I will warn you. This isn't an update on Wesley. This is more a journal entry for myself. To get this awfulness off my chest.
The shock of Wesley's diagnoses has warn off. I'm emotionally and physically exhausted from trying to keep my sh*t together. If you must know the reality of it all, I'm not keeping it together. I don't really even know what "it" is anymore or how "it" is supposed to be contained. Like some things, I have to groom and make myself socially acceptable to keep from scaring others. I have to keep myself from ugly crying to each person who asks me how I am doing. I want to break down. I want to cry and I do. I cry before I go to sleep most nights, if I even go to sleep as I have been, having strange bouts of insomnia that include half sleep and waking up startled.
I want to cry as I watch my son eat cereal for breakfast with this beautiful innocence he has. I want to cry as I scrounge up some energy to actually even feed myself something other than coffee. I dig a little deeper when I have an hour and a half of sleep before forcing myself out of bed to start the day and making sure we have everything to have an easier, successful drive and ERT infusion and back again. Like I did just this morning.
How are things supposed to be the new normal when the new involves things that are hard to accept? How is that supposed to work again? This disease is stupid. This disease has hurt my momma heart more than anything I've ever been through and for anyone who knows me personally knows that has been a lot. I love my son more than anything that's ever walked this green earth besides Jesus himself.
I know that MPS is part of why he is the amazing person he is and I wouldn't change that. Just the living part. The growing up part. The regressing part. The part where they lose the ability to recognize people they love. Wesley is still a long time off from that hopefully, but that heartache is still there. It's some day. It's still some day. Tomorrow hopefully will be a better day than today was because my heart is tired. I have moments where I lose my hope and today's been one of them. No parent should ever have to live with knowledge like that, because the time just goes quicker and quicker; faster than before. Please just pray for me as I work through all of these emotions the best I can.
I know that MPS is part of why he is the amazing person he is and I wouldn't change that. Just the living part. The growing up part. The regressing part. The part where they lose the ability to recognize people they love. Wesley is still a long time off from that hopefully, but that heartache is still there. It's some day. It's still some day. Tomorrow hopefully will be a better day than today was because my heart is tired. I have moments where I lose my hope and today's been one of them. No parent should ever have to live with knowledge like that, because the time just goes quicker and quicker; faster than before. Please just pray for me as I work through all of these emotions the best I can.
No comments:
Post a Comment