He doesn't deserve this.
He deserves to have a happy, healthy life. Where he can run around and play like any almost 2 year old does. He deserves to eat pizza and spaghetti and ice cream and make a mess while doing it. He deserves to fight with his big brother over which car to play with and with his big sister over making a mess with her makeup. He deserves to go to Disney Land or Morgan's Wonderland or to the ocean to hear the waves and dig is little feet in the sand. He deserves so much more than I could possibly ever give him.
He deserves to cry over something other than being in pain or being scared from the loud noise his suction machine makes.
I don't know why my little boy has to go through all these things.
But I do know that he knows that he is loved. And every time I kiss his face he knows it's me (or his daddy because of his scratchy whiskers). I know he sees angels. I know he has more beautiful dreams than anyone could imagine. I know he loves the twinkle stars in his music therapy room at the Lee Ann Britain Center and he loves when I sing Twinkle Little Star to him.
I know that one day, when we are both in Heaven together, we will dance together and laugh and he will tell me how much he loved the loud, squeaky kisses I always gave him.
I know that God loves him more than I do and that He has Nikolas in his arms.
This may sound pessimistic to some or pitiful or just not possible but I have always known that Nikolas will not be on this earth for very long and I believe the Holy Spirit has been getting me ready for when he will leave this earth and go to be with Jesus in Heaven.
I don't know when but I am grateful to the Lord for every minute I have with him.
But I do know that I want to make his life on earth as happy as I possibly can. I want to make sure every day is filled with fun and smiles.
I am tired of setting aside and not taking enough stand for my little boy. I want the best for him and I want to make sure he is getting the best because he deserves it.
I'm sorry if I hurt someone's feelings along the way and I will be as nice as possible but I just can't let the little things go by anymore.
I love my son very much and my job as his mommy is to make sure he is taken care of and that is what I am going to do.
Sorry for the rant, I just wanted to express my feelings and how much I love my little rockstar.
Thank you for all of the recent prayers for Nick and for the monetary blessings given to our family for Nikolas.
Keep praying, we have a lot more fighting to do.
Here's a sweet video I took of Nick's big brother, Benjamin, singing his favorite song to him