My Kind Of RARE

2016-02-09 17.05.06
Brandon & Brently

 Loving someone who is RARE is a precious honor.  I am thankful God has given me the privilege to love two special RARE people in this life.  This RARE condition is a chromosome disorder of the L1cam gene and it’s a neurological disorder called L1 Syndrome. Daily struggles make it worthwhile when the smallest little grin comes across my sweet boys faces or hearing the laughter and seeing the silly faces they make when they think no one is watching, listening, or even signing a new sign after teaching it to them over and over and over again. Sometimes it can feel like your not winning this battle and then all of a sudden…. he signs….


My kind of RARE is loving my boys who have an unconditional love and trust.  I have faced many things through the years, but by God’s grace and mercy, He has brought me this far.


The greatest challenge in receiving great things from God is clinging onto HIM in the midst of struggles and knowing you are beating the odds with everything.

 God continues to bless and I wouldn’t make it without Him by my side.  Holding on to Jesus is all that I have in this RARE world. Love on someone who is RARE today. You will truly be blessed because I sure am!

Check out these resources and learn about Rare Diseases:

https://www.rareiscommunity.com/

globalgenes.org

About Tonya Aycock

Hi, my name is Tonya. I am a wife and mom of two children (Brandon & Brently). I am a born again Christian. My passion is raising awareness for my boys and making sure they have the very best that I can give them. I love singing. I was in a Southern Gospel Group for about three years, and I enjoyed every minute of it. I think most of all, besides the singing, I enjoyed meeting people and sharing my testimony of how God has brought me through. I love playing guitar and hearing my sweet husband play music and sing to our boys. I enjoy making crafts and designing floral arrangements. I love camping. I am always up for a new adventure! I enjoy working in my yard and anything outdoors. I love my home. I like taking pictures of God’s beautiful creation. The hummingbirds, Canadian geese, turtles, and deer are beautiful! I never dreamed that I would enjoy the country as much as I do. I have always been a city kind of girl, so let’s just say I am adjusting to the country's life well. Haha! Another exciting thing about my husband and myself is that we have always wanted to open a restaurant. Maybe one day… who knows…. I created this blog to share the in’s and out’s of daily living of being a mom of children with special needs, how life can change in an instant, losing a child, finding real friendships that live the same kind of life that I do that truly understand, and much more. I love to talk about my faith as I learn how to cope through life (good and bad) together. I want to always put complete control in my Lord and Savior, Jesus Christ, because without Him, I am nothing. My prayer is that I can somehow help someone by sharing my story. It is most definitely easier said than done, and I fail daily, but striving to make things work in a world that doesn’t understand is just one of the reasons I am here, writing and sharing my story and trying to be the best me as I can and being the best mother that my children will love and respect and see me survive and thrive as I watch them surviving two thriving in life. But, most of all that they see Jesus in me. “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11 God has a plan for my life and my family as well and for who is reading this right now. I can only hope and pray that I am doing what He has called me to do…… Being a wife, mom, advocate of special needs, a friend, encourager, but most of all… a servant of His. This has been and continues to be a unique life raising my SuPeR HeRo children dancing in the rain of the beautiful, messy life!
This entry was posted in Acceptance, Faith, Parenting, Siblings, Same Diagnosis, Special Needs, L1Syndrome, Thankfulness, Uncategorized and tagged , , , , , , , , , , , , , , , , , , , , . Bookmark the permalink.

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