Honestly

I know, I know.  I have not made our official "Cranio Surgery" post.  I've had a hard time writing it, honestly.  This last surgery, the recovery and the entire past two weeks have been some of the most difficult times of my life.  I'm doing them.  I'm living them.  We are hanging in there, but boy oh boy, are they hard.   I seriously feel like I've had to "check out" of my head for a while, just to survive.  I tell myself things aren't so bad and that Jayson is doing so well!  But as soon as I have a moment to myself, reality smacks me in the face and reminds me that there is a big part of our lives right now that is so unnatural, so horrific, and completely traumatizing.

Honestly

Jayson is doing quite well.  Remarkably well.  Most people would have no idea he just had a major cranio surgery two weeks ago.  Everything with surgery has gone according to plan!  No surgical issues, no healing issues, nothing!  He is sleeping well, eating some oral feeds, playing, signing/communicating and YES, even WALKING!!!!  He blows me away.  Jayson can seriously do anything, and with a smile on his face.  He amazes me more and more each day.

Honestly

He is in a lot of pain.  They said he wouldn't be.  And I think this is the hardest thing for me.  My son does not show pain.  He very very seldom cries, and his cry is nothing like a typical child crying.  He never once cried in the hospital during recovery, for example.  We knew he was in pain because of his high heart rate, his squirminess, his respiratory rate, and his breath holding/lack of breathing.  But at home, he showed he was in pain.  I'm not sure if this could potentially be a good thing!  It is healthy and "normal" to be upset when you are in pain.  So maybe the fusiness, the complaining, the crying, and the silent tears are really a blessing?  But for me, each tear cuts into my mommy chest and leaves a gaping wound.  I hate that my baby hurts.  He has suffered more than any human ever should.  I wish so much I could take it from him, or communicate with him and let him know it won't be like this forever... but I can't.  Because honestly, it might be. And he just doesn't understand.

Honestly

I thought things would change and improve quickly and immediately, just like after Chiari Decompression surgery.  But progress has been slow, and that's okay.  We are slowly adjusting the space in his skull.  It will take time to truly remove pressure, and then the brain has to decide whether or not to move and fill its extra space.  But I really thought J's seizures were caused by the pressure.  I hoped they were.  I hoped that even a slight change in pressure would perk his little brain right up and the seizures would stop.... forever.   But, they didn't.  They were bad in the hospital.  We are thinking they are the culprit that made him stop breathing 6 times one night in the hospital.  And yesterday, Jayson had at least a dozen seizures.  They were bad ones, and made him cry and scream out and jerk and hit his poor sore head.  I was holding him during one of his seizures and he jerked super hard, and somehow his distractor out of his head caught on my sweater and pulled as he jerked.  Poor poor poor baby.  And he's likely seizing right now in his sleep beside me, as he is groaning and jerking.  I hate seizures.   I hate them.  I really really hate them, and they may not be going away.

Honestly

I'm proud of myself.  I have done some very difficult things the past 2 1/2 weeks.  Extremely difficult things.  I knew I could do it because I had no other option, but I'm holding it together suprisinly well. I have learned to go to another place in my head, almost check out.  I've turned into kind of an avoider the past couple of weeks, but it's a survival tactic.  My son has a ginormous scar from ear to ear.  He has two open oozing wounds caused from pressure points in the back of his head.  He had two metal rods extending out of the front of his head, with skin wounds that bleed and discharge throughout the day.  Quite honestly, it's remarkable I haven't completely lost it and that I manage to take care of my boy and my family without collapsing mentally, emotionally and physically.

Honestly

This is hard.  Damn hard.  And I'm not strong enough.  You know that saying, "God doesn't give you more than you can handle?"  False.  Completely false.  There is a popular blog post that I like about this very topic.  I guarantee that God has given me way more than I can handle.  I am barely hanging on.  This isn't living.  This isn't thriving.  This is hardly surviving.  And I'm merely surviving, thanks only to God's grace and His love for my family.  He is giving me the strength to get through this, but I am not strong enough.  I am suffering from quite extensive PTSD from Jayson's chiari surgery, the lack of care he received several times that first year in the hospital and how he similarly was neglected by many doctors who didn't see this new condition years ago, the fact that he stopped breathing several times in the hospital on my watch in the middle of the night two weeks ago and would not breath in or respond to stimulation much like the 3 times he stopped breathing that first year of his life, and the simple fact that it is once again winter season and we are shut-ins.  I am not happy.  I am not well.  I just simply am.  I have to hold my child down twice/three times a day and listen to him scream while my husband turns his distractors.  I have to witness my child flinch any time someone gets near him because he's afraid they are going to hurt him.  I have to clean all of my son's healing and open wounds twice a day.  This also requires me to hold him down, use gauze, Qtips and hydrogen peroxide to clean his wounds, and then put antibiotic ointment all over each wound as he shudders, fights and screams out with each touch.  I have to stare at the wounds, and smell the discharge and dried blood every time my precious boy sits on my lap or wants to cuddle with his mom.  I live my life with waves of nausea combined with a pit in my stomach that aches any time I see, hear, or think of the horror my child is going through.  I witness the huge strain on the relationship between my son and his daddy because he can't understand why his daddy keeps holding him down, turns the rods and in his head, causes him pain and doesn't respond to his clear cues that he doesn't want to do this anymore.  This is my life.  And I know it is just temporary, but it is hell.

Honestly

I worry a lot.  I worry that the pain won't get better, or that the space in his skull isn't enough.  I worry that this surgery and the associated care and pain will cause lasting emotional damage.  I worry things will never be the same again.  I worry that things won't change for the better.  I worry that we may have to do this surgery again one day.  I worry that other major health concerns could be missed, just as this one was.  I worry that it might take me a long time to recover from all of this, just as it will for Jayson.

Honestly

I have not allowed myself to acknowlege how difficult this has been.  Not at all.  I haven't talked about it with anyone.  I'm fearful that my confession would imply ingratitude.  I do not want God, nor anyone, to get the idea that I am not grateful every minute of every day that my son is here and is doing so well.  We discovered a life threatening condition, one that was greatly affecting his life and his development.  There is treatment for this condition, and surgery went incredibly well.  I have so very much to be thankful for, and truly my heart is full of gratitude.  I would not change any of this, because it is for the good of my son.  But tonight, I felt like I needed to be a little transparent and honest.  I am grateful, but I am suffering because my son is suffering.

Honestly

I know I will be okay.  I have been through other hard things, and I came out okay.  Not without a lot of scars, but I was okay.  I hope one day to be more than okay, but for now being okay is good enough.  And I think Jayson will be okay.  He is in pain.  He is experiencing high anxiety, fear and confusion.  But I really think deep down he understands we are doing this because we love him. There is no other way any of us would get through this.  Love, faith, and God are getting us through.  And one day this will be a memory, a horrific one, and we will realize that we all came out okay.

Please continue your thoughts, prayers and encouragement.  They give me strength and perspective.  We are truly blessed beyond measure to have our angel son and so many friends and family members who love and support us.  I honestly don't know how we would get through this without you.  Thank you.

Much love <3