Guest Blogger Amanda Rivera: "This IS normal"

People always ask me , “ What’s wrong with him?” “Will he always be like this ?” “Is he going to die?” “ Will he be normal?” Many other questions as well. 

          As a mom more than half of the questions hurt your feelings. I know most people aren’t trying to be rude, but the ones that are need to be educated. My son has special needs, it does not mean he is dumb, he is incapable of being a kid, he will never be normal, there is nothing WRONG with him. Honestly we don’t know if he will always have a feeding tube or severe allergies, etc. In my eyes he is about as perfect as his older brother or anyone else in this world. Yes, he needs a little bit more attention sometimes, but he does not need to be babied or treated like he is “different.”  

Tristan’s main issue is that he can not eat like a “normal” child. He gets most of his calories by a feeding tube in his stomach. However, he is able to eat a few things such as; strawberries, grapes, rice, beans, carrots(chooses not to), and broccoli . Rice gives Tristan many different options and variety of things to eat. We can make a cake , pastas, pancakes, bread, etc. Tristan is battling Eosinophilic Esophagitis, he is severely allergic to most foods. 

          Is it hard to cope some days? Yes, on days where Tristan has no energy, vomits , or breaks out in hives for no known reason. I feel like crying some days or ripping out my hair. I know I need to be strong not only for Tristan but for Aiden his older brother as well. Some days are harder than others, especially when we are in the hospital over and over for weeks or even months. Watching your child around other kids that can eat anything they want, birthday cakes, candies, pizza, ice cream, and many other things hurt. This is just some of the things that I come across on a daily basis. You learn to cope, you become stronger and stronger each day, and most importantly you get your child and family through anything and everything your faced that day, week, month, or year. 

You can follow Tristan's page: Here

You can follow Alphae Toys for Special Needs: Here