The last month or so, I’ve been going through a sort of grieving process. I’ve been mourning my past self… the healthy one. With Ehlers-Danlos Syndrome, we need to stay on top of our diet, exercise (not too rough), and stress levels. (who doesn’t right?) Being a homeschool mom of 4, most of which also have EDS and the problems that go with it, I have been neglecting myself in the midst of handling so many emergencies. Now, I’m in “recovery.”

I mourn being able to cut fruits and veggies without pain. I mourn being able to go at a continual process of motion from one thing on my list to the next. When I feel sick, I need to stop. I mourn being able to eat at social food functions. I mourn being able to leave the house whenever I darn well feel like it. I never know when my legs will give out. I mourn the freedom from braces on my hands and knees, or even a cane. I mourn having independence and self-sufficiency some days.

My kids found me crying in my bedroom recently and asked me what was wrong. I said, “I just want to be normal! I want to wash dishes or do laundry like normal people do!” My oldest son, whose joints pop out randomly, snickered and replied, “But Mom, we’re not normal.” My oldest daughter who has had stitches three times this year because her skin tears easy just hugged me and said, “I know, Mom.”

I went to lunch with a friend of mine this week whose in recovery of cancer for the second time, as well as, experiencing the pain of her parents health declining. We cried, hugged, and poured our hearts out and encouraged each other. We laughed about what we’d prayed about prior to our health declining. She wanted to be closer to God and to have time to visit her parents. I wanted to learn more about how to heal the symptoms of Ehlers-Danlos Syndrome naturally to be prepared with answers for my kids’ future. And here we are.

She shared with me a story…

“A boy found a cocoon of a butterfly that he brought home.  One day, a small opening appeared in the cocoon. He sat and watched the cocoon for several hours as the butterfly struggled to force its body through that little hole. Then it seemed to stop making progress. It appeared as if the butterfly had gotten as far as it could, and it could go no further. The boy decided to help the butterfly in its struggle. He took a pair of scissors and snipped off the remaining bit of the cocoon…  and the butterfly emerged easily.

As the butterfly emerged, the boy was surprised. It had a swollen body and small, shriveled wings. He continued to watch the butterfly expecting that, at any moment, the wings would dry out, enlarge, and expand to support the swollen body. He knew that in time the body would contract and the butterfly would be able to fly.

But neither happened. In fact, the butterfly spent the rest of its life crawling around with a swollen body and shriveled wings. It was never able to fly.

What the boy in his kindness and haste did not understand was that the restricting cocoon and the struggle were required for the butterfly to be able to fly. The butterfly must push its way through the tiny opening to force the fluid from its body and wings. Only by struggling through the opening, can the butterfly’s wings be ready for flight after emerging from the cocoon.

Sometimes struggles are exactly what we need in our life. If God allowed us to go through our life without any obstacles, it would cripple us. We would not be as strong as what we could have been.

And we could never fly.”


So, this week, I’ve been learning to forgive myself for grieving. I’d been going off of not only my expectations, but feeling others’ expectations that I will heal fast and just feel better like a virus. I decided to let go of my control. It’s not mine.

“Today, I forgive my braces for not matching my clothes. I’m thankful they are holding my joints together so I can function. I forgive my fingers, wrists, back, elbows, and knees for hurting and not being able to do what they used to do. I’m thankful that there is hope I can get stronger through slow exercises, essential oils, diet changes, and who knows what other answers are out there for me. I forgive myself for not having all the answers or the strength to follow through when I have an answer. I forgive myself for not being strong. I forgive myself for not being able to change my eating habits overnight or even for being too tired to make the “right” meal. I forgive my body when it’s too tired or sick to keep going. I honor my body with rest, comfortable clothes even if it’s my pajamas, and I will focus on enjoying my time with the kids. I forgive myself for getting frustrated. I’m thankful for supportive family and friends who “get it.” I forgive my body for not being able to function on a level that it used to. I am still worth something regardless of my accomplishments. I am still angry about it and I may cry a lot in processing it, but I forgive the anger. It’s okay to feel this way.”

This week, being Christmas, I decided to make a change in my life. I’m tired of being in my pajamas. They are so soft, but I feel sick being in them all day. I cleared out everything in my closets that was not soft in texture or color. Yes, I got rid of my black clothes. I’m naturally a soft person and I want that person to be seen… not the sick one… not the person hiding hoping not to be seen unhealthy… I want people to see me BEYOND my disorder. I want to FEEL like me beyond my disorder.

I also asked for help from my hubby in making a big salad for the week and did my best to stay away from the things that make me feel so sick. I feel like a completely different person! I don’t feel like I’m well overnight, but I’m feeling more like me. My clothes aren’t me, but I feel better in my clothes. My disorder isn’t me, but I feel like I’m dealing a lot better than I was. We are free to struggle because it makes us stronger and wiser people in the long-run.

For more articles like this one check out Faith and Encouragement

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