So my heart has stopped racing and I can breath correctly again ;) I have been praying and prepping to give my testimony at MOPS this morning and faced a bunch of sweet momma's and mentor moms. Although I've shared it many times it was my first time doing it with a mic and a larger group. I was pretty nervous and the funny thing is when I was a teenager I used to speak at retreats and even sung on a worship team. No, I'm not that great but luckily the other girls sang like angels so it worked out LOL
You would think doing all of that and reaching my 30's I wouldn't be so nervous but I was. Thankfully I had several friends praying for me this morning and I felt them. So thankful for the friends who have become like family. They truly mean the world to me.
Of course after prepping and writing notes it didn't go as planned. I jumbled my words and feel I missed a few things but I know what needed to be said was said ;) My life is so far from perfect and I feel through it all I'm finally reaching who I am called to be because of it. I'm learning what I want and certainly don't want in life. Being more open about more of my story as been so freeing for me. I even opened a private album on Facebook of pictures about EB for anyone who wants to know more. I never showed people my legs. It was so private to me and even those I've grown up with will tell you that. I used to be shy and timid at times and kept things to myself. Sharing all of this has changed me for sure and maybe just maybe I am reaching a point in my life that will take me to the next level of what God wants for me. My first ministry of course is my husband and kids although I feel I fail at it all the time. I'm not the most patient person with anything in life. When I'm mad all 3 of them definitely know it. My husband is so awesome for putting up with me =P Since day one we have been a team and everything is 50/50 with us. That's what makes us succeed in all we do.
When I was first approached about giving my testimony I quickly thought to myself nope, no way, not happening. I feel like my story has become so redundant. Almost like all of these circumstances have made me the victim and has made me coo-coo at times. Aren't we all coo-coo at times though?! "Perfect" life or not. I'm certainly not the victim though. Sharing my story and becoming open about it has brought healing for me in so many ways. When I was told that my story is inspiring and can definitely touch others I quickly changed my attitude about it. I was humbled when I heard that and after much thought I said yes.
Let me say though I am not perfect nor pretend to be. I am also NOT preaching. I am telling MY story. Just because I'm a believer doesn't mean I am without fault or that I'm some "holy" person. I'm real and I make mistakes all the time. This is probably tacky but I still like my margarita's and my beer. Don't judge. Just being real ya'll. My husband and I like to country dance and to have fun. My maiden name is Reyna and I'm a Texan. Maybe that will clear the air a bit ;) What you see here is what you get. I do me and don't worry about opinions anymore. Now that is VERY freeing. The only thing I won't show is my messy house. Who really wants to see that anyway? I know I mention that a lot but really. It's hard keeping a spotless house with kiddos.
Being born with a genetic skin condition, loosing my dad to cancer at 4 and not having an earthy father, experiencing my grandparents being hit by a train and loosing my grandpa, having to grow up early to be the adult in a single parent household, moving out at 19 with a full time job and now having two beautiful girls who have EB as well can weigh on you over time. So many emotions and feelings come with all of this. Did I ask for it? Definitely not. I constantly ask why but when I do I'm always reminded of hearing a story when I was younger of someone in the same boat. Always asking why and they finally came to a point to stop asking that and start asking "why not"? Why not me? God doesn't make mistakes and I know and have felt how great and deep His love is for me. He isn't sitting up there with a lighting rod wanting me to be miserable. Although at times It can feel like that. Even now my husband and I have so many hopes and dreams and we are in the "waiting game". We have hit so many road blocks and don't understand things but we are continuing to trust. It's hard when you don't understand why though. I said this morning that my life verse is Proverbs 3:5- Trust in the Lord with all your heart and lean not unto your own understanding but in all your ways acknowledge Him and He will direct your paths. Trust again. That good ole' word. Easier said than done right?! I've really had to learn to trust Him and know this is my calling, my path. Our stories and life circumstances aren't for us to keep but for Him to use to bring healing for ourselves and others.
I've had friends ask why I let EB bother me so much. Although they ask this in a loving way...they say they love me for me and not my skin I still get a little frustrated because people just don't understand what it's like to live with it. It's not only painful physically but emotionally. Imagine never being able to wear shorts, small skirts, a bathing suit..although I have discovered mesh and lace cover-up pants so I am able to rock my bikini and get in the water =P They are super cute! Before discovering that though just 2 years ago Imagine always sitting on the side while your friends get in the beach water, go swimming together while your sweating in the sun wishing so badly you get it but would rather avoid all of the stares and just take the heat. People still stare when I get in with the pants but I don't to let it bother me. Imagine not being able to wear certain shoes or show your toes. I love doing Crossfit and running. Imagine working out in 100 degree Texas weather in pants! Could you do it? Imagine seeing your kids hurt all of the time. My girls have felt pain since they were newborns. Although these two girls are so strong!! They can handle anything. One minuet they will be crying and get over it within 2 seconds. Their tolerance level is pretty amazing. I've learned to tolerate it msyself. I have grown to accept the pain.(most of the time) Several weeks ago I had such a bad spot on my ankle I couldn't even walk it hurt so bad. I was stuck in bed all day and so thankful my husband took care of me and the girls all day. Can you imagine how many band-aids and hurt free wrap we have to buy? I bring up this story a lot but the last time my older daughter skinned open ( I mean several layers off) the palms of her hand she cried of course and I quickly wrapped it and within 10 min she was more concerned about missing out on the hay ride than her hand. Everyone was pretty amazed.
EB also effects our nails unfortunately. Last year someone accidentally stepped on my older daughters finger and by the looks of it I had a feeling she would loose it. I was pretty upset but kept a band-aid on it and pleaded with God. It has already effected both of their toe nails and I desperately didn't want it for the finger nails. About a week later it ended up falling off. I cried right infront of her and this sweet little girl said, "it's ok momma God is going to heal it". Filled with more emotion from hearing that I said, "yes baby he will." Deep down though I said, "yeah right". I certainly didn't turn to faith in that moment. I was upset. Every time I would look at it to check on it she would say with excitement, see! He's healing it!!! Do you see it momma? Although I didn't see anything I just thought for sure it would grow back abnormal. Well guess what a few weeks later it grew back completely normal. You can't even tell it was gone to begin with. I'm sure some will beg to differ and tell me it was coincidence or my husband's good genes had a play in this but EB is not that generous. My genes were strong enough for my girls to have this so I believe with my whole heart that God did heal her nail and let it grow back normal. I never imaged that my daughter, my saving grace would help me have trust and have faith in Him. She continues to inspire me daily with how strong she is. How strong they both are.
After today, I'm pretty sure I'm ready to speak again too thousands! Ha!! ok not really thousands but I feel more confident now after this morning ;) I know this was appointed for this specific time. My story has made me.... it has grown me and shown me so much about life. I've had to learn so much on my own but I'm thankful for God's grace. He has been with me since the day I was born and will continue to be.
Whoever you are be YOU. Be yourself boldy. Be brave about your story. Share it. It has made you. Don't be scared of it.
I guess all of this time, through everything........ He really has been teaching me to trust Him and to be brave.