Monday, June 25, 2012

Sisters I never knew I had. Oh so kind and brave.

I'm sitting here in my special momma "NEST" chair finally having my first cup of coffee for the day. The sun is setting behind this idyllic neighborhood. It's the same chair I sat in hour after hour, day after day, month after month looking for answers for my Danica. How much time did I spend reading research, reaching out to Chiari moms, blogging, praying, weeping, wailing and pleading for God's direction in the heaviest of decisions we've ever had to make in our lives?  God brought my angel, Pam, through the internet into my heart at the perfect time, and she lifted me up and listened and shared what she knew. I looked back at our facebook history of private messages tonight. There are one hundred forty-seven. There are many emails too. There are long phone calls and laughing and crying. There are cards of encouragement and little gifts. She is the one who listened last weekend when I finally broke down about living here and how sick I really feel. She sends me messages to download and listen to. She send me songs to remind me to worship. She speaks Truth wrapped in the compassion and courage of our Savior. Yes, I am active in the body of Christ, and this is my sister.

Pam has a daughter with Chiari as well. She has been decompressed and had tethered cord surgery and will most likely eventually need to be fused because she too has EDS and suffers instability. Two years ago today Pam had her decompression and fusion with Dr. Henderson. This was followed by her own tethered cord surgery. Our bodies and our stories read like we are twins. It was dear Pam who gently encouraged me when reading on the blog about how much pain I was in to be brave enough to look deeper than a fibromyalgia diagnosis. It was Pam who took me straight to Dr. Henderson, my hero. It was Pam who encouraged me when I thought I could not do the second surgery to keep the faith.

Just like Pam has been a mentor, friend and sister to me, she has had one of these women in her life. When I posted for "Kind and Brave" nominations it was no surprise she would submit Kristin. This is not a journey we could take alone. It is not a walk many can stay the distance for along side us. We cling to one another as we crawl out of bed to make it through another day, fight for a better future for our children who have inherited our diseases, pray for one another in the specifics only we could know or understand about how hard and painful this path is. We also share the sharp beauty that is only appreciated when you have lost so much and still unexplainably know for sure you are richer, wiser, kinder and more sure than ever this is not in vain. I know I will run the streets of gold in perfect bodies with these two ladies. I wonder if Heaven will be just a little sweeter for those of us who are so broken here?

Thank you Pam and Kristin for blazing trails for me. I love you. Thank you Pam for this nomination.

Several people immediately came into mind, when given the opportunity to nominate a person who demonstrates kindness and/or bravery for the giveaway. To try and choose just one of them, became a very difficult task for me. I struggled for days, trying to narrow down my list. Many people have touched my life through random acts of kindness or by personifying bravery. It was so hard to choose just one person.

Today, I am nominating a friend, fellow patient, mother, advocate, and a person who always has a smile on her face, while she continues to lift up others, even when life knocks her down. Always staying positive, reaching out to those who need a pep talk or advice, raising awareness and educating about medical conditions, taking care of sick children day in and day out, while she herself is sick... are just a few of the qualities that I admire in Kristin Means. Kristin is clearly a person who has learned to "dance in the rain," through it all.

Sixteen surgeries later and Kristin is still cracking jokes and making people laugh through it all. She can put a smile on anyone's face. Kristin battles the devastating effects of Chiari Malformation and Ehlers Danlos Syndrome daily. There is no cure for either condition and both are progressive and degenerative. Her sweet boys have these conditions also. Many people are fighting illnesses themselves, or have children who are battling medical conditions...but to be both a patient and mother of two sick children, takes things to a whole different level. We all have our crosses to bear in life, but to do what Kristin does every day with such grace, patience and kindness, touches my heart and soul. To choose to wear a smile, when it would be so much easier to wear a frown, is not an easy thing to do.

Having Kristin in my life, makes me want to be a better mother, friend, wife and all around better person. She may not know this...but I look up to her (even though she is much younger than me). Kristin doesn't complain, when she has every reason to. She doesn't feel sorry for herself or ever ask "Why me?" She smiles through the pain and reaches out to others who are hurting. She is very thoughtful, caring and giving...and truly one of the bravest people that I know.

We have a choice every day when we wake up. It is often easy to give up and feel defeated before the day even begins. The choice to remain brave, when you know that something is lurking around every corner when it comes to your health and your children's is beyond admirable. Always showing kindness and truly caring about others, while facing your own trials, is just another reason why I would love for Kristin to be the recipient of the Kind and Brave Giveaway. Kristin is a huge blessing in my life!

PLEASE take the time to watch this video of Kristin sharing her journey and what life is like with EDS and accompanying conditions. I hope in my lifetime people will respond with more compassion and understanding to beautiful women like us who look "fine" and are truly so sick and struggling. Today I had the same anesthesiolgist for my colonoscopy as I did for my endoscopy. He said after our last meeting he went home and researched EDS and connective tissue disorders. These are small victories for us who seek to be heard and understood.

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