Monday, September 1, 2014

Tell Me it Sucks

Maybe I've moved out of the shock phase to the 'it's real' phase... but I'm finally starting to realize that this is happening to me.

I haven't done much looking on line - I honestly just want to focus on my time with my family and not how I might die or how painful it will be getting there....but I'm trying to prepare myself for the conversation with the doctor on Tuesday and I want my questions ready to be answered.

I looked into my aneurysm last night, I got to the Treatment Options and all I find is a list of risks... I read:

blot clots
swelling of the brain

I started crying.  Not just because I'm already at high risk for stroke because of my MTHFR gene mutation, but because all I could picture was what I watched Jay go through and her having her skull cut off for months with one side of her head being way bigger than the other from the swelling and being in a coma for weeks, not able to talk or eat for even longer, and PICU for months, then rehab for longer, and almost dying multiple times.  She still talks to me about the first time I fed her pudding... 9 years old having to learn how to eat pudding again.  I HATE that this happened to her... to my sister... to our family.... and we're approaching the one year anniversary, so memories have already been flooding my mind as it is.

And honestly, the part that really breaks my heart about the possibility of me having my aneurysm rupture is knowing what it feels like to be on the other side of that and I don't want my family to have to watch me endure something like that.  To wait on every phone call fearing I won't make it. Driving hours a day to get to me. Or for them to have to arrange my funeral.  My kids have been through enough.  Matt, my parents, my sister and brother, my grandparents... they've all been through enough already.  It's been a LONG 4 years.

So last night I did all I know how to do when confronted with such overwhelming, heavy feelings... I dropped to my knees and cried out to my God.  I actually fell asleep on my knees, head on my bed.  And I know He is with me - I've been covered with peace in the midst of this all... but there are still those moments in the middle of the day... in the shower... driving down the road... watching my kids play... where I realized the magnitude of what is going on with me.

So tonight, I looked up the syrinx to answer some of Matt's questions and I'm again overwhelmed. While this finding was easy to gloss over at first because it's not a diagnosis I'm familiar with and so it didn't automatically shout "death" to me... I am feeling like this is more of a guarantee, whereas the aneurysm feels like it could possibly not affect me.

Here is a LINK with information about it.  Although this is the first site I have found that suggests that surgery can be successful.  Every other site said that most often the syrinx will recur shortly after surgery. :(

Seriously... what do I do with this?   Please save the 'right' answers.  I already know those... trust God... don't worry... pray... believe He can heal me...  I've got it all down as much as humanly possible and for where I fall short, I know He can cover the distance.  He is good, even when life is hard.  And I firmly believe with everything I am that He has a plan in EVERYTHING.  In Rachel's death - in this diagnosis and whatever will come as a result...

But let's be honest... this is really not good news.  It's not news you would want.  It's not news you would want your child to get.  And there isn't an easy solution and it's not going away on it's own. So be human with me for a minute and admit that this sucks.  I really need that.  Perhaps that sounds unchristian of me... well, tell me it sucks and then pray for me.  And if sucks is a word you aren't willing to use (I'm sorry if I've offended you), just admit to me it isn't something you would want to hear.

I'm so tired of listening to people try to coach me into more positive thinking.  I don't need that. I really do have that down.  I might not tomorrow, but so far, I've really let this news not just rest in God's hands, but actually cause me to live life more fully and to get as close as I can to the only One who can carry the full weight of this on His shoulders.  He taught me how to do that through Rachel.

Listen, it might make perfect sense to someone without a blood clotting disorder and brain aneurysm that 'people get these all the time and they can just operate on them'  or that 'the fluid in my spinal cord can just be removed' - But I didn't go in for an apt with the Neurologist because I had free time.  I went because I was having symptoms that are seriously affecting my quality of life.  Perhaps they are more to do with my autoimmune diseases, but they are real none the less.

And it might make you feel like you are encouraging me to tell me to not think about it or not worry about it. But it just doesn't encourage me.  It makes me feel more alone.  You know why?  Because I am an outward processor... meaning that share what's on my mind to work through it and not everything that comes out of my mouth is something I'm "obsessing" over - yet at least 4 times this week I have been told to not obsess over this when I have tried to talk to someone.  I NEED to be able to talk to people, but the more I do, the less I want to - and then I feel alone... it's a bad cycle.

So this is what I need... and I realize that if people couldn't follow what I asked of them where Rachel was concerned, most likely they won't listen now.  And I know, and I mean *honestly truly believe*, that people who do this do care and are only trying to help me... I know they don't want to make me feel worse... but what I need is for you to all just listen, pray, and admit that this sucks and you wouldn't want to receive this news.  And then instead of picking apart every word I say looking for where I am falling short in my faith that you might be able to fix... do this for me... look for GOD... look for JESUS.... look for the Holy Spirit...  because the one thing I know about what this trial will hold for me is a whole lot of Them.  And it would mean so much to me if it also held a whole lot of love from you.

I don't need to be fixed.  You can't do that.  I release you of the burden to try.   I don't want help figuring out what only God knows.  I just need my family and friends, near and far, to stop minimizing my reality and stay by me as I walk this path before me.  I know it's not out of God's sight, but yeah, I'm scared.  And I promise you, if you stop telling me why I don't need to worry, you will see that God's already got that covered... you will see that I actually *do* have plenty of good days and that I'm really making the most out of a very difficult thing... but you will also clearly see that it's not me doing that within my own ability to think 'right'... you will see that I know my God is bigger than the mountains creating this valley.

And if you can't do that for me... *I* will see that even when I am very alone, He will never leave my side.  Because unlike my journey with Rachel, I do not intend to beg people to be empathetic...I did that with her because in some ways I was protecting her and in other ways I was trying to teach people how to treat others in my shoes... I know, it seemed like it was about me and what I was 'demanding' of others, but it wasn't.

With this, I don't have to protect anyone and don't feel the need to teach anyone how to love someone with a brain aneurysm, a syrinx and autoimmune diseases.  All I would be doing is wasting hard-to-come-by energy that I could be using to enjoy my days with my family and real friends and I will NOT do that.

So, if you are able to let me be me... message me... call me... text me... come on over!  I'll put the coffee on and maybe even show you my best Running Man (for those of you who aren't cool, that's a dance - and one I am good at - or at least I used to be!)  OOH, no, we can do the electric slide... that's a fun one and easier on my knees! LOL.

I'm serious as a brain aneurysm when I say that I intend to make the most out of each day God gives me.  I will dance in this rain.  I will trust Him.  I will lean on Him.  And I will praise Him no matter what comes my way.  In just one week, I have already seen fruit in my life as a result of Him allowing me to walk another hard road.  I see His goodness, I feel His presence.  He is in this.

It's still very real and not likely something that I'm getting out of.  Next to a miraculous healing, which I invite you to pray for, I will face this for the rest of my life...or die a young death.  and when I think about that too long, I get sad.... what about when my kids have kids...I want to be a Nana... and it comes right back...   Bear with me as I ride this rollercoaster of emotions.

This sucks.

Wednesday, August 27, 2014

Goggles On

The last couple of days have been tough.  I have this sense of urgency to really enjoy life and not miss a moment, which is good.  We should all live like that since none of us know the hour we will leave this earth....

However, each moment of blessing is a battle in my mind.... the constant thoughts of feeling like I'm walking around with a ticking time bomb in my head.  I get sharp pains in the location of where he said my lesion and aneurysm are and I pause... I found myself praying "Please Lord if I'm going to fall dead, don't let it happen when my kids are alone and will find me...." 

That kind of thinking is mixed with the thoughts of the fact that this could be something that I just have for years without complications....  

And then to the spinal cord issues every time my speech slurs or my back goes numb.... what if I can't walk... talk... hold my kids....  I already have trouble with all three.  I haven't been able to wear E in my Ergo in a very long time and most of the day I rely on Desirae to hold him when he needs me.  It's no wonder he's my first baby to refuse to stop nursing at a year....  

So yesterday, we ran away for the day to play together.   I feel like I've been watching from the sidelines for much too long.  I want to be more involved in the things they enjoy. I swam with them and floated around with E on a float.  I used goggles for the first time in years (UM, AWESOME!!!) and the kids rated my handstands... Isaiah said I do them 'very straight' and Desirae said I was 'graceful' - OH MY, I need to get in the water more!! haha.  

But at one point I swam down in the deep end and the pressure in my ears was too much... I wondered if it's just a normal thing that happens with age... or if I should even be doing it.  I just don't know and the questions overwhelm me at times.  

This morning I woke up and Pandora pretty much played Rachel song after Rachel song... all songs from those months when she was with me.  For a minute I wondered if Matt was actually playing the CD we gave out at her shower because I think all the songs were on it.  

And wow, are these a lot of the same feelings.... the wanting to celebrate each moment being overshadowed with possible death... the moments of wanting to push through physical pain in order to enjoy time... the trying to protect my kids from what this means for them... the knowing God is absolutely capable of miraculous healing....  but knowing His plan isn't always healing here on earth... 

You might all remember in August 2010, we got Rachel's diagnosis, buried a good friend of ours at 35 years old that next week, lost my uncle Dale to colon cancer a couple weeks later, then buried Matt's stepmom's dad the next week.  It was one thing after another.

Well, on July 28 this year, my birthday, I got news that my Papa was given a few months to live because they found 3 aggressive cancers in him.  And the day after my news, my sister, who has been very sick for a long time with Crohn's disease, was told she has a mass in her intestines.  

It's been another eventful August.

As I was writing this, Ezra came up to me and handed me Isaiah's goggles.  I swooped him up and played with him for a few minutes... he put them on... and then put them to my face.  So I put them on and he gave me a big smile.  It felt so symbolic after all I just said about being present with them and active in the things they enjoy.  It's so easy to say "wait a minute... I'm typing...I'm cooking... I'm talking... I'm reading... I'm (fill in the blank)..."  but I stopped and played and was given a picture to encourage me to keep putting on my goggles while I can.



As we were playing, I pulled the goggles over my head again and broke them.  I told Isaiah, expecting him to be upset and he said "It's okay, I didn't really need those."  And I was so blessed by his grace.  Ezra went and found another pair and we started playing with those instead.  He was like "OK, minor bump in the road, let's get a new pair!"  That's my boy!

When I buy Isaiah new goggles, I think I might get us all a new pair... a reminder to take time to play together... to get in the water and not sit on the sidelines watching... to show grace when someone does something disappointing... to overcome obstacles.... and to remember when we go deep and the pressure builds and it feels like danger is imminent... all we need to do is look up and keep swimming.  There is no body of water, no storm, no brokenness that God is not bigger than still.

I will allow myself the space to feel what I feel, but I'm going to do it with my goggles on.  

Monday, August 25, 2014

Next Trial Up....

I was supposed to get the results of my MRI/MRA on Friday - then both of my doctors were out that day.  I asked if someone else could give them to me and was told they didn't have them yet.  In my gut, I had a feeling it meant there was something my dr was going to need to explain, but had hoped that maybe they just really didn't have them yet.  Well, it looks like it had to do with results....

The good news is I don't have MS, which is what I was thinking I had.

Bad news is I do have a brain aneurysm - he also mentioned a small lesion on my brain and I'm not totally sure what that all means....

They also found a Syrinx (fluid filled cavity) in my Spinal Cord.  The Syrinx explains the numbness in my back and pain in my stomach - they will only operate if I get to the point where I cannot handle the pain since it would be surgery on my spinal cord.  The Neurologist seems to think there could be a connection between that and my MTHFR mutation and this. But no solid evidence on that at this point, just something he came across in research.

He has ordered a CTA to look again at the aneurysm, waiting on a date for that.  He also ordered an EMG nerve conduction study which is scheduled on Sept 23.  Hoping they will move that up.

They will monitor my aneurysm and if it gets bigger, then I guess we'll talk brain surgery too.  I'm obviously not happy with this news. The aneurysm was not on my radar at all, with the exception of I have been saying for years that I felt like Matt was going to have one and leave me here with the kids alone.  Now I'm wondering if I was worrying about the wrong person. :\ Going into my MRI/MRA last week, it wasn't the test that had me worried, but the possible results...  I just knew I was going to be confronted with something I wasn't expecting.... and here I am.... sigh.

I trust God and am thankful that we found this now.  I almost canceled my apt when my headaches went away, so I know He is providing.  I'm glad to have an answer for the stomach cramp and back numbness and feel pretty confident that this Neurologist will, as he told me "get to the bottom of this" and help me find an answer to what the rest of my still unexplained symptoms are.

He is leaning towards them being Neuropathy as a result of my Ankylosing Spondylitis and Psoriatic Arthritis -  and most likely not a lot I can do about them.

I'm really discouraged with my physical health.

Please, I do not want any advice AT ALL, and I mean none. at. all.  I don't want to know what you did or didn't do.  I don't want to know about your friends success or worse, death.  I am going right back to when I got Rachel's diagnosis and I am respectfully asking that you keep your knowledge to yourself and let me lean on God.  It's better for both of us that way, I promise.  (*this rule does not apply to my mom who has a right, as the one who put up with me all my life, to say whatever she wants at whatever time she feels necessary) :)

Just please pray for me.  This is the ONLY reason I am sharing this, because I NEED prayer. God is the only One who can handle this in me physically and especially in me mentally and emotionally.  So please just bring this before His throne on my behalf as often as you think of me.  Pray for complete healing as well as the grace for me to be able to take my thoughts captive so that every twinge doesn't have me worried.

And not to sound dramatic, but I need extra prayer that if this is going to be something that leads me home to Jesus that I will be able to seize the moments with my family between now and then and show them who Jesus is the best I can while I'm here.  It won't happen if I'm consumed with fear and worry.... so please pray specifically for that. (actually I can use that prayer even without all of these new things!) Pray also especially for God's peace in this midst of this uncertainty.

To end on a funny note... I seriously just asked the Neurologist if the fluid in my spinal cord could be from taking entirely way too much LSD in my youth.  I had always heard that acid stayed in your spine forever and I did a LOT of it.... he laughed a little and assured me that isn't the case.... so that's good, it's not my fault.  Ha!

And another trial begins....continues, really....  I can't wait for heaven.....

In the Shade

Tonight is what happens when I wait entirely way too long to blog... you get 3 posts in one night! Ha!

I've said a thousand times that I'm not all too fond of it when people try to find my silver lining for me... silver linings are something you are supposed to find yourself and not for others.  It can be something as small as a 'good' reason that I showed up on the wrong day for an appointment - or something as big as telling me that it's sad and all that Rachel died... "but look at all the people who she has helped!" (add big annoying smile here and you get bonus points for being insensitive)

Okay, so tell me the truth... while I understand that you are only trying to make me feel better, dismissing my feelings doesn't make me feel better at all.

Let's try this... Picture your child in your mind....  Is their face there?  OK, so now remember what they looked like as a baby?  Got it?  Remember what it felt like to give birth and hold them that day.  Amazing, right?

OK, now say if someone walked into your hospital room and said "Hey, I know this would be hard, but instead of bring your baby home to nurse and cuddle and watch grow, let's put your child in the ground because I know it would help out SO many people!! It will be awesome!  Just beautiful!  You can do it, I know you can, I know how much you like to help people and this would change the world!!"  You would hand your baby over with a smile...??

Yeah, that's what I thought.

OK, now that we've been honest with ourselves about the fact that there isn't a single Mother on the face of the planet - not even Jesus' mother - who would not have real, hard, gut wrenching human emotions should they watch their child die.... Let's talk about my silver lining....

First of all - I have more than a silver lining here.... what I have is so big and so amazingly bright, I am not able to see it all at once or I might go blind... and I don't even fully comprehend it.  What God has done with Rachel's life and death has humbled me... it's changed me... it's changed the world... it's been unreal.  I would have never imagined in all my life I would ever feel God's closeness, His provision, His faithfulness, His love... to the extent I did and do.  I would have never imagined that something so hard could bring so much joy, peace, beauty, thankfulness to my heart....

So, I don't really need - nor have I ever needed since day one - someone else to fill me in on how to look at this.  I know some people just don't know how to sit with someone in pain, but pain does not mean that you aren't thankful.  It's doesn't mean you need a different perspective.  Believe me, my perspective has been changed and it's where it needs to be.  But I am still a mother who lost a child and that still requires feeling through my grief and loss and sadness over what I'm missing - and every once in a while it requires some very heavy crying... there have even been stages that brought me through anger and fear and questions....

All that said, let me explain why I'm on this topic... I started the post I just did about empathy a few weeks ago - but never finished it.  The day after Rachel's Race, the physical effects of all that does to me, took it's toll.  I first got really sick with a cold and then my autoimmune diseases kicked in full force and I was in a ton of pain all over and within a couple days, not able to move...

I had that video I just posted on my mind as I sat outside one afternoon with the kids.  I was in about as awkward position in the chair as possible to keep my back straight and the sun was beating down on me, so I was starting to get really hot.  Just as I contemplated going in, the sun went behind a cloud and I felt relief....


 By now you know me well enough to know that this got me thinking.... There is a song that says "Who imagined the sun and gives source to it's light... yet conceals it to bring us the coolness of night?"  That was the song that played on the radio as we left Maine Med on our trip up there on August 5, 2010 when we got our 2nd opinion about Rachel's condition...  she was going to die... and that song had me questioning God...

If You are so big and great and powerful that you hung each star in the sky and know them by name... WHY my little girl, Lord???  Why?  Why couldn't you make this not happen?

And yet, even in those very early, raw, confusing, scary moments, hours, days and weeks... I was committed to loving her with all I was and trusting God will all she was to be.  And in the middle of that storm, I saw His light SHINE.  It wasn't a little light for my path, It was huge and bright... and unquestionably HIM.  All Him.  He led me and I followed.

So, if you have watched that video on my last post, you saw there is a point that talks about silver linings and they draw a line around a cloud... and this sky reminded me of that....  and I just want to share what God put on my heart in that moment...

First of all, some times, even the sunshine burns if you get too much.  God knew *exactly* what I could and could not handle in those days and He still does.  And if I trust Him and not other people's ideas, I am going to be much better off, regardless of what the clueless person next to me sees as 'healthy' - God knows me. Period.  His ways are not my ways.  And they are not your ways.

Second, looking at that picture.... do you really think the sun around the edge would look so amazing if it wasn't for the dark cloud in the front of it?  You see, the only reason a silver lining ever looks desirable is because the rest of the view is so dark...  but you can't have the silver lining without the cloud.

I think the true 'silver lining' in a situation has to do with how much God shines around the edges of the darkness, not necessarily pretending like the darkness doesn't exist.  I think saying "This is the darkest valley I have ever walked, But God has not left my side" is first of all, way more honest - but secondly, so much more of a vulnerable place to allow people in to - and in my experience, time and time again, I have heard people say to me that because I was real about how dark and heavy my 'cloud' was, yet was still able to see the Son around it's edges... that led them to want to know my God.... the Giver and Sustainer of life - even when he let my baby die.

In a world where every non believer's favorite question is "Why would a good God allow bad things to happen?"  I have to ask... why are we all so afraid of the clouds?  Why do we think that by acting as if nothing phases us we will win people over - or that God will be more happy with us - or more glorified?  Because in my interactions with non believers, people who pretend like the cloud doesn't exist when it's right there in front of everyone else are hard to connect with... hard to believe... hard to take at face value - because EVERYONE KNOWS CLOUDS ARE REAL.  They are.  And that's okay!

And a few minutes later, the cloud started to move... and the sun started to shine... and it got hot again... and you know what?  It was amazing at first, but pretty soon, I went back inside!  Not because I don't like the sun - that was the whole reason I went outside, to get my vitamin D... but honestly, sometimes I need the shade the cloud provides.  Sometimes I need the 'coolness of night'.  Sometimes I need only to know that His light is bright in the background, even when my reality is dark because of my looming cloud.  And sometimes I even need to feel the rain that the cloud inevitably will drop from the sky.  And that is where the most preciously timed rainbows always appear for me.  There is not a single unplanned moment in God's world.

This summer, leading up to August 4th, we had these very strange and constant times of scattered rain.  It rained pretty much every day for just a few minutes and then the sun would come out -  But do you know, I have not watered my garden at all this year and it's been the best year it's had yet?  I also have not been going to Rachel's grave like I used to and every time I would get there, I would be certain that her plant would be dead and it wasn't... it's STILL blooming and it's been there since Mother's Day!

The week of August 4th, I honestly felt like it was a huge gift from God just for me (selfish, I know!) But, do you know how many rainbows we saw that week??  Too many to count.  And on August 4, just as Matt got home from work, there was an amazing rainbow that came in the middle of one of those spurts of rain - I was trying to take a photo of how it was raining and sunny at the same time, which went along with how I felt that day (and have for years now) and I didn't see the rainbow shooting straight down until after I took the photo!


Just as I did, Matt yelled from the other side that there was a rainbow over there... so I went and caught that one too!  The thing about it is, we both were expecting God to send a rainbow that day. Just like so many other days that are on our "Rachel" calendar... including the day we finished building her Ark Playground....  we both have come to expect God to show up in the details.  It's been an unbelievable journey of Him revealing His providence and how much he cares for us in everything.  He remembered August 4 with us and He ended the day with a rainbow... a symbol of His promise that no matter what we go through, He is with us and will take care of us.


So, what's my point...?  My point is -  no rain, no rainbow.  No cloud, no silver lining.

And when it's raining out, I'm probably the only person around you will hear saying "There must be a rainbow somewhere" - I say it because I know it to be true...and it's not because I just like to look on the 'bright' side or dismiss the reality of the rain... it's because God never lets me down and I know if He sends me rain, He will send me some hope to go with it - something beautiful to gaze upon as I wait for the storm to pass. But I know it is there even when I can't see it....

I faced my storm cloud head on and let God's light shine, proving He was bigger still than any cloud in my view.  I know that God has used the darkness of this journey to reveal his light.  And I know He's not finished with me or Rachel's Legacy yet.

I can't completely say that if given the choice back then, knowing all I know now, that I know for sure I would still choose to do this again.  I think my maternal instinct would refuse to allow her to leave if I didn't have to.  But sometimes I actually do wonder... and at times I honestly think I would do it all again.  Obviously I wish I could have come to know God in this close of a way without her having to die... but His ways are not mine and they are higher.

My good and His glory.

I'm positive that has been achieved.  Even though some people don't like me better now... that's ok... because I live for my God alone and He & I are just fine hanging out in this shade and watching how many people are in awe of how He shines all around the edges of my dark days.

Sunday, August 24, 2014

Empathy is a Choice


So often people have said "I just don't know what to say..."  And through the last 4 years, I have time and time again tried to be a teacher on this subject... The subject of what to say - or not to say - to someone who is grieving. Not for my benefit - I've already suffered the pain by the time I bring it up - it's more for the benefit of you and the people who may need you in the future.

The best words for my heartache have simply been "Rachel Alice Aube matters to me."  whether you say it in words or show it in deeds, that is the one thing you can say in a million ways that could never be wrong.  If you say the opposite, by either avoiding me, throwing her name or her existence around in order to make a point or hurt me, or acting like she never existed at all... you can be sure of two things... I will be hurt and even when I get over it, I won't forget it.

If you are reading this at this far into my journey, most likely you are one who truly cares.  Thank you.  If you have met me in my darkest hour and allowed me to think, feel, and be just where I am... thank you. (you can be sure I have NOT forgotten that either!!!)  If you have received correction from me where grief and pain are concerned and you didn't walk away or tell me I have no right telling you what you should be doing... thank you.  If you have prayed for me instead of judging me and sending me emails telling me my perspective was wrong... thank you.  If you have found yourself in tears as I have shared my struggles... found yourself smiling when I have had victory over a hard day... or found yourself humbled before God as you empathize with my sorrow or pain... thank you...

I love this short video of empathy versus sympathy - As I watch it, I find myself nodding and wishing everyone could truly 'get' this.  This has truly been like salt in my wound over and over again as I have walked this hard road.  The fact is, God made us to need people!  And then He calls his people to comfort others and to help carry their burdens.  Yet somehow, even the most devoted followers of Christ will deceive themselves into believing that He doesn't want us to do that if it's uncomfortable or unfamiliar - that 'all we can do is pray'... that He doesn't want us to be brought down by someone else's hardship...  

This video is a good reminder for me too... to remember that when someone is going through something hard, to not assume that 'they want their space' and then let them feel alone.  To always reach out, even when I'm at a loss for words or actions... to just say I love you and I'm here.  I don't have the answers, I don't know how you feel, but I am here.

Take a couple minutes and watch this with an open heart and ask God who He wants you to reach out to right now.... who does He want you to climb down in the pit with for a minute or two just so they don't feel so alone?  And when that person comes to mind, I challenge you to make a move - any move - to really show empathy and help carry their burden.  You have no idea how much you can bless someone with a simple gesture of love!

And to everyone who has taken that minute to reach out to me since August 2010... THANK YOU!!  Each and every time has blessed my heart and helped me to keep on walking, putting one foot in front of the other, as I have stumbled along on this heartbreaking journey of love, joy, sorrow and pain.... any act of empathy, even if it's not "right" is perfect and God always uses it to encourage me and give me hope.  Thank you for stepping out of your comfort zone for me.

So, here is the video....

"empathy is choice - and it's a vulnerable choice because in order to connect with you, I have to connect with something in myself that knows that feeling....  rarely does an empathetic sentence *ever* start with 'at least'..." 







A Dose of Love

A couple weeks ago... right after Rachel's Race...  my back totally went out on me.  I woke one morning and knew it hurt.  By that night, I was screaming in pain.  Like, literally *screaming* randomly and without warning.  I barely slept at all that night.  I couldn't lay on either side.  I couldn't lay on my back, I couldn't lay on my stomach.  I couldn't sit up.  I found myself screaming and "breathing through" every move I made.

I figured it was a pinched nerve, but the pain started to completely circle around my entire mid section.  If I was pregnant, I would have assumed I was in labor and experiencing back labor. Actually, this was worse than any labor I've experienced.  I called the doctors the next morning and they had a very early apt open, so I went down there with all the kids.  I really probably shouldn't have been driving, I could barely move, but I had to get there.... and I cried the whole way.

I walked into the office and the girl working the desk was wearing a shirt from Rachel's Race....
my heart smiled, even though I was a mess physically.

As the nurse was checking me in in the room, we heard a knock on the door... and in walks two of the young ladies who volunteered at Rachel's Race and they handed me this amazing and beautiful photo book one of them made me!  I started crying even more...

For obvious reasons, this is special to me... and gifts do tend to be a love language of mine... but if I were to try to say why it is that gifts about Rachel mean so much to me, I would say that they say loud and clear that she is on someone's mind besides mine.  I so often feel alone in this... I so often feel like everyone else has moved on...  I so often feel like so many people judge me for the way I continue to include her, because we've been told that the "healthy" thing to do as a believer is to look forward to heaven instead of behind me at what I lost....

This is special to me because she took time... energy... love... and thoughtfulness... and she poured it all into making something for me that would articulate to me that Rachel is not forgotten and that my love for her is beautiful...

She used quotes from me from my blog. This is not something I would have done if I had made it myself... I would have made up new quotes, new thoughts - which is not bad, but reading things that I had written before about Rachel, about my love for her, about my devotion and about how God is carrying me... Snippets from my blog....things I didn't remember writing... I was blown away...

There are so many times I wonder why anyone reads my blog - I wonder why anyone cares about what I have to say about this, especially still... and I know so many have stopped reading who used to read every day and they no longer follow my journey... and that can feel lonely too.

But reading the things she chose to put in this book, I was so encouraged that words that I wrote in some of my hardest days looked beautiful to her - and I hope to everyone who read them then and still do.  Because Rachel Alice was and is beautiful to me.

I wish there was a way to share the entire book!!  Each page is filled with pieces of our journey these past few years.... here are a few....

The front of the book

Add caption

prayer vigil in the very early days with Rachel

A note I wrote to her at her grave one day last year, I think.


a quote about why I picked an Ark for her playground

Thank you SO much for this beautiful gift.  I went to the doctors looking for much needed relief of my physical pain, and my heart got a little medicine too.  It was the dose of love I needed when I was at a very hard place.

Monday, August 18, 2014

Rachel's Race 2014 - The Video!

Well, it's far from a professional video, and even further from perfection, which you know drives me crazy... but here it is, none the less...  I had to take out bits of the ceremony in order to fit everything and mash together a few different recordings, a few songs (I included the ones we played at the ceremony) and a bunch of photos, so it wasn't a small project, but I'm done!!!

Thank you to everyone who took photos and videos for me so I could create this video.  I hope it gives at least a glimpse into how special this day is for us as a family, for Baby Rachel's Legacy as a Non Profit, and for other families who have suffered the loss of a child....

Each passing day, it becomes more apparent to me that Rachel's legacy will remain long after I'm gone.... so I guess I'm doing my job as her Mama.

I continue to be thankful for this hard road and praise the Lord that He is able to bring beauty from ashes.

Here's the video... My sweet friend from Switzerland will recognize the banner behind me on the stage!!! (Thank you, it fit perfectly!)  There are so many details of love scattered throughout the day at Rachel's Race... like I suppose it won't surprise you that there are 43 balloons... Well, I actually bought 45 in case some popped and 2 wouldn't float with the rest, they laid low to the ground... so there were 43 in the air. 

Heaven is real and I can't wait to see you again pretty girl!!







Sunday, August 10, 2014

A Nugget of Love

I've fallen behind on so many things I want to share - but this quick post came to mind, so I'm going back for a minute!

My birthday is the week before Rachel's diagnosis day.  I remember the last birthday I had before her diagnosis like it was yesterday.

Each year since then, my birthday carries a little sting.  It's a day where I remember what it was like to not know my baby would die - or how much it would hurt when she did.  A day when I still had my innocence in motherhood.  That day 4 years ago, Desirae & I began a tradition of getting our toes done together on my bday - we do it every year and always take a photo to remember it. And when we got our picture done that day in 2010, I remember saying "I wonder if there are 3 girls out on this girls day right now!?"

And there were.  And to this day, there still is.  She is with me in so many ways on each of my special days - but the week leading up to her diagnosis that year was unreal.  God had shown me so loudly that he was with me - and in many ways it was because of that, that when I got the news that day, I felt like He had prepared me.  It was so obvious.  He had been preparing me.  wow.

So anyway, on my birthday this year, I took the kids to Wendy's to eat.  We never go to Wendy's, we usually do McDonalds - but their dollar menu has quickly become much more than $1... so we tried Wendy's.  I had no idea how to order there.   I ordered the babies a 10 pc nugget to share and I'm not sure why I stopped to do this, but when they gave them to me, I counted them.  There were only 9.

I knocked on the window and said "We're a nugget short."

And it hit me like a ton of bricks... we're a nugget short... always.  I miss my little nugget....

And then he handed me a new nugget container - with just one nugget - and this is what it held...


I never guessed that something like a chicken nugget could make me emotional...  but seriously..??  do things like this 'just happen'??  I know it's not the first heart shaped nugget made and it won't be the last... but on a day where being 'a nugget short' was breaking my heart, God gave me a clear picture of the fact that her heart is whole in heaven and she is with us.  In Christ, NOTHING can separate us.  Not even death.  She is alive in Him and He is alive in me.... And that was my little nugget of love from God on my birthday....

And because I started a post with these pics and never finished it... here is a pic of me & the kids at the park with Cyndie that day...
I am so thankful for these 5 nuggets!!
And then our toes picture from that night...it had been a hard day so I don't have one of us getting them done like usual, but I snapped this one outside the shop, just as it started to pour before the huge storm (tornado warning!) started....  Another year gone by...

Lord help me to always make the most of the time I have with my babies on earth - and please Lord, draw them to Yourself so that I will see them again one day in heaven.  I don't want this to be all I have with them... even though it is a great gift... I want to stand in Your Presence and worship you with them for all of eternity... In paradise where there is no pain, no tears, no sadness and no tornados.... to see them filled with only love and laughter and joy and praise... that's my deepest prayer as their Mama...  thank You that I know it's been answered for Rachel.


Saturday, August 9, 2014

Rachel's Voice in Oklahoma

Tonight I got a message from someone who bought one of the shirts that was leftover from Rachel's Race... She wanted to tell me that her daughter wore the shirt out to eat and was telling everyone about Rachel....here's a peek at our conversation....



She showed all the people she could her shirt your own little spokesperson in Ok
my girl and your girl are a little over a month apart
hard to think of Rachel as that big.
I wish I could see what she looked like between Sam and Asa - thanks for sharing about her today
I think that's part of why your journey with Rachel hit me so hard
yeah, bc you were holding her when I had to let Rachel go
plus being pregnant at the same time too...
seems like so long ago and yesterday at the same time
Yes. I found your blog the week before you had Rachel. I went back and read from the beginning just snuggling Delilah and bawling. I couldn't imagine, I started being interested in going to church then too because I believed God was what helped you get through and I wanted him in my life too.
You and your beautiful girl were and continue to be an important part of my life
I'm pretty sure it was November 26th of that year when I started reading your blog
I'm honored you remember so many details, it says to me it's important to you - and the fact that you started going back to church... well, I think you know what that does for my heart
I never grew up in church so it was deciding to go at all. I have pictures from that day where I am holding Delilah at the computer at my mom's
are you serious?! was it the day you decided to go to church?
Yes. The day I was reading all your blog entries was the day I decided I needed to find a church.
We found our church in May of 2011 and have been going ever since



Need I say more.... a pretty little daisy outfit to top it all off!!  
Rachel reached out across the earth thru her Mama's fingertips and is still changing the world.  Most of it I have yet to hear... it will only be when I go Home that the Father will fill me in on all the ways He used me.  But these kinds of stories are my favorite and I'm so thankful when people share them with me.

I know there are people in a new or renewed relationship with Jesus because of Rachel... but hearing it is overwhelming.  It makes it less of something I say because I hope for it and more of a solid truth that exists because of my willingness to be vulnerable and share the story God gave us.  I didn't always want to follow Him on this path of blogging my heart out - but I knew He was calling me to it and using it,so I did.  And every time I tried to walk away because it hurt too much, I couldn't go a day or two without someone stopping me in public and telling me how Rachel impacted them and encouraging me not to quit!  Every. Single. Time!!  And I would find myself back at it that night, surrendering my heart and soul to my God who had a plan for much more than me in this journey.

I'm so thankful and so humbled that this little girl's Mama considers Rachel part of her story...  how God brought her to Himself.  I know who those people are in my life... and how I feel about them... and wow... He's letting me be that person to others.  wow.

How Great Thou Art.... 

Wednesday, August 6, 2014

Long Distance Friends

Our friends from OH came up for Rachel's Race again this year.  This is the 3rd time we've met in person.  After the last race they came for we didn't hang out though, so this time we made a point to spend time together.  They met us at church on Sunday and we spent the day together afterwards.  We hung out in the middle of our race disaster here and then went up to play on Rachel's Playground.

It's amazing to me the friends I have gained from God through Rachel.  I might not get to see them every day, but when I talk to them or visit with them (still anxiously waiting to meet a couple of them!) it's like we've always known each other.  There is a connection so much deeper than I have with even people I have been around for years.  And I love the fact that I will know them and their babies gone too soon when we meet together in heaven.

Until then, I will take whatever time I can get... and goodbyes will always be hard....

Missing from this photo:
On earth... Wesley and Cielo
In heaven... Rachel, Silas, Saria & Benjamin

I'm laughing about the fact that there are still kids hanging off our ankles

hanging out on the kitchen floor :)

Rachel's slide!  Weeee!

Of course there was a dandelion!

Des was soaking up all the time with little girls.  She told me when they left that little boys are all messy with snots all over them and little girls are 'just perfect'. LOL.  She was sad to see them leave...

Wearing her daisy dress