Friday, September 25, 2015


It feels like it's been an exhausting week.  Between Little Lady trying to sleep with us every night and a migraine that lasted 2.5 days last weekend, I've been physically exhausted.  On top of that, MOPS started last Friday, and that was so much harder than I thought it was going to be.  It kind of caught me off guard today, after the MOPS leadership meeting where I shared about J a bit, how panicky, shaky, and battered I felt; the act of sharing his story, my story, in person just wrecks me still.  Part of it, this month, is absolutely tied to his birthday and all of the horrible anniversaries from the PICU.  But still, after almost five years, going into a social setting with new people fills me with a dread that is damn near paralyzing.  I feel tight in the chest and hot and sweaty just thinking about it here, in my quiet dining room with not a new person in sight.

I don't know how to explain the conflicting feelings that fill me with such intense dread, but I will try.  I don't even think I can put the feelings in an order, because it depends so much on the who, what, when, where, why of the situation and Lord have mercy, I feel myself fumbling around and falling all over my words right now.  Sorry.  So there's always this panicky feeling, like how's it going to come up?  Because it has to, in most situations, when I'm forming relationships.  But when's it going to happen?  Will it be today?  Next week?  A month from now?  Will I get to avoid it because they will read it on my blog and then I don't have to mention it?  Should I just awkwardly blurt it out and get it over with, like ripping off a bandaid?  Should I wait?  And for what?  When does it ever become socially acceptable to talk about my son dying?

And these thoughts are all extra confusing because I really don't want to talk about it.  Wait, what? Did I really just say that?  I've been writing about it for years and sharing a LOT and it makes no sense to say that.  Especially because I HAVE to talk about it.  I cannot be in a social situation without deep anxiety about the other person knowing this story and understanding where I'm coming from.  Because this story is part of my foundation and if you don't know about this, you don't know me.  But, Holy Buckets, do you have any idea what it feels like to try to bring it up?  To try to explain that I lost a piece of my heart and soul?  To try to put into words the flood of grief and pain and love and strength and brokenness that this is?  I still don't feel like I know how to do it.  And I always try SO hard not to cry and sometimes its not hard and sometimes its really hard and both ways feel so incredibly awkward, because nobody wants to see the ugly cry, but really, it feels wrong to not cry.  It makes me feel like a bad mom.  And if you think mom guilt is bad, grieving mom guilt is worse.

And then there is the actually conversations that happen after it is out in the open.  The awkward silences.  The pity.  The Hallmark statements.  The questions.  For me, the worst question is when people ask how he died.  Maybe its because its complicated.  It's not like cancer, where I can just throw out lymphangiomatosis and anyone is actually going to know what that means.  Although I doubt that would actually make it easier.  I think part of it is that I'm kind of pouring out my most tender place and talking about my sweet, sweet boy and people seem to want to know the details of the worst part of his life and mine.  I always, always try to think about how the person I'm talking to is in a surprising and not easy to navigate position, but it still is hard on me too.  I totally believe that everyone is well meaning.  And honestly, I'm not sure there is a reply that would sit really well.  It's just shitty.  The whole thing.  And it stresses me out.

I'm wiped out just writing this all out.  It's all still so hard, five years later.  And I am not expecting it to get easier, but maybe more manageable.  But it doesn't seem manageable right now.  It feels BIG and sad and chaotic and lonely and tiring.  It feels guilt-ridden and heavy and overwhelming.

In church last Sunday, the choir sang Be Still My Soul as the closing hymn and it really stuck with me.  Sometimes you can just know that God is speaking to you and giving you a gift.  And this song, this prayer, is quite a gift for me right now.  If you click the link below it will take you to youtube and you can hear the song.  Be Still My Soul

Tuesday, September 15, 2015


Happy Birthday Jameson

You brother and sister picked out some great balloons for you last night.  I think you'd like all of them a lot.  There is one with Curious George holding an ice cream cone with six scoops of ice cream on it.  You loved ice cream and it reminds me of your second birthday when we had ice cream sundaes instead of cake. 

Little Man also picked out a Toy Story balloon with Woody and Buzz Lightyear on it.  That reminds me of the time we took you to the theatre for your first movie.  We all went to Toy Story 3 together and sat near the front and had pop and Reece's Pieces.  You loved that movie.  Especially Rex.  I still have your Rex flashlight, J.  Sometimes I let the kids play with it and other times I put it on the shelf with your urn and blankey.  I remember how happy that flashlight made you.  How we brought it into pre-op before your surgery and you ran around the room laughing and roaring in your little gown and yellow hospital socks.  It was the last time you laughed here, Jameson.  I'll never forget that.

Your Little Sister picked out a Spiderman balloon for you.  She wore your old Spiderman shoes for a while, J.  And now she loves Spiderman, just like you did.  She tells me she misses you and cries because she wants you to come and visit us and she doesn't understand why you can't.  Did you meet your sister in Heaven?  Before she came down to live her?  I like to think that you did.  That when she says she misses you, it's true.

We all miss you so much, Jameson.

We love you and hope you have a wonderful 8th birthday in Heaven.