Tis the Season

I tend to get pretty grumpy around Halloween time.  You see, Thanksgiving is my favorite.  But rather than getting to enjoy the beauty of Fall (well, actually the hot, dry, static of California Fall...), I start feeling the Christmas pressure the moment the pumpkin spice latte memes begin their internet rotation.

I love Thanksgiving for a number of reasons.  First and foremost, the candied yams.  But also because it's really the only holiday that isn't about getting something.  It's a day we can sit back and enjoy food and family without the chaos of wrapping paper remains or candy comas.  And now that we have kids, I want to share the simplicity of Thanksgiving and impress upon them the importance of being thankful when the world is rushing to spend, spend, spend, and get, get, get.

And as the Christmas sales threaten my serenity, I want to jump on the "reason for the season" band wagon with the best of them.

But this year, as I watched Makayla's eyes widen at the first sight of twinkling lights (I think it was October 1st), I felt myself wanting to be annoyed...but actually getting the teeniest bit excited for the sparkle.

When she was eager to get prize after prize at the Halloween carnival, I had to stop and remind myself that every other day of the year, she's a giver.  Truthfully.  Every day she makes crafts for her friends, draws pictures for me, gives hugs, offers the first bite of her dessert...she has a generous heart. (She's human...and 4...but honestly, she's amazing.)

When she got tired of me asking her "what are you thankful for?" I had to stop and consider that we pray each night, giving thanks for all we have.

When she made Santa's sleigh and reindeer using the nativity figures I nearly corrected her.  But then something hit me. 

[Oh, she knows that Christmas is really Jesus' birthday.  She's been throwing Him party after party.  But that's not even the point.]

I realized that she loves Jesus every day of the year.  She learns about Him at Sunday school each week.  We talk about Him and to Him each day.  She loves the Lord all year long.  Her belief in Santa and her excitement about the sparkle and magic of the holidays don't threaten that.

I want to raise her to be thankful and generous and thoughtful all year long.  But I don't need to squash the fun of the holidays to do that.

I've had time to reflect and see what society values as the shopping insanity begins earlier and earlier.  But she has no clue about that.  She is just excited.  Legitimately excited about a time of year when things are extra shiny and she gets to help her daddy decorate with lights.

For an entire year now, she has been saving coins in her piggy bank to buy ice skates.  But last night we saw Santa and when he asked her want she wanted for Christmas - without a moment of hesitation - she replied, "ice skates!"  Walking away she told us, "if Santa brings me ice skates, I'll have lots of money to save for something else!"  That's not greed.  That's just good business.

***

So I'm letting myself off the hook.

It's not my job to remind her every moment of the month of November that we should be thankful for what we have.  

It's my job to stop everything, praise God quietly, and smother her with hugs when she tells me, "Mommy, I'm so thankful for my brother."  

I don't have to be embarrassed when she points at 10 different toys when her grandmother asks what she'd like for Christmas.  

It's my job to show her gratitude when she gives me gifts. 

I don't have to fear that she will become greedy and ungenerous because she wants gifts at Christmas.

It's my job to encourage her generosity and show her how to be kind. 

It's not necessary to pound into her that Jesus is the reason for the season.

It's my job to teach her that He is the author, creator, and perfecter of everything. All the time.

Being a grump about the holiday sparkle probably never brought anyone to see the true light.

***

I hate to admit it, but I think this year Christmas might be my favorite.  As long as I get to make candied yams again.

Apple pie

The majority of my posts revolve around my grief. This is primarily because I started writing to work through that grief, and the joys of daily life don't need as much processing as the dark moments. 

But I was thinking...I titled this blog grief and hope. When I did that I had in mind our adoption, but that's not to say there isn't a mixture of grief and hope that continues day to day. Perhaps titling it "life" would have meant much the same thing to many...yes, we have a specific grief that I will continue to address because it is a very present reality for me...but every day I am given challenges and joys and those might be worthy of discussion too. I'm not entirely certain, but maybe I'll try it out. 

So on to apple pie.

Yesterday we spent the better part of the day in Arrowhead. Wait...let me back up. A week ago, I decided we needed to escape the impending heatwave by spending the weekend in the mountains. After much hemming and hawing and figuring and vrbo searching, we decided a day in Arrowhead was a better option. (Why the back story? Because maybe I'm bad at making decisions and maybe that's  part of the story. It isn't the perfect FB photo where we're all smiling and eating a giant pretzel. It's a little indecision and disappointment too.) 

So on Saturday we headed out without much pre-event panic (I'm a pro at that). 

We had fun. The weather was lovely. Makayla got carsick both up and down the mountain, but we were prepared for that! Corey freaked out on the way down the mountain (poor guy's nose was plugged and I'm guessing the pressure was not his friend), but after a brief panic, I squeezed into the back and we cooed at each other until he fell asleep. 

It was a great day! 

But when we were browsing a store, Makayla pointed to a picture: 

"Mommy, that lady has a frustrated face just like you!"

It stopped me. Not because I never recognize that I get "frustrated," but because she so quickly equated me with the image. 

That evening I decided to teach her to make apple pie...at the same time I was making dinner. Guess what? I got frustrated. After she went to bed, I took the pie out and I had burnt the Dutch topping. Frustrated again. 

This morning I got the kiddos ready and off to church by myself, but not until after getting...you guessed it...frustrated. 

On our way home, Makayla was grumpy and it was already 95 out - the perfect combo to trigger me - so I screamed a little on the inside and tickled Makayla till she complied with the seatbelt. Then, anticipating her behavior at home, I made activity suggestions rather than punishment threats. I still got frustrated, but I'm pretty sure she didn't see it that time. 

In reality, she's going to see me get frustrated. Probably a whole lot. And the only reason she even knows what to call it is because I've stopped and acknowledged it; even apologized if the situation warranted it. This isn't about me reinventing my parenting or my behavior or even my attitude...its just a little piece of our real life. 

I love how aware Makayla is. It's also really challenging because I can't put anything past her! So I'll say the same prayer tonight as I do every night- 

"Lord give me the wisdom to be the mom Makayla needs me to be. Help me to be a better mom tomorrow than I was today."

But before that, Makayla and I are going to share an irresponsibly large slice of homemade apple pie. 

Cornerstone

I think I've written before that worship (well, the singing part of church) is often hard. It's standing in a room full of people and fighting with my emotions.

There's pride - people are watching me; they're looking to see how I respond (nah, they're worshipping God and that's what I'm supposed to be doing too).

There's control - losing control to sadness is frusterating even if only because it means my mascara is now running on the one day I actually bothered to wear it...and for so many other reasons too. I don't want to be that person all the time. 

There's judgement - those people raising their hands, nodding their heads, clapping - they don't know what it's like to really suffer. Yeah, it's there. It's ugly and it's there.

There's exhaustion - it takes energy to stay composed, but it also takes energy to give in. To go to the darkest corners of your heart and let go of control, let go of pride or shame or fear, and just be real with God.  

Why is it always in public? Perhaps I need to work on making space to privately explode...but who wants to pencil in "grieve" on their calendar? 

There's one song that really does it. It's a beautiful one: full of truth and hope.  "Cornerstone." It's one of my favorites and I dread it. We sing it often at church and once or twice I've managed to get through it with just a few tears. But this week, like so many times before, it really got me. 

The chorus, 

"Christ alone; cornerstone

Weak made strong; in the Saviour's love

Through the storm, He is Lord

Lord of all"

means so many things. Weakness. If you understand the nature of Annabelle's disease, I'm sure you'll see one connection - what made her weak in this world, was wiped away in death. She has been made perfect and strong in His love, in His arms. There's the connection to my own weakness, powerlessness, sadness.  And He has been with us through the storm. The storm didn't end. There wasn't a rainbow (no, Corey is not a silver lining - he is his own beautiful story). The storm raged and wrecked us and lingers still, but Christ is here in the midst. 

But this week it struck me in an entirely new way and I'm not sure I even know how I feel. 

The final verse, 

"When He shall come with trumpet sound,

Oh, may I then in Him be found;

Dressed in His righteousness alone,

Faultless stand before the throne."

is the part where everyone gets really excited - this is the hope of all creation. This is the promise of the living God who came and died and rose and will return. But I stood there, weeping. My baby girl has been there. She's gone before me. She has stood before the throne of God, been made whole, worshipped in His very presence. And here I am. Sad. And weak. 

I usually try to qualify my writing (is that the expression I'm looking for?) - send out a little hint to readers that I'm fine, no need to worry, just letting you know it's real...and I am "fine." I've got a zillion blessings and I know it. But sometimes it's dark. And in the midst of the storm, He is Lord. Not just before. Not just after when everything smells clean and new and nice. Not even just at the eye when you can breathe for a moment.

 I need that reminder because it is far too easy to go from Sunday to Sunday grasping to control everything and wondering why I'm wrecked by a song. 

The profile

I finally did it. I changed my profile picture. 

This might seem small and insignificant. It may even go largely unnoticed by the social media world. 

But to me, it's a big deal. It has been the subject of counseling sessions. It has made me consider quitting social media altogether. 

Ask any mom who has lost a child and I bet it was hard for more than just me. Taking new pictures, wanting to celebrate new moments, but torn by the fact that they don't include the one who is not there. 

For me, it's heartbreaking to know that there will never be a picture of all my children. It's a glaring reminder that Corey will never meet his sister. 

And, yeah, it's just a stupid profile picture.  It could be of anything. But it's just one more reminder. One more step away from what we once had. 

But at least I got to choose a beautiful and truly authentic picture of Makayla and Corey. It fills my heart to see how much they love one another and I am proud to share that with the world. 

It's a difficult line to walk- wanting to bring Annabelle along with us, yet not wanting to tarnish the pure joy of raising M & C.  

I love my kiddos every day. All three of them. 

SMA

August is SMA awareness month and I can't seem to allow myself to let it slip past without acknowledging it...really, I've tried ignoring it all month.

There are several wonderful organizations run by dedicated families who endeavor to find a cure for SMA.  It's the leading genetic killer of infants and to find a cure would be nothing short of miraculous.

Spinal Muscular Atrophy is genetic which means it is hard-wired into every part of the child.  It affects every single cell.  Treatments may slow the degenerative nature of the disease, but a cure would require a change of the DNA.  Do I think research is valuable?  Of course.  Particularly for those suffering from later-onset forms of SMA who may live longer, some even into adulthood, and benefit greatly from the various forms of genetic therapy being tested.  Would I love to see a cure? Absolutely.

But our experience with SMA has given me perspective.  And rather than pouring my energy into seeking a cure, I would choose to advocate compassion.  Choice.  Understanding.

For a family blind-sided by a tragic diagnosis, pie-in-the-sky scenarios are not kind.  We sat across a table from two doctors: one stuttered and stumbled and encouraged "some live to be 8 years old."  The other doctor was the kind one.  "No, that is not realistic.  She has no more than a year."

I can understand a parent's desire to do everything in their power to save their child.  Everything that might help.  But for Annabelle, whose symptoms were already glaringly present at birth, extreme measures would have done nothing to help.  Hooking her up to machines in a hospital bed may have given her a little time.  But they would not have given her life.

I spoke with a mother who suffered years of emergency proceedures with her child until someone finally had the compassion to recommend paliative care.  No one wants to embrace the death of a child, but this mother felt relief - she didn't need to put her child through such torture any longer.  She could take him home to live the life he had left.  Why hadn't they told her sooner?  She didn't even know it was an option.

I still can't think of Annabelle's diagnosis day without feeling sick to my stomach.  I still get angry.  I hated the idea of hospice.  But I am forever grateful that it was an option.

So here is a short list of things that I would like to spread awareness about in the shadow of our experience with SMA:

1. Every few minutes, a family receives the worst news they could possibly fathom.  Terminal diagnoses affect regular families from all walks of life.  Fatal illnesses do not differentiate between classes, races, faiths.  They also don't come with signs.  Have compassion.  Tread lightly.

2. Hospice care (for both adults and children) is necessary and worthy of excellent doctors and nurses.  The nurses who helped us care for Annabelle are part of the only children's palliative care program in Southern California.  You can support our local children's hospice care, TrinityKids, by going to http://california.providence.org/trinitycare/giving/

3. Every diagnosis is different.  Families need grace and the chance to be informed and evaluate what is best for their situation.  There is never an easy choice.

4. Cure SMA (formerly Families of SMA) supports families currently impacted by SMA.  They provide recources for newly diagnosed families as well as endeavor to find a cure.

.
.
.

I will end with a picture that I don't think I've ever shared of Annabelle.  It's one of my very favorites because it so perfectly captures who she is.

Sweet, bright, beautiful.

But I also hate it.  At 2 months and 7 days, she had no neck control at all so I had to hold her head for her.  She died the next day.  I hate everything about SMA.  But I love this little gal so very much.

2 months and 9 days

So it happened.  Time did not stop, and Corinth is older than Annabelle.

It's one of those strange milestones that produces polar emotions.  I have been nervously anticipating it, wondering how the reality will feel, trying to decide how I'm supposed to feel, worrying that I won't feel anything.

Annabelle gave us 2 months and 8 days.  Aside from the first 2 days when ignorance reigned, those days were marked largely by fear, sadness, and anxiety.  We did all we could to make them days full of love and memories, and I do believe we succeeded.  But there is no denying the fact that everyday we were watching and waiting for disaster.  And then that day came.  It happened, beyond our control, no matter how loudly we protested.

And so I certainly feel something.  How I would love to have had more days with Annabelle.  She is a big sister and should be days away from celebrating her 2nd birthday.  Instead, she is forever a baby.  Forever 2 months and 8 days old.

But I also have a beautiful, healthy baby boy.  Although Annabelle had 2 ounces on him at birth, Corey is a million times stronger than she ever could be.  He laughs, he smiles, he kicks and threatens to roll over.  The more he grows, the more I realize how much we missed.  He is growing.  And he will continue to grow.  He will get stronger,  he will get older, he will get to stay.  How many families, including my own, take that fact for granted.  I'm not sure I've really believed it...I even caught Makayla saying "while Corey is here..."  But he's not going anywhere, praise God.

I'm not supposed to feel one thing or other.  But I do feel.  I feel loss.  I feel sadness that my beautiful daughter isn't here.  I feel relief that Corey and Makayla are.  And I think that's it.

In most ways, it's just another day and there will be a million like it.  Days that don't include Annabelle.  Days that do include two wonderful, healthy kids.  There will be good and bad, but time won't stop.

That is all.

What's in a name

He's 4 weeks old, and his name is Corinth Michael.

4 I always thank my God for you because of his grace given you in Christ Jesus. 5 For in Him you have been enriched in every way—with all kinds of speech and with all knowledge— 6 God thus confirming our testimony about Christ among you. 7 Therefore you do not lack any spiritual gift as you eagerly wait for our Lord Jesus Christ to be revealed. 8 He will also keep you firm to the end, so that you will be blameless on the day of our Lord Jesus Christ. 9 God is faithful, who has called you into fellowship with his Son, Jesus Christ our Lord.

1 Corinthians 1:4-9

He's wonderful and we are awe struck by the reality that he's really ours.  We are a family of five.

I'm sure in the months to come, I will explore the juxtaposition of joy and sorrow we've encountered in his arrival, maybe even the subtleties of embracing his adoption.  But for now, I'll address his name.

Corinth [kor-inth]
aka Corey
aka Bro
aka Guacamole Bebo

When my water broke just after midnight on June 2, he didn't have a name.  When I held him for the first time, he didn't have a name.  And when we prepared a message to the family announcing his birth, we stared at him, hoping maybe he would tell us his name.

Don't get me wrong, it's not like we didn't talk about it.  In fact, I had spent much of the first part of my pregnancy weighed down by the sense that his name must be profoundly significant.  Considering the story of how he came to us, I felt his name must somehow reflect the entirety of the miracle.  It was daunting.  I read into everything.  Names within Bible verses taunted me and I (frankly) dreaded that I'd have to name him Emmanuel, God with us.  (Note: there is nothing wrong with this name, but Manny Cannon?  Nope.)

Once I let go of this unreasonable pressure, we made a short list.  We agreed that he would share his middle name with his father (and its meaning with his sister). Michael - Who is like God?  A rhetorical question, not a statement.

One Sunday while in church, I received a text from Ryan up in the tech booth (yep, I checked my texts in church...eeps!).  "How about Corinth?"

It's a little out there, but Ryan always names our kids, (I don't know why.  I always have great suggestions.  But, in the end, Ryan always chooses) and he's always done a perfect job at it.

So he coffee-shop tested it....

Parents do this, right?  Well, we do.  It's a great way to see how others will react to the name, how they will spell it, how they will say it.  We didn't encounter so much as a raised eyebrow.  And the only misspelling was Corenth - not bad if you ask me.

...and I mulled it over, and over, and over.  And now he's here and perfect, and so is his name.

Like the church of his namesake, he is God's provision.  He confirms our testimony and proclaims it to the world.  He is the living result of our prayers.