Kekoa Noa

So I decided it would be a great thing to start a blog not only to let people know in detail Kekoa's struggles and his medical history but I feel as though it will be good for me as well to get things out! So we all know Kekoa's long life struggle with medical issues and he was just recently diagnosed with Sever autism and encephalopathy. To be quite honest it was some what of a relief to me that he finally got diagnosed by a professional at times I thought am I just crazy cause I can see all these  signs for autism but then everyone would say to me no why would you think that and he's probably just delayed which was so frustrating for me to hear. Yes of course I did not want my kid to be autistic but there were so many signs like he would never  react to his name being called, or him having trouble making eye contact, or the horrible melt downs which all I would ever hear is oh carlie thats a normal two year old thing and as a mom you know when something is wrong with your child, I mean he never understood anything I would say to him and wow its just been such a hard process and how do you describe this to others when most people think oh shes just over reacting. Through this whole processes I am learning so much about spiritual intuition and how our Heavenly father gives every mother and father intuition about their children. When Koa was born I had this gut feeling that something was wrong and know I wasn't sure what it was, I remember looking at koa and him never looking back and feeling like maybe he isn't all there but then I thought your crazy and just overly worried because he would not eat and when he would he would throw up so much my clothes would be drenched, he would never sleep no matter what I did, he had to be held facing out and never really wanted to cuddle unless he was really sick which was often, he never went poop and I remember just feeling so helpless and still do know! After being home in the hospital for two weeks I remember just sobbing and asking heavenly father for help cause I felt so crazy they were only finding little things wrong with koa nothing major and I wanted a quick easy fix! I got down on my knees and poured my heart out asking the lord what to do, was I crazy and was I looking for answers that were not there!! I got this strong feeling that said Carlie you have to be strong for him and never stop fighting, this will be a long hard hard journey and answers will come slowly but surely do not give up and trust in me! So I did just that and going to the doctors office four times a week was not easy especially having a beautiful little two year old girl whom I always felt like I was abandoning  by having to pon her off on others while I say for hours in a doctors office. Its amazing to see where I was then and where I am now! I have to constantly remind my self there is hope and I have to live for the now and enjoy today!  Let me just say I never knew anything about autism and still am learning and what a hard thing it is to explain to family and friends, No matter how hard I try sometimes I just feel like they don't get it or they feel as though I am making an excuse for my sons behavior, and though there are days I just want to curl up in a ball and cry cause I cant make people understand, I realize that they are human too and no one is perfect and I have to choose to not be offended!  I was not prepared for all of the stuff Dr. Lawson ( neuro psychologist)  had to say but I do know that she was inspired to say the things she said! Before I went to her office that day I prayed so hard for my heart and mind to be open to the things she had to say and that she would be inspired to guide me as to what we can do for KeKoa! I had never even heard the word encephalopathy which means brain dis function or brain damage. She told me she believed that Koa was mentally slower than most autistic children she had seen and explained to me they way he responded when being asked things which people have said to me oh but a normal two year old would not have know that which assuming they were just trying to make me feel better but I knew exactly what she was talking about, like the other day I was so frustrated with him not listening  and I screamed at the top of my lungs at him and my two other children started to cry and koa smiled and had no no idea what was even going on! May have not been the greatest example but it made sense to me, I know he is not all there I have seen it so many times as much as I hate to admit that! She told me the metabolic's in his body are off and could be causing some brain build up which they have to run tests on that and hopefully can help his body regulate through diet and medicine.She then began telling me that they were not sure the condition of his brain and that there was a very good chance that Koa's brain would not develop past a certain stage, which was very emotional for me but I knew what she was saying was that feeling the spirit told me when he was first born, now we never know the outcome Koa may surprise us but I am willing to accept whatever is in store for him and it will not make us love him any less. She also suggested he be tested for leukemia and wow did that blow my mind!! I kept thinking why would she ever suggest that she is a neuro Psychologist. So I went home and read everything I could on Leukemia and well most of the symptoms Koa has, I cried and then thought your just scaring your self stop it! And then the next day I got this gut feeling Carlie fight for him and fight for them to test him for Leukemia, I dont know  I feel strongly about it and I pray he dose not have it but I know I am his advocate and I have to fight for him. Most days are hard cause I feel like I work at a doctors office between the eight doctors he sees, I am always on the phone scheduling appointments, voicing my concerns, arguing with the nurses, or asking for paper work to be sent some where and then I feel like a terrible mom cause Im neglecting my other kids ontop of the pressure we as mom's already put on our selves, like I need to exercise, I need to cook dinner and make treats and clean my house on top of having fun things for my kids to do. I feel guilty all the time especially with my daughter jayla I feel like I can never give her enough time or attention, and I get aggravated with her cause Im on the phone and cant pay attention to her when she needs me to and all she wants to do is watch tv cause thats the only way I can get koa to stop his melt down which lasts forever and how do I explain that to her she is three! Its not fair! Somedays I wish things were normal where I could have that one on one time with her and that I didnt have to worry about koa falling or breaking things or having melt downs jayla dosesnt understand his melt downs! But I know she knows I love her and I want to be the mommy she deserves and I pray that I will learn how to handle things better and that I will be that mom that all my kids love and need! Im grateful for the lord for his loving hand in my life, for the unconditional strength he gives me each and every day to never give up! Somedays are easier than others but I know I can do hard things with the help of my husband and my family and my savior! Im grateful for the things my children teach me everyday and that they never give up on me and that they forgive me so easily! Im grateful for Koa's trials I know he gladly accepted his mission in heaven and he chose our family, its amazing how hard trials are but how they can be blessings as well, he is an example to me of faith and never ending hope!