Wednesday, September 9, 2015
As most of you know I took some time off from the world of blogging and social media for the most part to deal with life. Every once in a while it has to be done.
Abby just started the 5th grade. Yes seriously. Our baby is in the 5th grade. Almost unimaginable isn't it? Considering they told me when she was two to take her home and make her comfortable and that she was going to die. To all those uneducated scientists that ruined my life that day
The one thing they did tell me that day that was absolutely true, although it also sent me into a complete rage was,"There's not much we can tell you..You'll have to go on the internet and find other parents with children like yours. Special Needs Communities can be incredible."
I remember at the time thinking that the doctor needed to be hung upside down from the 10th floor by his feet. What a jerk right?
I think he may have prepared himself before that meeting almost 9 years ago by reading the same paragraph in the back of an Autism book from 1983 that I had when I figured out that Rett Syndrome was probably what she had a few month earlier.
It was the only thing he said that day that was true. I wasn't much of an internet person at the time (It takes me a few years to catch up on any trend. lol
Who I am today and who I was on that day are two incredibly different people. I remember going straight home and doing as I was told as far as not Googling Rett Syndrome or anything about it. Seriously Rett can be such a bummer. Especially since the internet is not regulated and anyone can write anything they want about anything. Like the bathroom wall in Jr High. Back then the idea of talking to strangers, especially at that time made my stomach turn but I gave it a shot.
6 months after I can say I had friends for life. All except one, at that time I had yet to meet. There are those moments in the beginning when you feel so incredibly lost and alone. Having someone to call or turn to makes all the difference in the world in putting your heart and mind back together. I never once had a parent who had been there not take my call, night or day. Not once. It did not take me long to become one of those parents.
Soon after I started my own support group when I saw that all my friends were friends with each other. They also had never met in person. I can truthfully say that I have learned more from Rett Syndrome parents and Special Needs parents than any doctor has every been able to teach me or get me to understand. Having someone say its okay to be angry. To say that you have every right to feel cheated. To have another human being that can finish your sentences on the very first conversation. That happens. Its real.
I guess what I'm trying to say to those of you that are new to this journey....There are people that are out there. There are people that do get it. There is a bond when someone knows your heart and soul the first time they lay eyes on you or hear your voice. Sadly, many times friends and family just don't get it. For a very long time that made me very sad until one day I wondered how I would feel. I'm a fixer. Most Moms and friends are. What do you do when you just cant fix it? No matter how much you would like to? Most pull away and avoid. They avoid their hurt and they avoid your hurt. Most of them are not the soulless jerks they seem to portray. Its a defense mechanism, Fight or flight. Learn to forgive.
If you are new to this there are people out there that get it. They want to help. They do it because they don't want to ever feel as lost as they did when they started this journey. Healing hearts heals hearts....for everyone.
If you are a family that has been in this for a while and holed up and buried yourself because you didn't want to deal with anyone else..that is completely understandable. If you ever need anyone. We are here.
This is how we fix it.
I have many links on the sidebar to the right. If you can't find what you are looking for please feel free to contact me.