I have a million things on my mind 24/7. I have thoughts I want to get out, fears and blessings I want to share and just babble to someone all the time. Time gets away from me. Four kids, Homeschooling, housework and cooking pretty much keeps me busy. Most of my down time, I want to do nothing. Brainless, no effort, be in a veggie state and watch TV. Which, I get to do often!! :) Roughly 9:30 each night.
It is September again. That means Carmyn is another year older. This is so bittersweet. It means another year of Angelman Syndrome. Another year and she is not cured. You see, I was arrogant. This dawned on me recently. I WAS ARROGANT!!! I did not think it was possible for me to have a child of "Special Needs". Chris and I had come through a really rough time taking care of his dad and almost lost him due to a serious accident. He had very intense rehab and was just getting easier to care for and then BAM!!! We have Carmyn and realize shortly she has problems. So we do what all parents do and we become educated. We know what to expect. But, again I am arrogant. She won't have seizures. No way. We're different. We are "good" and "educated" parents. We have favor in the eyes in the Lord. Well, that only lasted until she was 15 months old. So, disappointedly we put Carmyn on her first seizure med. Then I was arrogant once again. Okay, we will take meds. But, we won't be "those" people. That family. We will have control. And with a super tiny amount. HA!!!! That didn't happen either!!! What made me believe I had more favor? How was I different?? I believe it came mostly from a place of denial than a prideful place. I just didn't want to accept Carmyn had a disorder. Something as severe as AS. And what did that mean for my "perfect" family I asked God for? What did that mean for our future?
I laugh a little now. I can never be "good" enough. None of use have earned that!! Bad happens, diagnoses are made and struggles happen to all shapes, sizes and colors. We are not immuned. It is apart of living life here on this side of Heaven. What do we control?? How we live with it. Over the past 6 months, God has really opened my heart. Really put in my heart to share my journey, my faith, my struggles and share my family. God promises in His Word in Romans 8:28 And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose. I/Our family, including Carmyn, has a purpose. It is all for our good and His Glory!!! Does that me it will be easier??? HA!!!! NO!!!!! I know better than that. But, He is good and faithful. I know whatever we struggle with as a family, we will get through it if we keep our focus on Him!!!
So, as Carmyn approaches 6, I hope I can be slightly more open to sharing Carmyn. Confident that SHE TOO is a blessing to others. Allowing God to use her. Sure, some will turn and shun her. Some will shake their heads in public. Some will "Bless Her Heart", but never offer more!!! Never get in and get dirty. (BTW-I hate that term. Sorta rude.) So, maybe someone will get to know her like I know her!!!! Love her!!! See her for a beautiful, 6 year old, full of life girl~With her daddy's wicked sense of humor!!! That is my prayer for her 6 year here!!!
*** Let me also claim, I HAVE NOT GIVEN UP HOPE!!!!!!! My God is BIG!!! I believe I will hear Carmyn's voice one day. I really do!!! I know science is close!! I know God's timing is perfect!!! I am only asked to deal with TODAY!!! So, that is what I am doing. Dealing with and sharing my day!!! Only God knows tomorrow. Frankly, it comes with too many worries and fears!!! I like the one day at a time much better!!! ***