Honest Mommy post

This is a post on my honest personal thoughts.

This is not going to be a positively optimistic post, these are my true feelings as a mom and my constant everyday mind struggle that I am trying to cope with. If that offends you please stop reading and I will post optimistically in the next post but today I just want to cry, be angry, frustrated and vent.

How am I feeling:

Simply stated I have reached the point I am questioning everything I am doing. Obviously the genetics are black and white. But am I making this out to be worse than it really is? He needs braces for his feet confirmed by the PT, the OT, the orthotics doc and the DO agree that it's best for him. We haven't gotten them, yet, but I know he is going to hate them and it's going to be the battle of the wills as he learns to walk "again" corrected. I guess I know he needs them but I still question myself. I want to make sure we do the best thing possible to give him the best chance at being "normal" whatever normal that will be.

I guess what really bothers me is everyone sees the improvement in his speech which I am super thankful for, but I don't call it a huge improvement when the only words you really understand minus a handful is the ones you tell him to say. For example he will go to the freezer, point at the door "this", we open the door he points to the chicken fries, say please he replies "peas" if he wants them heated he will point to the microwave (gasp yep we have one because when he wants to eat he wants it that minute and if you miss it, he will go hours refusing to eat) he then says "bot" for tablet  say thank you, he replies "tanks" and leans over the couch or trampoline and eats. I get it maybe I am hypercritical but I want him to be able to tell me when he is too hot, too cold, I'm hungry, thirty, feeling sick, etc. maybe I'm impatient but I'm sick of people telling me he is fine and normal. Yes I have gotten visibly upset and walked out of the room and have told Travis to figure it out because I can't understand what Dacotah is saying he needs. There are times Travis does the same thing, it's frustrating but it is the part of our life others don't see. They don't see me cry because I see him with a younger child and he just watches them talk as he sits quietly, it breaks my heart!

I sooo wish it were. I wish he didn't have the genetic problem which causes him to need the braces, which causes the chronic sleep problems, which causes the speech delays, which causes the low muscle tone. I wish he were 100% healthy and normal, but the handicap pass in the van reminds us that he isn't normal. He will have issues at school, home, with talking, etc. Our lives revolve around PT, OT, speech, visits to the orthotics, 8 hour trips to Charlottesville to get dental work, and countless hours of redirection, calming techniques, etc at home so when he goes to preschool he seems "normal with a speech delay". I wish for a moment they could see through our eyes instead of the one hour glimpse during therapy. Pat his PT was able to touch him for about 20 minutes out of his scheduled hour before he was done, he didn't want anyone touching him and went off to be alone. I come home and he cuddles up. I know he feels safe, and I wish I could hold him like that forever. I wouldn't change the schedules and working around it, I want to give him the boost with Early Intervention and help him as much as possible.

There are support groups for his genetics, everyone is afraid to tell their son or even their family and friends that they have Klinefelter's, heck I can't say that I blame them. I cringe at the thoughts of the next 12 years, puberty, what can happen and what happens in 99% of XXY patients. How do you tell your son at age 12 you need him to go to the doctor to save his sperm so hopefully he can have kids of his own when he gets married years later. Or you choose not to give him that option and just say best of luck. What parent wants to make that choice??? I know you say I have  10 years, but I plan early, the costs for it are in the thousands and there are no guarantees. I wonder to if he would resent us later if we chose not to do anything and let nature take its course. I mean really most men don't find out until in their 20s, He's 2.5!

But let me tell you what he can do

He can give you the biggest smile and hug you have ever had or seen. He can follow directions to a T.  He could climb Mt. Everest in record time (or the back of the couch, up the slide, over the jungle gym). He can follow directions like find your shoes, put this in the sink, or if he makes a mess he says "uh oh mess" and grabs a towel or toilet paper (ha for big water spills) and "cleans" it up without being told. He's mommy and daddy's big helper. He adores his big sister and refuses to eat a cookie if you don't give him two so he can share. He will babble, and he will scream and throw a fit when he doesn't get his way.  He dances to his favorite music "Light it Up" He is special,  he is our superman, and we will get through the obstacles!

So even if I question, second guess, get downright emotional, feel frustrated, angry, annoyed, excited, or any other adjective, that's okay. It's healing it's working through the pain as a mom knowing that it's going to take a little longer but there is nothing I could have done to prevent it. God gave us a son and He knew He could trust us to give him the best life possible and even when I feel discouraged as a mom I am thankful for our son! So together we are going to "Light it up and keep moving forward one step at a time"