Its not just you – Chronic disease & special needs

This post is part of a series on sharing individuals stories to help others realize, they are not alone. If you haven’t read the introduction to this series, please start here. Today’s post is by one of the strongest women I know – Jennifer of The Barefoot Preacher project. If you don’t already, please give her a follow. You won’t be disappointed.

Let me start off by saying that this post comes at the perfect time. Lately, I’ve been pondering the why beneath my daughter’s journey. And at the same time, the Lord has been gifting me just the most beautiful glimpses (thank you Facebook memories!) of some of the most treasured moments of my life as a mom. My daughter’s journey has paralleled mine, if I’m honest with us both. At 17 months old, I weaned her from 24/7 on demand, day and night breastfeeding because I planned on traveling for a new business venture. Also, I was a little bit weary from constant touch. I digress. Within two months of weaning, we both found ourselves on new turf. Wild – unable to self-regulate without a breast and being worn (baby wearing was our tool to do life). Mama – in pain from autoimmune disease. It stayed at bay while I breastfed my babies. The hormones put it at ease. But the second I stopped, my body went haywire. Joint pain. Muscle aches. Whole body fatigue. Bouts of pneumonia again and again.

And then 2015 came. By then, I was working from my bed and attempting to take care of two small children. One of which (Wild) never slept. My body and my mind were on edge day in and out. I cried as I dropped off my son at preschool every day. It was exhausting to care for all of us each morning. Since her introduction into life without the “comforts of the womb” Wild cried often too. Actually, it was almost all of the time. We could not separate. And soon, I would give up my membership at the gym (all hopes of keeping my sanity) and be kindly asked to take her out of the in-home daycare she visited part-time because of her aversion to other, smaller kids. I deeply needed to practice self-care in this season, yet here we were at rock bottom… with no family in sight, few friends in our new town, and no true diagnosis for me or her. Summer changed that. I caught a mosquito-borne virus (Dengue Fever) and found myself at the Mayo Clinic where they diagnosed me with mono-induced Chronic Fatigue Syndrome. Basically my body systems were trying to fight a bout with EBV (mono) I had in college… still. At the same time, my daughter was diagnosed with Sensory Processing Disorder. While in the middle of one of the biggest fights of my life (barring cancer or re-learning how to walk – but we’ll get to that another day), we both needed help.

For Wild, I had already contacted birth-through-three services in my county. Something you can do too – you do not need to wait for your pediatrician to diagnose your child to get support! It’s a wonderful loophole that I found out about in teaching families yoga. God gifts us with tools, oftentimes, long before we need to use them. Such is the case with this. (I’m so thankful.) What can I tell you about SPD? Sensory processing disorder is best be defined on understood.org as, “issues or difficulties with organizing and responding to information that comes in through the senses. Kids with these issues may be oversensitive to sensory input, undersensitive, or both.” Wild exhibited signs of both over and undersensitivities. She hated some movements – like in the car. But she loved running into walls. She despised lights and loud noises. But some days, she craved extreme sound and would laugh like she heard the funniest joke in the world. Wild loved to sleep on me, and could only sleep touching me for 4.5 years of her life. She overstuffed her mouth with food, often. And over the years, I’ve given her the Heimlich three times. What I can also tell you is that I believe SPD triggered a lot of her obsessive compulsive tendencies.

Yes, in 2018 she was also diagnosed with OCD – and “at risk for autism” was removed from her files. Anxiety is a fiercely dedicated survival mechanism of the brain that allows us to protect ourselves from “what if’s.” So, because Wild is forever unsure of how her body will respond in an environment, her brain tries to protect her… sometimes creating unhealthy coping mechanisms and a bit of paranoia. Looking back, I can now see a lot of her most horrible bouts with OCD have also paralleled my hurts. Her anxiety disorder reached an all-time high in 2018, after I survived months of melanoma-related illness. There were many days I thought I would die. And I’m not being dramatic. (I wish I was.)

So, how do we manage it all? Together.

I think that it is so, so incredibly easy to ask your support system to provide the tools necessary – and then to allow them to manage it all for you. But honestly, it’s not enough. There is therapeutic value in going the course together. This has looked like parent-coaching through our developmental delay system. It has looked like chiropractic, naturopathic, and homeopathic consultations and appointments. We’ve even needed meds at one point – something I struggled with as an Eastern-minded woman. Yet it saved her from some really dark hours. I’ve read dozens of books. We practice yoga together – and separately – and meditate. Wild regulated her bladder through equine therapy (we are forever indebted to Miss Kate, the best horse on earth!). And I have shouted from the rooftops both in-person and online about our path. (We have fabulous support systems from this alone.) I journal. I pray. We’ve simplified life. My husband and I have found wonderful sitters so that we can still date. We’ve brought our son to countless special siblings workshops – so he’s supported too. I’ve even done a 12-step in Faith-Based Recovery to get to the roots of my hurts… so they won’t all become hers. And lastly, by the time you’ve read this, we will be in our first really honest therapy session. One in which we begin to conquer our traumas together. Because truly, I just realized how much my hurts have become hers. (No guilt here. Just reality as a woman who has done life with a serious chronic disease… that can take a toll on a whole family.)

What I want to be clear about as I share our story is this: it’s not us or them. We both grow when we do life together. So while I never want my kids to see me sick ever again – I also know that they might, and I’ll be honest again so we can all thrive. The same goes for Wild’s sensory and anxiety disorders. While we want both to be in the background of our lives so, so badly some days, we’ve taken to being very honest about what she’s going through. And in return have received so much trust from our daughter (and our son – who is just her biggest cheerleader ever). Wild is an amazing human being. One that has heard her value and amazingness voiced even on our hardest days. I’ll end here. You’re not alone. If your mental health is fragile. If your physical health isn’t quite where you want it to be. If your child struggles with challenges in either realm. You’re not alone. We are better together, we are worthy of well, and we are made for more. I urge you to get in community. I urge you to never give up hope. And I urge you to fully understand that even if life is hard, your potential is limitless. I know this because mine is, too. We are loved and created with purpose and intent. I’m cheering you on.

xox J.


Series: Parenting a Child with mental illness – Moms supporting moms

This is part four of a five part series on parenting kids with mental illness. If you haven’t read my first post, you can catch up here. This week’s post will be from an amazing individual who I am in complete awe of. I met Jennifer through a friend at our local recreation center. She is everything you would envision when you describe a Proverbs 31 woman.

Jennifer, is the founder of The Barefoot Preacher Project, were we have the vision to share stories; advocate for wholeness in wildness; and train up families – mothers and children – to see the goodness within reach. It’s a gift and an honor to use what myself & our guest bloggers are sharing as a vehicle for others to know they aren’t alone in mothering, nurturing, and caregiving.

Better Together: Healing In Motherhood & Helping My Child

Let me start off by saying that this post comes at the perfect time. Lately, I’ve been pondering the why beneath my daughter’s journey. And at the same time, the Lord has been gifting me just the most beautiful glimpses (thank you Facebook memories!) of some of the most treasured moments of my life as a mom.

My daughter’s journey has paralleled mine, if I’m honest with us both. At 17 months old, I weaned her from 24/7 on demand, day and night breastfeeding because I planned on traveling for a new business venture. Also, I was a little bit weary from constant touch. I digress. Within two months of weaning, we both found ourselves on new turf. Wild – unable to self-regulate without a breast and being worn (baby wearing was our tool to do life). Mama – in pain from autoimmune disease. It stayed at bay while I breastfed my babies. The hormones put it at ease. But the second I stopped, my body went haywire. Joint pain. Muscle aches. Whole body fatigue. Bouts of pneumonia again and again.

And then 2015 came. By then, I was working from my bed and attempting to take care of two small children. One of which (Wild) never slept. My body and my mind were on edge day in and out. I cried as I dropped off my son at preschool every day. It was exhausting to care for all of us each morning. Since her introduction into life without the “comforts of the womb” Wild cried often too. Actually, it was almost all of the time. We could not separate. And soon, I would give up my membership at the gym (all hopes of keeping my sanity) and be kindly asked to take her out of the in-home daycare she visited part-time because of her aversion to other, smaller kids. I deeply needed to practice self-care in this season, yet here we were at rock bottom… with no family in sight, few friends in our new town, and no true diagnosis for me or her.

Summer changed that. I caught a mosquito-borne virus (Dengue Fever) and found myself at the Mayo Clinic where they diagnosed me with mono-induced Chronic Fatigue Syndrome. Basically my body systems were trying to fight a bout with EBV (mono) I had in college… still. At the same time, my daughter was diagnosed with Sensory Processing Disorder. While in the middle of one of the biggest fights of my life (barring cancer or re-learning how to walk – but we’ll get to that another day), we both needed help. For Wild, I had already contacted birth-through-three services in my county. Something you can do too – you do not need to wait for your pediatrician to diagnose your child to get support! It’s a wonderful loophole that I found out about in teaching families yoga. God gifts us with tools, oftentimes, long before we need to use them. Such is the case with this. (I’m so thankful.)

What can I tell you about SPD? Sensory processing disorder is best be defined on understood.org as, “issues or difficulties with organizing and responding to information that comes in through the senses. Kids with these issues may be oversensitive to sensory input, undersensitive, or both.” Wild exhibited signs of both over and undersensitivities. She hated some movements – like in the car. But she loved running into walls. She despised lights and loud noises. But some days, she craved extreme sound and would laugh like she heard the funniest joke in the world. Wild loved to sleep on me, and could only sleep touching me for 4.5 years of her life. She overstuffed her mouth with food, often. And over the years, I’ve given her the Heimlich three times.

What I can also tell you is that I believe SPD triggered a lot of her obsessive compulsive tendencies. Yes, in 2018 she was also diagnosed with OCD – and “at risk for autism” was removed from her files. Anxiety is a fiercely dedicated survival mechanism of the brain that allows us to protect ourselves from “what if’s.” So, because Wild is forever unsure of how her body will respond in an environment, her brain tries to protect her… sometimes creating unhealthy coping mechanisms and a bit of paranoia. Looking back, I can now see a lot of her most horrible bouts with OCD have also paralleled my hurts. Her anxiety disorder reached an all-time high in 2018, after I survived months of melanoma-related illness. There were many days I thought I would die. And I’m not being dramatic. (I wish I was.)

So, how do we manage it all? Together. I think that it is so, so incredibly easy to ask your support system to provide the tools necessary – and then to allow them to manage it all for you. But honestly, it’s not enough. There is therapeutic value in going the course together.  This has looked like parent-coaching through our developmental delay system. It has looked like chiropractic, naturopathic, and homeopathic consultations and appointments. We’ve even needed meds at one point – something I struggled with as an Eastern-minded woman. Yet it saved her from some really dark hours. I’ve read dozens of books. We practice yoga together – and separately – and meditate. Wild regulated her bladder through equine therapy (we are forever indebted to Miss Kate, the best horse on earth!). And I have shouted from the rooftops both in-person and online about our path. (We have fabulous support systems from this alone.) I journal. I pray. We’ve simplified life. My husband and I have found wonderful sitters so that we can still date. We’ve brought our son to countless special siblings workshops – so he’s supported too. I’ve even done a 12-step in Faith-Based Recovery to get to the roots of my hurts… so they won’t all become hers.

And lastly, by the time you’ve read this, we will be in our first really honest therapy session. One in which we begin to conquer our traumas together. Because truly, I just realized how much my hurts have become hers. (No guilt here. Just reality as a woman who has done life with a serious chronic disease… that can take a toll on a whole family.)

What I want to be clear about as I share our story is this: it’s not us or them. We both grow when we do life together. So while I never want my kids to see me sick ever again – I also know that they might, and I’ll be honest again so we can all thrive. The same goes for Wild’s sensory and anxiety disorders. While we want both to be in the background of our lives so, so badly some days, we’ve taken to being very honest about what she’s going through. And in return have received so much trust from our daughter (and our son – who is just her biggest cheerleader ever). Wild is an amazing human being. One that has heard her value and amazingness voiced even on our hardest days.

I’ll end here. You’re not alone. If your mental health is fragile. If your physical health isn’t quite where you want it to be. If your child struggles with challenges in either realm. You’re not alone. We are better together, we are worthy of well, and we are made for more. I urge you to get in community. I urge you to never give up hope. And I urge you to fully understand that even if life is hard, your potential is limitless. I know this because mine is, too. We are loved and created with purpose and intent.

I’m cheering you on. xox J.

Moms supporting moms

As Moms, we need to build a community of inclusion. It is the only way we will be able to heal the world of its hurts. I am so thankful to have met Jennifer. If you ever have the honor to meet Wild and Mild, you will see that they are moving through life – together. Its beautiful to be a witness of their journey. Jennifer is the support Jesus put in front of me on this journey of helping my kids with their mental illnesses.

Please follow Jennifer on Facebook and Instagram. You can also follow her on her blog The Barefoot Preacher Project.