Daily struggles....Its the little things.

December 10th

Life with Kleefstra has loads of crazy days that nobody sees or understands he looks great yes , but when it comes to holidays you get to get a picture of your kid with a Christmas tree, Santa, your kid will say cheese, The little things you take for granted I miss everyday. The non stop why, the non stop jibber jabber, the hey this hurts hey I want this, hey mom look at me. Oh and the I LOVE YOU MOM. The older he gets the harder it gets watching him grow but not if that makes any sense at all. So funny blogs go to Liam says.... for the inside and outs of how hard it is having a sweet child locked inside his own head bc he can’t talk well that’s what you will get from my blog. Sure I will have less followers . I love the little personality that he has his silliness his goofy little habits but it’s so hard to see other kids and realize how much he still can’t do . No I’m not comparing ...or complaining just informing... it’s the little mile stones that you enjoy. But taking a picture your camera better have super fast speed or live and no delay bc you lost your chance . Or try family get togethers taking a picture you get one shot and he’s done. I know you say that’s most kids but it’s different I promise . Now give him the moon or bugs and we’ll he’s going to be content for hours . I’m blessed he can walk, his organs are good his heart PFO is closing on its own , he survived immunization and to be honest he’s really a good kid but I was told too good is a red flag . Kind of sad a good kid is flagged for something not right.

At Christmas “Well” kids anticipate getting up to presents under the tree and the surprises that come with jammies, hot chocolate and presents... Kleefstra steals that from him. He doesn’t get to be excited because he has no clue what in the world is going on it’s a normal day same as yesterday. Today we took Liam to walk way of lights he looked he seemed to like them but he would rather point to the moon he could care less about Christmas, Easter, thanksgiving . Guess I should be grateful that he doesn’t care if he gets a million presents 🎁: to Liam he just wants to play with a bug or annoy his daddy bc it’s fun. He likes to scream and point when daddy poots and he thinks it is hallarious so he is a boy for sure. I try to be grateful for his happy , loving Self but will say it is hard to watch other kids and see what they can do and praying he will be able to do those things even if it takes him years longer. How about prom, driving a car. Staying out too late with a girl we don’t approve of. Get married , have kids , grandkids. And not have to worry who would take care of him if something happens to Chris and myself bc we aren’t young this time around. Every parent wants their child to get to enjoy being a kid, teenager and adult . But In the same I love he cant feel hate. He doesn’t understand being different and doesn’t care that he is different . His life is great! Our life changed dramatically with the diagnosis his didn’t he is still loved very much and we love each day making memories so we have pictures and memories of every day we are blessed with him. But I will be honest my heart hurts a lot I have good days and bad days. I look at his smile and it makes things seem better but at the same time I see what potential he has and how smart he is inside and it’s so hard to see him struggle to say I want that mom that that by pointing his finger trying to telling me what movie he wants, what snack he wants if he can’t reach it to get himself .

When he is all done he does know that “sign “ very well but sometimes he is always all done.

He can sign more, all done , thank you and he blows kisses now. He’s slowly trying to show us he has to go to the bathroom , but as of right now he has already gone by the time he tells us. He does use it some in am and some in evening if I get him there and have him sit after food and drink. It’s hit and miss he just doesn’t know what or how to tell us he has to go so when other parents look at me bc he’s not potty trained well your little angel can talk so that’s the difference . Non verbal kids take longer for lots of things and that’s another thing that takes a long time .

I watch people Online complain constantly about their kids not shutting up, or the things they do, be grateful imagine driving 500 miles and not one word!! 500 miles back nope no words again and awake the whole way just looking around trapped in his little sweet brain. I talk but he just looks . He makes sounds I love when he makes sounds it’s the best noise. I love his hyper moods at bed time where he goes goofy and wants his back massage and brings his lotion and oils to me. I love his personality so much !!!

I want so much for him as he grows up. Praying this program will continue to show some improvement but it’s very hard, the program needs more than me . He is running better, he seems to feel better but hard to say since he just got over the stupid immunization reaction. What a nightmare . Another thing your kid can get a vaccine have a low fever and mine has to be sick 18 days! Your child gets a cold or 48 hour virus mine has to suffer weeks! Your kid can go to the beach without worrying of heat stroke Liam doesn’t sweat so we have to take it in small visits and make sure he stays cool or go in the winter he loves the birds and the water so much. When you go to the doctor they check your child and if they have fever it shows on their thermometer. Liam’s Norma temp is 96.4 fever for him is 98.1 . Your norm is his sick. Doctors don’t know anything about it so every doctor I have to educate . I pay them to treat a child I tell them how to treat what fun. I even go to collections for that ! Kind of sounds not fair right!!!

Each day I wonder if this was from my accident when I was pregnant with him. It kills me thinking that I didn’t fight the doctor enough on the X-ray and that it damaged his development and caused him to have this missing link. Sad thing is it didn’t matter that he didn’t care if Liam was ok. What grounds do we have none. You just do what they say in the ER and have no say. They know everything your stupid . That doctor was so hateful he didn’t even want to check for Liam heartbeat. Of course unless you are super rich you suck it up and deal with the card you are dealt that doctor gets to go to bed and never worry about you bc he didn’t care about you to begin with. Hope he doesn’t get married and have a pregnant wife in a wreck I would NOT wish that nightmare on Anyone.

I think the hardest part so far is going to a public park to have parents literally leave or move their kids to a different area bc your child is different . He wouldn’t hurt anyone he loves watching other kids play. He jumps and claps and now he can jump on two feet instead of back and forth but it seems to scare other parents bc he is so excited I guess. I don’t know people are scared of the unknown.

So all and all I sit and think about all of this all the time when he has a bad day I want to scream and throw something bc he doesn’t deserve this. I know God gave him to us and he has a plan I know liam will change lives he has already changed ours and everyone who gives him a chance to love them. So when I vent don’t think I’m complaining just merely trying to explain the struggles , the heartbreak, the good times , and bad times of struggling with special needs . I love my Liam I wouldn’t want him not to be Liam personality wise for sure. But to hear him talk would be amazing.

Thanks for all the love and support!! What’s next we shall see.

Sent from my iPhone