two cookies with Jesus

to say that i have been a total and complete hot mess express since our last cardio appointment would be an understatement. and the strange thing is… why? nothing has changed. seriously, nothing has changed. the leak in his heart is still the same, the rest of the repairs are holding up, he’s going to need one if not two more surgeries in his life, there is a good chance he will need a replacement, there is a decent chance we could get by with a repair instead, he is still putting on amazing weight and is showing so much strength which puts us in the best possible spot for either surgery. nothing. has. changed. so what gives?

i think it is coming to grips that this might never be “over” for us. that we might never have the magical fixing surgery and be like “byyyeeeee see you once a year doc for check ups” he might need something done throughout the course of his life. and there is no closure in that what if scenario. i was talking to a fellow “heart mom” (that is what we call ourselves) and she was giving me the encouragement i needed as her little boy has had replacements and living the medication life. i’m grateful for people like her because you see them doing just that. LIVING the life. granted a few adjustments precautions and extra anxieties. but living nonetheless. i told her i’m not having a pity party, i’ve fallen into a deep dark pity pit this week. all the rules that i have made for myself i broke. yea i spent an hour reading up about mitral valve regurgitation and mitral valve replacement. which by the way i feel like a borderline expert on the ON X valve. mike and cheryl on the website had great testimonials about their replacement surgeries. i read them so many times i feel like we’re bffs.

ottos case is being presented again at the wednesday round table of grand rapids geniuses (the heart doctors not apple inc.) and they are just going to check up on his progress. we are still shooting for april and beyond which like i said before, if we keep on this track we just might make it there. otto weighed in at 15lbs 13.5oz and wouldn’t sit still for two seconds during his echo. i literally was trying to distract the wild chicken little the entire thing but at least they got what they needed. i’m anxiously awaiting the call to hear what they had to say and have been answering every unknown phone number just in case (even though it’s not even wednesday?)

i was washing my hair this morning and thinking to myself, WHY am i letting all this get to me? today is going to be a great day. i’m having coffee with some friends to talk about our gardens. HELLO my favorite things. then otto and i are going to come home for feeding therapy and work and play. what is the problem. the house is dark right now and joe left for work otto is back asleep and i’m having my treasured two cookie biscotti from trader joes and drinking my coffee doing my devotions. i limit myself to the serving size of two cookies because if you have ever had these … they’re just way too easy to dunk in your coffee and eat the entire tub. things are good so why is this all getting to me?

the verse from my devotions this morning was Psalm 107:6-8

“Then they cried out to the Lord in their trouble, and he delivered them from their distress.
He led them by a straight way to a city where they could settle.
Let them give thanks to the Lord for his UNFAILING love.” – Psalm 107:6-8

there has been many days throughout this process where i have extreme amounts of shame for not returning to God until I needed him. honestly. like i’ve said before I’ve always believed but never really trusted or built a relationship. what struck me this morning is these words are exactly what i needed to hear this morning. and it’s exactly how my devotions where supposed to fall open. he led them by a straight way, no joking around no pit stops, straight to a place where they could settle. and i think other than otto’s healing that is what we are longing for. a quiet place with some reassurance that we can settle for a bit.