On my mind

The one thing you are never told when you receive a life changing diagnosis for your child; is that everything will change. Nothing will remain the same.

I have learned this the hard way, like most of us moms have. We started out with a simple diagnosis of CHD ( I know nothing simple but compared to now it was) add a year later and wow. He went from being this little guy running around playing with his brother and sister yelling our names, to being labeled as severely disabled. I have grown to hate that word “disabled”. You sit here day to day wanting to pull your hair out. Phones calls, dr appts, scheduling this and that, therapies. You are not you anymore let’s be honest. You don’t matter, you become last which is fine because seeing that smile on their face is all worth it. What people don’t see is the bad. The tears, I remember almost every time I cried in front of people and im not a public emotions person. Sitting there one day being told hes the sickest child in the ICU and they aren’t sure if he will make it. Most people don’t recover from this much blood infections. Having been told that they aren’t sure if he will wake up when he first got injured, to being told his life will never be the same. Yelling at people that they are lying, ( I have tears as I write this) screaming at your husband to fix it knowing there is nothing he can do he is hurting just as much as you are. Patience. Patience becomes your best friend, you learn to accept the little things even though they are not so little to you. That first time they hold their head up is like seeing it like it was the first time they ever did again. What we get happy about most parents just shrug off. As we speak im happy that we have avoided a flu season (please God don’t let me jinx it) for the first time in 3 years. SAY WHAT!!!! Just knowing that you crave having normalcy for your child, you want him/her to run around and get married and give you grandkids. In reality sometimes that won’t happen, sometimes you don’t know how long you have with them, but you want that time to be amazing. You want to know they are happy and smiling all the time but then you see they hurt they feel your stress they feel everything you worry about. Dean doesn’t talk but he has his ways of communicating and I love hearing him what I like to call bitch at us! He groans when he wants to be changed and by God he hates a poopy diaper. He laughs now so loud its awesome to see. He loves to be around people and hear chaos. I know one day it wont be like that but for now whatever that child wants he gets! He loves being around his brother and sister and they have been amazing to him.  I just wanted to really say, to you Moms you are where I am you are not alone. You have a team reach out and no one will ever judge you. To the moms who aren’t in our position but know someone who is or is friends with a special needs mom. Reach out. Tell her she is amazing, tell her she has you and you will be her shoulder when she needs. If she tells you everything is okay 99% of the time it isn’t, that day she probably had to yell at someone.