Ultimate Decision

Some years ago Riley had a medical procedure done that I found barbaric. Basically it has something to do with his shunt… I called it the lightening rod procedure. Put a metal monitor (bolt) in his skull/brain (exposed) and hold him still for 48 hours, intended to be 24, so they can read what is going on. Given Riley’s expressive nature. Holding still was a task. But I did it (actually he did it… I was just along for the ride) and I never imagined anything worse…. Until recently…

First, the Lightening rod procedure (Camino Monitor) was a success and gave us more insight into Riley and helped him (helped us).

2014080595121319As to Riley’s recent procedure, Soft-Tissue release for Hip Subluxation: I hope (pray, yes still do 😉 ) the procedure this week will do the same, but I would take the lightening rod procedure every month for a year compared to this one. The past few days have been rough on him. With every cry, as a parent, it is magnified by 10 for us (nature of being a parent). We stand by not knowing how to help. No guides with being a parent, no guides to being a parent with special needs (except sharing and hoping our sharing helps others). No guides for going through hell. As the song says “you just keep on going” (Rodney Atkins “If you are going through hell”… describe myself as a “Country Closet Fan”… but great song and I listen to it at least once a week)

So… few days into procedure and we know it SUCKS (I thought Stacie could be pissed at me? She has nothing on Riley and he can’t even talk!). Riley will be different after this procedure. I hope for the better.. so it SUCKING gives Riley HOPE (relief). Gives his parents that. Riley may not know that relief now. We don’t. But, again, holding on to the Hope and realizing things will suck, but hopefully get better.   I know that the decision for this surgery was not easy for anyone. 2014080595123437It is not elective surgery (no bigger boobs or pecs) but … We as parents had to decide. That sucks too. IF it were an appendicitis or something, easy… do it. This one is different. When do you do it? Too early? Too late? Having any child (adult) with Special Needs involves decisions that need to be made. An Ultimate Decision as I call it: Making a decision for someone that you love, would take the place of in a moment, don’t want to fail. But it is just you that have to decide. As they say, no one can live your life for you. I wish many times someone would live my life for me. Make the decisions for me. But, that is not an option. So, not an option for me and for me (my wife) we are left with Ultimate Decisions for Riley. 10590459_10204584787083613_7172042969471590428_n

I will post more later on this, but am writing this to sort out my thoughts (as unorganized as they are (no sleep at all last night… not as bad as the 51 hours without sleep I had at Riley’s post birth, but it SUCKS)).

Other thoughts about his surgery…

The staff at the hospital was AMAZING. I didn’t need to wear a hat, but they found us matching hats for “selfies” (yes, I look tired and old). While Riley was in surgery (not in wheelchair) I joked about charging people $5.00 for a wheelchair race. They were for it! Post surgery they called me in after a time… Two nurses over him looking more stressed than me (but never saying. Always positive)… They didn’t know Riley and were trying to “figure him out” (their words). I wanted to say “me too”… instead we all looked at him making his sounds and one of them said “what does that mean?” I stated he is hungry and wearing this fucking thing. He is “PISSED BEYOND BELIEF”. She looked at me and stated “that is what we thought too” (laughter… Sorry Riley). 2014080595164641



The Shark Tooth Guy


5 Responses to Ultimate Decision

  1. Joy Healey says:

    Hi John and Stacie

    I’ve found this post rather late and just hope and pray that Riley has had some benefit from this procedure and starting to see the benefit.

    Your strength of character and managing to find something to laugh about in the situation just humble me.

    My prayers are with you all.


  2. John , you and Stacie are amazing!!! Always remember Riley chose you for his parents – because he knows you are both strong, loving, caring and will help him be his best on his earthly journey. Sharing your story will help so many others know they are not alone on their own journeys …sending you hugs and blessings on Angel’s wings …Celia M. (HHL)

  3. Christine says:

    🙁 so sad seeing the 2nd to last pic of Riley… I know that look all too well; heartbreaking feeling so helpless to our kiddos… Prayers for you all for better days ahead… from our personal experience, this is a worthwhile procedure. Stay Strong!

  4. Thank you for sharing your story, I’m sure it will help someone else who is going through difficult decisions with their child. It take a special parent and person to openly share this type of struggle.

    I hope Riley is starting to recover.

  5. Thanks for sharing your story 🙂 Enjoyed reading 🙂

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