Craniosynostosis

I should have took off for the East coast this summer. No, I shouldn't have because then when I noticed Ezra's head ridge I wouldn't have been close to his doc.

I guess I should just acknowledge that all my angst lately, my obsessive eating, my lack of energy...are all related to his appt with the neurosurgeon. The fact that your kid has a "mild head deformity" that could become worse and lead to neurological problems can be a bit of a bummer. The fact that he may have to have cranial vault reconstruction which is a confusing way of putting skull surgery that has to have a neurosurgeon and craniofacial surgeon in attendance.....well, that's just....depressing. Worrisome. Gut wrenching. Mind blowing. Unfathomable. Nightmarish. We have the appt with the neurosurgeon on the 26th. He will order a Cat Scan to confirm the diagnosis. I hope..I pray..I plead...I beg...that it shows something not so severe or better, nothing at all (though with his head ridge I don't know how it could be nothing). I can't allow myself to hang out in the place where the diagnosis is confirmed and we move on to serious head surgery on MY BABY. Despite not wanting to be there, I had to for his sake..I had to research it. I have to know. So I did. BTW, what he has is called Scaphocephaly. It is a form of craniosynostosis. I don't have the energy to explain this to you or even give you links. I don't even have the energy to explain how we arrived at the fact that we want to see a neurosurgeon about it. I CAN tell you that I spend too much time looking at other baby's heads trying to figure out how 'off' my baby's head is. I can tell you that there isn't an hour that goes by since we decided we needed to pursue this that my mind doesn't arrive back at this or linger on it somehow. I can tell you I haven't cried. What I have done is spend too much time with these knots inside of me..with this pent up anxiety that is making me lash out at my husband and children unfairly. I can tell you I feel like a combustable bomb right now...that could blow at any time.

I was obsessively researching for a LONG time and now I feel like I've reached some...point of calm. I feel like I know enough that should that diagnosis be confirmed I will have a grasp on what is coming next and what we do next. We find a neurosurgeon to operate. I want the BEST. I am debating a guy in San Antonio that pioneered doing this surgery lapriscopically ..if that's an option still. Ezra might be too old. I'm also debating Dr. Fearon at Texas Children's Hospital. He is touted as the best. I know that I still don't have to vax him and I know that I have to make sure they don't retract his foreskin when they put a catheter in him...you can get one in without retraction. I know that I can't take my cloth diapers because they will use disposables so they can weigh them after the catheter comes out. I know that his face will swell and so will his head and brain. I know he will have tubes coming out of everywhere and taped to him. I know he won't be able to open his eyes for approximately four days...even though he'll be awake some because of the severe swelling. I know there is a high likelihood that he will have to have repeated surgeries. I know what adults living without surgery look like and feel like. I know what the likely consequences are should we choose to not do the surgery.

I know all this stuff...but ask me if it feels real. It feels fake. I feel fake. I feel like someone else. This is happening to someone else. I feel cold and hot and empty and full. I feel scared. I'm so scared I can't even say it. I'm so scared I can't even think it. I'm so scared I can't tell anyone. I'm afraid. I'm afraid it's real.

I have reached this place where I can't research anymore til we have a diagnosis. I want to hold my baby and love him. If love could cure him....if my kisses could make him better then he would be. I want to pretend this isn't happening and hang out with my kids and go on vacation and be the happy go lucky family that we won't' be should this diagnosis become a real thing. We need this. I need this. I need normal so if after the Cat Scan normal isn't there anymore then I know I made the best of 'normal' before my life, my husband life, my children's life, MY SON'S life was turned upside down.

I feel like....I feel minimal. I feel like I have no feelings or time to give to anyone or anything that doesn't matter. My family matters. The rest is useless fat. It's....distractions. I feel like nothing matters...other than the people I love. I feel basic and primal. I feel like I've been pushed down to what my core is.

I feel like nothing matters but happiness. The happiness of my children and myself and my husband. For now.