decidedly undecided

He asks me almost every day.  "Mommy, will you lay in bed with me after my surgery?"  "Will you read stories to me after my surgery?"  And every day, I've reassured him.
And I have no idea what to tell him now.
It breaks my heart because I hate the idea of breaking his.

R & I are not decisive people. At all.  We've sought counsel, we've prayed, we've debated, we've waited & finally, finally, we came to a decision.  A little boy's queries to a surgeon, his requests to be able to do more activities like writing and coloring with just one hand - those pushed us over into a decisive yes to the surgery.

We sought three medical opinions from top surgeons all over the country.  There was one opinion I tried to get a year ago and was told "no."  I couldn't get past the nurse as they claimed her opinion would be the same as her colleague's whom we had already seen.

So we've planned and prepared and because we were given hope from the surgeons we began to prepare our little boy.  We thought this was going to be possible.  Soon, he would be able to grasp more objects with one hand.  We believed this to be reality.

Last week, at the hospital in Dallas, the surgeon walked into our pre-op appointment.  Except it wasn't the surgeon we've seen countless times.  It wasn't the one we had chosen to do the surgery.  It was the one I had been denied access to a year ago.

Turns out, she didn't agree with her colleague at all.  In fact, she informed me that doing the surgery was setting him up for failure - that she didn't think it was possible to give him the chance to grasp effectively with one hand this year.

And then I was blindsided with an entirely new surgery, one I had never heard of.  It's complicated and I still haven't fully researched it.  I don't fully understand it but it would be a series of surgeries and bone repositioning and stretching and it's not possible until he is maybe 6 or 7.

He's four.

This means that he would have to wait at least 2-3 years before even the possibility of helping him be able to grasp more objects with one hand.  It means he will be in school and face a lot of absenteeism and missing out on extra curricular activities and possibly face delays in school, not to mention relearning basic skills that we are working on now - like writing.  At age 4, this wasn't such a big deal.  It's big for a 7 year old.  And it means he has to continue struggling to keep up with writing until then.

The whole meeting felt like a huge wreck.  I was blindsided.  And her bedside manner quite frankly, stunk.  But I'll spare my heart the repeating of some of her insensitive comments made while my child was in the room.  (I had heard the rumors about her bedside manner.  I'm sad to say she lived up to them.)

But she is a renowned surgeon so maybe she is the answer for us.

Or maybe not.  Maybe we're going back to Boston soon to talk to that surgeon, yet again.

I felt a peace finally about the first option.

Now I feel a peace about nothing.  In fact, I'm finding myself struggling each day since then - I thought I could do something for my little boy - that this was something we could given to lessen his struggles, to increase his function, to eliminate a difference for him.

I don't know which surgery we should pursue.  I don't know when or if we should pursue it at all.  I don't know which surgeon anymore to trust to do it.

And mostly, I don't know how to tell my little boy that it's not happening anytime soon.  And that maybe it's not ever going to happen like we had thought.

And that breaks me.

6 thoughts:

The Reeves bunch said...

My heart is aching for you. I am so sorry that you are having to deal with all of this. Please know that you are in my prayers. I pray that God will lead you in the right direction for what is best for Will and his future development. We missed seeing you at the Fall Retreat for Ellie. I hope to someday get to talk to you in person again.

Mama Bear said...

Praying for peace as you navigate these decisions. Remember that God made YOU and R these children's parents. No one else, not even a surgeon with a crummy bedside manner (grrr), can change that. YOU know what is best for your child.

Continuing to pray for you all.

Anonymous said...

I have no advice.. I have been following the blog for some time but never have commented. My son has AMC and see's the surgeon's in Boston at Children's, so I just wanted to say that if you do come out here I would love to meet your lovely family and if there's anything I can help with please let me know. I will also say some prayers so that you may recieve some guidance in your families decision and good luck. :) Kristin

Katie - a Blessed Mommy! said...

Hi Amanda! I hope we can make camp next year so we can meet new friends and see you guys too! I love the walking video on your blog!!!
Paula- thanks for your encouragement! Hope to meet you next time we are there!

Brooke said...

Katie - all I can tell you is that we dealt with a surgeon with a horrible bedside manner when it came to dealing with patients. I prayed (HARD) that God would lead us in the right direction. We went for a second opinion and while it meant delaying Harper's surgery from October 2010 to July 2011 (which totally freaked us out at first), it was the best decision we could have made. God is that GUT FEELING and all I can tell you is to trust it. If it keeps leading you back to Dr. Nasty, so be it and you will be given the peace and patience to deal with her. If it leads you in a different direction, you will know. I understand being completely blindsided and, frankly, it sucks but trust that God is in control here and there is a reason for this! We will keep you all in our prayers as you consider your options.

Katie - a Blessed Mommy! said...

Kristin - Thank you so much for reading & commenting today!!!
Our Ellie has AMC & Will has limb differences. Pretty much Ellie's AMC is treated here in TX but for WIll we've sought some second opinions in Boston. Love Boston Children's! (Actually, now that I think about it, Ellie was treated there while in the belly.)
Anyway, yes - thank you for your thoughts & we will contact you if we end up heading that way again.
Brooke - thanks too for your encouragement. I keep wondering if this is God stepping in here & delaying us for His purposes...I wish I felt a peace about this but I'm struggling I think because I was finally feeling a peace about the situation - & now the doubts & fears have returned full force...
I think we may end up using this fourth surgeon if in fact we pursue her ideas - the Boston dr will just be to give us his opinion & to help affirm the decision or help us make a more informed choice.
Ugh - sometimes navigating these unknowns can be one of the most difficult parts in raising these precious kiddos, huh? Not exactly covered in the parenting books!

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