In and out of my head- our Trip Abroad and my thoughts

Life-kleefstra mum Well we did Paddington today he was so excited . But to watch all the other kids be kids and him just wanting to see Paddington was so hard bc he doesn’t interact and didn’t know ow to be apart of the actual events going on around him. It’s days like this that I honestly feel so heart broken. He found the suitcase but wouldn’t hold it so I allowed another child to have the honors of finding it. He wanted to leave half in and acted like he needed to use the bathroom. As all the other parents participated with their children I felt Chris and I were doing what the kids were supposed to be doing and Liam just wanted Paddington and or to leave. It’s events like this that truly make things harder .

Shrek he was the only kid and they kept asking his name and he wouldn’t respond and didn’t really interact there either . It was very fast paced and figured he’d enjoy the Paddington one at least but he just wants to see the characters and move on.
He had a few throw down fits at the beach bc he didn’t want to be there it actually lasted way longer than most upset moments . I allowed it to play out to see if we could redirect but he was just not going to give in. I wish so badly he could truly enjoy things but then maybe what he enjoys is not what the world enjoys . I know screen time isn’t the best but he honestly doesn’t use it like most . Except his Minecraft game he js always researching and learning things .

Liam is such an amazing kid I just want him to be happy and have as much of a life as possible. But I guess all parents want that for their children.

So my last few days I was in my head a lot and wishing Liam was able more than normal. Not don’t get me wrong I always want him to learn , grow and succeed but each day he grows older and I see how much he still needs to learn to do. Or build the strength to do. People see him and don’t see his disability bc he looks strong but hypotonia causes so many issues . I truly hope and pray he will have a life ahead of him as an adult. I’m not a young mom so it’s my fear daily of what will happen if I am not here anymore . When we travel I seem to take all the pictures . I’ve always hated the way I look in pictures . But i also don’t want to not exist on a trip and looking back sometimes it feels I don’t exist and like I was never there . I remember me being there but if I wasn’t here would Liam. Pictures after I’m gone is the only way for him to remember me or see me. And that breaks my heart . I don’t want to live life without him but I do want to outlive him in the adult life bc I don’t want him left alone or ever mistreated . My heart just hurts and the more he grows and each passing year I worry more . I know he’s come soo far but he has so much further to go. I know he’s been prophesied to that he will be healed… I do believe but healing comes in many forms so that also is a mystery.

I feel my life shifted when we got his diagnosis and moved to Tennessee all of a sudden finding awareness became a big goal… with the help of a friend and fighting we got Kleefstra awareness day proclamation in the state of Tennessee and also in Arkansas . That was a huge step and it felt good to have completed such a huge task.
When visiting the UK I noticed the awareness there was lacking as well. We passed out bracelets as we drove 1406 miles around the country on a Paddington Bear hunt to allow Liam to see his favorite bear as we enjoyed a few sites visiting family and friends along the way. We of course started out in Cornwall we flew over to help pack and clean up from Nan passing away. So sad he didn’t get to say goodbye but Liam got to visit and see his great Nan every year until Covid and then we were shut down .

Thankful for a friend who helped us with our flight so we could have this time with family and time for our family.
Liam got a few 1st this trip and it was rewarding as I got a few first myself . We got business first class that was an experience for sure. And honestly Liam will be sooo upset if he doesn’t get it again lol.. But that was a thing that was just a blessing for that trip.. Explaining that in the future … Well we will see what the future holds..

Life with Liam teaches me something new all the time.. Maybe he really is the normal one and we are the ones that need help… I know God has him but this momma heart worries about and for him daily .