As a parent, there are many times you say things you would have never imagined saying. Kids can definitely do some interesting things which make for some interesting phrases. There are phrases that you expect to say as a parent, but when you are a parent to a child who happens to have special needs, you wonder if you will ever say those things. There are many phrases that seem so normal for a parent to say, but I often wonder if I will ever get the chance to say them to Rhett.
Rhett is always ready to surprise me and do things to catch me off guard. That is part of the beauty of this journey. You do not take anything for granted. Just the other day we got to check another typical parenting phrase off our list. It took me by such a surprise that I had to take a moment to just laugh. Dale was feeding Rhett and Brooks a snack when I hear Dale say, “Rhett, stop taking your brother’s food!” That simple phrase sounds as if it would be so normal in a house with kids. Children always seem to want whatever their sibling has. Well let me tell you, I am not even sure if I could have imagined that phrase being said in our house even 6 months ago. One of the most difficult parts of our journey with Rhett has been his feeding difficulties. When he was a baby, he would silently aspirate small amounts of his milk and would get tired so quickly when trying to take a bottle. Because drinking a bottle was so uncomfortable for him, he began refusing the bottle around 5 months old. He basically did not eat anything by mouth for the first 2 years of life and was fed 100% of his nutrition through his g-tube. He was in feeding therapy multiple times a week to help him learn to not be afraid of food. Many other parents and therapists constantly had to remind me that the journey to learn how to eat was a marathon and not a sprint, and there are no truer words than that. There was much frustration, stress, and tears along the way, and it was all to get to the place where he is today. He has been eating the majority of his calories by mouth for over a year now, but has gone without any g-tube supplementation for about a month. We still use his tube for water, but we are hoping he can ditch the feeding tube once he learns how to better coordinate his drinking. There will be more therapy in his future, but he has already come such a long way. What makes me the most excited is that eating has finally become something he enjoys. I can now trust that when he says he’s all done eating it is because he is full and not because he is not enjoying the task. I am so excited that he is at the point that he likes food so much that he will take food that doesn’t even belong to him! For some this might not seem like a huge deal, but for our family it is the result of so much hard work, patience, and perseverance.
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