Blogging in B Minor

Chaysse. a regular reader here left a comment about how hard it is passing the kids along to others all the time – constant treatment.  This was in response to my post “Update” on the 26th.  I wanted to ellaborate further. 

The fact is, a brain tumor changes the lives of everyone around that person –  some changes of which can be very positive.  On the other hand, because of the demands placed on your time and schedule, we’ve had a lot of shuffling around of our children to grandparents and multiple sitters over the course of the last 3 years, particularly around critical events.  We feel bad about it, just as Charysse said, but for us we know that these are the steps we need to take at this time.  You can wonder where God is in this? Our lives feel out of control – driven by events outside of our control.   You start drowning.  And I watch Rachael sink sometimes.  Everyone deals with it including children, but in a completely different way.  For me, this is so important…

I remember that we’ve been through deep valleys and storms before and the sun came back out.  If I can drive Rachael to the hospital at midnight 2 weeks after my first brain surgery which resulted in an emergency c-section (Keegan’s birth) I can keep going.   If I can do 5 weeks of radiation on my lunch hour M-F and go back to work along with chemo and just roll  - I can do this.  If I can endure another surgery and 2 gamma knife treatments boosting my net radiation dose to 103 Gy – all of this and Rachael and I are still here with God by our sides – we know that lots of appointments is a small annoyance really!  I get down – we do – and I try to remember these things and what is GOOD in life. 

I’m here.  I can throw a nerf football to my son, sitting down!  

We can feel lonely and on an island and focus on the future, gloom and doom or stay in today and share that optimism with those around us.  That’s a challenge for me lately with chroic shoulder/rotator cuff problems – another annoyance in the grand scheme. 

We all have thought, “no one can understand what it’s like to feel this way, be diagnosed with something like this, to take these drugs (fill in the blank) - to have my life.” 

Oh but we can.  All to varying degrees.  No one in the world is alone. 

No question, this stinks!! And there is no denying the range of emotions felt, for everyone touched by this diagnosis. With children it’s even more difficult.  As adults we have so much empathy because they don’t fully understand why everything is happening.  There is such a fine balance between over-communicating and striking fear into a child about the illness vs simply talking at their level, mostly driven by their cues.

Children formulate ideas so differently.  I have learned the following.  These are only my personal views: 

1. Beware of applying the complexity of my emotions and logic to my children.  For example, Aidan has asked me flat out, “Could you die from this dad?”  I told him yes but that we have great doctors and good medicine and right now dad is doing ok.  I asked him how he felt and he said it scared him.  We talked for a bit longer.  He took that and moved right on to another subject related to school.  There was the cue.  To my adult mind looking through his eyes, I’m terrified, full of anxiety, sad, etc and I could misplace those feelings by allowing them to lead me down a an unnecessary discussion about fear, for example when he may not feel any at all.  However after injecting my own fear into it all I will have certainly instilled some degree of fear in him.  All kids are different of course and with Aidan I think we have a good balance,  If my condition worsens, we talk about it.  Good thread for comments here…
2. Follow the cues – let them lead.   I have found when the questions are answered and Aidan is satisfied he let’s me know as described above.   Same applies in raising questions.  Aidan and I have “talk time” every night.  It’s then that I simply check in and ask how he is and if there is anything important he needs to talk about.  He’s a great kid – he has been honest with me about “sneaking candy” during rest time in these moments!  He and I are very close.  The tough discussions happen at these times.  Questions like,”Will your tumor ever go away?”,   “You’ve been in the hospital 6 times (I’ve been counting), does that mean you will die sooner than other people?”, ”How long do you think you will live”?  Tough questions feom a 7-year old.  

Can you imagine had we not had this time and he didn’t feel he had an outlet??   To be left as a child with these kinds of questions to grapple with is what I believe would be the ultimate failing.  Rachael and I have done our best with God’s lead to provide a comfortable, trusting space for Aidan tolet it out and be as inquisitive as he finds necessary. 

It’s easier said than done.  Communication….Open Up…Follow-Up…

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