Tuesday, October 6, 2015

sports & such

Our every day life, though different, is evolving.  It's strange to say so but we have no choice.  Their sister is gone but their life must continue.  So many times every day they remind me how difficult it is for them to face.  They miss her so badly.  And just like for me, when anything at all makes them upset or sad, even if unrelated to the death of their sister, they spiral into an oblivion of emotions that are hard to contain.  It becomes harder and harder to crawl out of the pit. 
It took us well over a year but we finally convinced Braden to try a sport. 
Time and time again we were told by people who were less than involved in our every day life that the kids needed a healthy distraction from their sick sister and the environment in our home.  What people didn't realize is that a distraction from her was the exact opposite of what was needed.  They were involved with her care, spending every minute they could with her. 
The one and only emotion that I have not heard either child speak about experiencing after Mabel's death is that of guilt for the days they spent with her.  They cannot look back and regret not spending their time with a sister who is no longer here and I'm so grateful.  She was with us, always.  They were with her, always.  What a gift!
But she is no longer here and we do want to move forward.  It is time to rehabilitate their lives in structural ways that make sense for them. We are fousing our energy on learning what the kids enjoy and guiding them toward those activities.  Braden is fast, runs nonstop and is light on his feet.  Soccer seemed like a good fit. 
And we were right; he's loving it.  

And though I always said I would 'never be a soccer mom.'
I've truly learned to never say never.
This child made me a boy mom.  Chris somehow made me a soccer mom.
And even on cold, early Saturday mornings when it would be easiest to stay in bed and sleep in, I have found the energy [and right amount of coffee] to really enjoy the art of the game.  
The kids are also really enjoying school.
Nora has said more than one time how much she loves her teacher.  And Braden's teacher is the perfect fit for him.  They wake up, get ready without a fight [usually] and head out for the day.  We walk from home to school most mornings, giving us extra time together to talk and pray.  Some days Nora doesn't make it in the door, as she gets anxious and overwhelmed.  We turn around and walk home, arm in arm to spend the morning crying and comforting.  My oldest girl misses her baby in such deep ways-ways that are not mine to tell. 
 It's heartbreaking that this is their life; their story.
Their sister died when they were 8 and 7 years old and they have to live the rest of their lives never seeing her again.  I can't even fathom, as a sibling, how awful that must be.
They are both so brave.

Nora's newest hobby and obsession is mastering the art of cartwheeling.  She has practiced a trillion times each day until she's gotten it just right.  She isn't quite as limber or nimble as her brother and doesn't seem to be as agile as I once was.  By her age I was already flip-flopping with Lindsay around the playground and spent most of my evenings practicing in the yard at Nanny & Pawpy's house.  But she is determined and has worked so hard and she finally agreed to start in gymnastics.  So we are excited at this next chapter for her as well and what it might bring.  Her confidence is so cute, though all the flipping through our little house-not so much.

Yesterday we collected leaves for Aunt Jeni's wedding, driving through town and searching for the prettiest autumn trees.  Everyone is so quick to clean their yards, bag up the colors, but we found just the right amount to fill the bags for her big day.  This time next week I will have a brother-in-law and a new chapter in life will begin for my sister.  It is a joyful season, indeed.
But bittersweet, as usual.
This new season is the first we've experienced without our girl.  Her breath still met our air at the edge of summer.  Yet here we are entering a colder season without her.  Sometimes I can't believe it, like when I find myself driving to the place where she is buried and realizing that is what I'm actually doing.  How did I get here?  Where is she?  When did this happen?
I'm actually living out the thing I feared and anticipated for so long.  The grieving when she was alive was so intense, so overtaking, so nauseating that sometimes this grief feels like a relief.  The absolution of her life and finality in her death have brought a sense of peace, taking away the worry and pain of wondering when and how it would in fact, occur. 
But this missing, that is a whole new emotion.  Something that words will never fully depict.  I run miles and miles every day, trying to outrun the pain.  Or outrun my exhaustion.  Or exhaust myself.  I don't know why, really.  It's a good distraction I suppose.  A distraction from a life that is mine and no one else's.  I was her only mother.  This is only my pain. 
That is so isolating sometimes. 
But then I see these two beautiful kids in front of me, no longer babies, and I refocus.  I focus on their pain, their agony, their anxiousness and worry.  I refocus on what's important for them and the isolation is lifted.  It is not lost on me that the two of them grew up in front of me without me knowing it.  I didn't have a choice but to care for their sister and I was determined to always do that in the very best way that I could.  But in doing so, I lost many conversations and many moments in their childhood that I could have otherwise shared with them. 
But I remind myself that many parents miss those things anyway.  We are part of the parenting generation that seems to be the least engaged.  We tend to be consumed with our phones, our jobs or our own desires and alot of times we no longer take the time to truly see our children. 
 I can say, at least for myself, that has never been the case.  Even in the midst of caring for Mabel, I still saw them.  I was still here with them every single moment of every single day.  I have never been distracted by anything that wasn't worth my distraction.  I have always been right here with them.  Sometimes fully present.  Sometimes not.  But always here. 

I see them now--more clearly than ever.
I am, now, just as I was in the beginning of this mothering journey-raising redheads.
It's terribly repugnant to think that this new phase of our lives is not really a phase after all.  It is simply that which will be lasting-life without Mabel. 
But we are doing it.  We are alive together and living.  It doesn't quite feel right just yet.  It's a little unnatural.  But slowly we're all filling the roles that we were created for within this family and figuring it out together.  That's most important.
And I'm really proud of all of us.  

Monday, September 28, 2015

tomorrow {1/3 of a year}

Tomorrow when I wake it will be four months since I've held her. 
And I don't know how that is possible.
I can't fathom it.  I'd rather vomit than write it. 

 {This week Abrian found photos of us together on an old phone that I hadn't seen before. That was such a gift for me!}  
Tonight brother is sleeping in her bed.  I love when he does that. 
One thing that has been the hardest for me in the last four months is turning off the hallway light that is in front of her door.  When she was alive, I left it on so I could see her while she was sleeping and so that she could see my shadow if it passed before her.  It was one of the first things I had true anxiety about.  Every night I feel overwhelmed by it; like I should turn it off but don't want to.
And can't.
So I don't. 
The same bulb has been on for more than 4 months.
Each month I seem to have one extra terrible day. 
I writhe and puke and cry for hours.  I exhaust myself with every grieving, weary bone in my body, as if to purge all of the pain so that I can withstand another day, hour, week, or month without her.  How am I going to do this; live without her? 
This entire week was awful for me. 
In all of my research and with each personal connection I've made, it seems as if grief gets worse beyond this point.  That's terrifying. 
I miss her so badly.  It's as if my whole body is fractured from the loss of her.  The break is one that lingers and oh, it aches deep when the weather changes. 
 I sink into it and feel every single movement, limping with such lethargy that I can hardly stand it.  It's unbearable at times.  Actually and utterly unbearable.
I finally got an MRI of my back to see what was causing such intense physical pain.  The results showed some things that could be the cause of some of it, but ultimately, and likely-
grief.  sorrow.  anguish. 
Five years of pushing her stroller for hours at a time; five years of carrying her the same. 
This last year, especially, her body was so long and she was incapable of supporting herself in any way.  I know now that my posture was incredibly altered.  Likely I didn't recognize the amount of stress and pain my body was in until I was forced to focus my attention on it. 
Which just makes me more sad. 
I'm tortured by the amount of suffering she endured.  In all of the world, no amount of comfort measures were ever enough.  You can only give so much, do so much, be so much.  And nothing we did ever truly touched her pain or eased her body's torment.  In this lifetime, on this earth, my little girl's disease won out most days.  Batten disease tortured her with every movement, seizure, swallow and cry.  It was completely repulsive.
She, on the other hand, was incredible. 
Everything about her was so intricately beautiful and perfect. 
And yet...batten disease. 
So since finding out that my back is, in fact, not injured I have put more emphasis on strengthening it in the right ways.  I've started classes at the Y again and feel much better overall.  Getting back into an environment that I love has helped and the people that go are many of the same people who attended the classes I taught years ago.  They are encouraging and empathetic and have the same goal that I do; overall wellness.  The connections that I continue to make are vital and I'm thankful that I pushed myself to try.  Though, this week I cried through several of the classes, walking to and from the building and continuing throughout the days, I do feel stronger.
I'm trying to remain focused on all of the spiritual things that I have learned in the last several years and not push myself into anything that is distracting or that causes me any added stress.  At this point I am still very much trying to decompress, breathe, and just be. 
Just 'being' without Mabel is exhausting, terrifying and so very sad. 
 I feel like I'm doing really well most days by functioning (walking the kids to school, working out, cleaning the house, making dinner, doing homework) but some days I feel like even that is complete overload.  The amount of energy it takes for a person's body, mind and spirit to truly and effectively grieve is incredible.  
Exactly one month after Mabel died we went to pick out the details of her monument. 
This week we found out that nothing has been accomplished or even started on it. 
That alone sent me into total despair. 
Serious desperation. 
 I felt so proud that I mustered up the courage to go so soon after she died, but only with the hope of having it finished by fall or at least before winter.  If I would have known that it wouldn't be done by now, I would have maybe stayed in bed on that particular day and left the hard stuff for another time. 
It was important for me because it truly was the final detail that I needed to accomplish in order to know that I had done absolutely everything for our girl.  And it was important to me that it was not only taken care of but handled correctly. 
Disappointment in the midst of grief is possibly an emotion that deserves a new word altogether to describe it. 
So this week I had to go over those details again, with someone new. 
A chapter that I thought was closed reopened this wound and left it gaping. 
Grief makes you feel as if you are never healing.  With each new day, there is something new to remind you of this horrific loss. 
My baby. 
Luckily, the stone will be finished in just a few short weeks. 
Everyone pulled through for me like they always do.
Relief and gratitude.
One thing that I have noticed lately is people mistaking my sadness or missing of Mabel with lack of faith.  I don't ever need to defend it but let me assure you that grief is not the lack of faith.  Sadness, depression, anxiety, missing-none of these have anything to do with what someone believes in.  They're simply emotions set forth by circumstances that make us human. 
I do not doubt God. 
I am not angry with Him, displeased by Him, or indifferent to Him.
In fact, I am more in love with Him than I have ever been.  I have seen His mercy and majesty in ways that most never will.  I am thankful for His presence and His truth.  I am thankful that there is a God who loves us so much that He provides a hope; an eternal home of rest and freedom. 
 I plan to share about all of His goodness in our lives. 
About how He showed up in the most intimate and personal ways through the death of our precious girl. I will write about His unending love and of the intricate details that reminded us every step of the way that He, indeed, directs us in it all. 
Behind the scenes and late at night- I am plucking through, writing the really hard stuff so that when this great story of love and life and death and truth and suffering and triumph is published one day for the world to read, it will do nothing but point back to Him. 
In the meantime,
"leave the bereaved mother to her grieving. 
She is the woman standing in front of you at the checkout line on the verge of tears because she just dropped the jar of pickles,
the cashier who seems she could care less about her job, but had to return to work much too soon after her loss,
the woman who cries in her car because everyone in real life has grown tired of trying to ‘fix’ her pain,
the woman at the altar, praying a broken prayer through tears and running mascara,
the woman who wonders everyday if she will lose her other children too,
the woman who laughs to hide her pain,
the woman who hides in the bathroom at social events because something about trivial conversation is nauseating at best,
the woman who no longer recognizes herself in the mirror,
the woman who strangely feels empty and empowered all at the same time,
the woman who feels like she can conquer the world, because she’s got nothing to lose,
the grandmother who shares her losses with you, only after you’ve lost a child,
the mother of young children whose hands are constantly full of cheerios, goldfish crackers and dirt, who is always being told by others how full her hands must be, but thinking to herself not full enough’.
the woman ‘addicted’ to social media because she has finally found a community that understands her pain, and her new normal,
the woman you don’t recognize anymore,
the woman who is dancing and singing out loud, not afraid to make a fool of herself,
the woman who looks broken even when she’s smiling,
the woman who wears her heart on her sleeve,
the woman who bears her grief silently, and puts on a mask for her outside world,
the woman who can’t seem to put two sentences together,
one of the bravest women you will ever encounter.
The bereaved mother has lost more than most people will lose in a lifetime. Consider her pain, speak gently to her, and know that grief changes you for a lifetime.
The bereaved mother is all around you."

Friday, September 18, 2015

this is grief.

There is a blue ink pen in a corner on the floor of the kitchen.  It has been there since Mabel died and I can't bring myself to pick it up.  I sweep around it day after day, noticing it but never bending forward to move it.  Likely someone will do it for me now that I've mentioned it and it won't bother me when they do.  It's just something I haven't been able to do myself. 
I walk in and out of her room constantly. 
At first I thought I may keep the doors closed on hard days but I quickly realized that every day is hard so that seemed foolish.  The doors have windows on them; a true gift when she was alive, but now they only seem to taunt me as I open and close them to vacuum.  At some point in every day the cat lays on her bed in the place where she used to sleep.  Surprisingly, it brings me some comfort but I find myself eager to straighten the bed once he has moved.  I find myself doing it nonchalantly many times throughout the day. 
We haven't moved a thing.  In fact, Chris made it very clear that he's more than fine with her room staying exactly the same forever.  Both kids have expressed the same.  So half a package of size 3 diapers still lay stacked in the tidy bin next to her bed, along with extension sets and syringes that my friends left behind after making their sweep through the house to purge medical supplies quickly after she died. 
I remember making it clear that I wanted her food and medications gone from the house quickly.  I couldn't stand the thought of having to see them, and honestly I would have wanted it all gone sooner if that had been an option.  To me her food did the opposite of nourish her in the last few months of her life and her medicine was always ineffectual.   But I can't lie and say that I haven't wanted to smell her grape flavored formula or that I haven't opened the cabinet where her medicine used to be and stood quietly, blankly staring into the empty space that now stares back at me. 
Again with the mocking.
God, what I wouldn't give to sit and write a frivolous blog post about the morning fragrance of my home in the fall or the vibrancy of a simplistic life. 
Rather, I sit to type and can't help but recall the smell of death on my baby's breath just three short months ago and the way it felt to hold her hot, feverish body just hours before her last breath escaped her.
  What I wouldn't give to be able to go to my yoga class and not spend the entire time that should be  dedicated to quiet and meditation sobbing hot tears.  Because instead of appreciating my body for all of it's capabilities and being grateful and accepting of where I am, I feel sorry for the suffering she endured in hers.  I have yet to feel anything other than ache and anguish deep within me physically. 
I had to pick Braden up from school today because of a belly ache.  He called from his teacher's phone...again.  The teachers are being incredibly patient and I'm so grateful but there is just no one who can understand what it looks like in our home from day to day.  I can almost visibly see the edge that we're all walking on; missing her, longing for her, coming out of shock, leaning into a new normal because we sort of have to, but not at all wanting to. 
It's nauseating for me to look at their faces and yet not be able to remotely comprehend their pain. 
I, her mother; they, her siblings. 
None of it makes sense without her here and they know it.
I did manage to pull out of fall decorations last week and Braden seemed excited.  It was mindless, like everything lately, but I felt accomplished in trying.  As I was going through boxes I came across several crocheted bonnets that granny had made for Mabel that she always wore in the early fall.  I smelled them, but nothing smells like her.  I inhale deep, almost holding my breath just for the scent of her but it's useless. 
She's not here, I constantly have to remind myself. 
Chris has been gone all week and I've done my best to stay away from the house as well.  I had no idea how hard it would be to be here alone without him.  I don't know what I expected but it has been completely overwhelming.  Emotionally I did really well.  I kept myself busy and have been distracted and just plugged through.  Today, though, I feel exhausted from just trying and am relieved he'll soon be home.  We're clearly grieving with one another more than I even realized. 
I sat down at my computer last week when I was up late alone and tried to begin writing Mabel's story. 
I started from twelve weeks before her death because that is when we had a distinct moment that changed everything for all of us.  A seizure like Chris and I had never seen overtook our girl for several minutes and honestly, it was horrific.  I would rather live the day of her beautiful, peaceful death a thousand times over than even one more second of something like that. 
It was terrifying and life changing and we both knew it. 
But as I sat to write, the details consumed me and I couldn't put it all together and nothing made sense.  I was unnerved and distraught and I let it overtake my mind. 
"It's too soon," I reassured myself, "and that's ok."
I gave myself a few days and let my spirit settle.
  I have to remind myself that people do not just become writers.  Being a writer is exactly like being a musician, an artist, or even an athlete. 
You either train and practice all of your life with all of your heart to become one, or you are born one; with the natural talent, gifts and capabilities to see it through. 
Since the time I was old enough to hold a pen, I have been a writer. 
And then God gave me a story. 
 It is one that I know is meant to be told and heard. 
 It's gritty, tenacious, sad, joyful, victorious, beautiful, messy, true, and perfect.
And also, it is ours. 
Only ours. 
I am truly the only one who can write it because I am the only one who lived it.   
So I just keep praying that God would give me not only the wisdom, courage, and strength to write the words but that I would be sensitive to myself in doing so.  That I would be patient and gracious with myself in this grief and that when life carves out time for me to devote only to writing her story; His story, I would be in tune to that and set my focus on it. 
But not until then.  Not until I'm ready.
For now, I can't even pick up the blue pen in the kitchen...and that is ok.
I cry fast and hard through yoga class and that is ok.
I straighten her bed and smell her hats and stare into empty cabinets and am just surviving and that has to be ok. 
  The human that I am at this point is very robotic.  My new schedule is helping and I find myself mostly looking forward to the predictability of each new day.  I think this is all very normal and I'm proud of myself in the moments when I feel true joy and even when I feel complete and utter despair.  This helps me remember that I'm alive and surviving.  This helps me know that sometimes getting through the day is all I can do and though I often feel like the shell of my former self, there are still many moments of authentic emotion. 
This is grief. 
Jumbled, disarranged, and often consuming. 
To read other stories of life, hope, and grief, please visit my friend Michaela's blog series, titled "This is Motherhood too."


Saturday, September 5, 2015

8th Birthday In Photos.

We celebrated our birthday boy last weekend with a special party.  He had no idea what it was going to be but his excitement always make it all worth it!  Here's a look into our day in photos...


Friday, September 4, 2015

Dear Braden (happy 8th birthday, love mama)

Dear Braden,
Tomorrow you turn 8 years old!  And I cannot believe it.  Mostly, time is a strange thing to me right now but also, where has it gone?  8 years ago on this very night I was so anxious.  I was leaving your 13-month-old sister over night for the very first time ever in order to go to the hospital and deliver you into this world.  I was anxious to see you, smell you, and hold you. 
You were making me a 'boy mom' and I was so excited.
It's no secret what those first few years with you were like.  You started crying and never stopped.  Literally for 9 months straight all you did was scream.  Though that was exhausting and such a challenge, I'm past it now.  I can see the bigger picture and how, even then, you were helping to prepare my heart for years of screaming to come.  I know now how the patience I learned by being your mom was so needed in the years to follow.  You played a huge role in making me the mom I am, buddy!
On the night before your 8th birthday, I want to tell you all about who you are right now...
You are loving, gentle, kind, genuinely good hearted, caring, compassionate, anxious, frustrated, appreciative, grateful, silly, really funny, and very emotional. 
You have several friends but you will befriend anyone.  You like attention but you are still figuring out how to be the center of it while not being embarrassed.  We are teaching you that when people laugh at you, that is a great trait, not one to be ashamed or upset about.  You are full of compassion and full of God.  You love everyone that you see with arms and heart open.  You are a free spirit in many ways and even now I can relate to the wildness that makes you who you are!
You wake up excited for living every single day.  In fact, I don't think that you have ever woken up in a bad mood.  You greet me with a smile and far too much energy before my first cup of coffee (as you always have.)  You are consistent in your behavior and by that I mean, still unruly and unpredictable. 
You are wild, rambunctious, and a non-stop talker.
You are the master builder of Legos and spiller of chocolate milk.  You [still] prefer a full bag of chips for a snack and sleep with the same blankie that we brought you home from the hospital with.  I still yell your name 1,000 times a day; time after time.  You still don't listen. 
You are sensitive. 
You feel people's emotions and truly see their souls.  You have empathy that is far beyond your years and are so mature in that way.  You are wise, as well, and say things that often knock the wind out of me.  You are a speaker of the truth and prefer to not be around things that make you uncomfortable.  At 8 years old, you stand by your own convictions and that is a trait to truly be envied, buddy. 

You love to swim.  You are finally learning to try new foods.  You really enjoy art and using your hands.  You enjoy being outside, but are content being in your room too.  You talk to yourself (or whoever is listening).  You are INCREDIBLY musical.  You love animals and are very tender hearted with them.  You are a slight rule-breaker and you are ok with that  That is also very admirable because you stand by what you do.  You act, but you're confident in your choices-right or wrong. 
I like that.  
(though hopefully you won't read this until you're an adult and I've parented you through the wrong ones first).
You are remorseful, though, and apologize very quickly.  You forgive quickly as well which is incredible.  In those emotional ways, you make it very easy to teach and parent you.  I love that about you!
This year you learned to tie your shoes, started a new school and gained 6 pounds over the summer!
You are the best brother! 
Big and little.
You were our only boy for a reason, and I truly believe it's because both sisters needed different parts of you. 
This year you loved Mabel so selflessly (as you always did).  You knew she was going to Heaven and you were ok with it.  In fact, you longed for it for her.  You held her in those last days and talked to her with such gentleness.  I know she felt safe in your arms.  You were a little scared, and that was ok.  We walked through that with you and eventually you let love overcome your fear and wanted to be a part of each intimate detail of her death.  This was special to me because I watched your heart really lay itself bare.  In those moments, I know Jesus was there and I know He filled you up, bud.  I have always known you were created for a purpose but I watched you in those days and my heart was overjoyed at the confirmation that God has called you to do really special, intimate, healing things in this world. 
You miss your sister with everything you are.  You cry almost every day.  But you talk about her and laugh about your memories with her just as often. You speak of Heaven every day.  Your hope is real and true.  You are incredibly brave.

Just yesterday you told me you had your first crush.  You love to dance a lot and you make all these crazy noises constantly.  You smile and cry all within a minute.  You are moody and yet so predictable.  You are everything frustrating and exhilarating for my heart, which has always been true of you.  That's what makes you you! 
Oh buddy-
I am so thankful for you.  Without you, I could never be me.  Almost daily, all of the yelling turns to laughing and the tears turn to praying and we both end up turning back to Jesus and loving one another deeper. 
My hope for your birthday this and every year is that you would always remain true to exactly who you are right now.  I know you'll grow, change, and mature but at the root of who you are is an incredible young man.  I pray you'll grow up to be as kind and sweet to everyone you encounter as you are now.  I pray that you'll never be afraid of a stranger, but have compassion for them the way you do now.  I pray that you'll use your voice and your smile to make the people around you very happy-like you do now.  Anyone who is around you for any amount of time leaves you feeling good.  You make people feel good, Braden. 
You're positive and an encourager and a have-fun kind of boy. 
I pray that through it all, that is exactly who you remain!  
I love you Braden!  Happiest Birthday, buddy!
You're the best boy ever. 
Let's shine the light, shall we?
Love, mama.  

Wednesday, September 2, 2015

How to help the grievig family. [that's grief]

I've only technically been a bereaved mom for three months but my grieving began long before Mabel died.  I haven't studied grief or it's complexities in a classroom but I feel like I have a PhD in it's components.  I have walked it, both anticipatory and now in all of it's reality.  I have studied it.  In fact, I have spent countless hours reading books, and articles explaining what is 'normal' and healthy in the wildness that is grief.  Much like an expectant mother is eager to devour 'What to expect when you're expecting,' I was eager to learn all that I could about myself and what exactly was happening within me during a time when I felt so unraveled.  And that's exactly what was happening; an unraveling. 
In the last week I have reached out to several mothers who have lost children and asked them directly, "What helped you after that loss and what hurt you (intentionally or unintentionally)?"  We have discussed it in our own home and our answers were very similar to theirs.  I am intrigued at the idea that grief is very much the same and yet so different for everyone.  Losing a child is a different ache than losing a mother but the grief connection is deep and thorough, one that can be understood between two people with very little words.  Everyone who is grieving very much needs to be validated for their own loss.  Jeni and I went to a support group last night and I told her before going in that I wanted her to have a voice somewhere because unlike she has, I have never lost a niece.  It's important to acknowledge that even in our own deepest hurt.  Those around us are grieving too and it's unfamiliar and often frightening for them also.   
 I can only speak out of my own experiences and for those who were so kind to share theirs but I hope to do so articulately.  I also hope to do so asking for a little grace, hoping you hear my heart, praying that it may help you or someone you know in the future. 
There are very practical things that you can do to help a families who have experienced the loss of a child.  Ours may be the first and only family that you have encountered in this situation but likely and unfortunately we will not be the last. 
First:  consider making and delivering meals without expecting small talk.
When Mabel was first diagnosed, one of my now-closest friends started bringing our family meals each week.  She had a busy life with her own with kids, a husband, a home to manage, sports,   and a full time job but she made it a priority to include this in her routine.  Every week I looked forward to the night when I didn't have to worry about cooking and could focus just on my family. 
After Mabel died, our family asked for strict privacy so that we could bind together and mourn properly without being bombarded by noise.  However, the morning before our girl met Jesus, that very same friend literally dropped donuts on the doorstep, reminding me of this quiet ministry that was incredibly crucial.
Since then, there have been several instances when I have had women (moms) who have texted or messaged and said, "Dinner will be on your porch at 5:30.  Pop it in the oven and enjoy.  No need to come outside and talk.  I love you and am here for you."  You don't know how helpful this is and what a relief it is to simply eat without the expectation of having to carry a conversation.  Even now, after three months, sometimes a conversation that I would have loved to engage in before Mabel's death exhausts me for the entire day. 
It's not you.  That's grief. 
If you know a family that loses a child, this is the absolute greatest time in the world to practice true, Christ-like selflessness. 
I have also had women text and say "there are gifts on the porch for the kids.  I hope they enjoy them.  We are thinking of you." 
This means everything.  This is a reminder to the grieving family that we are still on your mind.  That you have not forgotten our pain.  That you are praying and that you care.  Each time this happens, the isolation is slightly lifted, even briefly and it makes the heart happy which in turn strengthens it. 
Secondly: Talk about our baby! 
Don't be afraid to ask about the deceased child (or even their death.)
When I asked Chris about this post, this was his first response, as was it the response of several of the mother's I inquired with.  After your child dies there is suddenly this silence.  Especially if the family lost a child due to an ongoing medical complexity such as a rare disease, we like to talk about it.  And her.  Just because we asked for privacy after her death doesn't mean we never want to speak about her again.  We simply wanted time together to get through those initial hard days but we don't want to erase her from our dialogue with you.  Her medical needs were part of our every day life.  Her death was also part of life.  In fact, it was a beautiful part.  If you ask, that leaves it up to the grieving person to tell you the details that they feel comfortable with but it opens a door of flexibility when talking about their loved one.  It's important to them. 

 Dad's have to return back to work, mom's have to figure out a new normal but ultimately that should involve being able to talk about our loss because she was our life! 

Third: Keep texting.  Or messaging.  Or calling. 
Again, this becomes an act of pure selflessness because truly, grief will likely cause us to not answer you many times.  But to see your messages and to see the missed calls-it reminds us that you are here.  It does matter.  It isn't that we don't want to talk to you; sometimes it is that we do not have the emotional or mental capacity to carry on a 'normal' conversation.  The confusing complexities here are known by those grieving and misunderstood by our friends or loved ones (who may or may not be grieving themselves).  It's really to difficult to explain; just know that it means the world to see you still reaching out and taking the time to try.  Please don't stop. 
Fourth:  Acknowledge that you can't understand (unless you truly can) but that you are praying. 
This is SO important and was also an across-the-board answer when I asked the other moms.  Even if they aren't super spiritual people, knowing that people are praying on their behalf seems to bring comfort.  Sometimes we don't have the energy to do that ourselves and it feels very relieving to know that someone else is 'going to bat' for you on days when you maybe can't yourself.  This is another complicated part of grief that a lot of people experience-feeling angry with God.  So again, I can only speak for myself when I say that it has encouraged and helped me.  If you know a family that is grieving, likely you'll know what to say.  If you are aware that they are experiencing an anger phase of their grief, maybe use the words "you are always on my mind," or "I'm thinking of you."
Just simply acknowledge them for exactly where they are at the time, with no judgments and let them know you're with them in heart. 
Most importantly:  Show up and be consistent. 
When you're needed or asked, come around.  When you're not needed or not asked, be available and let it be known that you are.  Let the grieving family know that you are there for them whenever they need you.  They may very likely not ever reach out, and that has to be ok.  They need to know that you are there.
  My friends have been it abundantly clear that even they, knowing me the best, are very unsure of what to say or how to answer me most days.  They try to be sensitive but it is difficult for them as well.  Rache put it best, "I figure as long as I consistently reach out to you, even if I'm saying the 'wrong' things on that particular day, eventually there will come a day when what I say is the right thing and that will matter."
It's very true.  Consistency in friendship during such hard and uncertain times is key. 
On the same token, but the other side of this tricky grief game, I would like to give some examples of things that are not helpful and even sometimes can feel hurtful when dealing with a grieving family. 
A lot of these do not specifically apply to me or how I have felt but are very common among other parents who have lost children.  It's key to just be sensitive.  What I can tell you is that grieving parents, especially of children who have suffered for most of their life, have learned a lot of grace for the things people say to them.  We learn to really let go of things that unintentionally hurt us because we can't understand being where you are, either.  We know that it must be very tricky to speak with us, relate to us and try to love us at the most unimaginable and worst times.  We are dragon moms, after all.  Please know that WE know how to be sensitive with you as well.  Nothing you say out of true compassion is offensive or hurtful.  We usually process it and move on, knowing your heart was only full of good intentions. 
If you know a child who has died, sometimes it is hurtful for the mother of that child to hear:
-"He/She is in a better place."
(We know that they are!  We are content and at peace with paradise most days, but most days the thought of them being here, in our arms, seemed pretty great too.)
-"What are your plans for the future?"
(Please note, we don't know and we shouldn't have to.  We haven't the energy to compose a thought about the future without our child in it yet.  We are simply going to breathe every day to make it through each minute.  There is no plan.  Surviving the pain is the plan.)
-"At least he/she is no longer suffering."
(Again, we are VERY aware of our child's earthly suffering.  We lived it.  But we also know that we provided the greatest comfort humanly possible to our child.  We know they aren't suffering but it doesn't feel great hearing it from people who did not endure the suffering of our child every day in the same ways that we did.  It often feels like an unfair statement made by someone unqualified to say it.)
-"You know he/she isn't at the cemetery.  You shouldn't go so often.  You should try going to a church or temple; somewhere holy."
(Please don't tell the grieving mother what you think she should do or where you think she should go.  Leave the grieving mother to her grieving.)
-"You have [other sibling's names] to keep you going."
This is true for me.  I have Nora and Braden and many families have other living children as well.  Nora and Braden do not replace Mabel and they don't take away the hurt or pain I feel from her not being here.  It's a lot of pressure to put on their little souls to be the things in this life that 'keep me going.'  Mabel (or the deceased child you know) and her siblings are all very separate and combining them as living vs. dead is difficult to process.  Though it's true, it doesn't always come out accurately or in a way that is helpful for healing.  It makes me feel like Nora and Braden should be  'enough' to get me through the days that I miss her and sometimes nothing is 'enough,' which leads to deeper feelings of guilt surrounding Mabel's siblings. 
Again, it's not them.  That's grief. 
 -After a child dies, do not let the family see your guilt for not spending more time with that child.  Do not let the family hear you say things like, "life is just so busy," or "life just gets in the way." 
(To us, there really isn't a good enough excuse to have not been around.  If you feel that way, it's understandable but please feel it elsewhere or speak it to someone other than us.  We don't want to have to and can't be expected to comfort you for the things you chose to miss out on with our child.)
-Do not use the fact that other people were supporting the grieving family as an excuse to not be around.  Plain and simple: it's not a good enough one. 
(We have many friends, it's no secret.  But you can always use one more person who cares.  Always. Always. Always.)
-Do not expect a grieving parent or grieving person in general to validate your friendship with them during this vulnerable time.  Be a friend and show up!  Text or call.  But do not NOT do those things and expect them to come to you to make things right.  This is not the time for friendships to unravel because of insecurities or you not knowing the 'right' things to do or say. 
There is never anything exactly right or perfect but I can promise you that by knocking on the door, sending one text, sending flowers or a card--those things will always be reminders of the kind of friend that you are; the selfless and thoughtful kind. 
The last thing and I think the most important thing I want to touch on is this:
If you know a grieving family, be courageous and compassionate for them and to them.  Show extra patience, extra kindness.  Be sensitive and gentle.  Though time has moved on for you, they are still living in the grit and muck of very unruly grief.  It's a wicked and lasting ride; try to stay on board with them.  Don't put a timetable on their grief and have very little expectations of when they may be 'the same' as they once were. 
They may never be. 
Step out of your comfort zone.  Be present. 
And love in ways that are unique because likely, that will matter so much to the family.  So much, in fact, that they may never have the right words to thank you accurately.  But they'll sincerely and gratefully appreciate all you do for them just by being there and being you. 
Again, nothing you say or do is ever really 'wrong.'  In life we all have to learn to just let go of the things people do or say that are unintentionally painful.  It's just as a grieving person, it poses more of a challenge and a lot of times we don't have the emotional energy to figure that out and let it go.  This often harbors pain or anger and that then extends grief into other areas of our hearts. 
Again, not your fault.  That's grief. 
I'm sure that there are so many more things that I could write about in full detail but this will hopefully be a guide to some on how to move forward with a family who has lost a child or a loved one.  If it's not accurate for your own grief, that's ok.  Like I said, I can only really try to portray what I've felt myself or have personally heard from others. 
"Therefore, encourage one another and build each other up."
1 Thess. 5:11
Coming up:  How to help siblings of a deceased child.