The Beginning of The End

I think I've got the "Christmas" side of the struggle of this season worked out in my head now.  I know the "right" way to look at it, I've processed and know what I "ought" to remind myself as we move through this special season in respect to the holiday. I've learned, though, that doesn't mean every day my head and heart will be in a place of peace and joy about it, but that I feel better overall that I can handle it.  That I'll be able to make it through, remembering the real reason for Christmas--celebrating the birth of my, and Drew's, Savior.

But now I'm left with the other side of why this is a difficult season for us--because of where we were in our minds and hearts during this season last year.  It will be a year tomorrow when we had the scan that told us whether the trial was working or not.  It was, in our minds, our last chance.  I wrote in my personal journey that I never wanted anything so badly in my life.  That I felt sick that whole week, I actually hurt, as I anticipated what the verdict would be.  And then the day came, and some many stood behind us in support, joined us in prayer for positive results. 

A friend came with me for the scan that morning, but the day seemed to go all wrong from the beginning.  The wrong scan was taken, Drew's bone marrow biopsy was difficult--they had to puncture the socket in his hips three times on both sides, and still didn't get a very good sample.  Drew woke up hard from that procedure.  He was upset for quite a while, and it was so hard to see. My friend snapped this picture. I'm amazed at how many times I've asked her for it (I kept not saving it).  I don't want to remember that day, but it's like I have to see it.  I have to see how bad it was.

And then finally, the results later that day: bad news.  The cancer was continuing to grow, and spread.  It was around his heart now, and in his lungs.  The doctors were fighting back tears themselves as they told us to take him home and enjoy Christmas together, go on that Make a Wish trip, and do it quickly.

We went home that night and went straight to Molly's school concert, that that same friend had to get her ready for because we were so late after all the delays that day in Rochester.

I could feel the eyes on us at the concert, since so many were praying and waiting for the news too.  But I couldn't tell them, I couldn't see their faces as their spirits were let down, like ours, with the news.  We watched her and left, trying to keep it together, but I remember tripping and falling hard down the back stairs.  We bribed Molly with a Culver's sundae to-go so we didn't have to face anyone at the reception following the program.  We came home, and I took a hot bath, and cried.  And then sat down, posted the awful news, and went to bed.  Feeling like we let everyone down.

We had to make a decision at this point, a year ago.  And it was the hardest one I hope to ever make.  God knows we would have done anything, ANYTHING, to save our Drew.  But it was time to think about Drew, not ourselves. 

Earlier that week,  after a difficult dressing change, a feeding tube replacement, and still sick from chemo, Drew looked up at me in the clinic with the saddest, most heartbreaking look in his eyes.  Without saying a word, I seemed to hear him pleading with me "no more, please".  I tried to cheer him up just after taking selfies with him, but instead I just captured the look that I'll never forget anyway:

After all that he went through, bless his heart, I only saw that look a few times during all of treatment.  But especially this last time, I knew I couldn't see it again.  I couldn't ask any more of him.  I couldn't pack him up and ask him to endure anymore without being convinced it would help.  And we weren't convinced anymore.

Josh and I decided together that week that when it was over (because we understood it was when, not if), that we'd regret what we put him through more than what we didn't try.  We knew that watching him suffer anymore, seeing those sad eyes one more time because we couldn't let go, wouldn't accept "defeat", would cause us more guilt and remorse than wondering if some phase one trial in Texas would have bought us another 3 months.

And so, despite how much we personally wanted to "keep fighting", we stepped back.  We took our hands off, and put Drew into God's.  We scheduled his central line removal, and made no plans to do any more kind of treatment--palliative chemo was declined.  I learned a year ago this month, that sometimes the hardest thing in the world to do, is to do nothing at all.   To sit back and watch, completely out of control...

We knew what it meant.  We hoped and prayed for the miracle like everyone else.  But I felt God preparing us for what was coming.  We knew it was our last days together.  And indeed, we had just over a month left.  In His power, he gave us the strength to say, "we will enjoy this time together.  If there is a day coming to be sad, we will be SO sad, but today, we will choose joy".

 It was our last Christmas as a family of 4, and it was amazing.  Surprise after surprise for our family.  A gift on our step for each 12 days of Christmas.

Of course Santa coming on his sleigh to visit:

High school students coming with more gifts for the kids than we had bought them! 

Gifts from so many in our lives--the babysitter brought them a fish, the oncology receptionists gave him his first combine of the season:

So much joy, so much to be thankful for, and we hadn't even done the Disney trip yet!  Drew was very much himself.  Very much "just" a two year old boy, a  little brother, enjoying Christmas.   I watched it all, took it all in.  Feeling a little like Mother Mary, "Pondering these things in her heart", fighting off the despair, trying not to think about what was coming.  I knew as I watched that this was the Drewy I was going to miss.  Not a Drew hooked up to machines and struggling to breath, I somehow understood how I could let that Drew go...but this Drew.  Oh!  I just wished I could have bottled  him up.  Frozen time.  Snatched him up and ran away somewhere that cancer couldn't find us.  

Through God's strength, we were able to enjoy it, enjoy him, last year.  But now, that day has come for us to be SO sad.  It's like my heart won't be cheated.  It was promised it's time to cry if only it held off so we could enjoy our time together.  And it did.  But this Christmas, he's gone.  It's over.  That Drew of a year ago is not coming back to us.  And we are left with that deep disappointment, that frustration and confusion, that huge sense of loss. 

This year has shown me that grief can't be avoided.  Our feelings won't be ignored forever.  And the longer they are held off, the more they hurt coming out.  Each step of our story this year that I've relived in hindsight, I've had to deal with the emotions that I set aside at the time.  And that was fine, thank God He empowered us to do that!  But now is the time to feel them.  And this season, these feelings, are the hardest.

How am I going to get through this side of Christmas time?  I think I'll just have to feel it.  I'll just have to remember the desperation, the disappointment, the deepest hurt I buried last year and lean in to God as I let them pass.  Rely on Him, who has gotten us this far.

I am beginning to suspect that even if I know all the right things in my head, my heart will probably never truly understand, never be "okay" with what happened.  I'm trying to change my heart's prayer from, "Why?? Convince me this is okay!" to "Give me peace about it".  Lord, let my heart be okay with it just sitting there as it is, ugly, seemingly unfair, and not making sense. Allow me to be able to leave it alone, chalk it up to something I trust I'll understand someday.  Because I think not doing that, trying to convince my heart it's okay Drew died will be a lifetime of work that I'll never finish.  But through the Grace of God, maybe my heart will be able to say, "I'm okay with not knowing why, and it doesn't make sense to me, but I trust it will someday because I know God loves me"

This is why this season is so hard.  Because it's not JUST about Christmas without my little boy, which is hard enough.  I have all this emotional baggage around this holiday, all these emotions associated with this time of year-good, bad, and awful.  But, with many prayers and the strength of God, I know I'll get through it.  Because He's gotten me through so much already.  Row by row ❤

The Real Meaning of Christmas

Molly asked to turn the radio station to the station that plays Christmas music.  I hesitated.  I'd been holding her off before Thanksgiving, saying it wasn't time yet.  But finally, it was time.  Yet, I still didn't want to do it.  I told her I just didn't think I could.  "What do you mean you can't?" she asked.  I thought a minute, and I told her I guessed I was afraid.  "Afraid?  That's silly.  How could anyone be afraid of Christmas music?" Well, I thought another moment, and told her I guessed I was really afraid of how the songs would make me feel.  "Oh, because Drew's dead?" She asks bluntly, like any five year would. "Yes, that's why, " I answered.  "It's okay Mom, you don't have to be afraid."

And I decided, she was right.  And maybe about more than just the Christmas songs.  I don't have to be afraid of how I'll feel this holiday season.  How doing all the preparations, going through all the motions, continuing with favorite traditions, will make me feel.  Will it make me sad?  Will it hurt so, so deep?  Maybe.  Probably.  But maybe not sometimes too.  And if it does, is it any worse than normal?  Any worse than what I've felt in the course of the last year?  I guessed not.  And I turned the station on.  And you know?  The first song--"Happy Holidays" by NSYNC didn't make me sad at all.  I like that song!  (don't judge...).  I sang along, and it was okay.

But songs came on during our half hour drive that did make me feel sad-- The Veinna Boys Choir, with the orchestra singing Cannon in D.  Is Drew singing in a choir like that this year?  Is his voice among the beautiful ones in Heaven singing carols to Jesus?  The little drummer boy, oh! I'm sure Drew's going to town on his little drum...And it went on like that for a few songs.... and I cried.  But you know what?  It was okay to cry too.

And as a few more songs came on about baby Jesus, I got to thinking about the real meaning of Christmas anyway.  It's not about putting a tree up together, watching the joy of children opening presents and looking at twinkling lights.  It's not just about making cookies and pies, sending out Christmas cards, and visiting Santa.  It's not even all about spending time with family and friends, as much as we all enjoy that.  And I realized that if I just focus on those things, and how all of them will be so painfully different this year without Drew, it will for sure be an awful Christmas.

What is it really about?  What is the point?  Celebrating the birth of Jesus.  Remembering the miracle of all miracles--Jesus, son of God, born of a virgin, to die and save the world.  It's the reason we're able to have any joy at all in this terribly unfair world, and especially during this very special season.  And that, THAT, I decided I could celebrate.  All those prayers for a miracle in Drew that were said a year ago, which seemed to go unanswered in this age, I believe in my heart were answer in that past age, when Jesus was born into this world to save us all.  I can rejoice this season if I remember that.  That the God who created all things, loved us so much He sent His only Son to save us.  Not merely to save our earthly lives from horrible things like cancer, but to save our very souls for all of eternity.  Joy to the World, indeed.

And in the van that day, I realized this.  I got over my fear of how I'd feel, and left myself open.  I was sad, but in a more unguarded state, God reminded me what we still have to celebrate, what can bring me joy, despite my current sorrow.  He showed me how I can get through this season, without all of my family together at Christmas--by focusing on what it's really all about, not just what we've made it to be in our culture.

And as Hark the Herald came on, it sunk in how wonderful this Christmas will be for Drew.  Someone gave me an ornament sometime last year which we hung last weekend, which had a poem on the back:

"This is the greatest Christmas That I've ever had"  Yes, its my first Christmas without Drew, but it is Drew's first in Heaven!  I can just imagine the delight, the joy, the wonder in his eyes as he gets to watch the celebration unfold in the Heavenlies and be a part of it.  He had so much joy when Santa came to visit us last year, how much more joy will he have when he beholds the face of Jesus and sits on His lap this Christmas?

And he's not alone, he'll be surrounded by more family than I will!  Great Grandpas and Grandmas and so many others will get to watch, will get to experience that with him.  And I can smile about that.  I can be happy for him.

As I watched Molly sing along to Rudolph the Red Nosed Reindeer in my rearview mirror that day, it also reminded me how much I don't want to miss with Molly this Christmas.  How much more of a tragedy it would be if I was so distracted by who isn't here this Christmas, that I miss who is.  At almost 6, and a very rational thinker, she already is asking a lot of questions and coming to conclusions on her own about the Elf on the Shelf and Santa.  It very well may be the last year we can even pretend like we believe in that kind of magic at Christmas.  And I know now, there are no second chances.  There are no guarantees of a next year.  I have to fight to stay present this year despite how much my heart aches, for Molly.

So I'll enjoy watching her get her face painted and giggle because of how much it "tickles", before she isn't interested anymore...

And I'll ride on the horse drawn carriage with her at the Christmas in the City festival, before she doesn't want to ride it with her old Mother anymore..

And I smiled from ear to ear at how adorable she looked before her Kindergarden Christmas concert, and watched proudly as she did all the actions to songs...

But even if I stay focused, even if I do a good job of remembering the reason for the season, I know certain moments, certain events and certain songs will still cause that deep ache in my heart to flair up (like Jingle Bells).  As we put our tree up, certain ornaments made me cry.  While I watched Molly on stage at that Christmas concert, I couldn't help but realize that I'll never see Drew as a Woodson Critter singing about snow pants. And I'm sure as I make my Christmas cookies and pies without the sweetest little helper,  I'll probably cry again. Life has taught me that you can be presently sad, yet still have joy.  They aren't mutually exclusive.  I'm determined to show during this season how that's possible.

I'll keep reminding myself the reason we can rejoice this Christmas every day.  Because I've also learned it really is a daily battle, not a one time decision to "Choose Joy".  I can be sad about who's not here, I can grieve at the loss of what I thought I'd get to experience with both the children I brought into this world, but I can still celebrate this season.  I can still have joy in my heart, because of the miracle of a little baby, born over 2000 years ago.

Recognizing Drew in Today

I've been feeling much better this week after the wave of grief that crashed in a couple weeks ago. All the encouragement, and the memories that were shared with me throughout that week really helped to comfort me.  It left me wondering why I didn't ask for memories before!  Each was like a little gift, a little glimpse of him again, and it was wonderful.  It doesn't bring him back, but it reminds me how truly amazing he was--and still IS.

I love that it's a lot of nurses who have the stories too.  Just like in his last week, as staff member after staff member came through his room, many leaving in tears, I realized who his friends were.  Not many kids his age, but so many adults from all walks of life, that obviously grew very close to him.  Many that I think would actually call him their friend, as crazy as that sounds.  A little two year old boy, but that was him.

He drew people in, and shared with them his joy, his love and sparkle for life.

And lately, I seem to be able to feel that sparkle again.  I may not be a firm believer in physical signs yet, but I have had several experiences where it just feels like him.  The playful, excited, happy little "Drew" feeling seems to surround me, and I could swear he was there.  It's a hard thing to describe, but it washes over me at times.  A distinct presence, that has a start and a fading away...I felt the sensation several times last week, as I read those stories and memories--almost like he was smiling along with me at the memories, or waiting to see my reaction to his antics that I didn't even know about (how many nurses and ladies did he snuggle when I was out??).  As I read the memories and felt him again, I was surprised and happy that it didn't just make me more sad that he's not actually here anymore, but that it really did make me feel better. 

But I also decided that maybe I don't need to focus on remembering him so intently as I talked about last post, but welcome who he is and his place right now in my life.  Recognize the new relationship we have together, because there definitely is one.  I talk to him and Snick a lot during the day while Molly's in school.  I'll do things differently, respond in different ways to things in my life, because of his. 

And it's not just the feeling of his presence I'm beginning to recognize that is with me, but that he is also with me through the evidence of, and impact from, his life.  Which I carry with me into each new day.  Just like when I make my pie crusts from my late Grandma Phyllis's recipe, and she's a part of my morning again.  Or how the influence of a dear friend who convinced me to cook with fresh ingredients and whole milk can be seen, even though she has since moved away.  Or in the warmth of the scarves handmade by another friend who's moved on from Austin, warms me up physically but also with the warmth of our friendship even though we are states apart.  I don't have to put so much pressure on myself to remember the past in detail, but maybe instead I should try just as hard to embrace the present, and recognize the ways Drew is and will always be a part of my life right now.

There is so much going on with Warrior Wagons right now, it is another place to see Drew in our lives today.  I am overwhelmed by the support and opportunities that are coming our way.  A handful of businesses and just as many individuals and families are coming together to collect items for the Wagons or to raise funds to support the Wagons.  God is providing beyond what we could have ever imagined, and we are so grateful for the support.

The impact Warrior Wagons is having on families is just as amazing, if not more so.  Families are reaching out to us with appreciation, but also stories of the comradery the Wagons are bringing between cancer families, and the encouragement they gain from our story. One Mom even shared with me that the only place besides her lap where her daughter is calm in the examine room, is in her Warrior Wagon.  That she imagines Drew somehow comforting her in the Wagon at those moments.  It's such a beautiful thought that brings tears to my eyes, making me confident that we are doing exactly what we are suppose to be. And it brings me so much joy to imagine along with her that Drew is not just the inspiration behind the cause, but a very real part of it right now.

And as I share about him and what we learned from his life to various groups as a speaker, I can feel him with me again.  I had another opportunity to speak just the other week, this time to a high school religious education class.  I was asked to share how my faith carried me through our last year and half, which at first seemed pretty broad.  But I feel like I narrowed down what living by Faith meant for me, and focused our experience into a discussion that was relatable and appropriate to the high schoolers about living with the big picture in mind.  It seemed to be well received, and I even heard back from a student who is now inspired to be pediatric nurse, which is awesome!  The world needs great pediatric nurses.  This talk made six different times this year that I've been privileged to share our story.  From preschoolers to ladies more advanced in age and several groups in between, I am always left feeling so honored to be a part of what God is still doing through Drew's life, revealing Truth through the tragedy. 

Whenever I give a talk about Drew, share his story and all that we learned though his life, it helps bring some purpose to our suffering.  And as I speak, I can tell he's with me, that "Drew" feeling comes to me.  And "we" share the story, as if it's our little thing together.  After all, it is his story!  Like, I could say "Drew and I have a gig next week, talking to another group." 😉

Obviously there are some days I wish I had more than just a feeling of his presence, and that I want HIM here, not just evidence/influence of him in my life.  I want so desperately to actually feel, hold, smell and hear him again.  And I think it's those days that I am clinging to the memories, trying so hard to hold on to the past.  However, I think I'm seeing that to move forward in a healthy way, I have to let go of the past, not try to hold on so desperately.  Instead, focus more on the present, acknowledging and enjoying the ways Drew's still very much a part of our lives, even as I am always looking forward to the day we can be together again.



Thanksgiving is this week.  A time to count your blessings, to look around and appreciate all you have.  A day we spend with family, eating and celebrating with thankful hearts.  I remember last year people asking me if it was going to be hard to be thankful, in the situation we were in.  And maybe this year some of you may wonder the same thing.

The answer I gave last year was that we were very thankful, and had spent the whole year counting our blessings and appreciating what we had--because we understood how quickly it can change, how fragile life was.  And this year it's even more true.  We not only know, but have experienced how fragile life is.  We've seen life and death now, and live in the world with that reality as a part of our daily life. 

Are we thankful?  Yes, so very much.  I kiss and hug my Molly every day, many times just because I can.  We thank God for each donation, each family that we have the privilege of helping through Warrior Wagons.  And I am so very grateful for each opportunity I'm given to talk about my Drew, and share all that we learned with and through him.  I need to continue to choose to be thankful, which I know will bring me true joy, each and every day.

Last thanksgiving Drew was feeling so good, he acted like nothing was even wrong.  He played with the teasing grandpas and uncles, sat with the snuggling grandmas, stole Great-Grandma Marj's walker, and colored at the kid's table.  He reminded us all once again, to choose joy and to live life to the fullest every day. 

I wrote in a CaringBridge update last year at Thanksgiving time, "So as we go into Thanksgiving this year, with the reality that we may not have our Drew physically with us next year, we continue to be so so grateful for the time we have. To savor each moment like it may be our last. And give thanks for all God has given to us this year."

This thanksgiving I'm again so, so grateful for what have and what we are able to do.  And just as thankful for what we had, all those stories shared last week reminds me that each day with Drew was a such gift. How blessed we are that all the bad days of his last year probably would combine together for a total of like 8 weeks, but the other 44 weeks of the year were pure joy, and we didn't take a single day for granted.   And increasingly so, I'm also thankful for the many ways Drew is still with us, and always will be ❤

Keeping the Memories Alive

I've been struggling lately with a number of different emotions.  Guilt, anger, and doubt to name a few.  I've gotten so caught up in some, they've really gotten to me in the last several weeks.  But when I really think about how I'm feeling, I've decided it all comes back to my longing for Drew.  That I really just simply miss him.  And as time passes, it seems to be getting harder.  It feels like it has been SO long since he was here. 

You know what it feels like on that last day of a vacation without kids?  You really miss them.  Other kids remind you of yours.  You wonder what they are doing.  You try to recall their phrases, their unique mannerisms and smile, and it hurts a little missing them.  You can't wait to get home to them, you almost feel sick.  And when you are almost there, on the way down your street, you're nervous, anxious, to see them.  And then there they are!  It all comes flooding back and you feel complete again.  

Now picture that reunion never coming, or at least that you have to wait a lifetime for it.  Stretch that homesick, missing-them feeling out for over 9 months, with no joyful conclusion.  That's kind of how I feel.

I try to not be dramatic about what we face, to go on and on about how hard it is, how much it hurts, because I think it's a dangerous hole that would suck me in.  I don't want to give in to self-pity or feeding off other's sympathies.  I know that's not what God wants me to do, or Drew for that matter.  And overall, I want to be relatable, approachable, because I know that I am just like anyone else, I just got dealt a tough hand. If I'm at all special, it's because of God's work through me, not anything that I am on my own.

But I think sometimes in trying to avoid taking on a victim role, I swing the other way too far.  I don't allow myself enough time to just be sad or I am mad at myself if I do.  But when I remember how big of a deal this really is, I seem to be able to give myself permission to be a mess every once in a while.  To not apologize for not having the answers, or not even wanting to ask them, just wanting to cry.  Because I miss my baby.

I've said all the good feelings in the world--all the love, the compassion, the joy--are a taste of Heaven.  That that comfort and love you feel through good, genuine, acts of kindness from others is what I imagine the essence of Eternity will be because God IS that feeling, that love.  I've also decided however that the opposite is true.  This pain that I have lived with everyday since January 19th, 2017, which some days feels like it'll never end, is a taste of hell.  Its a cliché I know, "this is hell on earth", but I really think it is.  It is a taste of the despair and the anguish of pain that will never go away, that will never end.

Some days that's how I feel right now.  It seems this pain will never end, even the 60 years or whatever I have to wait to be with him again feels like it might as well be an eternity.  But then I remember the Hope we have.  It WILL end.  It will be over, and only the good will be left, because of Jesus.  How awful if we didn't have that hope!  It's what keeps me going.  What keeps me motivated to get through this taste of Hell, because there is a light at the end of the tunnel.



But in this tunnel, it can be really dark, and scary.  I miss him so, so much.  And as I miss him and try to remember,  I'm getting so scared that I'm forgetting him.  I can feel the memories starting to fade.  I'm aware of how much harder it is each day to recall what he smells like, how his voice sounds first thing in the morning, the way his eyes twinkle with joy like he can't contain himself.  I look at pictures and wonder if I remember him, or just the pictures.  I watch the videos and hate that its starting to feel like I'm just watching some character on TV I don't know personally, but recognize from the show.  As we move forward with our story, my heart is desperate to remember him, to hold on to the memories.

But I don't think all the details have to be forgotten, that memories have to fade beyond recognition.  Like remembering the alphabet or multiplication tables in school, you need to practice them to keep them fresh in your mind.  I need to practice remembering, work at keeping them alive.  So I've been trying to actively remember him.  To look at the pictures, and try to remember that specific day, what we were doing, how the scene smelled, felt, sounded.  And I can do it.  I can picture it, him, again.  And so I'll share a few memories, a few things about Drew, with you now. For you, but just as much for me....

This was one of our last trips to our park.  It was an unusually warm late fall day.

There was a chill in the breeze, but the energy and joy from the kids kept me warm.  We knew that Drew probably wasn't going to make it at this point, and there was an awful since of awe in knowing that this was probably our last trip to the park together.  The weather was going to change, we wouldn't come, and he would die before it got warm again.  I tried to soak in every part of the experience, but not make it weird for them.  It was one of the first times I handed Molly my phone and had her take the pictures.  Of Drew and I going down the slide.  It was too scary for him to go down on his own, but with me, he would do it.

He was kind of a pansy about cold weather too--not built for Minnesota we always joked.  On the way in to Walmart, with all his winter gear on, he'd get a face full of cold wind and you could see it literally take his breath away.  He wasn't a fan of playing in the snow either.  Molly would want to go out, but Drew would say, "No!  Nooooo...."  So when he would agree to go outside in the snow, I'd have to take any pictures fast before he'd be whining to go back inside.

He was happy 97% of the time, completely easy going.  I've shared before how in his early, early years my biggest complaint was that he smiled too much.  When he would be nursing, and come off and look up at me and just smile, I would try to get him back to business--I didn't have all day here!  But bless his heart, I'll always remember and smile at how he could get distracted from eating by smiling at me...

I remember the nights late last year, I'd have sets of sheets, towels, and PJs laid out at bedtime in case he'd get sick overnight.  I'd hear his cry, run in and get him cleaned up, change everything out, and sit with him for a moment or two, lay him back down and go back to bed myself.  I'd lay there and couldn't help but smile through my irritation that he wouldn't always go right back to sleep, but lay in there and sing Jingle Bells to himself.  What a clown. After just throwing up and having a total bed change, how is he in there just singing Jingle Bells to himself??  Gosh, I'd do anything to hear him sing Jingle Bells in the middle of the night again...

He really didn't require too strong an arm of discipline.  All you had to do was raise your voice and give him a stern look and he'd cry and immediately want a hug.  But Molly and I still talk about the time in Walmart when they were both in the "crazy cart" (that giant 2 seater attached to a regular cart) and he got down as I was self checking out and took off.  I chased him down and brought him back to Molly and he cried the whole way home because he got in trouble, and I was mad at him.  (I think Molly loves to remember when Drew as naughty too!)

When he did get mad, he was ticked.  I think I'm the one he usually yelled at the most.  Not really Josh, but always mom.  He wasn't physical, but loud and red in the face mad.  Daniel Tiger's "Mad Mad Mad" song was one that he really remembered and would sing, I think because he identified with it.  And he'd sing the last part, "take a deep breath, and count to four.  One, two, three, four!".  I'd use his line on him when he was the "Mad Mad Mad" one, those few times he lost his stuff.

Dad really was his favorite it seemed some days.  At the hospital, he'd apparently be perfectly "fine" until I walked in, and then he'd get really whiny, clingy and grouchy.  I think a lot of kids save the cranks for mom, thanks!  But it's nice that him and Josh had this laid back feel at the hospital and at home, even if I felt like I paid for it later.

But overall, he was so consistent.  So obedient and trusting.  I always had complete confidence in how still he would be going into that big CT scanner. 

How cooperative he would be with the nurses for site care in the hospital.  How compliant he was at home even for the hard stuff--the shots, the feeding tube replacements.  He obviously didn't enjoy this stuff, but he submitted, he allowed it.  The one day I had to put the tube back down by myself, and I was so thankful he didn't fight me on it, and we got it back down on the first try.

I know we don't even realize how much of a gift from him that was to us.  How unbelievable this two year old boy was in that respect.



And now, as I write about him, and the tears are flowing because I just want so badly to hold him again, to hear his voice, to see that twinkle in his eyes. The deep, deep ache in my chest is flaring up.  That longing just like the last day of a vacation, accept times a million, washes over me, and it hurts.  So much.   But I don't want to stop remembering him, even if it hurts.  So I will cry as I consciously recall these memories.  Because even as the tears fall, I usually have a smile on my face too. Comforted by the memories, thankful for the time I had with him.  How lucky I was to get to be this boy's mom!

So if I talk about him to you, say his name or tell a story that maybe you weren't expecting or ready to hear, don't be uncomfortable.  Don't wonder what you should say.  Just listen to me, let me talk about my son.  Because as I talk about him, he's back with me for a moment, and that is all I really want right now...