The Decision of a Lifetime

Very soon (as in probably within the next 10-14 days), Kristi and I will be meeting with the doctors and neurosurgeons and other pertinent people to have a candid discussion of surgery possibilities for Isaac.  We have received opinions from doctors from a Harvard study group and from Boston Children's.    Basically it boils down to the following options:

1) To do a complex procedure to decompress his spinal cord, then stabilize the cord and untether the cord from his pelvic bone.  All of the details of this surgery will be discussed but as you can probably gather, it will involve some risk.
2) To only untether his spinal cord and continue the waiting game
3) To opt to not do any surgery

There are so many questions Kristi and I have about these possibilities that it would be impossible to address them all here.  Suffice it to say, we are worried, anxious, and any other synonym for the fear of the unknown.  Isaac has come so far, yet we understand the need to continue that progression.  However, we struggle with the concept that this progress (and continued progress) comes with risks.  Essentially we face the following questions.

1) Will doing surgery give Isaac a better chance to function normally (whatever normal may be) and does that better chance outweigh the risks of what would most likely be a complex surgery?
2) Does this surgery need to be done in order to prevent further injury?  And if so, again, does the surgeries risk trump the damage that could be done without it?
3) And of course, what are the risks to Isaac with this procedure?

It is hard for us to think about all these things as we continue to see our little boy progress and be such a brave little soul with all the different therapists and appts he routinely has to go to.  We also struggle knowing that we have to make this decision for him, that he is unable to make this decision on his own.  I so very wish we could just look at him and go, “what do you want to do buddy?”  But, that is not our reality.  We will get the best information possible and make the best decision possible.  Scary.

Kristi and I continue to talk regularly about this upcoming decision and what we think is best for Isaac.  It keeps us up at night, it invades our thoughts at random moments, and at times, makes us sad to think of what could have been.  But, with each new conversation, each new piece of advice, and each new hurdle conquered (by us and Isaac) we gain strength.  Our little boy, who looks and plays like almost any other toddler (except not as tall!) is a medical miracle already, and we are hopeful for a few more.  We will trust in our doctors, our family, and ourselves, and of course, in Him.

On a personal note, I have tried over the course of almost 3 years (from the time we knew he had an “issue” until now) to always stay positive and not really think about the “what if” scenarios.  I find this more and more difficult with each passing day.  It has been weighing on my mind for quite some time now that Kristi and I have to be the voice for Isaac.  We have to think about how this upcoming decision will affect him 10 or even 20 years down the road.  We have to try and make predictions on less than reliable stats (as Isaac’s case is so incredibly rare).   It is hard to see recommendations from world class doctors on the East Coast continually say, “his case is much more severe or complex than our closest examples”.  I think about my love of sports and how I can best portray that to him.  And in those moments, when I know he might not be able to play soccer or golf, or baseball, it does unfortunately make me sad.  But, I also see how he lights up when solving puzzles or problems.  And of course, he LOVES music.  And so, we will go into this next round of meetings with an open mind,  hopeful that our little boy will continue to prove us and doctors wrong.  We love our boys so much and Kristi and I continue to be a stronger couple through all of this.

Please say a few prayers as doctors come up with the final recommendations (we know, this has been a long waiting process).  I think Kristi and I would also ask that you say a prayer for Elias as well.  He has been so sweet through all of these things (don't worry, they both do act like typical 2 year olds too!), and he sometimes has to take a backseat to Isaac.  Eli is the best little brother Isaac could have ever been blessed with.  Thank you to everyone for all your support and help, it means the world to Kristi and me.