Can't Say I didn't CRY

2022 is half over and its been a whirlwind. I honestly can't breath most days and I rarely sleep anymore. Liam sleep habits are weird. he appears to sleep but its not a good sleep and he can still keep going and going the kid is amazing! But lack of sleep isn't always good. The specialist have been doing test on his brain and sleep studies of course EEG are all abnormal but they say that is not necessarily abnormal for his condition. Just abnormal for neurotypical condition. Liam learns something new weekly it seems.. he finally has the "B" sound, "T" sound both have been hard but he is able to do it. He said Bye for first time last week was super exciting and he is now able to say "Bath" although Dath still comes easier. He tries so hard! He wants to communicate he wants to learn and the frusteration when he tries and it doesn't come out right breakes my heart for him. He is loving, kind , and so funny! he makes me laugh often and with all the planning, scheduling, trying to get people to pay what they should pay without me having to spend 40 hours on it and lots of money in postage mailing proof of insurance payments to get it paid by the HSA ... it just seems like with a special needs child the government/ and anyone involved wants you to work so hard for it so you earn what you should already have. i figure most people just give up b/c it seems impossible .. I just can't give up on him. Don't know how long God will share him with me and I just can't give up. But honestly my brain, my body, my mind , and myself are struggling. If finally have a good team but I am so overwhelmed working, keeping the house up , keeping the pool up, keeping up with therapy dates and times, keeping up with doctor appts, test schedule, trying to get information for schooling for him and that is another major task! I don't get it all don't know what he is totally entitled to and don't honestly want to put him in school when he can't communicate and isn't toilet trained .. I know it will be an inconvenience for the teachers and don't want them to take their frusteration of not wanting to do something on Liam! he is so sweet and I don't want his amazing personality to be injured by someone not willing or not want to ! The one thing Liam loves as much as Santa is Bucee! So we found out two locations are opening in Tennessee! Exciting... WEll one is opening on June 27th so we drove to Crossville for a few nights that was much much much needed and are waiting impatiently for Monday 5:55am for the GRAND opening of the new small but Tennessee Bucees...The big one that will be bigger than all of them will be opening in Sevierville next year it will be over 77000 square feet .. hope we can make that one too!!! Life with therapy has been a major improvement for Liam but has mean a lot of exhaustion for mum! Today we took him to see horses the lady there had been there 35 years and allowed Liam to ride for Free. he really was tense at first but then relaxed and truly enjoyed himself! She truly blessed this mum and honestly I cried! I don't think i have seen him enjoy somemthing (other than bucee or santa )Like that in a while. he was balancing and honestly riding!!! they took time with him and she said they do things like that all the time there . they have a 6 week camp they do for free for kids with special needs. hope we can find something like that near us! I want him to have a passion for something . She invited us back tomorrow before we leave and so we will take liam back over there and let him ride Hawk again before heading out! Such a blessing .. something so small but for us was so big! . School is a major stressor and i am just not sure what to do about it. Life has been interesting but i am not going to complain even though I am exhausted I am so happy that he is getting help ... getting help is less stressful than the TEXAS agencies who thought we weren't important enough b/c we didn't have autism , who thought our child didn't deserve help b/c we weren't in the large group of what they knew something about. The non return phone calls the we can't help you we don't service your area. To call back with the area we know they service and use grandma address to be told that they still wouldn't !! Couldn't help us. They could but their narrow mindedness meant they DIDN'T WANT TO DO SOMETHING OUTSIDE THEIR COMFORT ZONE...Which means to me MY CHILD DIDN'T MATTER ENOUGH And they shouldn't be doing their job if they don't have passion to truly help kids of all disabilities to grow and be the best they can be. Just because my child didn't have autism didn't mean he wouldn't benefit from the same treatment for his apraxia speech impairment!!!!! Thanks but no thanks for putting me behind for 4 years b/c you don't care!! would call out all of the 8 agencies I emailed, called, begged pleaded but not worth it!!!! Honestly pray others won't be rejected and hurt the way we were at the beginning of our journey with narrow minded places in Travis and Williamson County!!! (burnet county had nothing to offer and nobody certified so had to go to counties neighboring ) we used an address in these counties to try as well. A lot of the ones showed they serviced Burnet county until they found out we didn't have something common!!! Anyway.. enough complaining about the crap we got in our home state.... Blessed Tennessee has loved us, welcomed us with open arms and people have opened doors and gave us the best medical team for liam... even though we are 4 years behind we are so grateful to have a TEAM at High Hopes that CARES FOR KIDS OF ALLLLLLLL DISABILITIES) To have our medical team at Vanderbilt who honestly love the challenge and look forward to helping us. Our Neuro Team!!! Dr Carriza and Dr Ross ... We have a GREAT team Dr. Eidson our pediatrican in Goodletsville , our ENT Dr Wootan ... Audiologist. all of them have made us feel cared for and not an inconvenience!!!

I will say on a positive Note Dr. Kelly Offutt she is a one in a million... she is the reason we even got a diagnosis ... I will say of the Texas people we have her to thank for getting us a diagnosis. our Cardiologist, Delayed Ped. and Genetic Doctor at Scott and White McLane were top notch and I couldn't have hand picked a better group. Our ENT in Marble Falls Scott and White was GREAT too. I am not going to talk bad about my medical team just wish the referrals they put in meant something with the agencies in the state that chose to ignore and dismiss us.

So onward we go thru the rest of 2022 ... I do better at letting Liam update but this is the drama and daily life of the McDonalds. if I don't call or text or stop by it is because : Monday OT/Speech 7-10 home at 11:30 work till 3:30 other job till 6, insurance stuff till whenever i can bet it copied or worked

Tuesday work 8:30-1:30 Music 3-4 (nashville) home dinner ... pool , garden Liam stuff work...

Wed work 8:30-1:30 , work 2nd job (to keep from falling behind) outside stuff, Liam stuff, always bed time before i can even look up

thursday work 8;30-1:30 Franklin PT 3:15-4 dinner, home bed Friday Work 7-10 Music nashville 11-12 home work.... dinner bed

Saturday Work/payroll Sunday no telling ... yard work, pool work hoping I get to sleep in for another repeat. This schedule doesn't include doctor visits or anything else that might pop up!

I honestly am just exhausted and sorry if I can't talk all the time but I love you and I care and I try ...

sending love to all of you that have cared about us and supported us this medical journey is exhausting and expensive ... Thanks for always shopping with me on pampered chef it is honestly a blessing and the funds are direct deposited into his savings for things we have to pay for !! just paid $654 for therapy thru May and have $150 due now. have $3000 due to Napa need to get online and pay so I promise your orders and T-Shirt funds are spent helping him get the help he is getting ..

he wouldn't be saying bye, hi, low, bath, liam, da, ma, without all of you! I know it seems like it isn't a lot but to us it is huge! Thanks for not giving up on us., THanks for continuing to love us I know as years go on people move on and forget and the ones that haven't forgotten us I love you more than you know

Thank you!!!