today i got to take care of the kids from sunrise to sunset. dara went to work around 7:45 and i was supposed to put emmett on the bus @ 8:30. around 8, nurse staffing calls and tells me that emmett’s nurse tara’s car had broken down.
it then became my responsibility to take emmett to school, after taking ian, and go pick him up… this is because emmett isn’t allowed to ride the bus without a nurse. the nurse rides to monitor his seizure activity. i asked nurse staffing why the burden falls on me? shouldn’t you have a backup plan if your nurse can’t make it? blah… in reality, taking them isn’t that difficult. the difficulty arises when emmett is crying in the car. it just breaks my heart to listen to the guy cry. i can’t really help him. dara and i try and try and try and cry… we do. we do an incredible job. this is sooooooo hard. but the hard part makes us tougher, harder, more resilent to life.
today went good. trader joe’s visit rocked. mackenzie didn’t sleep but 30-40 minutes in the car. got home, cleaned up, cleaned, fed, cleaned…
tried having ian ride his new bike but it was too big. couldn’t help him enough with emmett crying and mackenzie wanting to ride the bike as well. fail.
went on a walk with emmett, ian and mackenzie. pushed emmett and mackenzie in their chairs. once again, emmett was real bummed and cried for 80% of the walk. this is soooooooo difficult. can i he please talk to me so i can *help* him fix what needs fixing?
made dinner for dara.yummy.tummy.
ian played outside earlier but was bummed cuz he, “couldn’t do anything…” he told me he couldn’t play any sports unless i helped him. i felt sorry for the guy, but i couldn’t play with him outside and bring mackenzie out because it was still pretty cold.
finally ian and i had a great time playing outside. while i was running with him i had a strong wave of guilt run over me because i was outside running around with ian while emmett stayed inside probably doing nothing.
ian i returned, he threw a big snow ball on me and was laughing out loud as we entered the house. upon entering i see emmett just sitting in the couch waiting. waiting. waiting. waiting… i could probably type waiting once more and not even come close to the amount of patience that kid has.
then it hit me. the thought that what if, in my next life, or some scene in the after-life i’m in emmett’s body and i experience the world as he does. the *things* that make him happy are a direct result of what dara and i and the others that interact with him do for him and help him. this thought swept across my brain with a tidal wave of energy trying to sink me. alas, no… dara and i will walk to the edge of the earth helping our kids. i will make every attempt to treat emmett as i would like to be treated in my next life / scene. i need to. i owe it to the kid that’s given up so much.
i forgot about the part that emmett has been breaking into tears the last couple of days when we lift his legs. it HAS TO be his lower back. it is soooooooooooo tight. the tendons feel like bones, they’re stretched and pulled so tight. i experienced a bank cramp last year and it was excruciatingly painful. pretty sure god was letting me know what it felt like so i could relate.