time is a thief

these past few weeks my posts have obviously been a bit few and far between. that i because honestly time is such a thief. minutes turn to hours turn to days and before you know it another month has gone by. i’m sitting here this morning with a little boy who gets mad if you don’t help him sit up on his own. that is right, my little bebe boy wants to sit up. when did that happen? this saturday will mark 6 months of otto. i’m just stunned. never in my life has time gone so fast. so fast that it seems almost cruel.

if someone told me how incredible the 5 month mark would be i think i would have had twenty more babies. ok maybe not twenty five maybe just my one but honestly this stage of his life has just been the funnest. he has very clear emotions, likes, dislikes, routines and personality. the way his face lights up when joe comes home and sometimes only wants me is enough to make me burst into tears.

the older he gets the more joe and i feel like we are figuring things out to. there are days that go by when ottos health issues don’t seem to be here at all and then there are other days where it feels like they are sitting heavy on my shoulders. those are the dark days where you just have to keep swimming against the waves to keep your head above water.

i had a really amazing conversation with my former youth pastor (now official pastor) about some things while driving to an appointment one day. i told him that during those dark days of fear for the future it’s hard to stay safe. like i know exactly how to hurt myself deeper by googling things i shouldn’t google. it’s like an emotional form of google cutting. feel the pain, get some sort of release from the black and white pages spewing information of worst case scenarios. i guess in some ways i feel like if i know the absolute worst cases i can rationalize how to deal with them even though that might never be our specific case.

he told me something that has really stuck with me in the months after that conversation, “God loves Otto and nobody loves Otto more than God”. at first my mom reaction was like ain’t NOBODY love Otto more than me. but then it really put things into perspective.  if God loves Otto more than me, i can’t even fathom that amount. because here on this earth I would do anything for my son. I beg to take his place and I easily would. to think that someone loves him more than that, more than me… brings comfort that I can rest a bit. knowing that this unfathomable love for my son exists. and even more unfathomable is that it exists for me too.

we do not know what our future holds with our sweet boy. we do know that february 13 he is finally getting a Gtube which is a feeding tube that goes directly into the stomach and we can finally get that tape out of his face. he is tolerating his feeds so well (reflux might finally be going away) and he is getting big enough now where he knows it’s there and plays with the tube. sometimes he even chews on it. i’m like otto baby, if you are going to chew on your feeding tube you might as well just eat haha. we are waiting until his tube to try solid foods but i think we will have better luck with that than the bottle. i’m hoping that once the tube is out of his throat we make a few exponential improvements. i’m grateful for any baby step forward though. it’s crazy how fast the tube feedings become normal. i can’t even figure out right now how a normal feeding would go. i mean otto loves to watch the kardashians in the morning while having a slow drip feed. in other surgical news we are just waiting for otto to shows signs of heart failure again. which just seems impossible to me for how good he’s doing right now. still holding out for that miracle.

right now though i’m just savoring each day as a total gift and for the first time in a long time can honestly say that i’m just enjoying this moment in life one day at a time.

 

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