I have to admit, I am struggling. I have this fight going on inside me and I just don’t know how to change the inner wrecking ball that can bring me to tears at the drop of a simple word, phrase or sight of a picture, whatever it may be. My toddler, still a baby in my eyes and she probably always will be to me! Because she’s just my sweet little baby Raye! But I see more and more that others view her as a baby as well, because she is, but she is also not. Her peers viewing her as such a little baby stands out to me the most. We, my three little ones and I, spend most of our time home together and at therapy and doctors appointments so our daily routines and activities are normal to us! Colbey Rayes butt scooting, baby babbles and gestures are the normal for us! She is learning new words, understanding us more and trying to get into the mix as best she can. I can see the gradual change, I notice all the new little improvements, but as time goes on, others continue to pass her by. Seeing her with others around her age, seeing other toddlers do what Colbey Raye is not able to do as a result of her seizures and surgery is a reality we live in but it is hard at times. As others, especially those younger than Colbey, pass her by I cannot help but feel frustrated inside for her. As they start to walk, talk, playing together, my heart breaks a little because she’s not doing it with them. It’s hard for me to see how mature and able these little ones are, Colbey Raye should be right there with them! Running, fighting over toys, sitting on the couch watching a movie with her sister, but instead she try’s so hard to scoot on her butt to find where the action is, toys get taken from her and although she lets out a little grunt she can’t retrieve it, she will fall right off the couch and not learn from the consequence. Colbey Raye has come so far!! She has conquered so much and is such a strong hard fighter. She amazes me everyday with her determination and her ability to master new creative ways of doing things that come so easy to others. She is so tough, so smart and so trusting, I hope this never changes in her. I still cannot help but hurt, as her mother I want the world for her, I want to give her two working arms, walking legs, eyes that see, a brain that is free! But I can’t. The struggle is real, we live it everyday. Ours be different than others, mine even different from Colbey Raye’s, but it is real. This year I did not make any New Years resolutions, just a prayer. A prayer for my strength to continue, for my trust to strengthen and the ability to truly accepts, willingly and gratefully what is being asked of me. And for Colbey Raye to keep this amazing attitude of determination, to always be the lover of life that she is, to always keep that sweet happy smile on her face and know that no mater the height of the mountain she is strong enough to over come whatever challenges are thrown her way.
A verse for 2015, Mathew 17:20, we will have faith and He will help us move these mountains! We are ready for what 2015 will bring our way.
“Be your name Buxbaum or Brixby or Bray or Mordecai Ally Van Allen Colbey Raye. You’re off to great places. Today is your day! Your mountain is waiting so get on your way!”
Here we go.
Colbey Raye's journey and life's new "normal" 
I can really relate to this post. My son has GDD due to seizures caused by focal cortical dysplasia. He is 3 in April. He started walking at 19 months old and still only uses a couple of words. We have lots of therapy and he is learning sign language. Younger children overtaking him in development is one of the hardest things. I just want to protect him forever. It’s hard talking to friends because they don’t understand, having only neurotypical children. Stay strong.
I know how you feel about it being hard to talk to friends, even family who’s children are neurotypical. There is just so much more than meets the eye and it’s hard to explain the true difficulties of our little ones disability. It’s nice to have other people to relate to and talk to, and so hard to find sometimes. Colbey Raye will be 2 in April, and I just want so much for her! I know time heals and helps, I am trying to be patient with it all, but it is hard. Thank you, and stay strong as well!
It’s such a double edged sword of emotions I had while reading this entry about your feelings on Colbey being passed by her peers. I was so saddened by the pain I know you feel in your heart (I know the pain all to well) but also glad to know that I am not the only one who feels that way (and then feeling guilty for being glad that someone else knows how I feel… Ugh! Emotions!! )
I struggle all the time with guilt and anger and sadness over my son, Phillip, being passed by children so much younger than him.
I get sad or angry at the hand we have been dealt and then feel guilty for feeling that way. Because “the hand awe have been dealt” includes Phillip and he is the greatest gift I have ever been given.
Anyway, I just wanted you to know that YOU aren’t alone in your feelings either. I am praying for you all- for your continued strength and faith in His love, and for Colbey Raye to continue being seizure free and for her to always always be a fighter. God Bless you all.
*misty*