What do you do when the Dr tells you they don’t know what is wrong with your child. Back story my son has had what the Dr call a million dollar work up not once but twice. He has many different symptoms. (which I will not go into) We are at the time in this whole process we hoped we would never have to deal with. We were told at our last appointment there is nothing more they can test for and we just have to treat the symptoms. That has become an even bigger processes because they have no idea how to treat the symptoms. I would not wish this process on anyone. This has been the most stressful thing we have had to deal with. I am watching my son have to deal with way more then a kid his age should ever have to deal with. I would do anything to take it all away. #motherslove #what #why #love #parenting #unknown #grayarea #specialneedsmom #specialneeds
Why is my 7 yr old (special needs) son so cuddly and always wants to be next to me? If I leave the room I have to tell him where I am going and what I am doing. When I leave he has a panic attack. He is also waking up in the middle of the night saying he wants to cuddle. He also starts freaking out if he calls for me and I don’t answer him. WHY????
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.
Everyone know the fun stuff like baby first words, steps, tooth, crawling, day of school. No one talks about the nights your are up all night with a screaming baby just because they can. I remember when my son was a baby he would scream all day and (I mean all day) we could not figure out why for like 4 months. He screamed everyday all day for 4 months many days I would just sit and cry with him. When you talk to other moms they never tell the bad stuff I wish there was a moms group where you could talk about it all and not get judged. Maybe someday?
We are one day into our summer vacation and I am already getting the (I am bored) With the face. These little Monsters expect me to stand on my head and entertain them all day mind you they are 14,13,and 7 mostly self sufficient. I say mostly because are they ever self sufficient? I do all the cooking cleaning and laundry everything a good mom maid dose. I was a good mom and set up a summer schedule with equal amounts of summer work, reading, fun outside, chores, and screen time and they are still bored. Basically what I am trying to say how do I get my school district to implement year round school? (J/k) when I was a kid I spent my summers outside all day everyday in a pool, riding my bike, playing with friends and as I got older it was still the same but instead of playing with friends we just hung out. The kids in this day and age have to be entertained all day or have a screen in front of them. How do we change this?
I wake up on Father’s Day at 5 am because my smallest Monster darted across the room jumped on me and said its morning time to wake up. By this time my amazing husband was already at work. So I spent most of my day thinking about what I can do to make his night a little easier when he gets home. I then thought did he do this for me the answer is no his exact words were ” you are not my mother” my response was WHAT I am raising your little Monsters. You can’t plan something. I am making him dinner and making sure he has nothing to take care when he gets home also letting him sleeping in. I guess that is just how it is.