2020 09 19

 2020 09 19 Saturday Day 44

"The real enemies of our life are the "oughts" and the "ifs". They pull us backward into the unalterable past and forward into the unpredictable future, but real life takes place in the here and now". Henri Nouwen 1932-1936

As parents we have a lot of regrets. Seeing our child in a hospital for this amount of time is truly beyond words. We regret taking a step in this direction that had the intention of healing. Our Feelings, Emotions, Stresses, Exhaustion beat us up. They all beat us up mentally, physically, emotionally.  Friends and family ask how one can do it or say things like "I dont know how you do it".  I cant look back to revisit these past forty something days or it will break me to pieces. Somehow I had the strength to do it once, but I do not have the strength to look back and re-live it. I do not have the ability to go back and change it, so I should not waste any energies on the past. I need energies for the "Now".  Teams come in and ask what I / We  am/are going to do when we get home. I keep responding with..."I don't know...I need to see what he will do NOW, Today, Tomorrow before I can talk about 3 or 4 weeks from now." My hope is that he gets to walking so that We do not have to worry about ramps or lifts. My hope is that he walks and walks tall so that we dont have to rebuild bathrooms. I cant think about the future right Now. I havent seen my kid in 40 something days....I need to focus on the "Now".

2 days ago I met a chaplain. I like and need different perspectives on obtaining and keeping faith and energies, so I request to speak to different people. The Chaplain asked me to look into "Henri Nouwen", I did, I found many quotes. One of which I added at the top of this note. The quote above resonated with me. In the "here and now" one needs to feed off of positive energies. In the "here and now" we can not look nor fix the "back" we truly can not predict the upcoming events nor future so....we need to live in the "right now". The right now is "the moment". If we are to make a change or a difference....it has to be "right Now".....

As a parent I Now sit bedside. While he sleeps Now, I sleep Now. I may not sleep as much Now because I need to also be his door guard Now. While he sleeps Now, I want and need him to have solid sleep so I give every nurse, doctor, cleaning crew the evil look when they walk through the door. They get the..."YOU WAKE UP MY KID NOW FROM THIS PEACEFUL SLEEP....SO HELP YOU GOD...He better help you roght Now!!!!". I know they need to do stuff Now....but if my kid sleeps Now....they need do thier stuff Not Now!.

When he wakes Now, I frantically make all crazy attempts to get him to move around Now or I make all types of crazy, silly sounds while touching every single toy that we have brought Now. I touch everything with the hope that something will spark his interest Now, something will excite him Now, something will make him track with his eyes Now, something will make him smile or laugh Now. It has been forty something days...he is Now finally tracking a little with his eyes but I have not heard his voice yet.

When will I hear his voice? When will he sit alone? When will he stand alone? When will he greet me as I walk in the door or say God Bless You daddy when I sneeze?  As a guy thing we burped or made our noises from the opposite end....when will he remind me to say excuse me again? He isnt doing so Now...I wait.

This is all pretty exhausting. Time goes bye, he sleeps, I sleep. He wakes, I wake. I wake up tired. I wonder if he feels tired or bored. I wake up tired.... is he? "Alex Buddy!. You awake already? Arent you tired???" then he smiles or he has some crazy laugh as if he just had a really funny dream.  The kid laughs and the parent then receives that boost of energy equivalent to about 3 or 4 espressos.  We get to it Now and start the hospital day routine all over again right Now...

Now Slowly waking. Now Slowly recovering. Now Vital signs have been stable. Now Slowly removing some medicines while Now slowly adding Physical, Occupational and Speech therapies.  In the past few days we were not seeing progress with the therapies due to the scheduling of the medicines in relation to the times of therapy services. Alex has been very slow at gaining his physical and mental strength but I feel and believe that it has a lot to do with the amounts and the scheduling of his medications.  After this upcoming Mondays surgery we intend to get Alex back to a normal schedule. Currently Alex requires 9 visits from the nurse to provide medicines and 3 visits to reload feeding. Alex is currently requiring 12 nurse visits in a 24 hour period for medications alone. this kid is consistently being messed with for meds. In the afternoon there is a 6 hour window where he has a medication break, but gets " his work on". His therapies are scheduled between 1 and 5.

Right before medicines are Alexs "Good Times". At the tail end of meds Alex laughs and plays. As soon as meds are given he seems to slow down and becomes more serious facially. 

It is Now a balancing act between medication scheduling and his therapies. Right at this moments "Now" he is a little better than he was at yesterdays "Now".  We cant go back to fix anything about yesterday and we can not predict what will happen tomorrow we just hope that tomorrows "Now" is a little better and stronger than todays.