Monday, October 29, 2012


When we were in the hospital, we always has a basket of candy in Jameson's room.  Nurse Candy, I called it -although, I think the doctors indulged just as much.  It was Hubby's idea, from way back when J was first born and had an unexpected three-week NICU stay.  That boy liked to give us grey hairs from day one.  But that is a story for another day.  Hubby just started buying bags of chocolates to keep at Jameson's bedside to thank the nurses and staff for all they do.  It was a good strategy; I think J got loved on a lot at night when we couldn't be there. When he was first admitted at Children's we got candy as soon as we could think straight.  And for four months, we kept the PICU staff well-stocked with sweets.  We even brought two bags of candy to labor and delivery when Little Lady was born.  Candy is chocolate gratitude.

I can't buy a bag of candy now without thinking about my Jameson and being transported right back in that PICU room with the beeping machines and harsh lights and sterile smells.  Halloween is *awesome.*  

Two years ago in October, we had our first Care Conference when all J's docs met with us around a big table and said things no parent should ever hear.  They talked about filling out a DNR.  They asked us really hard questions, like "are we prolonging his life or prolonging his death?"  They told us they were running out of options on ways to keep him alive. We talked about risky treatment options and were told out of town family should come soon, just in case. 

It was one of the worst days of my life.

There we were, trying to process all of this information, trying to figure out how to see hope, trying to just stay afloat and breathe, all while carving pumpkins and playing in the leaves with Little Man, getting Halloween costumes for both of the boys...

I can't look at a costume without thinking about dressing Jameson up as a sleepy dinosaur.  I went to six different stores before I found a dino costume that would work with the edema and the chest tubes and the picc lines and the vent.  I spent a fortune on it.  He wore it for an hour or so.  We told him how cute he was.  We took loads of pictures with J and Little Man both dressed up.  All the nurses came in and "oohed" and "ahhed" over how adorable he was.  He was seriously the cutest dinosaur ever.  Ever.

October is hard.

September was hard, too, with the wholly unexpected diagnosis of a terminal disease, Jameson's birthday, ECMO.  November is also hard.  November is radiation.  All that traveling through the tunnels, all the angst over whether anything was working and the fear that he may not get better.  December wins, though.

But October is hard.

I have three pumpkins sitting on my front porch waiting to be carved.  One for each of my kids. Little Man picked them all out and he has plans for how each one will look when we light them on Halloween.  I love making things magical and happy for Little Man.  I love giving him traditions and memories.  But buying the candy and picking out just the right costume and carving the pumpkins is so heart-wrenching, too.  It gets a little harder to breathe again.  A little harder to be. 

Tuesday, October 23, 2012

Domestic Goddess

Last night at the dinner table I made a terrible mistake.  We were all sitting there eating our bacon, avocado, and poached egg sandwiches.  It was quiet, which is always the best compliment a cook can get.  Little Man had chipotle mayonnaise running down his chin, the plate were catching the yolk drizzling out from the bread, Little Lady was happily shoving bits of avocado into her mouth.  It was a good dinner.  I was pleased.  I looked up at Hubs, smiled and said, "I love being a Domestic Goddess."  Why, of all the things in the world that could come out of my mouth, would I chose to say that?  I couldn't have just smiled and taken another bite.  Or said I'm so glad you all like dinner.  Or something else.  But, no, I had to say it.

And wouldn't you know it, the Universe just had to hold me to my word and one of the more terrible things that has ever happened happened.

My dishwasher broke.

I'm going to give you all a minute to let that sink in.  The horror of it all.  The dinner dishes.  The pots.  The cereal bowls.  The baby bottles.  I have to wash them  Gasp.

Between the laundry and ironing and dishes, I earned my title last night.  I saved the dishes for last.  And I stood at that sink, trying once again to figure out just what lesson I'm supposed to learn from getting raisin fingers.  I thanked God for the clean water and soap.  For the sponge.  For the food.  For the plates and silverware.  For the bottles with 18 million little pieces all needing scrubbing.  For the baby who drinks from them. 

When I was done, I made a bowl of ice cream as my reward.  I sat down on the couch at midnight to enjoy my ice cream and all I could think was that I now had another dish and spoon to wash.  So not worth it.  Tonight I'll just go for whipped cream right from the can.

Monday, October 1, 2012

Cheese and All

Okay, so here is my MOPS testimony from almost two years ago, cheese and all, as requested by many friends.

Up until Jameson, my life has been fairly unremarkable.  I don’t feel like I have much to share before J.  I grew up in a Christian home, spent high school going to church 2-3 times a week.  I met my Prince Charming in college and we married soon after, hoping to live happily ever after.  I was indeed living a fairy-tale.  I found my handsome prince; we had one perfect and amazing son, two incredible dogs, and plans for much more.  
Sure we moved a lot during the Navy years.  Like 9 times in 7 years.  Of course, it made it hard for me to have a career.  Understandably, it was a lot of upheaval. Yes, my faith ebbed and flowed.   No, we didn’t go to church all of the time…we still don’t make it much more than once or twice a month.  But the relationship has always been there and I know God is always there for me.  I trust His words and His promises.  And He has been faithful, providing not just enough, but always a bounty of blessings.    Yes, we have had difficult times in our lives, but for the most part, I have felt that life has been handed to me on a silver platter and I have been living out a modern day fairy tale.  
And then Jameson was born.   And it was like I was seeing the world for the first time.  Through new eyes, through a heart and soul that stretched in ways I didn’t think were humanly possible.  Could love really go this deep?  Be this strong?  I already knew a mother’s unconditional love, but this was even more.  How is it possible that I was so blind before?  How did I not know it could be this good?  That blessings like this could exist?  Down syndrome is beautiful.  My son was a gift.  And life would always be better for knowing him, seeing him, loving him.  
And then we changed paths- we left a secure and good income for the unknown: medical school.  We moved across the country, traded in a home we loved for family and a dream.  And God was still with us.  We didn’t need income, God would provide -God and student loans. J  And it was grand- living on a budget in half the space and with half the stuff…we didn’t miss it because we were happy.  We had each other, we had our faith, and we still had plenty of dreams to go on.  And God always provided.  Not just what was needed, but He always gave us surplus.  We were blessed.  
And then J got sick.  He wasn’t supposed to get sick.  That didn’t fit into the plan.  He was supposed to start his Target modeling career, go to preschool, and become a big brother.  And those were just the fall goals. But instead, we went in for hernia repair on Aug 31st and life changed.  Jameson didn’t come home.  There were complications with his lungs and he was admitted that afternoon.  Instead of coming home and eating pudding and watching TV, he got a chest tube and Burger King fries from a hospital bed.  And that would be the last food he would ever eat on this earth. 
We spent four months in the hospital watching our son fight.  Four months watching our son suffer.  Four months watching our son die.  
And I don’t know how we did it.  I don’t know how we survived.  This is my testimony and I can’t tell you how it happened- I can’t even explain how God saved us.  I can’t give you words to describe how we managed to stay focused and positive as we watched one son slowly slip away while the other watched and wondered, lost in confusion and sadness.  I don’t know where the strength came from to desperately hold his hand day after day, and helplessly watch procedure after procedure, and hopelessly listen to specialist after specialist tell us there is nothing more they can do for our son.   All I can tell you is that I trusted God.  I believed in His truths.  And I expected Him to live up to His words.  To save our Jameson.  To save us.  
And then Jameson died.  It was Christmas day when I first said good bye, knowing it would be true.  It was Christmas day when we couldn’t ignore it anymore.  Christmas day.  A day of birth.  A day of celebration.  A day of miracles.  And this Christmas day, the miracle is that we are unselfish.  That we see where our son is, where he is going and we let him go.  We let him go home.  We say goodbye and give him to Christ.  God gave him to us and we, with weak and broken hearts, we give him back.  And it hurts and we don’t understand.  But we do it anyway.  
Mostly, because we don’t have a choice, but also because we trust.  We trust a God who has always provided.  A God who has given us not just enough, but always surplus.  A God who loves us.  A God who loves Jameson.   And it works.  God saves Jameson.  Jameson is now home and he will never again know pain, suffering, hurt.  Our son is waiting for us, waiting to share the glories of salvation with us!  It wasn’t what I wanted.  It was never in my master plan to lose my son and then three months later to lose another beloved, yet unknown baby.  But it is okay.  It is okay because I still trust God. 
I cling to Him like a toddler to a mother’s leg.  God has to drag me around heaven on daily basis.  It is the only way I can get by, clinging to God as I do.  But it is so much more than just getting by.  Even after all of this- even after losing two babes, it is alright.  And that is a miracle, my friends.  It is an absolute miracle.  Because I am not just getting by; God has redeemed my broken heart.  He heals me on a daily, hourly, and sometimes minutely basis.  He HEALS me!  Because I ask Him to.  Because I believe He will.  Because I trust His words.  
My testimony is only important because I have been saved.  I have walked through hell on this earth and I have survived with His grace.  My words matter today because God has redeemed me –and instead of seeing a broken woman, falling to pieces, you see a saved woman, made strong through Christ’s love.  I am okay because His salvation means this separation is temporary, this loss is only short term, this good-bye is not permanent.   And our family reunion will be so sweet someday!   I will receive the most amazing tour of heaven from my own children.  
I am unremarkable.  But my God, He is not.  Helen Steiner Rice once wrote that “Faith is a force that is greater than knowledge or power or skill, and the darkest defeat turns to triumph if we trust in God’s wisdom and will.” Only God can redeem the worst nightmare possible, only God can turn pain into praise.  Only God can turn a shattered life into a powerful testimony.  And that is the only reason I stand before you today.  Because our God is enough.  He is enough. 
 As a little girl, I totally bought into the Disney dream.  I wanted to be the Princess and live out the happily ever after.  And I still want that.  I am still a little girl, hoping and dreaming for a happily ever after.  And with God, I still believe it can happen.  It just may take a little time, and it won’t all be on this earth; but we are, after all, the Bride of Christ.  I am the Bride of Christ.  And while I may have found my prince charming and have a little slice of heaven now, there is still so much more to look forward to, still so much to hope on.  Because “Someday THE Prince will come, someday we'll meet again, and away to his castle we'll go, to be happy forever I know. Some day when spring is here, we'll find our love anew, and the birds will sing, and wedding bells will ring, some day when my dreams come true.” –Snow White