Sunday, May 17, 2015

life puke.

The weeks seem to become more of a blur. 
Spring has arrived, the trees are in bloom, the tulips have already appeared and withered away.  It's hot; humid, stuffy.  The kids are anxious for school to be out for summer while I'm a little more nervous about what the days with them will look like.  I'm excited to have them home and hope we have the chance to make some really great memories here.  It's just that the happy high I was on for quite awhile has faded and the heavy grief has swooped back in.  And not just for me, I see it in them too.  The worry and wonder.  It's our life so I think it goes unsaid often, but we all feel it. 
The kids attempted the carnival yesterday.  Braden puked and Nora was on the verge.  I had to laugh because that seems so very typical of how our life is.  The fun and excitement of something lasts for a time before we all get hit with the twirling, dizzy reality and we find ourselves at one point or another standing around on hot pavement barfing.  I couldn't help but watch them literally puking and think of the irony; the figurative spilling our guts out over life's wicked ride. 
This week has been another really tough week for me.  Better in some ways, harder in others.  It took a long time for me to finally write it when Mabel stopped sucking and taking a bottle because I knew in my heart what changes were to follow.  Now I'm here, just weeks into those changes and it's still overly difficult every single day to face the new reality we are in.  I look back and I almost can't wrap my mind around the fact that my once healthy-looking baby is so very sick.  But then I have to try and comprehend that even when she was healthy looking (and in a lot of ways acting), I knew she was this sick.  It's a lot to wrestle with. 
[photos from 3 years ago]

So where are we now?
Well the changes are drastic. 
Mabel's tummy isn't absorbing her food properly.  She went from eating 8 ounces, 5 times a day to eating 5 ounces, 3 times a day.  Essentially she cut her feeds in half.  And now, of the 15-20 ounces a day that she is getting, she is only absorbing about 9-10 ounces of that.  She isn't absorbing her meds properly from what we can tell and she has now vomited several times in the past week which she hasn't done in well over a year.  

Her body that was once so jerky and agitated has stilled.  For the most part her body is very calm, without medication, which is a strange thing to experience.  For almost 5 years I have watched in horror as her body has twitched and jerked and then suddenly, nothing.  I think back to the batten disease conference that we attended last summer and asking several parents what medications their children were taking to make them be so relaxed and when they answered, 'nothing,' I was almost horrified.  It was helpless for me knowing that no medication had helped Mabel and yet these kids were still on their own.  What was I going to do? 
Most of the parents remembered a time when their child had jerked in those ways but said that at some point they just stopped.  It was a phase that they no longer really remembered, thankfully.
In that way, I think my prayer for mercy has been answered but I almost hate to speak too soon.  She has still been agitated as far as crying goes but a new medicine seems to be helping some, though it takes hours to kick-in when truly, it shouldn't.  I've got the timing down now so by noon each day we are in a little bit better way.  A couple hours of screaming compared to twelve is truly nothing at this point. 
Last night after the house was quiet and I was just up alone with my thoughts, I snuck in her room to check on her.  Typically I try not to do this as to not wake her but she had puked before bed and I wanted to be sure she was propped up and safe.  Her color had me worried and I checked her respirations.  She stirred just slightly, but with a smile.  I climbed up in bed beside her and put my ear to her little chest and laid for a long time and wept over my baby.  I felt her start tapping and heard her giggle as I cried.  Normally I'd be so careful not to wake her but in these last few weeks I'm just so thankful to see her awake at any chance I can get because for me there is an urgency to see her eyes as often as possible.  I held her for a very long time, wiping my own tears and her saliva.  She turned her head gently to one side and her heavy lids consumed her.  As I watched her sleep, I silently thanked God for her.  All of her. 
And all of this.

Every day that she wakes is a really great day. 
Though they are only going to get harder, they are still incredible.  I am locked in and really ready for the road ahead but it sure doesn't come without total consumption. 
My body literally aches from the sadness and exhaustion.  It is difficult to eat, difficult to sleep.  The emotional energy that I've worked so hard to store up for such a time as this is being spent rapidly.  But I'm amazed at the grace that is poured out over me each morning. 
God is really faithful in carrying me through each day.  And He shows up even when I'm cussing him on a country road all alone.  He shows up in my anger and frustration, in my filthy, self-consumed sadness.  He shows up in my belief or doubt.  He shows up and brings a peace I can't explain. 
It's all over her and I pray, all over me. 
Because death is part of life and the journey toward Heaven can be beautiful.  The suffering that I have watched her endure is nothing compared to the joy that she will one day experience. I think she knows that as much as I do.  I pray I can be as strong in these comings days, weeks, months, or years that she is with us as she has been all along.  She inspires me every day, without even trying. 
Thank you to everyone who is reaching out to me. 
Your texts, cards, calls--I so appreciate them. 
I'm a little inside of myself lately and I am grateful that you're patient and that you understand.  I am thankful that you're faithful to love me through it and see me on the other side of it all.  That is the most profound proof of love and I'm so lucky to have such amazing friends, near and far. 

Monday, May 11, 2015

post mother's day thoughts.

The week leading up to Mother's Day was excruciating for me.  Every holiday is hard; the unspoken doom that it could be the last we share with Mabel.  But this is the first holiday since her body has shown obvious signs of change and it just happened to be Mother's Day. 
I can't explain what it feels like to be right smack dab in the middle of grief again, so unexpectedly.  Just when you think you have a handle on yourself, on how you feel-the familiarity of the lonely, the sad and the isolation sweep back over you and before you know it you can't breathe from all the sadness.  All the reality.  All the pain.  Before you know it, you look around and the world looks different again. 
It's the fog. 
It's the people talking and laughing while you feel as if you're drifting above them, invisible.  But not invincible.  No,'re very overly aware of mortality.  Yours and the ones you love so dearly.  Yet, you feel as if you're the only person experiencing such heaviness.  The truth is, I know now, that you're not.  In fact everywhere you look someone is wrapped up in something painful.  Someone is going through unspeakable hell inside of themselves as well.  But you feel alone.  You feel like no one could possibly understand what's happening in your home, your heart or your babies body. 
People's laugher is painful.  Trivial even. 
And that leaves you feeling bitter and cold for the moments that you are swept up in it. 
Luckily for me, the grief subsides.  It isn't lasting like it once was.  There are still moments of clarity and genuine happy.  In those moments I am able to be sensible; remembering that though this is our reality, it isn't everyone's.  This is the hand that we've been dealt and though difficult, it's also beautiful.  The challenge is finding that merciful balance.  Recognizing the grace moments while enduring the really terrible truths that we face. 
Mother's Day ended up being a really great day.  I woke up late to breakfast in bed, homemade cards, and gifts from my children and the man I love.  The day was slow, easy.  The sun was shining and the wind blew gently across my face.  I breathed deeply and inhaled all that is good.  Purposing to remember this day; this Mother's Day with all of my children. 
Another mother who has endured loss reminded me in a text that death doesn't change that she is a mother or that she feels that deep love.  'The day is always beautiful', she said. 
I needed that. 
Her strength gives me hope. 
Later in the day I learned that one of our batten friends died at 3:30 pm.
On Mother's Day. 
He was one year older than Mabel, looked just like her, and was loved incredibly by his mom, dad, and older sister.  He died in their care at home and will be greatly missed. 
My heart is shattered again. 
I took pictures of my own boy yesterday and silently thanked God for his life.  I prayed that God would spare him and Nora from sickness, and instead give them a long life of health. 
I feel like, at the very least, they deserve that. 
Ah, we all deserve that. 
 My heart broke for Nora in a hundred other ways yesterday.  But thankfully I got to spend a lot of alone time with her.  A lot of good talks, laughing and relaxing.  I am so thankful for her.  She's so smart.  So in tune to me..
My prayer is that I can be the same to her and meet her every need along the way. 

Mother's Day is hard for many people, I've learned. 
My heart seemed to be extra sensitive to that yesterday. 
Mothers are beautiful life-givers; a unique breed of human. 
Thank you to the wonderful moms all around me.  You give me courage to go on, move forward, survive and love.  

Saturday, May 9, 2015

Mother's Day: Who Am I Mothering?

The very purpose of this space was always to chronicle my life as a mother so that one day my children could look back and see our life as a reminder of what we did, who we shared it with and the joy we had along the way in their journey of childhood and my journey of mothering them. 
And then Mabel was born and my writing shifted, as did my life in it's entirety.  My soul had a great need to purge feelings and emotions for survival during these emotionally heavy years with her.  And even though the writing shifted and the mood here is different, I still believe Nora and Braden will be grateful for that.  It's very telling of how our lives evolved over time.  Not only myself, but them as well.  Life has a brilliant way of growing and changing us-always always for the better.
So now, on Mother's Day weekend I would like to share a little bit about the children I am mothering.   These incredible little humans; who are they now?
Nora Elaine Larson.  8 years old.  3rd grade. 
My morning "diddler," bacon eater, chocolate milk slugger.  She is a perfectionist down to her core.  She spends an entire hour in front of the mirror before school (much like her aunt Jeni) to get every single hair exactly in it's proper place.  Drives this low-maintenance mommy crazy!  She is a cat lover, a horse rider.  She gets straight A's and is a rule follower at school.  At home, she is a button-pusher, and a back-talker.  She is incredibly independent.  She is ultra mature for her age and is a listener of all things adult.  She enjoys being where the conversation is grown up but you can find her hidden away in her room when she needs time to decompress.  Emotionally she is a hold-it-all-in kind of girl, though it has gotten better in the last several weeks and even she feels good about that. 
Nora loves to be outside.  She will play in the dirt, is intrigued by nature and loves all things animal.  She is a good eater and enjoys most things we try (and will try almost anything.)  She gets excited about girl things such as having her nails done, wearing lipstick (wonder where she gets that?) and flaunting perfume.  She enjoys baking, though we don't do it as often as I'd like.  Art is her favorite and she's incredible at it!  Whether it's drawing a picture to express how she's feeling or writing poems and songs that fill notebook after notebook, this girl is talented! 
She's a late-nighter and a late-riser if the opportunity arises for her to be.  She loves to go camping with her poopaw and shoot bows with Uncle Jake.  She has hundreds of freckles on her face, a deep love for justice, Jesus, and mercy, She shows an interest in anything intellectual.  She enjoys music and dancing but has a hard time carrying a tune or keeping a beat.  She loves fiercely but has a hard time forgiving.  She gets her brother in trouble often and is bothered by him daily.  She is Mabel's greatest comfort and I find that she most enjoys laying in bed with her, or being wrapped up on the couch together.  She's quite the little mommy, wanting to help with medicine, diaper changes or feedings and at any given chance. 
She is a deep thinker.  She has great common sense and wisdom.  She is passionate about God and doesn't waiver in her ideas about Him.  She is a fast runner and a fast talker.  She is picky about her clothes and is just not interested in boys.  She loves to spend time alone, just she and I.  Nora has the most tender heart and is full of compassion for others.  She sees and understands the world in a way that will make her a great teacher or a great doctor one day, I'm sure.  Though she says she wants to be a "bird scientist."
Nora is my freckled-face, first born, love of my life. 
She is a beautiful, funny, wild, impatient, yet tender, extra sensitive and easily tearful.  She is everything I ever prayed for wrapped up into one little girl.  She is all I ever dreamed about when I thought of being a mother.  She has always been the 'light' of my life (the meaning of her name), and the joy of my heart.  On this Mother's Day, she is as always, one of my greatest gifts. 

Braden Eugene Larson.  7 years old.  1st grade. 
Early morning riser.  Loud noise maker.  Dog cuddler and nonstop runner.  He is my fast talking, fit throwing, laugh at everything boy.  My one and only boy.  Unlike his sister, he spends an entire hour before school laying in bed before time to leave. He then gets dressed in the clothes that I lay out for him and wears the shoes that I tie for him.  He is less than independent.  He is a lover of home and doesn't want to spend any time away from me.  He is a picky eater, specializing in the every day home-made packed lunch of pb&j, chips and juice.  He is musically talented in a way that I think only young musicians are.  He can remember the lyrics of a song after hearing them just one time.  Though he seems aloof, he is a deep thinker.  Also unlike his sister, he says what he feels, almost immediately.  He cries often, daily even.  He is highly emotional and very dancy. 
Braden is incredibly tender and sensitive to those around him.  His feelings are easily hurt and though he's learned a few skills on how to cope with that, he is still easily affected by others.  He is often angry, mostly mouthy, always funny, and downright handsome.  He enjoys having his hair spiked before school and playing legos for hours when he gets home.  He is an entertainer.  He is a friend-maker.  He loves to bug and annoy his sister but doesn't like consequences for any action.  He has a hard time being told 'no,' and a fit usually follows.  He loves root beer, loves superheroes and loves Jesus. 
Braden has always and still has the most gentle heart.  He loves everyone in a way that most would envy.  He is easily scared, easily frustrated but easily forgives.  He doesn't retreat from a situation like his sister, rather he stays in it, pushes through it.  He is very teachable because though you feel like he isn't listening, he is and he always remembers.  He doesn't like sports.  He doesn't like authority.  He loves small trinkets that he can hold in his hands or put in his pockets.  He is good in school but less worried about grades than about socializing. 
No one can make Mabel belly laugh the way that he can.  He sings to her constantly and calls her his "baby girl."  He wants to be a cop when he grows up and has a few small crushes, though he doesn't want to talk about it.  He is my freckle-faced, only boy, 'broad valley' (the meaning of his name) of delicate and stubborn qualities.  This boy is a gift from God, one I never knew I needed but has completed the parts in me that needed a good reason to wake up every day and keep going.  He's demanding, frustrating and yet oh so fulfilling.  He makes mothering hard and humbling every day. 
On this Mother's Day, I am reminded that he is one of the greatest gifts that God could have entrusted me with and though I mother him differently, I pray that I would continue to have wisdom on how to do so, so that he can go on to be a man of integrity and loyalty. 
Mabel Audrine Larson.  4 years old. 
My brown eyed, curly haired, forever infant.
She is a barely sleeping, always screaming, used to be body jerking, and bottle drinking babe.  Now she is back to being a super lethargic, sometimes smiley, 17 pound sweetheart.  Like both her sister and brother, she adores music.  She loves the bark of a dog and the wind in her hair.  She still enjoys long stroller rides but not like she once did.  She responds to my voice immediately.  She loves to suck on her hands and chokes easily on her own spit.  She doesn't sleep without several medications and would go days at a time with no sleep if she didn't have them.
Mabel screams.  But she also smiles.  She doesn't like to be held much anymore and it's actually gotten much harder to do so.  She loves her brother's dinosaur noises and her sisters gentle voice.  She still fits into 3-6 month pants that now double as shorts/capris.  Generally she wears long footy pajamas and loves to have her feet smelled. 
She loves Millie and perks up when she's around. 
She can't poop on her own, loves to be rocked in a rocking chair, calms when Chris holds her, loves her Aunt Jeni and Uncle Jake in such special ways and is the absolutely joy of our lives. 
Mabel's name means love. 
There is nothing greater in this world than the love she shows, is given and continues teaching.  She is the most pure form of love I have ever seen and to be her mom feels like my great reward in life.  I am honored every day with the privilege of being her mother.  The sadness, and the suffering pales in comparison to the sunshine she is.  She is everything I ever hoped for and yet couldn't have understood I needed.  Mabel, even when screaming has the most calm and gentle spirit of anyone I have ever encountered.  She is a direct and perfect gift from God. 
On this Mother's Day, I am thankful for the love of Mabel.  
The humans I'm mothering are incredible. 
Beautiful.  Smart.  Curious.  Fun & Funny.
They are the reason I am living; my purpose and my joy. 
This Mother's Day is definitely different for many reasons but the one thing that remains the same is my total adoration and appreciation for these children.  Whatever life brings, I know they are mine to love and care for and encourage and guide.  I also know that they are borrowed from my Savior and are mine for only a time.  I'm grateful that the time is now.  Every day is a true and precious gift.  

Thursday, May 7, 2015


Dear Nora & Braden,
These past couple of weeks have been hard on us.  All of us. 
Your sister has been violently screaming non-stop and though it's not unusual and you're used to it, I can see the stress in all of us vividly.  Braden, when you plug your ears and Nora, when you whisk yourself away to your room where you can escape, alone.  This is very telling of you both:
Braden finds a way, whatever it is, to trudge through a situation.  Nora retreats. 
It's intricate and beautiful to see really, the way you both cope with life and stress and pain and fear and sadness. 

The two of you have known since I have known that your sister is dying.  Though, we don't live as if she is.  Up until these last several weeks- Mabel, screaming or not screaming, seizing or not seizing, puking or not puking, has always gone where we go.  She is part of the life that we live in every way.  This has made our life both fulfilling and frustrating in most situations.  Our normal is all you know.  You do not notice when other kids seem sad or conflicted over the way your sister looks.  To you, she's just yours.  And that is the greatest gift I have learned in this entire journey.  To love the way that the two of you love. 
Unconditionally, without restraint, or restriction.  She is ours and that is that. 
We love her. 
I have always promised to be honest with you in this journey.  With every change, I have taken the time to explain it to you in a way that you both understand and accept.  We have walked it all together, no matter how difficult or hard it has been.  When Mabel stopped drinking a bottle, I explained that to you.  When she has new seizures, typically you recognize them before I have to tell you what's happening.  This week I had to explain to you that Mabel's tummy isn't working exactly the way it should be working and in stride, you gracefully understood and we moved on. 
It's a beautiful relationship that we have, guys, to be able to talk about life and death in an open dialogue.  Most families are not comfortable enough with their ideas about either to do so.  We are really lucky to have that with each other.  I have thought from the beginning and maintain to this day that it will be our honesty that will bind us together in these very hard times.  When you can be honest and real through life's most gritty and painful situations, you can walk through anything.  Feeling is key.  Expressing is a close second.  And any and everything that you feel or express is perfect and safe with me. 
Nora and Braden, your sister isn't well. 
She is living out the exact definition of 'suffering,' day after day.  That is horrific for me to have to write.  But I know you already know because again, you're living it with me. 
Watching, listening, Helping. 
We are doing everything that we can do to help make her comfortable.  Some days it works and sometimes it doesn't even come close.  It's incredibly painful; the ups and the downs.  It's also confusing for all of us, including you, because there are days when your sister looks really 'well.'  She appears beautiful and 'normal.'  But we have to try hard to remember that her normal is still not our normal.  There's still seizing and crying, biting and choking.  It's still awful even though we've grown used to it.  And sadly, over the last several weeks, even on the days when she looks remarkably well, her body has started showing signs of contradiction.  Inside doesn't match the outside sometimes. 
And I know that's going to be hard for you to understand.  I know that when she is smiling or laughing you can't possibly grasp that her body is slowly shutting down.  I know because I can't grasp it either.  My intellect fails me. 
One day, ultimately, I can only pray that you will look back on this and see the refining that is happening in our hearts.  I hope that you see my unwavering love and trust in God.  I pray that you understand mercy in a way that only we can because we are daily receiving it.  Mercy isn't at all how it's defined on this earth.  It shows up differently in our hearts.  There's no explaining it but I know you feel it.  I look at you, and I know.  I hope that one day you will reach out to God, not with resentment or bitterness, but instead with total and full surrender.  Total and full gratefulness. 
He is good. 
He has a place for your sister, waiting.  An eternal home where she will be well and rested.  I believe she will be whole in Heaven; whatever that means for her.  Because I think she is perfect now, just the way she is.  Not flawed or sick.  But perfect. 
So whatever perfection looks like in Heaven, that is what I believe she will be. 
There are many ideas of life and there are many ideas about death, kids.  And that is ok.  In more recent years I have started to be more curious and inquisitive about those things.  About people's ideas surrounding death and life.  I just read a quote today, in fact, by a young mother and author that simply says,
"There are as many ways to be dead as there are to be alive."
I just want you to know that you will encounter many people in your life that believe differently about life.  About death.  About life after death. 
Please be kind enough to listen and curious enough to explore that thinking for yourself.  No one is going to have walked in your shoes or shared your experience.  They will have walked their own path and lived their own life, leading them to their own conclusions.  Along the way it is likely that your hearts will hurt for people who do not share your own ideas or beliefs because you will want them to know of the peace and the love that you know.  You will want them to have a richness and joy about both life and death.  I pray you will at least. 
And if I do my job, as your mother, correctly, then you will feel those exact emotions about both.  So I pray that God helps me to help you right now and always in this journey with your sister that is so entangled in life (being alive on earth,) and death (being alive in Heaven, away from us.)
 During the week leading up to what could potentially be the last Mother's Day I share with all three of my children, I want you both to know:
 I have never been more proud or more grateful to be your mom.  And even with all the sadness and difficulty, I have never been more thankful to be able to care for and love your sister. 
She has always and continues to teach us so much. 
There are times when she is screaming, bub, that she stops and looks right up at you, knowing the noises that only her brother makes.  In the midst of her agony, you can bring a smile to her face.  That is a gift that God gave you Braden!  He equipped you to bring joy in sorrow.  Happiness in suffering.  I know that he will use you to do remarkable things one day because your spirit is rooted in Him.  I see the calm that washes over Mabel when you enter a room and I feel forever thankful that she has you as a brother!
And Nora, Mabel feels most safe in your arms. 
She adores you and calms for you.  I watch the two of you together and my heart literally beats out of my chest for the love you share.  It is everything I wanted for your life; the kind of devoted and secretive connection that only sister's have.   Though, if I'm being honest, sometimes I feel the most sad for you.  But I do pray that you never feel that way.  I pray that Mabel fulfills in you all that you desired from a sister.  You're absolutely perfect together. 
Nora, just yesterday you looked at me and said you just wanted Mabel to be safe and sound with me while you're at school.  I could see in your eyes the worry that you must carry every day.  You aren't alone in how you feel baby, in fact, a couple of days ago I walked into your brother's bedroom to wake him and tell him something,  he let out a sigh of relief followed by, "I thought you were going to tell me that Mabel had died."
My heart sank hard and fast but all I could do in that moment was reassure him, like I'm reassuring you now, that I will always be honest with you.  If I think that God is going to take Mabel to Heaven, you will know it.  We will be together.  You will never have to wake up without her.  You will not have to go to school worried that when you get home she will not be here.  I will make sure that we are all together and you are with her right up until we just no longer can be.
I promise, baby.  
I love you both more than I could every elegantly write. 
You are the heartbeat of my life.  Everything I have ever done or will ever do is because of you.  Though our load is sometimes heavy I want you to always remember that we don't have to carry it alone.  Two days ago, I laid my head on the shoulder of my mom and wept as she prayed over me.  I am a grown woman but I am thankful for the respite I have in my own mom, your nanny, even now.  I will always be with you to comfort you, strengthen you, pray with you and over you, and encourage you.  You don't have to walk any part of this life alone. 
I'm trusting in God. 
I'm leaning into Him.
 I'm here for you, always. 
We aren't ever alone. 
With Love,

Tuesday, April 28, 2015


My fingernails are bloody from picking and biting.  A trait that my Nanny left me, anxiety visible all over my hands.  I'm in a fog.  A heavy, strange fog.  It lifts slightly in the morning as the sun is rising and the day is new but as soon as she wakes, the wretching and screaming begins and I am reminded.  Yesterday it was 10 hours of non stop screaming except for a few moments of random, neurotic giggles; the kind that are more like seizures than genuine results of happy. 
I don't think most people know this or recognize it.
The fact that anguish walks around among you. 
 It's hidden beneath smiles and "I'm good, thanks for asking's."  It is in front of you in the check out line and beside you at a stop light.  Anguish smiles and fidgets through the days.  It walks and eats and breathes inside of bodies that are weary, frightened and conflicted.  Anguish reveals itself in uncertain moments.  Sometimes crying in the parking lot after leaving the check out line; sometimes late at night in the bathtub alone.  Sometimes anguish is visible on the faces of people you love, when the burden weighs heavy and the choices are hard.  Sometimes anguish hides beneath denial, coping to survive just one more day before the bridge breaks and the ground collapses undertow. 
Anguish causes broken skin around fingernails.
Biting and picking and nerves actually aching.
Anguish causes dark circles.
From pure exhaustion, from deep sadness and heaviness of the truth.
Inside of all of us lies sadness. 
 Uncertainty.  Humiliation.  Devastation.  Anger. 
But all of those stand high above the pit that is anguish.  All of those emotions can be coped with, walked through, bounced back from.  I know because I've experienced every one of them, as have we all. 

But truly, and gratefully, anguish is a rare emotion. 
It is this guttural, palpable, etched so deep inside, unmistakable, relentless emotion that is unlike any other. 
It causes the fog. 
The bleeding fingernails.
The dark circles.
The constant churning inside of your gut that may never go away.
It's a sort of torment for your soul. 
Agony.  Distress.
You see, anguish is exactly the opposite of that which we all hope to feel day to day; comfort, pleasure and joy. 
Often times my own mother has explained to me that when I am in pain, she is in pain.  When I have made bad choices for my life, she has felt them deep inside of her.  When I was physically hurting and away from her, she 'knew it' without knowing of it.  And here I am, thirty years old with a very sick baby of my own and I finally understand that. 
My Mabel cannot speak to me.  She cannot explain the extent of her pain, her torment, her physical anguish.  She cannot tell me what it feels like to lose her vision, be unable to swallow, not poop on her own, have her muscles tighten for hours at a time, have her brain seize almost constantly, or what it feels like to have that same brain be actively shrinking as it continually, like a computer, shuts down piece after piece of her little body.  She cannot tell me with words. 
But I watch her scream and her body arch.  I hold her as she stiffens to the point where I almost cannot.  I drain her belly as it cannot hold as much food and causes her intense discomfort. 
And I know the anguish.
And for her, I feel it.
And for me, I feel it.
I feel so sorry for her. 
I feel so sorry for me.
And together we are so exhausted.
Yesterday was 10 hours of screaming. 
Anguish that stairsteps down from one child to her mother, from that child to her mother. 
We are all together and depending on one another but it's incredibly sad. 
It's incredibly hard.
As I captioned a photo a few days back, "Question and re-question every decision.  Think and re-think every symptom.  Pray and pray more.  Breathe and eat.  Take a run.  Drink coffee.  Hot bath.  Reach for his hand, steal a hug.  Cry.  Laugh.  Repeat."
I forgot: sleep. 
Though I am trying.  And she is more. 
We are in it and in it together. 
Dark circles, churning guts, bloody fingernails, anguish and all. 
One day at a time, as always. 

Monday, April 20, 2015

Uncertain territory

It's troubling when the one thing that used to save you, free you even, is now the last thing that you want to do.  Because truly how can one write the painful truth of the every day when it's so heavy that the words fall short?  They are far too flat. Even the most exquisite and descriptive vocabulary couldn't explain the pain, fear, sadness and downright cruelty of what happens in the hours that make up our days.  I no longer need to try to understand it and I'm very close to not being able to fully explain it.  The details are all a blur.
She woke from the long sleep with one small smile.  Forced, but there.
And then she moved swiftly into 6 days of the most wretched, gut turning cry you have ever heard.  It seemed as if she was in pain, but typically she doesn't feel or respond to pain. Long ago I had to stop driving myself mad trying to figure out what was wrong and just treat the crying.  But nothing 'treats' the crying.  Nothing in the world stops this child from crying. 
Her brain causes the cry. 
And her brain and only her brain stops the cry. 
We did notice that she had thrush so we treated it.  A little numbing of the mouth and some good meds seemed to take it away after about 2 days.  But the crying went on.
I, too, cried every single one of those days. 
I have never seen her body so stiff or rigid.  I have never seen her muscles be so flexed, seem so strong.  And yet I have to look at her and reckon that on the other hand, I have never seen her look quite so weak.  Quite so very different and weak. 
Not long after she stopped taking her bottle, her swallowing ability decreased. The amount of saliva in her mouth has increased because she isn't able to adequately swallow it all.  There's a lot of drool and a lot of choking, all of which is new and scary.
Last week sometime it occurred to me that she has also fully stopped giving me any hunger cues.  So now I am feeding her strictly by schedule, along with reading what her body needs.  I'm keeping close watch on her gastric residuals as to not continue feeding her if at any time her stomach stops processing food. 

For several weeks my stomach has been in a 'knowing knot.' 
I have watched the physical signs of her decline and I have noted each of them closely in my heart.  I have yet to fully write it all.  I have yet to fully express the depth of it all or the immense and utter turmoil it causes my soul. 
All I know is that I do not want my baby to suffer. 
And this disease causes nothing but suffering.
Mabel herself brings so much joy and is purely peace.  But what I see when I look into her 6 day screaming eyes is a wicked disease running wild throughout her body. 
It infuriates me and there are times I think I might physically vomit at the very knowing.
But the knowing is what keeps me going.  The knowing of the disease, the extensive and detailed knowledge of this thing inside of her is what pushes me forward. 
I know what it is doing in her because I am an expert on this disease and Mabel.  I watch her breathe so frequently that I believe if she stopped and I was nowhere near, my heart would beat out differently in that moment. 
But I am near.  I am always near, almost breathing the very breath that she is breathing, I am so close.
  I know when she has an infection because I know the exact smell of every inch and every part of this little girl's body.  I know when her cry means that she has to poop because I am the one who assists her in doing so, each and every single time.  I know when she has thrush because I know the typical color of her tongue.  When something is abnormal, I am so attentive to this little girl that I will know it. 
And I will catch it because where batten disease rages in the realm of uncomfortable, I am in the business of making my baby comfortable.  Where it acts, I counteract.
I am not about earthly healing for Mabel.  I am not about fixing her.  I am even beyond treating the symptoms that are so untreatable. 
But I am about making sure that while there is breath in her lungs, she will feel rest and comfort and peace.  She will lay in my arms and look up at me with eyes that cannot see and know that she is loved beyond a doubt. 
I'm at the most helpless part of the journey. 
I can't articulate whether or not I think she's dying and yet I cannot fully say that I don't think so.  I just know that we have all noticed the change and we all feel a little uneasy, slightly unsteady with each day.  It all feels like unknown territory.
I am not scared or sad about the prospect of Mabel's death. 
It is everything leading up to her dying that is terrifying.  All of this that we're already living and walking through is what is most horrible about this disease. 
It takes away the abilities that she once had and by doing so it reminds you that it is also slowly taking her.  It reminds you that this brain inside of her is wasting away while she sleeps and is stealing from her everything that keeps her alive. 
At least scientifically and medically speaking that is what's happening.
But every day we depend on Love and we are reminded that God created us all perfectly in His image.  That He is the creator.  He alone numbers not only the hairs on our heads but also the days in our lives.  I look at my beautiful girl sleeping and I don't see the thief, batten disease.  I see the giver of life, Jesus.  I know that she is far too perfect for this world and that He has a plan to heal her fully in eternity.  So I just hold her, and in the quiet pray for mercy. 
Thankful for every day-good and bad, that she is here. 
She is our greatest gift. 
Being her mom is the most humbling and I would gladly do it for 100 lifetimes, if He would so choose to let me. 
I am so grateful.   

Tuesday, April 7, 2015

The long sleep.

It was the second day of the long sleep when I found myself curled up in my large bed, covered and weeping.  The first day of her sleeping caught me off guard; worried, anxious and sudden, my mind ran wild.  People came and went and all the while I said nothing.  I pretended, to them, as if she were taking a nap or I had already put her to bed for the night.  The reality, however, was that she had fallen asleep after a day of crying and she woke very little after that.
For 56 hours in fact.  
On day two of the sleep, the worry and anxiety turned to simple sadness. 
That this is our reality.  That she could in fact go to sleep and maybe never wake.  That I am going to have to bury my daughter.  That this disease is changing her and will take her from me. 
I repeated over and over that her actual death is not what worries or even saddens me.  It is everything leading up to that point that is heartbreaking and terrifying because it is so very unknown.  Not only to me, but for everyone. 
I called my sister on the first day of the sleep.
I explained my frustrations, not being able to articulate what I think the slumber meant and yet knowing somewhere inside of myself what it must.  What it probably does.
What it must mean?  What it probably does mean?
Well all of the symptoms and the signs point to chemical, and physical shut down of her body.  "If I were on the outside looking in at someone else's life while this was happening to their child with batten disease, I would form an opinion about it based on the symptoms," I told her. 
  She stopped eating by mouth 5 weeks ago, she has stopped giving me hunger cues altogether, and now she has fallen into a long sleep.  Her body is entirely still, something out of the ordinary.  And yet, I have no conclusive proof that her brain is, in fact, shutting her body down.
The only proof I have is in my gut. 
The wrenching and non-digestive type of feeling. 
But as a mother, the ONLY mother and caregiver to this child, it is infuriating to me that I cannot and maybe will not be able to know when death is near. 
Jeni expressed that she didn't want to go to work if we thought it was more serious than just sleeping.  I explained that we had to be able to live. We have lived so fully with her and I want  us all to carry that through.  I want us to live, breathe, and wholly feel it all.  I don't want us to sit for weeks at a time and hold vigil for her.  We have lived and allowed her to live and I want us all to continue to do just that.
So what does it mean that she came out of 12 hours of screaming only to go straight into a 56 hour period of sleep? 
I do not know.
For some children, this is part of a very noteworthy decline, one that leads to a somewhat peaceful death.  Not shocking, but just shocking enough because it is 'gradual and yet sudden,' as a good friend quoted to me this week. 
For other children, this is just another phase in this disease.  I remember at the conference last summer being amazed at the number of children who were sleeping and were so still, with little to no movements like Mabel has, and I was in shock to learn that many of the were, in fact, not sedated.  That was just a phase that they had moved into. 
And I'm not sure if we are there, or if Mabel's disease is moving in that direction.  All I know is that for 2 1/2 days straight I could barely get her to open her eyes.  She was not medicated.  She was simply sleeping.  She was peaceful.  She was calm.  I was able to feed her through her tube, keep chapstick on her lips, change her diaper and even put her on my chest, all without her waking. 
All of this for a child whose brain has never prompted her to sleep on her own.
So while the rest was welcome, and while seeing her peaceful was an amazing sight, indeed, it was incredibly worrisome and all new territory for all of us.  The entire house felt different; heavy.

So on day two, deep beneath my covers in the safety of my room, I let loose. 
I prayed and cried and prayed and cried.  Somewhere in the day I found strength between tears and I managed to follow my own mantra about continuing to live, and I was able to go for a run.  It was a 'grief run' for sure; the wind blowing and me knowing that it was, but not fully feeling it.  It was one of those days where the rest of the world looks so happy, without a care, free and light, and in my heart I wish I could have screamed to the mountains everything that was  happening in my beautiful, cozy little home with my beautiful, dying little girl. 
It's horrific really.
The whole thing is horrific. 
But on Easter Sunday, I was determined to at least get her out of the house, sleeping or not sleeping, to be with our family and to break up the heaviness of the situation.  She did wake up, though, not like her usual self.
And even today, she's just not.  She's awake, eyes open, but she is still. 
Calm.  Quiet.  Peaceful.
All beautiful things that I have long prayed for.  And yet my heart turns and aches at what it all may mean.  Each change is so difficult to manage, so frustrating to try and understand.  All I can do is lean on the ones who love me so greatly and the One who controls it all and trust that it will all be exactly the way that it is meant to be. 
Instead of trying so hard to figure it out, I'm trying so hard to not take her big, beautiful eyes for granted.  I'm trying to smell her a little deeper.  I'm trying to focus on being present with her while still living 'normally.'  I'm trying to accept it all and worship a God who is bigger than any and all of my feelings because He placed them in me and He created me for this purpose.
To be her mom. 
Life or death.  Here, now, then and always.
And it is the greatest gift I will ever receive. 
Today she is awake. 
So much is different and new, but she is awake and here with me. 
And for that very reason, I am thankful.