Heartbreak, Frustration, Anger, Guilt ~ the Emotions of a Special Needs Mom

I remember having that first conversation about our daughter with a church friend’s mom. She was a Special Needs teacher in the public school and had a playdate with our daughter & hers. She had some concerns about Faith, but wasn’t sure how to tell us or what it even was. Of course, as soon as I learned of her concerns, I made sure she told me everything she knew or thought! I wanted to know if there was a problem, and if so, how to fix it!

I didn’t take offense like she thought or like some parents do when they hear someone else say there is something wrong with their kid. I remember my heart being broken.

It was something so subtle that we didn’t even notice in her, and I felt awful. Awful for not knowing. Awful for not fixing it. Awful for not dealing with it sooner.

However, when you don’t know something, it’s hard to deal with it. Seeing her daily made it hard for us to see her gait instability like others who were trained to. You can only work with the information that you have. And that’s exactly what we did.

Visiting our Family Physician led us to a Neurologist who said, “It’s either a brain, spine, muscle, or nerve issue.” (yep, all things a Neurologist deals with) So we started with nerves.

Two nerve conduction studies, one EMG, one spinal tap, one MRI of her hind brain and C-spine, several genetics tests, lots of bloodwork, one muscle & nerve biopsy, one endoscopy & biopsy, a urinalysis, one Family Physician, four Neurologists, one Gastroenterologist, one Physiatrist, and a Partridge in a Pear Tree later, we have only been told Celiac and Polyperipheral Neuropathy (poly=many, peripheral=arms & legs, neuropathy=disease of the nerves) with unknown cause.

Unknown cause? How could that be?

Talk about FRUSTRATION!

How could my child be having trouble walking, having tummy aches everyday, and having eye issues and NO doctor we have seen can be able to diagnose this?!

Then the anger comes. Why her? She hasn’t done anything wrong! Why us? Did we, as her parents, do something? Did we somehow do something to cause this? Guilt.

I remember feeling hopeless. Helpless. Afterall, how can you help if there is no known cause, no diagnosis, no expectations, and certainly no known treatment or cure because you don’t even know what to try!

However, I also remember my faith… and that my “Faith” was named that for a reason. I have vivid memories of crying out to God on my knees, putting her in His hands… asking for Him to take care of her no matter what the outcome. I don’t know that I had much faith in the outcome at the time, however, I knew I could trust God.

Since this all came about almost 5 years ago, I have learned a WHOLE lot. I learned about health ~ nutrition & fitness. I’ve learned all about therapies. I’ve learned about all sorts of equipment and helpful resources. But most of all, I have learned about myself and my faith.

I have come to realize that no frustration, anger, or guilt will make her any better. Love, support, encouragement, natural foods, detoxification, and trust in God, however, can work miracles!!

Four years ago, I saw God work through an amazing set of alternative therapies, natural, organic, raw foods, and pure, clean juices to positively affect her body and start the healing process. It was amazing to see! We are about to start another sauna cleanse with her to give her a boost again!! I can’t wait to see what happens.

It’s a hard road, emotionally, for sure, when you have special needs children. And you certainly feel all sorts of raw emotions. I’m glad I have learned how to pull myself up out of those, beyond them, so I can offer the best of me, as her mom, to getting her healthy.

She and her brothers are the reason for this site… for Love. Care. Heal. That’s what my life is about. And I walk it out humbly everyday.

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 Heartbreak, Frustration, Anger, Guilt ~ the Emotions of a Special Needs Mom

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JessBio200 Heartbreak, Frustration, Anger, Guilt ~ the Emotions of a Special Needs MomJessica Stone is a wife, mom to 4, and owner of her own businesses in the fitness and essential oils industries. She has 3 special needs children, one which has an undiagnosed neuro-muscular condition that limits her mobility, and her twins are currently receiving therapy for sensory defensiveness, physical mobility, fine motor skills, and speech. She enjoys sharing what she has learned through her trials, experience, research, and tools that have helped her children’s health with other parents who are looking for support, encouragement, and helpful information. Get her FREE eBooklet Five Steps to Losing Those Last 10 Pounds today for simple steps to help you trim up and fit into those fashionable clothes you’ve always wanted to wear! Connect with Jess live today on Facebook!

Heartbreak, Frustration, Anger, Guilt ~ the Emotions of a Special Needs Mom

2 thoughts on “Heartbreak, Frustration, Anger, Guilt ~ the Emotions of a Special Needs Mom

  1. I’m always humbled by reading your posts Jessica! Your strength and passion for children with special needs shines through and I’m always left with the gratitude that whatever difficulties arise in my family I am blessed with two healthy children.
    Thank you God.

  2. Such an awesome post Jessica; the way you describe your journey with your daughter and than your faith in God must be so very encouraging for mothers in the same situation. I really hope that many moms will find your website that need it. I am repinning and tweeting….just a little help….have an awesome day!

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