Fearfully and wonderfully made.

It's anti bullying day. There is a song that keeps going through my head that I sang in elementary school and is still be sung today especially on remembrance day but I see it as fitting on Anti- bullying day. 

"Let there be peace on earth, and let it begin with me."

What I am about to share is not about my daughter, Kourtney, being bullied but about the mixed message that are being relayed to our society about acceptance.  We support 0 tolerance for bullying, rainbows on doors of classrooms and on city sidewalks symbolizing acceptance and inclusion, to love and accept everyone based on race, colour, gender, etc. The message of tolerance is clear. So why is it that our gender (not our sex) is a choice and important to how we identify? My concern is that we are encouraging transformations that require such drastic measures with little or no guarantee that this will bring self worth and acceptance. I want to share where I believe one can find their true identity. Ultimately the only way you can love and accept others and have "peace on earth"

Kourtney suffers from a rare genetic disease called Epidermolysis Bullosa https://en.wikipedia.org/wiki/Epidermolysis_bullosa_dystrophica

Kourtney is in a wheelchair and needs help with every aspect of daily living including bathing, eating, toileting etc.  This summer my daughters  and a caregiver went to the PNE ( a fair in Vancouver BC). They were grateful I was not there, as the mama bear would have created a ruckus.

Kourtney is limited in her activities and she lives for amusement park rides. She is also restricted in foods she can eat so melt in your mouth cotton candy is a fair favourite.  It was a very hot day.  Kourtney wears 4  layers of dressing to protect her fragile skin which makes her prone to dehydration.  On very warm days she always has a Gatorade bottle handy that is syringed out and put into her g-tube to keep her electrolytes balanced. Naturally she has to use the bathroom more often. 

As Kourtney and company got to the bathroom they were confused by line of apparently able-bodied people who stood in line to use the disabled washroom. Surely they were in the wrong lineup. Not wanting to lose their place Shaelyn (Kourtney’s sister)  checked the sign. Yes, it was disabled washroom alright, but also a transgender washroom.  All the regular bathrooms in this particular area could only be accessed by stairs. It was a very long wait and during that time one transgender said "**** it" and went to the bathroom of their choice because they didn’t want to wait in the lineup. In that moment their time was more important than their identity" I could go on about the injustice of a disabled bathroom being doubled as transgender but that’s not where I want to spend my energy.  Unfortunately, Kourtney did not have a "choice" but to wait for the disabled bathroom.

I am  sure I would have been locked up if I told Kourtney she could chose to have EB.  We could never ignore that her DNA contained a small gene that made her skin blister.  We always told her she had EB but EB didn’t need to control her.  Even with the disease process taking over her mobility, her nutrition, her sight and so many physical deformities, Kourtney didn’t fall  victim to her EB, because EB didn’t define her.  Her identity was not a part of her DNA. Despite her circumstances she is one of the most confident self-assured people you will ever meet. 

Kourtney has endured 10 plastic surgeries and an amputation to open her fingers widen her mouth and remove cancer. She has had numerous skin grafts taken from her thighs and abdomen. These surgeries were only performed to maintain hand function, open her mouth wider and remove skin cancer. Even with Kourtney having a high pain tolerance the surgeries were brutal and not without complications. I am not sure why anyone would want to take a perfectly functioning body and put it through unnecessary surgery. I also realize that there are hormone treatments one can go through and or a combination of both (being peri menopausal I understand hormone changes and would never wish that on anyone).  To sum it up changing your gender involves pain and suffering. It does not come with a lifetime warranty of self worth and acceptance. 

Despite the numerous hand surgeries Kourtney’s fingers still formed  into mittens. To this day if I knew that the end game would have been the same I would have never had signed consents to put her through all those surgeries. 22 years ago there was not a lot of information on RDEB so I only knew what we were being told by our doctor (who has been Kourtney’s biggest advocate).  Even if there was a cure for EB today, Kourtney would still have all the physical traits of EB, the scars, the clubbed hands, the alopecia.  Likewise, even with surgery and hormone changes there will always be signs and scars of the "transformation" surgery. That’s why I believe there needs to be more to this in how you identify.

The only way I have been ever able to rationalize Kourtney’s genetic disorder is believing in the words of Psalms 139: 13-14

For you created my inmost being;

    you knit me together in my mother’s womb. 

I praise you because I am fearfully and wonderfully made;

    your works are wonderful.

Believing that we are made in God's image has been so meaningful to me as  I raised Kourtney. I  have had these verses on speed dial through all the challenges. If I believed that our identity was in our human nature I would have never made it through. Identifying with Christ (Galatians 2:20) has been what has been instilled into Kourtney’s heart and has turned her into the person she is today. If only people would know that  we as humans are not strong enough to bear the weight of their own struggles. God wants us to rely on his word and the promises he has given. I believe if our identity is with Christ that it makes us more accepting of ourselves and in turn more accepting of others."If we want peace on this earth it has to begin with us"