Tuesday, May 23, 2017

the end of a school year...

The school year is drawing to a close and all the hard and familiar feelings are in the air.  
I can't possibly describe how proud I am of these kids, only that I say it day after day after day.  They have endured the worst and have somehow managed to rise up and above to achieve incredible things, not only in school but in every way.  

Two years ago as other kids were mindlessly enjoying their end-of-school field trips, inflatable days, movies and snacks, Nora and Braden were coming home to a sister who was literally starving to death.  The day that she died fell on the last day of school that year.  Nora stayed home for a day prior because she was just enough aware of what was happening that we felt like it was crucial for her to spend that time at home with her sister.  Braden was just in 1st grade and he was so excited to go on his last field trip.  Of course we let him and looking back, that was the right decision too.  I am really grateful that even in the moments when I was battling for the care and comfort of my dying child, I was still able to do the same with my older kids.  I met them right where they each needed me, made decisions for them both individually, and I still feel really proud that I can do that today. 
This last week of May is so overwhelming in general.  This year feels really different in a whole new way.  I feel this incredible sense of gratitude for the school year and all that I've seen it do for Nora and Braden.  Nora has changed and evolved into such a young lady (with a lot of mouth and sass,) and she has maintained straight A's all year [well every year, but especially in 5th grade, I find this impressive as the work load was on a whole new level!]
  On Thursday she will receive the presidential award in a ceremony that I'm so looking forward to.   
But shhh....it's a surprise! 
She is still seeing a therapist (who she adores) and we've seen that be a really positive contribution to her routine.  

Braden has also changed and grown this year in ways that I never could have imagined.  The structure that the classroom brings to his mind and spirit has been key, along with a really great doctor who manages his medicine, moods and behavior.  He also won an award for his grades this year but beyond academics, I am just so proud of Braden's heart.  When you listen to him speak; with conviction and empathy far beyond his years, there is no doubt of the call that God has on his life. 
Though I haven't spoke much of the specific dates or the memories that I have from this time 2 years ago, I haven't had to.  Braden cried hard in the shower last night missing his sister and 'wishing she never had to go.'  Nora will casually talk about how she missed the last day of school, how Mabel looked that day and even the way her breathing had changed.  Last year the weather felt very similar to the year she died but this year it is unseasonably cool and in a way, I'm grateful.  The days don't feel the same to me as they did then and that is helpful.  

Though, I can feel the tumultuous tide inside of me.  
My hair color has changed twice in a week, my nails are short again from biting and I'm doing the 'anxious yawn,' which we now know could be from ATP1a2 but we aren't certain.  That seems to be the story of my ever changing life-
nothing is really certain.
Except for just one thing...
A Father God who loves me so unconditionally and never stops showing up in all the right ways at all the right times.  He has led me from doctor to doctor to doctor, friend to friend to friend, teacher to teacher to teacher.  He never ever stops guiding my steps and leading me exactly where I need to be.  And, I suppose that like everything, God is always just how you choose to see Him.  But I choose to know that He is good and faithful and totally unchanging.
This year I am helping out with Nora's softball team (more that anything, just so we can connect and stay connected through this hard pre-teen season for she and I).  I have been to two field trips in the last couple of weeks.  We are gearing up for our summer vacation to Michigan and the arrival of a new nephew/cousin.  The days are familiar but also very different.  The span of time from when I last held my baby until now is so very long and deep and vast that it's almost terrifying to think about.  But also, the wind and the rain smell exactly like they did that May, just 2 years ago and in my spirit time stands still.  I am right there with her and no time has passed at all. It's a strange and hard juxtaposition, indeed. 
As the day draws near and I find myself reflecting on life with Mabel and our life without her, I feel an ache that I can't describe.  Being able to articulate it would help, I believe, but I'm caught in the grasp of this monster that won't let the words match the feelings.  In the belly of the beast of grief I find myself flailing, arms and legs uncontrolled-much like hers were all of her life.  I am scattered and disoriented and frustrated and sad.  
But also, still relieved for her.  
Still totally and fully thankful that God rescued her from her own being.  
Still at peace knowing that she was mine, I was hers and we will be reunited once again. 
In the coming days, please think of our family.  Please pray for Nora and Braden as they approach the last school days with hesitation and remembering.  I know that as each year passes, people will become less aware or even less interested to the emotions and the memories that they associate to this time of their childhood, but for now, please don't let that happen.  Please be mindful of all that may be crossing their minds throughout the day and how their little hearts may be affected.  If we can surround them and uplift them, I know that they will be better for it.  

Thank you for doing the same for all of us who loved Mabel so deeply.  
I'm learning to really ride the waves of monumental days as they come and embrace them for what they are.  A time to up-heave all that I've pushed down and release it so that I can further heal.  So that I can continue to let love and forgiveness in.  So that I can walk with an open spirit and mind.  

As always, in honor of Mabel, please wear yellow on Monday, May 29th and spread love into the world by doing something kind for someone.  And...just speak her name. 
 Share the story of her life and how it impacted your heart.  Use the hashtag #mabelsable to share your photos of that day with us.  Photos of any and all things yellow will make us feel the light that she continues to shine into this world!  
...
As another year without her draws to an end, there are still so many new beginnings to feel grateful for.  Hoping this summer will rejuvenate us once again and give us the strength to move forward with grace, compassion, kindness and courage JUST as our babe taught us to do...

Thursday, May 18, 2017

RP, RN

You all know the story.  [or maybe you don't so I'm going to tell you anyway...]
Several years ago when our lives looked very different and the internet was a brand new, dial-up sorta thing, I logged onto a Marine Corps wives/fiance's/girlfriends support forum.  
It was there, on the world wide web, that I met I Rachel.  My very best friend.  
I was probably just 18 and she was maybe 16 or 17 years old.  Oh, we were just babies.  

Our young lives started rapidly with marriages and the military.  Luckily and by no coincidence, our husbands (at the time) were stationed in the same state, just about 30 minutes away from one another.  We saw each other through months and months of training and deployments where we were without our spouses and alone, far from 'home' for both of us.  
We got really good at doing life together early on in our friendship.  

Fast forward several years.
We both moved home to our separate states; mine Illinois and hers Maryland.  We talked on the telephone at least every day.  I still had a landline.  She tried for months to get pregnant.  It was a huge heartache for her when month after month she realized she wasn't yet having a baby.  But then...
She was pregnant!  And shortly after...once again...so was I.
---
Mabel was 3 months old and Harper was just 6 months old when I got the call that changed our lives forever.  Rachel's husband was having an affair.  
I begged her to get on a plane to me.  And with just one green suitcase and her baby, she did.  

The plan was that she would stay for a couple of weeks, just to get away.  Just so I could see her through that dark and devastating time. But the darkness didn't lift or subside in just a couple of weeks.  The pain was worse than we initially thought.  So time went on and on and Rachel and Harper stayed and stayed.  
And lived with us in the big white house on Webster.  

A couple of months into her staying she took a job at a local greenhouse.  She had used tax money to buy herself a car and she drove every morning, all through the winter months to get her work for the day and brought it back home to do it so that she could be with Harper.  Shortly after, she began making hair bows for babies and selling them online and at little markets near us to make extra money.  She called them, "Harper's Halos," and she was really successful.  As my little town has always done for me, they rose up to meet her where she was during that time and supported her endeavor. I can say now that we have both learned that the support of people in a little town can literally rescue you from the most hollow places.  

Rache nursed Harper for an entire year of her life even through all of the trauma and chaos that came.  I so admired her for that.  I tried hard to take care of her so that she could take care of her baby and together we made an incredible team.  Little did I know that she would soon repay me in all the same ways and more. 
When Mabel was about 5 months old, I said out loud in the living room, "I don't think that she can see me..." and Rache responded abruptly, "No. She can't."

She loved me and respected me enough to let me come to the conclusion on my own and she sat back with just enough grace to catch me when I fell into the reality that, yes, my baby was incredibly sick.  

I know that God orchestrates our steps.
I know that because I have trusted Him in my life time and time again and watched Him do so in a way that can only be explained as divine.  

So when Rachel's husband left and her world was turned upside down and I begged her to come here, though I didn't know the details of it all then, I trusted that it was right and that it would all be ok.  That He was holding us and that He would see us through. 
I had no idea yet that Mabel would be so sick.  I had no idea that we would spend literally HOURS upon HOURS late in the night up together because our babies wouldn't sleep, or she was sad or I was sick with a headache.  I had no idea that therapists would come almost every day of the week, that they would bring equipment that overwhelmed my house and soul, that Mabel would start puking up entire feeds and need a G-tube and scream for hours on end and that I would need a respite inside of my home that I couldn't get elsewhere.  
A respite in my best friend's heart and sometimes her literal arms.
Somewhere along the line Rachel moved out of our big white house into a little apartment and then another little apartment and then one more.  And then, Rachel fell in love with the man who would later baptize my daughters and bury one.  But let me not get ahead of myself.

In between all of the muck and madness, Rache somehow pulled herself together.  She called all the places she could for resources and help, not only for life in general but to help her get into school.  (And I'm still so impressed with this because making one phone call totally overwhelms me.)  But she never stopped.  For years now I have watched as she has filled out applications, made phone call after phone call, talked to so many different people, received grants and scholarships, attended meetings, interviews, and everything in between to make her dream a reality.  
She never, ever stopped. 

Tomorrow, she graduates from nursing school.

And I'm weeping just writing it.  

Because the truth is, if those yellow walls could talk they would tell you that it sure wasn't pretty in that house most of the time.  I was 'homeschooling' Nora and Braden.  I was doing early intervention with Mabel constantly.  I was searching for a diagnosis.  Rache had surgery and Mabel had surgery and there was screaming and flapping and wailing and gnashing at kids, each other, the dog and anyone who walked through the door most days.  

And nights were worse.  They were much worse.  
There was anxiety and fear and sadness and so many unknowns. 
But let me tell you, these were also some of the best days of our lives.  It was a complete and total disaster most every day.  Looking back, I'm not quite sure how we survived it.  But I know that we did so with a push and a pull of love for one another.  When she needed to nurse her baby and cry for 2 months, I cooked dinner and did the laundry.  When I needed to spend hours on the computer researching rare diseases, she played with the kids outside so I could. 

We learned so much during that time-about each other and about life; how we wanted it to look, what we wanted out of it.  About our dreams for the future.

No one-not even those closest to us can possibly understand the things that were said, done, thought and lived inside of that house together for all of those months.


 
But as you recall, the bottom fell out of life for this dynamic duo yet again when just a few months after Mabel's diagnosis, I found myself in the big white house all alone with 3 kids.  

I was completely devastated and traumatized. I literally couldn't move from the couch and had never really felt such despair.  My entire life was over, I just knew it.  My baby was dying, my husband had left and everyone around me was happy.  I was alone.
Only I wasn't.  
I never, ever was.  Not even for a second.  
This is the part of my story where I could fall on the ground and roll around like the Pentecostal I once was.  Not only because it's beautiful and redeeming but because in the most broken places were the MOST incredible, supportive, strong, brave friends.  

They went before me, beside me, totally surrounded me, fell beneath me, built up a wall around me.  They would (and did) go to war for me.  
Spiritually, emotionally, physically some days.  
She did. 


For a really long time she was one of the only people I trusted Mabel to be with.  
Her being in my home meant that I could go on a walk or to the grocery store alone.  She picked up the slack in areas where maybe I would have otherwise been slacking.  
I think she could say the same of me and that's what makes it all really raw and beautiful. 

The bare bones of our friendship has always just been our love for God, and for one another.  We have taken everything else in stride, clinging totally and wholly to those two things.  Between us we had a lot of kids, and a lot of baggage and a lot of hurt.  
But even more LOVE.  
So, so much love.

We have learned tenacity and tenderness; patience and practicality; endurance and wisdom.  We were taught, through pain and life and love and struggle and burdens and total heartache ...
that we are fully capable of surviving anything.  

Two summers ago I sat outside on the porch in the heat, right around this exact same time and said out loud, "I don't think she's going to live much longer," and Rache replied, "No.  She's not."

My heart was shattered at the knowing.  But we had walked it so closely together. I knew that if she knew as well as I did that my girl was meeting Jesus soon, she really was going to die.  

She was worried about me, she said. She had never seen me look so bad. 
I say it often-that I can't imagine the pain that the people who love me have had to endure through the years as they have watched me suffer.  But she rose up for me then, like she had so many times before, and many, many times after. 
In the past several years since she has been in school, Rache has, of course, made countless new friends.  She has maintained her deepest friendships, dated and is engaged (to be married this fall!) She has taken on the role of step-mom to an awesome young man that we all just love.  She has raised Harper, thrown birthday parties, been at every single one, answered every one of my phone calls, replies to every single repetitive text...
Even the hard ones, too.  The really hard ones.
And she has not only maintained an A but will graduate with honors.  
2 summers ago, my baby took her last breath while laying on my chest.  
My eyes met hers at about 5:22 am, and I really did feel peace. 
"We did it," I remember thinking.
"We let her be with Jesus."

So much of it is a blur.  So much of it is a disgusting and really hard mess of memories in my mind.  
But all I have ever needed to know is that she is near.  
That all of them, my village, are near.  
And they have always been. 
I have woken up on July 16th (the day my baby was born) for two years in a row to her sitting in the white rocking chair on my porch just waiting for me so that I don't have to spend the day alone.  I have cried hard, wet, fast tears into her arms countless times.  I have wept and snotted into her hair shamelessly far more often than I'd like to admit.  

I have also laughed with her at our children, cooked dinner with her, talked through the hard things with her over and over again.  And despite what she has going on, no matter how much school work or studying she may have to do, she listens.  Every time. 
Even though she's heard it all one million...
She listens every time. 
I have watched her live life with such a determination and also an ease.  I have watched her fight and study diligently to do her very best.  Not only for Harper and not just because of Mabel, but most definitely because the Lord has a clear calling on her life.  

For Harper?  Yes.  For William?  Yes!  Because of Mabel?  I hope so.  
Forever for and because of God?  Most definitely. 
If I were a patient in any home, floor, or facility-undergoing any surgery, procedure or testing...
I would want this girl to be smiling back at me from over an IV pole.  I would want her hand to rub my shoulder so that I could feel the real peace of Jesus and all the He can be in a human.  I would want HER to nurture me back to health in any way that she felt called or compelled to do. 
If I were her patient....

I have never felt more proud.  
This feels like the most condensed version of the longest and most detailed story of our lives but it's the best I could muster through the tears today.  

Rache,
I love you.  I am proud of you.  I am forever on your side in this life.  You have been my rock when nothing else has felt strong or stable.  You have made me rise up and fight for you and for me and for these kids and for that I am so grateful!  You are beautiful, brave, and so smart.  

Tomorrow is a day just like many others in the way that we have dreamed about it for so long.  We have envisioned what it will look and feel like and from my vantage point, it will all be different than from yours.  From mine, I will see you and all you have endured and I will honor that in my heart for you.  I will whisper quietly, "yes!" as you receive your pin and go on to do the work that only those who are called to can do. 
You are compassionate and kind and giving and gracious and gentle and funny.  You are everything in the world that makes someone a good nurse.  I pray only that Mabel would be a light to your heart as you go about your day to day, and that through you the story of her life will continue to be told.  I know that because of you, others will know her and because of that, she will forever go on and be with you in all you do.  

You are the best friend.  The best mom.  The best wife.  
You deserve this in every way.  
Congratulations, friend.  
I love you.

Saturday, May 6, 2017

Diagnosed.

Before you read this update, please read THIS POST so you'll better understand all I've been going through in the last several months.
--- 

In the last 6 months I have seen more specialists than my terminally ill daughter saw in her entire life.  What I have found to be most frustrating in this entire medical journey of my own has been this one fact:
When your child dies...
...to the medical world, any single symptom automatically mean that you are in depression. 
Even if you can pinpoint an exact time or day when your body suddenly felt different, even if your symptoms were not present until that time, even if you say defensively,
"With all due respect, I know what depression feels like and THIS is not that."

I am SO pro-medication.  I am SO pro-self help.  I am SO FOR self advocating if, in fact, you are in depression.  I also happen to be SO stupidly educated and well researched in the world of medicine that I am sometimes seriously angry that I, myself, do not hold a PhD.
I am aware that depression can sometimes show up physically, that it can present with nothing more than pain.  I am aware that it doesn't always mean someone is saying they are totally sad and downright miserable; that sometimes, someone just sleeps a little more than usual and that can be a pretty clear indicator. 

But (and physicians, please HEAR me), when a patient who is young, athletic, likes to eat well, does yoga, gets massages, takes vitamins, drinks water, walks or runs 4 miles a day, and SAYS TO YOU THAT DESPITE HER DAUGHTER DYING, SHE REALLY DOES LOVE HER LIFE....
she is likely NOT depressed. 
In my case, at least, I am not. 

And in the spirit of all things coming together in the exact way that they should (as always), my last specialized appointment was just a few days ago-the day before my actual diagnosis-
with a physiatrist who confirmed it. 
---
The next day, I was driving an hour away, following 3 school buses full of kids to join Braden on his end-of-the-year field trip when my phone rang and I could see that it was Dr. S (Mabel's geneticist).  Driving is hard for me lately.  My vision has changed and trying to focus on the road for a long period of time typically causes me to have a headache so I always have to prepare for that.  It's stressful, too, because I'm really tired and usually in quite a bit of pain in one part of my body or another. 

I answered the call. 
Dr. S's nurse, Michelle, spoke quietly but clearly telling me that they received the results from my full genome sequence and that Dr. would like to speak to me.  Was now a good time?  I told her I was driving but that yes, I wanted to speak to him. 

He got right on the phone and explained that the lab sent the report back with one (and only one) specific mutation that matched the symptoms that I had given them.  That, my exact mutation fell on the ATP1a2 gene, has never been seen before, but that the clinical picture matches very closely to all I've been describing.  It is a rare, neurological disease only seen in .003% of the population
(made even more rare in me because again, my mutation is the first to be recorded.)
 It is dominant and familial, meaning that not only am I affected by the gene but I also carry it (meaning that there is a chance that the kids could be affected also) and that it likely came from someone before me.  And someone before them. 

I was driving and couldn't focus and asked if I could call him back later. 
"Of course," he said and just exactly like I did the day he called to give me Mabel's diagnosis, I ended up calling him back two separate times.  Each time he had done a little more research since we talked a few hours before, and so had I.  Each time I had more questions than I did a few hours before and he had *some* insight.  Each time he answered and spoke to me clearly, with patience and not hurried. Not ever. 
He is still my hero. 

"Ramee, this defect lies on a huge gene.  It is associated with 'familial hemiplegic migraine' but the name itself is so deceiving.  This is NOT a headache syndrome.  There is a huge spectrum of ways that people are affected and what I see in some of my reading is that in adults, this can very much present like MS.  It can affect anyone, at any age.  This is very episodic and not progressive, meaning that usually something triggers an episode and then there is a deregulation of the normal sodium channel process, causing there to be a breakdown in other areas of the body as well.  Your type is associated with nystagmus, seizures and strokes."

He went on to say that he has only ever seen 2 cases of this.  Both were very young children and both were severely affected.  "In fact, thinking of it now, both had many of Mabel's characteristics," he said.  I thought he may. 

The truth is, Dr. S was never full convinced that NCL was Mabel's only diagnosis.  Even looking back on his plan of care for her future visits, I noticed that he had an entire list of genes that he still wanted tested for other things.  The truth is, the markers for NCL showed up in Mabel's blood but we tested every known gene and just couldn't find one affected.  And though we didn't do a full genome sequence on her, mine didn't show any sign of NCL either.  Typically (though we know Science doesn't always follow any sort of 'typical') both parents would have to be carriers of the exact same faulty gene for a child to have batten disease.  In our case, we just don't know. 

Because he was her geneticist and he never felt closure with her case, I think Dr. S was pleased with the results of my sequence.  I think it gave him a little more insight to what could have contributed to Mabel's disease being so severe.  Will we ever know for sure?...

So my next question for him was obviously, "Oh my God!  So do the kids need tested?"
And his response was a resounding, "yes."

So on Tuesday, they will be. 
And if Nora and Braden have this same defect and therefore have this same neurological disease then could we re-test Mabel's blood to see if she did too?  Yes. 
That's a possibility.  We have one tube of her blood stored for research purposes, but one tube only.  Neither Dr. S nor myself want to use it unless we know it is for a really good reason. 

Does it really matter, you may be asking. 
Honestly, for me, it doesn't.  I'm not questioning one thing.  My baby was so very sick that at some point, despite the reason, I just gave in to the knowing that she would absolutely be better with Jesus than here. 

But for Nora and Braden? 
One day it may matter to know if this is a gene that caused or even contributed to their sister being so very sick; one day when they have to make decisions about children of their own. 
They may have the mutation and therefore the disease or they may only be a carrier, or they may not at all.  In about 2 weeks time we should know for sure. 
---
So what does this mean for me?
It means that almost all of my symptoms are not only real but very chronic and even considered severe.  It means that I have to find a neurologist who has seen this, in some form, who will be willing to invest time and money into research for my exact genetic mutation and in the meantime will be willing to treat me.  It means that I have to try really hard to avoid any episode that could increase metabolic stress in my body.  It means that I should avoid getting a fever, or treat it quickly if I do.  It means I should avoid certain medications and procedures.  It means that I should spend some time connecting with other patients who have a similar diagnosis.  It means that I will have to further advocate for myself.  It means that I will potentially be on a lot of meds for my entire life. It means that I will finally finish my advanced directives and develop a plan of care for myself in case something serious actually does happen. 
But it also means that I have an answer. And maybe not to everything, but to a lot of things, which is honestly just such a huge relief. 
---
My Nanny died at the age of almost 63 from, what they believed to be a stroke.  However, she suffered her entire life with neurological issues and a lot of the times those symptoms were blown off by the medical community and even her close friends and loved ones because she was 'pill seeking' or 'drug abusing.'  And perhaps she was doing that.  But perhaps, I have learned through experience, she was in a lot of physical pain and no one could figure out why.  Perhaps her head rolled around on her shoulders, not because of an overdose but because neurologically she had a disease that is so rare no one would have known about anyway.  Perhaps some of the answers to the questions about the symptoms that my mom has developed are hidden deep in our DNA and I just unlocked the code. 
Maybe not for a cure.  But absolutely for validation.   
---
I understand that not every single person is going to have a genetic disease, syndrome or disorder or that they can even be tested for one.  I understand that not every person who complains of fatigue and muscle weakness and vision loss is going to have something serious be the cause.  But I also knew deep, deep down inside of myself that I did.  That something was NOT right and that they would find something. 

I had a few great doctors, nurses and NP's who, without a doubt, believed me and advocated for me.  They ordered test after test for me, listened to me, checked on me and made me feel incredibly lucky to know them and have them on my team.  I just wish that the other handful of doctors would have listened just a few minutes longer, made their minds stretch a little deeper.
Could they have known what I now know?
No.
  But they could have said,
"I believe your pain is real even though I see no clear evidence.  I believe your fatigue is real and I won't overlook it.  I believe that when you say you are cold to the bone you mean it and you are suffering.  I will keep trying to find ways to help.  I believe your vision has changed and you are right, it is so concerning.  I will be with you every step of the way and we won't stop until we find answers."

When I said to them, "I have had headaches my entire life but last summer I had a migraine that lasted for 7 days and would not go away and my body has NOT been the same since.  In the winter, I had to stop working at a job that I loved because I could no longer stand for 7 hours; the pain was so intense and my vision changed so it was suddenly harder to see.  During this time I also experienced a headache with dizziness and vision changes that was different than any other headache...I spent two days in the ER" I just wish that they would have said, "this sounds terrible.  I'm so sorry.  let's try hard to help you however we can," instead of, "I still just think you're depressed."

---
So although I still cannot walk into a Dr's office and say "I was diagnosed with MS," something that they may understand, I can say "I was recently diagnosed with a rare neurological disease.  Here, let me tell you about it..." 
I can show them the research that my amazing geneticist has gathered, along with the other researchers he has already involved.  I can show them what other patients are saying.  I can try really hard to be patient while they take the time to listen and learn, if only they will. 

My God, I hope they will.
---
[This is somewhat hard to read as I transferred it from my phone but here are just some of the ways that someone can be impacted by HM disease.]


After receiving my phone call, I reached out to a support group that I found and asked them a few questions.  This was the kind response which made me feel so validated yet again which is just so crucial. 






For those of you who have been praying for me and thinking about me in the last several months, thank you.  To those of you who have said to me that you believe there is more is happening because you saw my grandma suffer and knew that something just wasn't quite right, thank you.  For those of you who love me have been worried about me, not knowing how to help but wanting to-thank you.  I am grateful for you.  We can learn more together. 
In fact, I know we will...

Friday, April 14, 2017

Restoring A Mother's Heart Retreat 2017

One week ago today I packed a suitcase and I got in the car and I began to drive.  I was all alone making the 3 hour trip to Geneva, WI where I would soon meet other mother's who had cared for and lost their precious children. 
Mother's like me. 
I was grateful to have found the retreat through a friend on Instagram.  Social media is brilliant in that way, though it can be hard in so many others.  I saw information about this retreat just 3 hours away from home and felt the nudge in my spirit to just go. 

The retreat was created by Jessica Lindberg, founder of the Ethan Lindberg Foundation.  Jessica and I have been friends through social media for a little over a year, when we both wrote out our stories for the On Coming Alive Project, created by Lexi Behrndt, who I have also been friends with (even through text!) for a little over a year.  Lexi would be speaking at this retreat and we would finally get a chance to meet in person and share our stories, and hearts.  Also to be speaking was another 'friend' from the coming alive project, Tom Zuba.  I had read Tom's story a year ago and was astounded at the amount of wisdom he had gained in his grief journey through the years.  I couldn't wait to hear him speak; to really listen to all that his heart may have to offer mine.      

So the decision to go was actually really easy.  My heart said to just go, and I really listened. 
After this winter, it needed a little restoring, no doubt.  For the first time probably ever I didn't hesitate before signing up.  The kids would be ok, I would think about and make arrangements for them later, and Chris was completely on board (as always). 

It literally took no time on Friday for all of us to settle in.  It felt as though every mom who was with me that day was absolutely meant to be there.  That they craved exactly what I craved: companionship with someone, anyone like them.   

It's so hard to explain and such a fine line to try to because I always want the people around me to know how deeply grateful I am for their support and love.  But the truth is, now more than ever, from day to day, I feel so very alone in this monstrosity of mama grief.  I just needed so badly to look into the faces of other mother's who carry the same weight, the same anguish, the same questions around with them from day to day.  I wanted to learn from them, observe them, listen closely to them, validate them and even speak life into them, from my very own heart. 
And immediately on Friday, I knew I had made the best decision for myself when I signed up to go to this retreat. 

Everything was so beautiful, immediately it felt like not only had I taken a weekend to really focus on myself (my heart, mind, spirit) but I was being given this awesome opportunity to spend 3 days with Mabel.  Just she and I.  I had her photo and was asked to really look at it.  Her name was written and typed in so many places that it was breathtaking.  Life moves on around us so quickly and so ordinarily that often, we don't make the time to just look at their faces or write out their name.  To see the delicacy and thought behind the sweet details of this retreat created for she and I (and these other mama's and their babes) was truly humbling. 

The retreat is so crucial for mom's like us. 
We are a different breed.
What I mean by that is, the complexity of our grief is not wrapped up solely in the loss of our child.  This retreat focused on the mom's who have had medically fragile, terminally ill, very sick children.  Over the weekend we shared bits and pieces of our stories with one another out loud.  We spoke about the decisions we made, the ones that were made for us, the heartbreak of knowing if it was right or how it could have been different.  We talked openly about what we believe:
Is there a God?  If so, where is He and why did He allow this to happen?
Where is Heaven?  Is my child there?  Is my child still near me?
What now?

We journaled and we painted and we laughed and we cried and we really listened. 
We were teachers and we were students...to one another. 

What happened in the rooms over the weekend was really so sacred that it feels unfair to type it here.  It was an experience, though, that none of us will ever forget.  The respect I have for these moms is unmatched and it was an honor to share my time with them.  And if I had the choice, I wouldn't have left just yet.  I will forever crave the raw, gritty, truth that we spoke; our words unhinged as we were given the freedom and space to really just be. 


When Sunday came there was definitely an apprehensive presence about us.  Leaving that safe space and coming home to the rest of the world was the weekend's biggest challenge, even after all the intense grief work we did.  And that's a perfect way to describe it.  Grieving people who are given an opportunity to be secluded from the world for a couple of days do a lot of internal work. 
Grieving people who are left alone for any amount of time are doing a lot of internal, emotional work, actually.

That's what this grief business is:  work. 

I've been writing here and talking about grief for so long now (literally almost 7 years.)  I walked away from the weekend realizing that I am ok.

I am still very much grieving and it is incredibly lonely and sad and hard at times but I am doing it with such a fervency and intention (as I always have) and that is really the only true way to do it. 
And it is ok.  In fact, it's necessary.  And healthy.  And life changing, totally altering, stretching and profound. 

Tom said it best and almost immediately:
"Grief has been my greatest teacher."

And it has also been mine. 
Do you remember all the posts I have written about my friend, grief?  The entity that it became in me?  How grief is a constant companion and I don't so much hate him like I once did?  He's been residing in me for so long now and will forever take up occupancy in my heart.  And I am ok with that.  It no longer makes me feel helpless or uncomfortable.  I just ride the wave of grief right with him and allow him to mold and shape me how he will. 
And I know I'm a better human because of it. 
In fact, I find myself grateful for it. 
---
The life changing thing about this weekend, for me, was the invitation to allow myself (inside of the grief) to really take care of me.  To continue my relationship with Mabel in a way that is boundless and healthy and free. 
 
"I never knew really what grief looked like.  We're very good at hiding it, compartmentalizing it, experiencing it in private, mostly.  You are, of course, allowed to actively grieve during a wake, a funeral, a burial; perhaps you can keen over your husband's dead body, post a few sad status updates, write a blog post, but did you know that grief isn't just crying? That grief isn't just a facial expression or a physical act?  Did you know the grieving person can do a lot of things like: laugh, and go to movies and grocery shop and raise a child all while bleeding to death internally?  Well, now you know...so you wont be surprised when it happens to you...

That grief; that sneaky, stalker-y, internal bleeding kind of grief cant be posted to Instagram.  It can't be performed on cue when you run into former friends who have evaporated from your life, or acquaintances you recognize from the Internet.  People are always telling me how much they appreciated my honesty and transparency and I would think, "whyyy?' 
Not because I was lying about anything but because even if I were made of Saran Wrap and glass, there's no way you can see this part....

Grief was my constant companion and I didn't totally hate it either.  And I still don't.  It's a bruise I get to push, a pain that reminds me that what I had and what I lost is real.  It's the price I paid for loving deeply and for letting myself be loved.  It's the evidence that [she] was here and that [she's] really gone. 

Falling in love didn't take my grief away, and it didn't diminish it at all.  My grief just scooted over a little bit to make room for...[joy].  Happiness...Love... is so much easier to demonstrate than grief.  They're so much easier to see.  And something about that made me really uncomfortable.  Maybe I was afraid of the judgment of others, but mostly I think I feared my own judgment.
That if I was happy, I must not be sad anymore.  That if I wasn't sad anymore, I must not have loved her.  That I didn't actually deserve to be happy again."
--Nora McInerny, from her podcast, 'terrible, thanks for asking.'
*[some words changed to make sense in my heart.]

In this podcast Nora goes on to say that her new love (for me, happiness or joy) didn't replace her old (grief, sadness, Mabel).  There was space enough for it all.  We don't have to be stingy with our grief OR our happiness.  There's enough of it all to squeeze right into that space of our heart. 

And there is. 
The struggle for me now is that it has almost been 2 years without my darling daughter. 
And I really, truly do look (and mostly am) happy. 
And sometimes that is super conflicting and strange. 
The magnitude of joy and the magnitude of the sorrow are so intense at times, it feels impossible to reckon it all inside of me.  Like my heart will explode from all of the feelings that push tight on the edges. 

But it hasn't.  And it won't.  And for my entire life, I will have to embrace the dance that this is in me. 
The mothers I met last weekend all had so many things in common.  But the one thing that resonated most with me, aside from their strength and courage, was their incredible ability to be vulnerable, and open.  And the reality is, their grace and beauty shined so brightly that they impacted my life forever. 

And not just them but their children as well. 
Their tenacity and light showed us all how to really love. 
"How to never take a day for granted; not even a minute."
When you have experienced that kind of love, and are in a room full of women who have too, it's like this secret club that finally feels like it's worth your membership. 
I spent an entire weekend with mother's whose hearts are shattered and breaking as they simultaneously laughed and told inappropriate stories.  

It is true, the world cannot see our broken insides.   
It's so much easier to see a group of women at a table laughing over dinner while sharing stories of their dead children than it is to see that every word settles deep in our bones and tears us apart.
Though, it doesn't destroy us.  In fact, it makes us better. 
We are an elite breed of humans. 
The fighting kind. 
The passionate kind.
The giving kind.
The listening kind.
 The learning kind.
The growing kind.
The generous kind.
The 'my child died but I want to LIVE' kind.
I left on Sunday, having met these women just 2 days before, and feeling like I had known them my entire life.  You do not share this kind of time, intimacy and love with anyone and NOT leave changed.  Forever, I will be grateful for the weekend that I got to tuck myself away and hug my daughter's memory tight without the distractions of the real world.  I will forever be grateful that I listened to my own heart and headed toward healing; an ongoing journey that has no real end. 

We want to live. 
And we will go on to do so.
It's a beautiful thing to experience, to witness and to be a part of. 
It was truly my honor. 
---
To find out more about the 'Restoring a Mother's Heart' retreat, please visit:
www.ethanlindberg.com/retreat

Currently they are being offered twice a year (April & November).  If you are reading this and feel your heart saying to just go, you really must. 
I promise, you will leave changed.