Being a Special needs Mom

The first thing I have learned is my son is not different or normal he is himself. I hate when people say normal or different. I learned that my son is the strongest person I know. Some days I wonder where he gets it because he deals with more then most kids his age. He lives with pain everyday and hardly ever complains. We have more bad then good days. My son has something that no one else has he is undiagnosed. We live in a land of GRAY we call it because we don’t know day to day what we are dealing with. Example he can be playing fine having a great time and an hour later have a temp of 105 and be throwing up or having trouble breathing. Both of which have happened more times then I can count. I have to plan outings we can never do a spear of the moment things. We have to plan and pack because we never know. (Pack meaning extra GTUBE because that is his lifeline,meds,tube machine,extra bag,formula,water, sensory bag, food thickened and drinks there is a lot more). There are days when I feel so alone because no one really understands what you are dealing with. My husband is like any other man it is what it is. (I hate that line nothing drives me more nuts) Sometimes I think to myself are there other moms out there dealing with the same things? Because I want them to know they are not alone and you are doing an amazing job. Here are some pictures of our good and bad days.

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