New Testing

Another busy one next week.  We have Cole's infusion but are also supposed to see genetics.  

Yesterday we spoke with Cole's immunologist, the genetic counselor felt as we've already discussed the HLH at length with immunology, there wasn't much more to add with a session.  Hopefully this means the sample for the test can be drawn at the same time as his routine labs before his infusion starts.  The less Cole is a pin cushion, the better!

This test should only take around four weeks for results.  Even though we have the first exome sequencing results, this test will provide a better look at the STXBP2 coding, which is the primary gene the physicians are concerned about.  While the test is expensive, it ultimately can change the course of where we are headed.  If it is decided that yes, HLH is a certain risk, we will be immediately referred to Cincinnati Children's to meet with the HLH experts and develop a plan of action.  If it is determined HLH is unlikely, Cole's team of physicians can focus on other roots of his nk cell issues.  If we decided to wait on this test, in the event of an HLH episode, the timeliness of moving forward could be devastating as we waited for a plan to be put in place.

To us the choice was obvious, do the test.  The wheels for this one will be in motion in just a few days.  Not by any means do I want to wish away summer, but my nervous excitement cannot wait for the beginning of September, by then we will have another piece of the puzzle.  That is priceless.

Just Get Over It

Sometimes letting go is easier said than done.

People have told us point blank to get over it.

How do you just "get over" the idea that your child has been given various diagnoses that may dictate their very existence? How do you just let go of the adventures and dreams you have for them? How do you abandon all that you've been growing and cultivating before this point?  How do you let go of what you cannot change?

Even now, a few years in, I can't answer these questions nor can I tell you I've been able to "let it go" or "just get over" most of this.  Although, I've certainly overcome and let go because of the past few years.

Fear used to consume me.  I was often afraid of not being good enough, not meeting expectations others set, not reaching the bar, ultimately terrified I was failing.  Was I a successful teacher? What if I wasn't doing well enough for my students?  Did other people have a good opinion of me? Was I raising my kids the right way?

I was constantly worried about so many external variables, I pushed myself to do what others wanted from me.  To meet their expectations, to be what I thought was successful, I often gave more of myself to others than to myself, which I lost.

Cole's journey has taken me beyond this, to a place of release in some ways.  Despite
the deep ache I still feel when I drive by my old school or the sheer sadness when our Bean is accessorizing with wires and ivs, I'm over so much.

I've found the confidence to stop worrying about failure so much, in fact I've even sent some queries and am about to pitch a non-profit idea at a meeting next week.  By saying yes to situations I've been avoiding because I worried about a million questions or what people thought about our choices with Cole I've found so much richness and support in the friendships I'd been missing.  In addition, I've been much more attuned to the little things in life and the true colors of those around us.  Finding those who truly care for us has been just as eye opening and unexpected as learning who suddenly treated us as if we had the plague.  I'm over their issues with our situation, and know now not to take it so personally, it's their problem, not ours.

As time passes, I don't know if I will ever just get over things or let anything else go.   But I can tell you, that I now know, the puzzle pieces I left behind, permanently attached in some cases, are just as important to the pieces I can pick up to carry with me.  Realizing which was which has been liberating, honestly the best lesson continue to learn in all of this.  I'm so grateful to those of you who have shown me this past year what I seemed to be blind to.