Season of Aches

So much for going slow. 

On top of working full-ish time, taking most-ish care of all household duties, having kids and a husband in residency, taking on some leadership at MOPS, I started grad school.  For the most part, adding in school has been amazing.  It is invigorating and challenging and filled with hope and dreams and adults.  But there's also the fine print of deadlines and homework and seriously intense readings and papers(okay I love writing papers) and 4 am wakeups in order to get in the quiet time to work.  Yawn. 

Its been really nice this fall to have some intellectual distractions, but I'm afraid it may also be adding a little to the seasonal anxiety and stress I tend to feel during these four months of the year.  I noticed shortly after Jameson's birthday this year that I started having a hard time sleeping.  And my back and neck started to get really sore and moving started getting painful.  And probably owing to those things, I also started to get really tired.  My first thought was that my thyroid must be off, but after consulting with DocHubs, that is really unlikely based on my recent numbers. 

So then I started thinking back and last fall I had the exact same symptoms, but worse from the thyroid issues.  The previous three years were riddled with sleep deprivation and pain from pregnancy, birth, babies, insane amounts of flu and stomach viruses and therefore, hard to know, but also full of aches and fatigue.  But, judging by the timing, I really think part of my fall aches and pains are physical symptoms from grief and remembrance of those four months we spent in the PICU before he died. 

So.  I don't know.  I'm tired.  And tense.  And sore.  And having more headaches and migraines than normal.  And it kinda really sucks.  But I'm also busy(which is a really good thing).  And laughing a lot.  And learning SO much amazing information in grad school.  I'm happy.  And madly in love with husband and my kids and my life. 

The more of life I experience, the more I see how everyone has crosses to bear, everyone has brokenness.  And I'm grateful for mine.  I'm grateful for the pain, grateful for the perspective it provides, the way the fight for JOY makes everything sweeter, the way it connects me with other people.  Don't get me wrong, I would love to give back these crosses, to have my beautiful Jameson here and still be living on the shiny side.  BUT, some of the things I've learned and most of whom I've become because of this loss, because of this pain and because of this faith, I would not want to give back.   It isn't easy to reconcile, but I have to eat dinner, so to wrap this up, I'm just going to say that I'm here.  Broken and happy and ready for more adventures. 

Weary

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

Eight

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.  

Almost Five Years

The end of August is so hard for me. The 31st is the anniversary of Jameson's hernia surgery that turned into the four month hospital stay that ended in his death.  It's been five years since that happened, but it still hurts like it was yesterday.  The fear is gone, because I know what happens, and not knowing is the scariest thing.  But the pain, that lingers.  I've made peace with the pain.  It will never go away on this earth, and frankly, I'm glad for that, because what kind of person could I be if I wasn't in pain for the rest of my life?  My son has been gone for almost five years.  Five years.

I was telling one of my most favorite people in the whole world the other day how Timehop is so fun, except right now.  It gets SO hard now.  When five years ago the updates are that my son can't breathe and he has blood pouring out of chest tubes and pain and suffering and no one knows the the hell is wrong with him.  And then on September 5, when we get the diagnosis and it says that he dying.  My son was dying.  And they said we would maybe get five years with him.  But we weren't that lucky.

Grief is a complicated and messy thing.  And losing a child is hard on more levels than I can describe.  And it never goes away.  It never ends.  The days that are good carry guilt for the lack of grief.  The days that are bad are indescribable.   Most days are in the middle.  As time goes on, pushing me forward, pressing me farther and farther away from him, he starts to feel more and more a stranger to me and I cannot get over that.  I can't remember anymore how it felt to hold him in my arms.  I can't remember the sound of his voice unless I watch one of the very few videos that I have of him.  I can't remember what is was like to tuck him in and snuggle close unless I try so hard.  The memories of my boy are one of my finest treasures and yet they are like sand in my hand and I cannot keep them, as hard as I try.

The grieving mother in me wants nothing more than to just STOP the world. Just freeze everything and spend every moment possible breathing him in, remembering, commemorating.  But I can't do that.  Because my world is more than Jameson.  I have two living children, a husband, family, friends.  And my own life.  And so I keep moving forward, some days as if I'm on a treadmill with no way to get off.  But I do keep running.

I really don't like ending blog posts so sadly.  I really don't like being a Debbie Downer.  And I reach and seek JOY every day.  But the next four months are HARD.  And this is my sacred place to share my heart and soul and I need to write openly.  So don't feel bad for me, but please do support me.  Tell me stories and moments about my boy that you remember.  Tell me that you love his smile and wish you knew him.  And please don't forget him.  Because I'm trying with everything in me not to. 

Momentum

I thought I'd start writing more in the spring.  This winter was a doozy for me.  I was unknowlingly suffering from hypothyroidism and it was taking it's toll.  I was tired.  So tired I would get up in the morning and literally cry because I was so tired I physically didn't know how I was going to get out of bed.  My hair was falling out, I had horrible aches and pains throughout my body and I was depressed, angry; it wasn't good.  The depression startled me.  I didn't see it happening, mostly because I was too tired to see or do much beyond keep myself and the kids alive and fed every day.  And maybe I held myself together well enough that most people would be surprised to read this.  But all of a sudden, one week I realized I was sitting in the bottom of a pit and I was a long way down and I couldn't get out by myself.  So I did what I could do and I asked for help.  I told Hubs I thought I was going crazy and gave him all my symptoms and cried and he held me and listened, and I said I think I should see a therapist, and he said I think you need to see your doctor and get your thyroid checked.

And I did and it was off.  And I started taking meds and I kinda backed off of everything for a while.  I needed some rest.  So my house wasn't quite as clean, the dinners weren't quite as exciting, the bread started coming from Costco, the home projects completely stopped, and the kids watched a little more PBS after work.  I gave myself some grace.  After a few weeks it started getting a little better.  And then a little better.  And I thought that when I bounced back, I'd be able to hit the ground running and pick up the pace and start really moving again and it didn't happen that way and it really frustrated me.  How can I be getting less done now that I'm well than I was getting done when sick?

After reading The Little Engine That Could to Little Lady for the millionth time in one day, I started see how maybe I was a little like a train.  I was coasting on momentum and speed for a really long time, but it couldn't have lasted forever.  And just like a train carrying a heavy load, the starting back up is the hardest and slowest part.  I'd lost my momentum.  So I gave myself a little more grace to go at a snail's pace.

And I'm still here.  My house is a disaster most times, but I've started cooking again.  I bought painter's tape, which is a step in the home improvement direction....  I'm here, writing.  Most importantly, though, I feel whole and full of light.  Not in the I'm fixed and all better and back to normal sense, because I gave up on that after Jameson died.  Once something's broken, its broken.  You can either learn to make peace with the imperfections or be eternally miserable.  This now almost year long health mishap has brought me to my knees(physically and spiritually) and there, I've done a lot of prayerful reflection and seeking.  I'm realizing more and more the areas of myself that are still quite broken and my prayers for myself are often that God will soften my heart.  But maybe we'll save that can of worms for another day.

So this is a start in building momentum.  I can't say when I'll be back to write again. Maybe next week, maybe next month.  I don't know.  I do know that for a very long time, I didn't feel like I could write and be so....open.  And I still have a lot of things in my heart that feel raw and personal and it's hard to write around them.  But it's a start. 

Butterflies

Yesterday I was folding laundry.  That actually is momentous enough to stand alone, but not the focal point today.  I was folding laundry and watching Little Lady play and sing and dance around the room all full of joy and life and I was thinking about how fast it is flying by.  She is so big.  And in my mind, the numbers all started adding up and then it all clicked into place and I dropped the shirt in my hands and just stood there staring at my sweet girl who has been on this earth now for nine days longer than her big brother every got to be. 

I knew it was coming soon, but I wasn't ready for it and all the complicated everything that comes with it.  Because first of all, THANK GOD she outlived him, since he died at three.  Because don't think I ever have the luxury of looking my sweet kids who seem so healthy and perfect and not wonder what could be lurking in their bodies undetected.  It is a fear that I fight against every single day.  And I will not let it win and I will not live in fear and allow it to rob me of the gift of life. 

But then, she's only three years, three months and twenty days old.  And she's already lived longer than he did.  It splits my heart wide open all over again. 

I've got ten butterflies on my dining table right now.  They are in a butterfly tent, right next to my computer as I type this out.  They all hatched yesterday and the day before and it's been an amazing process to watch their transformation.  While reading up on them, it mentioned that they only live about two weeks once they become butterflies.  Two weeks.  Such a short life. 

The calloused and jaded side of me instantly wondered what's the point?  What's the point when its so short?  When all they are doing is living long enough to lay eggs and then die.  But I've been watching them all day and they are so beautiful.  They are kinda crazy, too.  I can't believe how hard it is for them to fly.  They keep flipping over and falling down and getting stuck partway under the plate holding their fruit and flowers.  Honestly, it's a little stressful watching them.  But they are just so dang beautiful. 

I'm not sure how to tie this all together.  I've never wondered what the point of Jameson's short life is.  He was my boy and his point was to be love on this earth.  And he loved like a boss.  The point of his life was always crystal clear. 

I will always struggle with the brevity of it all though.  It's easy to be okay with the shortness of the butterflies' lives.  I can see how they are a part of the food chain and hear Elton John singing "The Circle of Life" in my mind (you're welcome) and separate myself enough to feel little more than a minute of sadness at the idea of them leaving so soon. 

But Jameson?  That one is not easy.  I can't step away from the gaping hole in my heart and soul.  I can't look at my senior dogs and think how they've outlived my son four times over.  And I can't be okay with it.  It will never be a thing where I can see all the good that maybe has come from it and ever say it was worth it. 

Maybe someday when I get to Heaven, God will show me why it had to happen that way.  Maybe we'll walk through the woods together and He will hold my hand and look me in the eye and maybe then, where death is banished, maybe then it will be okay.  But not here. 

It is a struggle.  And I don't know how I can reconcile my faith when I read verses in the Bible that say "It is the Lord who gives life and death, who casts into the grave and raises up." 1 Samuel 2.  But just like I wrote way back in December of 2010 when the doctors all said we have to let him go, I truly do believe God is good all of the time.  But how can He be good when people like Hitler get to grow up and people like Jameson don't and He is the one who decides?  This is where that faith thing comes in.  The faith card seems like a cop out.  I know it does.  I can't explain it well.  But over the years, I can honestly say that God has proven Himself to be trustworthy.  I trust Him.

As I sit here, watching my butterflies and picking out all the marshmallows from my organic lucky charms (seriously, why do they even bother including the cereal), I don't know what else to say?  There is too much to say, too many things to think about and so little time to process it all and write it all out.  And this topic on faith and trust and death, well, I'll be working on this one for the rest of my life. 

Time

I've been sitting here with the cursor blinking, eating Reece's Pieces and drinking Irish breakfast tea, looking out the window and wondering how in the world to start.  I used to dream about making this writing thing a career and now I'm lucky if I can find the time, energy and patience to write once a month. 

I used to think that the baby phase was the hardest.  That once they got bigger and more independent, it got easier to make time for myself.  Time for cooking, reading, exercising.  But Little Man is almost 9 and Little Lady is 3 and I feel even more stretched now than when they were babes.  I found myself in a shower alone last night, thinking about how rare even this was becoming.  We spend all day every day playing, reading, eating, talking, dancing...I wear her in a backpack still when we walk to school and go for hikes and head to stores.  She loves to be so close.  Always.  I love it, too.  I do.  I sometimes leave her at MOPS and feel breathless, as if I need her closer so I can catch my breath.  But still.  I need my own time.  And I look forward to my showers all day long.  It's my time to be quiet, alone, relaxed and reflective.  But she misses me and if she's still awake, she's there.  And before I even have time to get the shampoo in my hair, there's a pile of princess clothes on the tile and a girl saying, "Here I am Mama!" as if her presence makes it all alright.  I used to fight it.  But she's my girl.  And I know this time won't last forever. 

Just looking at Little Man reminds me how they grow up in a blink.  He's hardly little -almost as tall as me now.  He's gone all day long.  And after school he's off playing with friends until it's time for a quick dinner before sports practices and games.  I feel like we never get to see each other.  And he's only in third grade!  I shudder to think about what high school be like. 

The highlight of my every day with him is our time together at night when we read.   He is a voracious reader, like his Mama.  I know for certainty he's pulled at least two all nighters this year because he couldn't put the book down. It makes my heart swell with love to think about it.  And so every night, after we get home from sports or swimming, or walking, we settle in on the couch with a book and we read.  Sometimes we have to stop every.five.seconds to let the dogs out, get the lady milk, let the barking dogs back in, stop the lady from putting toothpaste on the carpet, make room for the dogs on the couch with us, put the lady to bed for the 14th, no 15th, make that 22nd time tonight.  And he gets just as exasperated as I do and I can see in his eyes how he wishes the whole world just leave us alone so we can snuggle together on the couch and find out how in the world Percy Jackson is going to save Olympus yet again.  We're both suckers for epic adventures and we would both sit on that couch until the sun came up or the book was done if we could get away with it.  But he's too young and I'm too old for all-nighters, so we try to keep it reasonable.  But, man, my first baby is no longer a Little.  He's a Big.  But he still wants to sit and snuggle with me and listen as I read him stories.  And I know this time won't last forever either and my heart will break a little when he's done with story time. 

Too soon I'll have all the time in the world to read and cook and write and won't that be sad?