Heart Month – Day 22 – Milestone (And – Birthday)

It’s my birthday today.  Kiran didn’t get the memo.  I woke up to him having peed through his diaper overnight and had to strip the bed I just changed yesterday and start laundry (Best laid plans…I did so much laundry yesterday, in hopes of not having to on my birthday).

And then – oh, the turkey – every time I think we can just be back to normal.  We have never had issues with Kiran’s g-tube site.  His stoma has always looked really good – we have been lucky – until we sized up this last g-tube change.  Ever since, it has just looked kinda angry.  Just not as nice as usual.  A little red.  But this morning was new, and it sent this mama spiraling (even as my brain tried to tell my heart that it would be okay, we’ve handled everything so far, we will figure this out).  He developed a bump – a reddish bump – on one side of his stoma.

After talking with a fellow (former) tubie mama who I know dealt with granulation tissue – and after being on the phone with a GI nurse from Iowa City – I suspect it is granulation tissue.  I am hoping the school nurse is in today (She is very knowledgeable with g-tubes; we are so lucky) so she can actually lay eyes on the site and confirm.  A picture was sent to Iowa City, but a picture can only show so much.

This isn’t how I anticipated spending my birthday morning.  And yet, I still wouldn’t have it any other way.  I’m slightly less emotional, now that I’m actively doing something and on my way to finding answers.

It is so easy for me to spiral and succumb to fear and overwhelm.  This life is not for the faint of heart, and sometimes, this mama’s heart is so incredibly faint.

But.  Milestones?  Let me tell you about milestones.  I celebrate every single step forward, and I don’t keep track of any of them.  Long ago, I decided not to write down milestones.  It was too hard, and too … muddy.  Kiran would be able to do something for a time, and then he would regress because it became too hard due to his heart (pre-surgery).  And the rest were just too hard to pinpoint … and so far off from the “normal” timeline.  It just did my heart better to celebrate and get excited about every single one, while decidedly not trying to catalogue them.

Except one.  And anyone who has followed along might just remember the one milestone I have in my calendar on my phone.  March 8th, 2016: “Kiran laughs!”  It’s the only one that matters.


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