The Best I Can

I met up with another Kleefstra mom. We met right after we found our Liam had Kleefstra! She is the other Liam mummy!!!
She and I talked for a while before I headed back home and it’s nice to talk to people in your shoes!!! She said something more than once and she said “I’m doing the best I can”. I listened as she told me her story and realize how similar our lives are in so many ways! But I also realized she was a lot further than me in the whole “I got this”. I want to have it , want to be able to say I’m doing the best I can. I want to know this is the best me. But in order to be there I have to find who I am and what I am best at! I feel I try to help Liam we’ve traveled , moved, and I still hit brick walls bc our lovely Scott and White and their whole system SUCKS sorry but I’ve been waiting for the referral my doctor sent to the quote “Referral team” over 6 weeks ago for Liam to get into specialist so now the last 2 1/2 years meant diddlysquat now I have to start over from the very beginning and get a doctor to see him , evaluate and then send my referrals when I have one doctor on maternity leave and one that has to wait for a referral team. This whole system is messed up. I have great doctors but the back office is horrid!!!! So Best me!! Well I can’t even get a referral so hard to think I’m actually doing my best. Do I need to march down there ? well the way they are set up and Covid that can’t happen so wait wait or start over and stop wasting time?!!!

I feel I fail him daily. I’ve lost countless hours sleep over the things I see can be done and wonder how I can even get in the door for the same help. Praying the move and having connections in Vanderbilt we might move the right direction !!! I just want him to have the best life I don’t want him to not have a life. While you are planning your child’s soccer game, basketball game , prom, wedding , picking them up from being somewhere they aren’t supposed to be... be grateful your children have these experiences! Count your blessings. Don’t complain about running around, about the things they do that are little things... I would give anything to know Liam could just go to school , graduate and actually have true friends who want to hang out with him, play ball, skateboard , go swimming, oh and teach him to drive a car. I would give anything to hear him say No, or please or why? To talk so much I can’t think straight and can’t hear what someone else is saying. This journey has shown me so much it’s opened my eyes to a different world .... it’s a lonely world but a different world. You have people who understand because they are there, you have some that understand but they go overboard and it’s nuts .. and then you have the people who are just CLUELESS. But it is 2020 what should I expect from general public... definitely not compassion right!

Then you try to be real and when people ask “How are you doing”. You say I feel lonely and their response is no more than you’ve said they before. Well have you ever been isolated from real life? From people like you? Have you had to figure out where your next appointment would be, what therapist you needed , how to fill out social security because it’s a 4 hour plus document for a special needs kid .... how to get help with diapers bc your child has outgrown diapers almost and you don’t know how you will afford them or where to even get help with them.... ! Do you have to dress, bath and feed your 5 year old? I mean people are sooo frecken mean!!!! I’ve learned who my real friends are and have learned that fake people stick out like a selfish , non- caring, rude, hateful, fake person. You learn to see the fake people who will be kind to your face and turn around and take crap on you. Does it hurt less NO. Do you worry what you did wrong and how you could have changed the situation YES! I have never felt so alone as I do now trying to organize and get what I need for Liam. To help him to just be able to be apart of this crazy mean world. I should be happy he doesn’t see hate I guess but feelings are a big part of growth and I don’t want him to feel the hurt I feel for him but I want him to have life experiences, A girlfriend. A family ....

So as people tell me how good I’m doing , how lucky Liam is, how God knew he needed us... I feel daily I don’t do enough!!!! I am failing. You know being a parent is hard , no owners manual there but trying to figure out special needs and be the best you can for that child . I just think everyday Lord how or why did you chose me ? I don’t want to fail this perfect , sweet happy boy. You trusted me now I know I need to trust you. I’m trying!!!!! It’s hard!!!! So that’s the mom blog of the month lol. Sorry for the blah but I told you it was going to be real. And it is!!! When you ask someone how they are and they say great or fine 98% of the time they are not telling the truth!!!! Just know to be real sometimes it means you have to tell people you hurt, your lonely, your sad, you struggle ! It isn’t ever easy when you try to save the world and some people will not be there when you need them that’s when you know they were never your friend to begin with!!!

But on a good note I Applied for Napa program pray we can get in!!! This could be life changing for Liam. Pray our insurance covers it and we can finally make more progress!! OH and Pray we get in .... Insurance isn't near as important as just getting in... :) Thanks for any and all support.. And for letting me whine a little... You can always just not read or shut it down lol..