Thursday, June 15, 2017

It really is all in our genes.

My firstborn, cherished daughter. 
I dreamt about her and prayed over her and she has always been my greatest dream come true. 
She created in me a new heart, a new mind.  She helped foster in me the fierce, courageous, bold, energetic, lighthearted, intense, funny, protective, strong, capable spirit that has made me into the woman I was created to be.
A mother. 
She gave me the gift of being a mother. 
Nora and I only had 13 months together before her brother was born.  Half of those months were spent alone; just she and I, because her dad was deployed at the time.  Since that time in our lives, though, we haven't had a sacred space of time to carve out for just us.  Like every family, we have just clung together and moved forward.  She had a brother, and then a sister, and then Aunt Rachel and Harper moved in, and people were constantly in our big white house-therapists, nurses, friends. 
Admittedly, I shared life with anyone and everyone...and although that was perfect for a time and I feel incredibly grateful for that season, it is nice to see how life has shifted and we've now moved into a life that is much more quiet, much more private, much more structured and controlled.
Just as Nora likes it. 
My Nora. 
What can I say?
She is gifted and always has been.  She began walking at just 8 months of age, has always been quick as a whip, is beautiful inside and out, has found a sport she loves and is good at, fights with her brother like it's her actual job, loves ALL people and wants to help, accepts change and adapts to it with a heartbreaking and unwavering spirit, has endured the loss of her sister and managed to still receive the gold presidential award (4.0 gpa for the entire year), loves animals, wants to be 15, adores ice cream, snapchat and vacations in Michigan.
Nora is inquisitive and wise beyond her years.  She likes to write out her feelings rather than talk about them but she wants to have all the information that she can have about a situation in order to fully process it. 
Years ago I made a silent promise to myself, for both of the kids, but especially Nora, that I would always be fully honest with them in every circumstance.  I will present them with the facts of a situation in the way that they can handle them at their appropriate ages.  In doing so, I will hopefully create a trust between us that will last forever.  Currently, we talk about more hard things than I believe most parents do with children their age, but I have to remind myself that they have endured more hard things than most other children.  Thankfully the act of comparison has lost it's grip on me because my mothering will never, ever look the same as someone else's. 

Nora is relatively healthy. 
She did realize not long ago that she can shake her eyes like I do.  At first I thought that it was really funny and quite charming that she was so determined to teach herself something that I couldn't control. 

It turns out, I'm not sure that she can either. 
---
Over the last year Nora started having headaches.  Many a week.  But, so did I as a kid so I chalked it up to that, gave her Tylenol and made her rest. 

Nora also has terrible joint pain.  She complains of her legs or her shoulders hurting probably once a week (if not more).  Growing pains, I thought. 
Tylenol and rest.   

Actually, Nora does a lot of 'resting.'  She's strangely tired for a child her age.  Again, we chalked it up to pre-puberty, her personality, grief, etc.  And it could absolutely still be a combination of all of those things for sure. 

When I tuck Nora into bed at night, her body jerks.  Not just a couple of times like a sleep-start jerk but for as long as I lay with her (sometimes up to an hour) and even throughout her sleep.  Again, I overlooked this because 'some people just jerk in their sleep' was my thinking. 
But her brother doesn't and it turns out...most people actually don't. 

||||

Last week we received the results of the kids' test results for the ATP1a2 disease gene that I carry.
Braden does not have the mutation.
Nora does. 
---
I know the answers were coming but even still...it was shocking. 
I needed time to process my own thoughts before I decided to tell her. Mostly I don't want her to be afraid, even though it can be kind of scary.  Chris reminded me that although I have had it all along, I carried out a healthy childhood.  I played sports, I went to dances, had boyfriends, had healthy pregnancies, labors and deliveries....
And he's completely right. 

But then... I had two really healthy babies and one really unhealthy one. 
Which is where the sadness FOR Nora creeps in.  I suppose it doesn't change too much for her when it comes to thinking about her future or planning a family.  I mean she already had a very sick sister so her choices may have looked different anyway.  But, when we get Mabel's results, if it shows that she too carried this gene; a gene that was likely paired with specific markers in the blood that contained NCL, I'm not sure if the risk will be worth the benefit of having children for Nora. 
And in my heart I grieve that for her a little.

I am going to insert here, though, that even if I had been this information years ago, I would have still made the choice to have children.  The truth is, Mabel's life was perfect. It was just how it was intended to be.  I don't think that it makes me or any other parent selfish for possibly bringing a sick child into the world.  I suppose it is all about our perspective about what 'sick' really means.  Would I have chosen to have Mabel knowing she was going to suffer the way that she did?  I'm not sure.  But God chose to gift her to me and for that, I am incredibly grateful.  Some of it is out of our control anyway and that, in and of itself, is so freeing. 

I don't ever want Nora to make choices based on the 'what ifs' of life because in total truth, we all have a million what ifs hanging around that we choose to ignore every day.  If we scooped them out of the dust that we've buried them under we would be consumed by utter fear and that is such an unfair and horrible way to live. 
---

So this week Nora played ball in the 95 degree heat two nights in a row.  Both nights she complained of an awful headache, felt dizzy, looked flush and without even knowing it, I noticed her eyes were shaking.
The second night she sat out at the beginning of the game because she was so nauseous and told me she felt like she may pass out.  She also told me that she felt so weak, her right arm could hardly lift her Gatorade.  When she did feel better, after the 2nd inning, I encouraged her to go in and to play with her team.  She did and I felt proud.  I have information about her body that is vital but I have information about childhood that is too, and I want hers to be as normal as possible. 

When we got home that night, though, I knew I had to tell her the test results and this is why:
First of all, she sat in the office with Dr. Schneider while he talked to me about what ATP1a2 looks like and means.  She understands and is not na├»ve like her brother still really is.  She knew the results would be coming anytime. 

Although she is going to have normal headaches, growing pains, belly aches, etc, I now feel like we have been given a serious gift for her life.  A gift that most ordinary people do not ever receive.  In a sense we were given this gift of knowledge because her sister was so very sick.  We literally have been handed a roadmap to her health and I won't take that for granted and carry on in ignorance.

The mutation in this gene is responsible for many things that may ail her in life.  And though there isn't a whole lot we can do about that just yet (super rare, no funding, no research, no treatments, no cure...sound familiar?) one day there may be.  I think it's really important that she has at least an idea of what symptoms could mean something and what symptoms could be nothing.  Of what she should look for, expect, be aware of.

So I explained to her exactly what is going on with me and how I've been 'affected.'
And then I explained that I was really very healthy except for my eyes shaking and some headaches until this last year.  And then I explained that her headaches the last few days could easily just be headaches from the heat but that she has to be really good about telling me when she doesn't feel quite right so that I can continue to take really good care of her and watch her closely.  She told me 'that I always took the best care of Mabel so this must just be what I'm meant to do; watch my children closely and take good care of them.'

I want her to be equipped with information so that as she grows she can help inform others of what may be happening with her.  And so that she might be less afraid.  For me, knowledge has always made me feel a little more powerful.  It helps me feel educated and for my personality type this is really critical.
  Nora is very similar to me in that way and she seemed grateful to know.  She asked if I would write everything out for her so she could keep it with her.  She also asked if I would be finding the very best doctors in the country, "since it's so rare and we need help finding answers!"
I just smiled.
She is mine, after all.
---
So just to recap, the ATP1a2 gene is responsible for the exchange of sodium and potassium through our cells  This affects everything in our bodies.  When there is a disruption or a deregulation of the normal process, this is known to cause symptoms that can mimic MS but has also been linked to seizures, strokes, comas, partial paralysis, autonomic changes, dyspnea (breathing abnormalities), sever mental impairment with epilepsy, diverse neurological impairments of movement, hearing and vision changes. 

This gene is inherited and is dominant.  The kids each had a 50/50% chance of having it.  Nora will have a 50/50% chance of passing it to her own children. 

This disease is extremely rare.  The record of known variants makes up about .006% of the population but our variant has never been seen before, therefore research on it has never been conducted or documented.  Currently I am in contact with researchers all over the world, most recently waiting on a reply email from a lab in the Netherlands.  Our next step moving forward will be to have my mom's blood drawn to confirm whether the mutation was caused from the maternal side of my family or not.  Also, we will soon receive results from Mabel's DNA.  Essentially our family will help write the research for this exact mutation and hopefully help others in the future by showing the varying symptoms and progressions associated with this gene.  Likely we will also prove that several members of a family can have the same mutation but can all present very differently. 

So far research that has been done on other mutations that lie on the same gene indicates that this disease is episodic and not progressive.  This simply means that an individual may have an episode (caused by metabolic stress-a fever, a migraine, extreme heat, sickness, environment, infection, etc) that causes a decline in the body.  Sometimes this is irreversible and has shown to leave people in comas or with permanent neurological deficits.  Sometimes this is simply something that the body can't fully recover from so symptoms are more vague; often leaving patients undiagnosed and frustrated for years. 

So, for now, we don't know much. 
We know there are certain medications that Nora and I should avoid taking.  We know that we should try hard to avoid anything that will cause metabolic stress to our bodies.  We know that if she gets sick or gets a fever that we need to handle it quickly.  We know of some vitamins that others have taken that seem to help them.  We know that a healthy diet is important along with staying hydrated.  Skipping meals is just not an option.  We know that we need plenty of rest; sometimes more than the average person may require. 

And though that seems pretty basic, it's really quite helpful for me as a parent.  I know my own limitations.  I know, looking back, when I pushed them as a kid or even a teenager...and even still as an adult.  I feel like I can gauge Nora's limits a little better because of that and so I'm grateful.

...And I'm sad and still overwhelmed. 
We never really know what the future holds for our children but I've literally given everything up to God at every turn anyway.  So I am not afraid.
Rather, I am thankful for the wealth of knowledge that Mabel's life led me to.  I feel like because of my baby who is no longer here, I am far better equipped to take care of my children who still are. 
And that is a huge and incredible gift that I will NEVER take for granted and that I never want them to either. 

Thank you to all of you who have continually asked about my health, these results, how you can help, and for praying.  There is no real solution and there is no real guarantee that there will be great progress with my health.  It's extremely frustrating and isolating especially because my desire is to be active and healthy with my family.  What I'm learning to do is really embrace the good days and really give into the bad days, helping myself how I can.

For now, the plan is to do the exact same thing with Nora and keep our fingers crossed that she remains healthy. 
Please, if you have questions, don't be afraid to ask.  I'm grateful for such caring and compassion. 
---
So school ended and we once again started summer with some pretty heavy news that we needed to process.  But we are really enjoying our days together; sleeping in, swimming and softball.  In just a few short weeks we will head to Michigan for our annual family vacation and very soon we will be welcoming baby August (my first nephew!) into our family.  With so many beautiful things surrounding my days it is hard for me to stay focused on all of the hard and heavy stuff that I could  easily let consume me.  Instead, I try hard to remember that 'it just is what it is,' and we must always...just...keep...going...

Saturday, May 27, 2017

Dear Kids, {2 years in Heaven.}

To all of the little people who I love so much...
...who are watching and waiting and listening for the right words to fill the empty spot so deep in your tummy on this day...

Some of you have asked me, "but why did God need Mabel back so soon?"
And I want you to know that God didn't NEED her back so soon.  He didn't NEED her back at all.
God doesn't NEED anyone.  
He is God, after all.  

He stands alone.  He can work alone.  He created the earth, and the animals and even us with absolutely no help--all alone!
He is God; King and ruler of ALL things and He most certainly doesn't need us to help Him along.  
Guys, all throughout your life there will be people who will say things like this to you because they are uncomfortable or maybe they don't know exactly what else to say in a situation like ours...
a situation where a baby never stopped being a baby, suffered through her entire childhood and eventually died.
But those people are wrong.  They are speaking in platitudes.  And mostly, those hold no truth.
 Not in my spirit.  Not biblically.
People say them because they feel there is moral weight behind a couple of words and that they may bring you comfort. 
But that's it.
 Here's what I believe and what I feel deep in my heart to be true...
[Please know, one day when you are older you will form your own opinions on what YOU think to be true based on what makes you feel peace and what brings you comfort.  You will do research and attend church and hear speakers and watch the world and observe all sorts of different practices and beliefs and based on all of that--you will come to a conclusion that makes you feel physically well and you will know that THAT is what you believe to be right.  And I will listen and support you in that, no matter what.]
....What I believe to be true is this:
Mabel Audrine Larson came to this earth, created by a good God to live the exact life that she lived...
  For the exact amount of time, in the exact perfect way.  
She did exactly what she was created to do.  She lived her life entirely from beginning to end.  
And she died.  

Because people do. 
They die.


But some will tell you that she was taken too soon.  Or that Heaven needed another angel.  Or that God needed her back.  Or that God will never give you more than you can handle. 
And frankly, that just isn't so.  
Who are we to say when a life has ended to soon?  Heaven, I know, is functioning just fine without any angels let alone another; the person we love.  And especially our girl-what great work is she going to do other than smile, tap and look beautiful in a pretty white bouncy seat at the throne?  I mean honestly.  And why in the world would God need her back?  He created her and sent her to earth and I don't think He said "on May 29th, 2015 I'm gonna need her back!  She has chores to do here!"  And as for the last one, despite what the religious zealots think:
every single thing that happens on this earth does not necessarily all happen because of God.
I want you to hear me here and not misunderstand what I'm saying.  Can purpose be found in everything that happens?  Yes.  But is there a reason for everything?  Not necessarily.  Because we live on earth and it's just called life and some times some things just happen.  



The last thing I want is for any of you to go through life thinking that every little bad thing that has gone on was handed to you by God himself because he thought you could handle it and you'll become stronger and better because of it.  Will you?  Likely.  Is He there with you in it and through it?  Yes!  But let life just be life and don't overthink it all and let it become this obsession that God is the doer and giver of ALLLLLL things.
Sometimes the worker at McDonald's is going to give you the wrong order of food, guys, and that's not because of God.  That's because they're human and this is life.
Do you get it?
  God doesn't make our pets sick 'because he knows we can handle it."
God doesn't let us be bullied on the playground "because he wants us to choose the higher path."
God doesn't DO these sort of things.  He is in them.  He is watching.  The Bible promises that He never leaves us.  But He is not a puppeteer in the sky just dangling strings over our lives and watching as we screw up, hit rock bottom, fight depression and sadness and sit around doing nothing but questioning Him.

I believe God can use ALL of these things, even a messed up order at McDonald's (if He so chooses) to draw us closer to Him, though.  I absolutely know that to be true.  


Kids,
God sent Jesus so that we didn't have to sit around and worry about these things or believe really stupid one liners about life and death.  We have it so easy with a Savior who loves us, sees us, forgives us, cares for us, meets us and wants to be unified with us every day.  The Bible says that Jesus is the author and finisher of our faith.  That means that he has helped write a story that already came to completion when he died on the cross for us.  We don't have to suffer or endure anything in this world to WORK toward Heaven.  We simply have to live!  We only need to believe that Jesus died for us and choose to know that we will live with Him one day in Heaven.
And if we just do that, we will!
Easy peasy. 


God didn't make Mabel sick to test us or to watch how we would endure her suffering in order to know if we would be good enough to enter Heaven one day.  He made Mabel perfectly!  He created her in the image of Himself (it's in the book of Genesis) and in that I find such peace.
What does that tell us?
Well it tells me that she was indeed perfect.  She wasn't created faulty.  Her disease and sickness were not a mistake.  She was exactly and uniquely who she was supposed to be on this earth.  So if she died on May 29th, 2015, it is because that is when her life was fulfilled and complete and for no other reason than that!  She did all she was meant to do and lived SUCH a full life here.


 Can you comprehend that?  Maybe not yet.  But one day I hope that you do.
Because you are going to experience a lot of death in the years to come.  You are going to have friends and pets and grandparents and aunts or uncles or parents or siblings who die.
Because we all do.
We are humans and that means that one day we have to die.

And I just want you to remember that it's ok.
It hurts and it's awful and after the people we love die we are forever changed and that is haunting and painful and sickening and sometimes feels like the worst thing in the entire world.
But I believe the worst thing in the entire world is to NOT know these deep lessons.  To spend our days searching for platitudes that might fill a powerful void instead of knowing truth and depth and fullness of joy.
And to never feel true peace about life, love, or death.
That's far more sad, don't you agree?

What you had with Mabel...what we all had...was this rich and incredible love affair with someone on earth who was made just a little different than most of us are.
We got this awesome opportunity to fall in love with her spirit and not her voice or her words or even her actions.  We fell in love with the Heavenly side of a human!
WE WERE GIVEN THE CHANCE TO DO THAT BY A GOD WHO LOVES US SO SO MUCH!
And that is a great honor because most people will never ever experience what we did.
And you were part of that.  YOU were given that chance.

I believe with my entire heart that God DOES want you to go on and live in such a way that you never forget what it was like to love her.  Or to lose her.  Because even though you are so, so little...you are so, so lucky to be able to know the depth of that kind of love, AND that kind of pain.
When the two go hand in hand inside of your spirit, you can move mountains.
I know, because we have.  We did.

And in this life, I believe you all will all continue to move them!
On this day, I decided to write to you because you are all still here.
You have all been watching me: your mommy, your 'aunt Ramee' to see how I am.  You're listening closely to my voice when I speak or to my cries when I'm sad to know if I'm really, truly ok.  You have been watching me to see if I will survive this; the loss of my baby, and if I will be the same or changed.
But guys, I'm watching you too.  And you are the reason I AM OK.  You are the reason I have and will survive this; the loss of OUR baby.  You are the reason that I am both the same and deeply changed.  Because I looked back on the photos of Mabel's life and all I see are moments of her surrounded by you.  Laughing at you, crying beside you, being held by you, taken care of by you.  You had her in the pool, at the zoo, at every ballgame, in bed, on a quilt, at the lake, on a boat....anywhere and everywhere you were, she was there too.  
{She still is, by the way.}

You loved Mabel so unconditionally.  You were the very greatest!
You have already been equipped with the ONLY tools you need to be a good human in this life, because you loved her so deeply. 


I see her with you in all of these moments and there is no way that I can't recognize that YOU are the strong ones here.  You have survived losing your life-mate and friend; sister and cousin.  You have been changed forever too.  The course of your little lives was changed when Mabel died just two years ago.  Who you were then and who you all are now is different than who you would have been had she not lived and died.  There isn't a day that passes that I don't recognize that. 

You give me such strength and courage.  If YOU can survive it...
If you can wake up and go to school, play sports, earn awards, visit the cemetery, ask deep questions, and wake up to do it all again day after day after day...
then you guys... I can too! 
And I always, always will.
On this day, May 29th...
Please don't ever be too, too sad.  Let's mourn her because we miss her, of course.  Let's always do THAT together.  But let's not ever question if her life was cut short or question what she would be like if she were still here with us.  Let's only know deep down in our souls that our Mabel was not meant to be here any longer than she was.  
She was created for a specific time and purpose on this earth, she was lucky enough to live that out here and then she GOT TO GO TO HEAVEN!!!!
---
Kids...
All of you kids who I love and adore and cherish and feel brave because of...
Thank you.  
For being alive and for being you.  
I love you with my entire heart and I will always help you remember Mabel just as she was, because she was yours as much as she was mine and she was perfect.  I promise to always be here for you and miss her with you.  I promise to help you navigate love, life and loss always.  

I know that some of you feel an ache and a void that nothing in the world will ever mend of fill.  I know that you must feel like you lost her, like you have to wait a lifetime to be with her again...and I know that can be so overwhelming.  I know that some of you are still so, so little and it will be up to me and your mommies and all of us to help you remember her or even to know her at all. 
We will do that!  She isn't missing from you!  She's right here with you.  It's in such a different way, and I know that feels unfair, but just be aware of the life around you and be willing to feel her how she is now. 
Heavenly.  Spiritually.  Eternally.

You are THE best kids I know.  She adored you and she was so lucky to have you.  
Never forget that her days with you were the best days of her life!  Thank you for loving her so perfectly and for helping me know that she was never alone.
I hope when you look in my eyes, you see her and know that you aren't either.
You are never alone.
I love you all.

Mommy, // Aunt Ramee

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.
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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.