MUM WHINE POST ...WINE WOULD MAKE IT EASIER!
Mom updates are never as fun. We are working on the program as much as we can considering the circumstances... Liam and I have traveled over 16,000 miles in the last few months. We are getting more situated in TN but I feel super lonely. This program is hard and there is so much i need to do for Liam for speech, eyes, physical etc and I feel i am not cut out for all of it. Its a lot...giving up my career of 13 years, Our home we raised the girls in and just saying goodbye to HOME... Home is definitly where the Heart is I understand and know that but it is very very hard to go from comfort to unfamiliar territory! I find myself in my head a lot and wondering how I am going to pull everything off. I think working is a lot less stress than feeling like everything I do is what will either help Liam or I will fail liam ... I need my room set up for us to be able to work with him properly but that too is a process .... Everything requires that house to sell in Texas ..... God will send the right person at the right time. sometimes as a human we can't seem to let God be in control it is easier to try and take matters in our own hands but where does that get us!!! No where.. The loneliness when you have a special needs child and no friends. It is hard he doesn't speak and Chris works Nights sleeps days so its just the two of us and I would do anything for him to talk so we could have a conversation ... So he can say "why" a million times... or ask for a million things ... So I can say "no" a million times... He is great about getting his snacks and bringing them to me. He opens the fridge and brings me or shows me what he wants to drink. He loves to play on the front porch although I worry about him falling off a lot. He is so sweet he has been very cheeky lately . When it is too quiet it is so hard to get out of your head! I am working on paperwork to try and get some help but that too cause proven to be hard. Seems like these brick walls keep getting higher and thicker! AS of right now since I can't unpack upstairs b/c we are waiting for repairs, Can't unpack downstairs b/c we are trying to finish the shelving that has to be completed to have a place to put it all. My oldest has her own stuff so she can't visit . My middle child being in the Marines she has a hard time getting leave so she can't come either so it is like everyone has their lives but I am here with this empty pit in my stomach the one where i know I am alone.. my career is ending, my home will sell soon (hopefully) and I have to figure out who in the world I am. I mean my entire identity is gone! its like I don't have a who I am anymore. Chris moved and has a great job he loves and is learning and it seems I don't have a direction . I know this program will keep me super busy when I can do it all, but that to is something I can't even get into b/c i need the space... And since i can't unpack I don't have that! I applied for my notary but still have to wait on that Tennessee is very different from Texas on that part had to go to the clerk and get it all done and I have to wait for it to be signed off on this month. I need service on my vehicle but again I have nobody to do that I am so used to knowing people. having connections so I knew people wouldn't take advantage now it is all starting over and trusting people isn't something I am good at too many people have proven to me that true friendships are so hard to find! Liam is the sweetest but people don't understand when he doesn't like something, when he can't feed himself, when he still isn't potty trained the people serously stare when I change him. He can't dress himself or put his shoes on. He has been trying with the shoes tho... he does better with Chris boots than his own tho! I love watching him put on my sandles and Chris's boots it is like what kids do when they are learning. I see progress I do and that gives me some peace. I love seeing him do new things. He is 48 lbs now. I can't get over how big he is. Hie is almost 5 years old and I just feel like i am losing time ..I want him to have a real life. I hear so many stories of kids getting mistreated and I worry about school and worry about how someone might treat him I don't want that to mess up his sweet personality . With kids that can't speak it is hard b/c you don't know what really goes on when you leave them. I worry a lot about our age and what will happen if something happens to us. I am sure he would adapt but we are his people I worry b/c it is like when things change he doesn't seem effected like we do. So would he miss us if we werent there? if someone took him would he just adjust b/c he could never get away and tell someone who we are! It is a lot to think about and people don't understand how many obstacles someone with a special blessing has! It isn't like your normal get up, brush your teeth, get dressed put your shoes on.... It is a more difficult why? Because you dress yourself but then your 5 year old 48 lb kid will kick, squirm and laugh as he makes it virtually impossible to dress him. then when you finally tackle that he pee's and you have to undress to change them b/c as they get older the diapers aren't diapers or if you find some you can use like diapers he pulls the tapes off so when he goes bathroom it goes all over his clothes so now another change of clothes. he seems to always go out the sides and its really embarrassing if you are at someone elses house and they are like did he pee? the chair is wet? his clothes look wet on the side. what do you say and then you are embarrassed for him. So after dressing we have teeth to brush well he likes that but he likes to chew on the toothbrush so I have to brush his teeth and that is fun I have to hold him between my knees use one hand to open his mouth and the other to brush his teeth (he thinks it is sooo funny) I love seeing who he is becoming and the milestones he is able to overcome and tackle but I worry a lot about what more I could be doing and what i am going to fail at. other parents seem to get so much done they get the appointments they need and I fight every step to get one appt. I got a referral but the doctor was supposed to send another form and the new doctor 6 weeks later still hasn't sent the 2nd form for us to get our appt after our doctor sent our referral. I asked for a hard copy or email of the referral and of course still haven't gotten that. But found out the reason the new specialist has not sent anything is there is a Scott and white referral team and they still haven't sent it... UGH.... So i am probably going to have to make an appointment wiht a new doctor and start from the beginning and do what i have been doing for the last 3 years just to get the appointments i need b/c the referral team won't do their jobs. So if their jobs are to just do referrals I am a bit upset they can't get to them within 6 weeks when most everything is shut down in TEXAS in medical they make it impossible to do anything right now with COVID... it is such a process for everything . I want to pull my hair out. I need my computer and a desk but that too isn't done so I am unable to organize papers and sort things I need to be able to organize and work on medical things... seriously BRICK WALLS are coming down on my head and going to bury me! Selling our home would help a lot with our appointments we need to get scheduled for Liam for the Doman Method. It is very hard... But it does show massive results so it is worth it ... Just wish I was better at all of it! I am just not good at any of this stuff. I am good at customer service, talking to people and problem solving for people but for myself and my family I feel i fail daily!!! Kleefstra AWareness is this and i see a lot of parents posting their experiences and their milestones, the doctors, the specialist and all the things they have accomplished to help their children and I feel like I am behind in a shadow and making no head way ... Can't get disability can't even seem to get thru the application they make it as hard as humanly possible for people! I just want something to be easy just once!!! But guess that would defeat the purpose of hard work pays off right... Well I have whined a lot so I will at least say It was great to see Liam finally learn how to put his boots on! He is so proud of himself he does it a lot now and prances around the house and out on the porch with them .. .He is getting more comfortable with the new house and has been playing out side more. He is starting to turn over rocks and look for bugs again and has even started playin in the grass with no shoes !!!! MAJOR!! he wouldn't go outside without shoes before and now he is playing in the grass!!! WEll there is my boring, sad, whiney mom blog for September I will try to do better but I think you would rather the liam says anyway!!!
Thanks everyone for following, caring and supporting us.. Please wear your Kleefstra Shirt or purple on the 17th to support all kids with Kleefstra~!!!