Impulse control is slight; and risk aversion non-existent. She’s running away from me in public… and yet, cornering me in the bathroom to help her resolve her angst.
This is ALL normal. It’s typical for this type of intervention. It’s hard none-the-less.
So today, I made sure this boy was heard. Witnessed and seen.
And also, I made it clear that this is NOT normal. The yelling. The destruction. Most other kids are not going through this. I confided in my precious boy that I believe he’s extra special because – really – why else would Papa trust him to be such a huge part of her life?
My joy-boy starts third grade tomorrow.
My heart is happy handing him over.
He will be heard, witnessed, and seen daily.
He will change lives with what he has heard, witnessed, and seen. I believe it. Do you?
My Papa can make beauty from ashes. Every time I look around, I am reminded of this.
What I pray what you can sense in these words above is that we have hope. We have hope for our entire family. And we have hope in God, most of all. Even after an early and sick baby, CFS/ME, cancer, and all the chaos in between including Wild’s diagnosis with OCD and SPD, I have no doubts that my God is a good, good Father.
If what we’re going through is for no greater purpose than to direct others toward Him, it’s worth it.
Also, I’d like for it to be easier (wink – I’m human so of course I have my own desires!). But I am willing to go the course to make Him known.
So, what Brain Balance wins have we had thus far? Increased visual perception (we can say hurry and she notices her environment and does exactly that… hurry) and new-this-week, independent play! She’s struggled immensely with this over the years.
I’ll end here today. What questions do you have for us? Where are you on your wild path? Mother or other, do you still have hope? What does that look like to you?
We’re cheering you on! Now. Yesterday. Tomorrow. Always.
When life gives you lemons – a.k.a. all the wildness – you can either make some super delicious lemonade with it… or you can not. With six years of mothering a gorgeous child with sensory processing disorder and fifteen years mothering me – a woman living with chronic fatigue syndrome (CFS/ME) – under my belt, I have personally come to the conclusion that either we choose to thrive… to make the lemonade… or we choose to not thrive.
Now, this doesn’t mean I’m judging you if you aren’t thriving today. That’s not what I do. I speak life. So, imagine that this brief snapshot of the very beginning of a brand new season of putting special needs in their place, and all-the-while crushing the positive-mindset-game, is me speaking life into both of us.
Which brings me to today.
Today, we begin at our local Brain Balance Achievement Center.
Last week when they suggested we document the ride, I immediately knew that I would share here – with you. Because I love sharing where the Lord leads us and has led. And also, I love hearing about where He’s taken you. (So please comment if you have something to say!)
Here’s a short video as we prepared to get our home exercises done… just before our big first day. The goal of our sensory integration plan? Contain the effects of SPD and OCD on our Wild girl’s life. Perhaps reintegrating her into a classroom environment (we’re homeschooling this year while she begins this adventure). And to see her live out her dreams – whatever they may be.
We are all worthy of thriving, my friend. Of making lemonade from lemons! And this family… we move forward by choice. Exhausted some days by our reality. Excited for what is to come. Embracing – accepting but not – what is.
“We just need to get through these days. But also, I don’t want to miss them! This is going to fly by.”
These are the words I heard this morning as I was leaving my postpartum shift with an absolutely precious family. I have had the honor of being able to watch them fall in love with their little girl over the last 5 weeks…. I love my job.
Also, I love the road I’ve taken to get here. The road that has required slowing down enough to savor motherhood… and witness fatherhood… and enjoy being able to serve… and so much more.
I wasn’t referencing how long the days can feel when your baby is a baby. (But it applies to then, too.) I was referencing the blur of sleep deprivation and frustration and temper tantrums and meltdowns. Hey, fellow special needs parents.
It could be so easy to rush past the wildness. But we “get to” savor it, if we so choose.
(I went to a conference by that name – I Get To – four years ago, by the way. I can’t tell you how many ah-ha moments I had!)
This doesn’t mean that you’re failing if you’re not savoring it, by the way. It’s just a place and space you or I can be more mindful. Am I pausing where I’m at? Or am I rushing through?
I hope you’ll take the time to read the article I shared on Moms Beyond about this, this month. There are a few questions I included to hopefully assist in your savor-age. (They certainly keeps me in check!)
P.S. No one can prepare you for the highs and lows of motherhood, fatherhood, parenting or caregiving. But for me, this one verse, has again and again come to my heart:
“Seek the Lord.” – Isaiah 55:6
Seek Him at 2 a.m. when the baby won’t stop crying. Seek Him at 3 p.m. when the toddler is rolling across the grocery aisle floor because you forgot to bring him or her home for their afternoon nap. Seek the Lord when you’re sick and tired… and sick and tired of being sick and tired. I feel like if we just do this one thing, it’s all going to be okay. Because you can see Him in small moments. And in seeing Him… perhaps you’ll take pause and savor whichever season you’re in.