Thursday, September 15, 2016

Nine

Happy Birthday Jameson!



You would be nine today.


It's been six years since we were able to celebrate with you here, and even then, it was in the PICU, with ECMO and it was so much fear and exhaustion and anxiety and heart-ache.  That year, when you were three, we had such a great party planned for you.  Dinosaurs.  Everything was going to be dinosaurs.  You were totally into dinos.

But now you are nine and its been a whole lifetime since I've seen you and known you.  And I'm clinging to what I knew because I don't know what else to do.  So I've got a dinosaur tablecloth spread across the kitchen table in your honor, J, and later this morning Little Lady and I will go and get the dinosaur balloons.  And we are making chocolate pudding cake.

We are going to hold on to your memory a little tighter today, when we all wish we were holding on to you, my boy.  I dream of what it could have been, what it should have been like.  How I'd take your picture in front of the blue door to show how blue those beautiful eyes are.  And your fiery red hair would flame in the sun.  And when you smile, your laughter would fill the sky with joy.   

I reach to hear your laughter as I take the picture, but it is not you in your nine year old glory, but the faint memory of your laugh when you were two, because there were no more laughs after that.  Not here, at least.



I know this looking back and dreaming on what should have been is no good.  But some days the longing for you and the life we dreamed of just pulls me in.  Oh if only.  If only.

I know that looking forward to what will be is better.  And even though you were only three when we last got to sing Happy Birthday to you on this earth, I do not despair that it is over.  Someday I'll see you again.  And I will get to know you again and hold you again and sing to you again and I will never have to say goodbye ever again.  

"We will not lose heart.  Even though our outer nature is wasting away, our inner nature is being renewed day by day.  For this slight momentary affliction is preparing us for an eternal weight of glory beyond all measure, because we look not at what can been seen but what cannot be seen; for what can be seen is temporary, but what cannot be seen is eternal." 2 Cor 4.16-18

Happy Birthday, Jameson.  I miss you with all of my heart and looked forward to the day we walk together with Jesus. 




Monday, May 16, 2016

Double digits

So it's been a little while.

I'm not sure why either.  Partly because school, work, kids, residency, life.  Partly because I've felt a little silent.  Or maybe just exhausted.  The class that I started taking in January was pretty brutal, plus I started working full-time.  I think between the homework and writing for school and the 445 a wakeups with the go, go, go all day long life just wipes me out.  I think for a long while, I was treading water, if you will, just trying to stay afloat.  But Mother's Day was just over a week ago and the scars cracked open a bit.  I've spent a lot of time reflecting on life and grief and happiness and hope and how it all ties together to make this beautiful, broken existence.

It's dreary and a little bit foggy this morning as I write.  We've had a really warm and dry spring lately and yesterday was a day of slow, calm drizzle.  It was a welcome change, the rain.  Now its starting to dry out and the birds are singing and the world outside my window is green.  Deep, dark evergreen, bright, electric spring green.  And everything in between.  The big leaf maple outside my back door is already sporting leaves bigger than my head and there are three little peppers ripening on the plant in my front yard.  As the seasons change from spring to summer and the rhythm of our life shifts to later nights and lazier mornings and most of life happening out of doors, the memories and experiences also shift. In a way, a part of me is frozen in that last year we had with Jameson.  I see it even with the seasonal shifts.  This is the kicking off the last summer of shiny in our lives.  May-August of that year was amazing.  It's so good to remember.  It inspires me to keep carpe dieming the crap out of life, too.

Not only does this seasonal shift have me feeling all nostalgic, but this week, my Little Man hits double digits.  He's not so little anymore.  And I've been a mom for a cool decade now.  How did that happen?  He's my whole heart all bundled up into a boy and I can't even begin to say what he means to me without swelling with so much love I might burst and die just thinking about it.  And he turns ten, which seems so big and round and momentous.

He's ten and she's just a little over four and exactly the same age he was when his brother got sick.  I look at Little Lady and think she seems so young; all of my memories of Little Man at that age are all so big and he seemed so much more grown up in my memories.  But I suppose that happens when life get all crazy like it did.  It's overwhelming, though, to see her and remember him and the whole lost year where we were so lost and gone and he was lost and everything was big and scary and chaotic and then quiet and sad and lonely.  And I wish I could go back and just hold him and protect him and let him be as little as he should have been able to be.

And he's ten.  And I'm going to blink and he'll be eighteen, so, really, I should just never blink ever again, I suppose.  It's so cliche, but annoyingly true how fast it goes by.  And you never believe it when they are little and you are in the throes of spit up and poopy diapers and fatigue and the whining and the fantasies change from exotic beach vacations with umbrella drinks and naps in the sun to really, just being able to pee alone and take five minutes without feeling guilty.  But its so true, that it flies by.  And all of a sudden, they are big and independent and it's a little startling how you can just blink and have a ten year old.

Luckily, he's still only ten.  Ad really, nine for a few more days.  And he still needs me to wake him up and pack his lunch and he still wants to snuggle on the couch and read together, even if it happens a little fewer and farther between.  He has such a big heart and I'm so glad he's mine.  And I'd love to keep writing, but I have to go wake him up for the THIRD time so we aren't too late to school.  Already acting like a teenager....


Tuesday, December 22, 2015

Christmas

It's Christmas week and it's impossible as always.  All these feelings.  Plus a giant paper that I've been putting off for almost a month.  Grad school deadlines may be the death of me.  I've got til NYE.  I've got Little Man working on some homework.  Little Lady snuck the Nativity under the table and is playing with Baby Jesus.  And before you go and think about how cute she is, I'm hearing talk that Baby Jesus has lava coming out of his butt.  Almost four and the potty talk is off the hook.  So Merry Christmas and pass the Pepto. Sigh. 

Last week was our big family vacation week.  And in true family fashion, Hubs had pneumonia and sinusitis and the rest of us had colds and we were all just a big hot mess.   So instead of going on a trip to see the ocean and big trees, we had a staycation and our goal was to eat out at least once a day and do something fun everyday.  And sleep in and nap a lot.  So that's what we did.  It was pretty nice too.  It was actually really nice, because the pressure was off, we relaxed a lot and we had some good food.  We also saw Star Wars and loved it, so there you go.  I'm calling it a win.

But now here we are and its that week.  The one that is merry and bright and happy and festive and filled with cheer.  Except not so much.  Because five years ago we were in the PICU with our Jameson, waiting for him to die, knowing that there was nothing else we could do, except still pray for that miracle and try to keep our boy out of pain.  And I'm still right there, five years later this week.  Watching his body betray him, watching everything spiral down, trying to remain hopeful in the face of despair.

Part of me doesn't mind being stuck there.  Its sounds bad to write that...like I'm being dramatic on purpose or something, but this was the last week of my son's life.  Even though it was horrific, he was still here and I miss him so much.  As bad as that was, living, continuing to be without him here, sometimes that feels worse.

It's hard enough on normal days and Christmas isn't close to normal.  Christmas is extraordinary.  Christmas is magic and happiness and childhood warm and fuzzies.  It's the birth of our Savior, the birth of hope in this broken world.  It's love, unconditionally given, all wrapped up into one day.  It is presents and rice pudding and crab legs.  It is staying up too late and twinkle lights and Midnight Mass.  Candles and chocolates.  Cookies with sprinkles.  Cousins and Grandmas and special traditions.

Except that it is a lot more than those things now for me.  For me it is also sadness, grief and death.  It is cold and loud and overwhelming.  And when I want nothing more than to run away to someplace warm and quiet and undecorated, I try to think about what it used to be.  And then I try to make that happen for my kids.  But it is a struggle at times.

And I certainly still have special moments that I love about this season.  The whole celebration of Advent and really focusing on Christ's birth has truly become the joy of Christmas for me.  This is a beautiful thing.  I love passing this on to my kids, too.  We light the candle and read the Advent book.  And we try to do everything else so they can have the warm and fuzzy memories, too.  We bake cookies and wrap presents and sing carols.  We will see Peacock Lane and the Christmas Ships (if we can get our acts together this week.)  There will be Midnight Mass and more presents than they imagined and rice pudding and crab.  We will stay up late and eat chocolate.  And I love the idea that even though this season is a strain for me, I'm still making it magical for them.

But the 26th always comes after the 25th of December and Christ's birth will forever be tied to Jameson's death for me.  In a way, this perceptive is amazing.  Hope is birthed the day before despair tries to overthrow everything.  And even though despair may win a battle or two along the way,  I already know the ending to this story.   And I have hope that can carry me through these dark and hard days.  “And God will wipe away every tear from their eyes; there shall be no more death, nor sorrow, nor crying. There shall be no more pain, for the former things have passed away.” Revelation 21.4.

I wish you all a very Merry Christmas.  May the birth of Christ truly be your light and hope in this world, as it is for me and mine. 


Monday, November 9, 2015

Filling the Bank

I have about 30 pages of text to read and 15 pages of papers to write this week, so I should be working during this naptime.  But. One of Jameson's songs is on the radio and outside the sun in shining, the golden leaves are slowly floating down from the trees to cover the ground in a blanket of color, there's a fire burning in the fireplace and I've got a clean kitchen and a cup of hot tea in front of me.  There is so much good right here right now.

In the business of life -and oh my, how busy is gets- its so easy to just jump into crisis mode and focus on everything that need to be done.  But then you just miss all the really important stuff.  And there is so much good right here right now.

And I know that there are so many harder days coming soon.  The clouds will roll in and the rain will soak me to the bone.

But right now, in this moment, the sun is filtering through the golden trees and the birds are singing and I'm just going to sit here drinking my peppermint tea and being thankful for all these gifts big and small in my life right.now.  I'm still counting gifts, even if I rarely remember to write them down.  But these gifts...the seafood in my fridge, the husband who still loves me, the coffee, the warmth of my home, the community of friends, the mercy and grace of God who never gives up on me, the new galoshes arriving Wednesday...big and small, this noticing and thanking process, its like a bank account of joy.  And the more I put in, the bigger the account gets.  And when I go through a season of less, a season of sadness, I'm still making interest even if there aren't any recent deposits.  It all adds up.

Thanksgiving is two weeks away.  It's also the due date of the baby we lost four and a half years ago, that first spring after we lost Jameson.  I didn't think it would still get to me, this baby that never was.  The baby that if I had, I wouldn't have my Little Lady.  But I still remember and I still miss the baby I never got to hold. 

And oh how I miss my J.  The holidays always seem to make it harder to breathe.  That black hole inside me seems to grow and the whole world loses its luster.  But just as we remember and wait for the return of the sun when it goes behind a cloud, I will remember the joy and look for it still.

So today, even though I have a million things to do, I'm just going to be still, right here and look around me and count my gifts.  The heirloom quilt on my couch. The ugly wool socks on my feet. The restless napper down the hall. The dishwasher humming away in the kitchen. Blue skies with fluffy white clouds.  Getting to follow my dreams and go to school.  Having a safe, warm home.  Being able to take a full, deep breath.  The gifts are endless.  And on a day like today, when I can see just how much good there is, I'm going to do my best to see it all and save it for a rainy day. 

Sunday, October 18, 2015

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. 

Friday, September 25, 2015

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

Tuesday, September 15, 2015

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.