Saturday, October 18, 2014

I Cried Because I Couldn't Stop

I spent last night in the ER.  I had been having a lot of back and neck pain for a few days that turned into sharp pains in my head, that turned into a headache so bad I couldn't function.

I was sitting here with the kids waiting for either Des or Matt to get home to relieve me of taking care of the babies so I could lay down and I couldn't keep my eyes open or talk normally.  When I noticed I was seeing things when I shut my eyes, I had Isaiah take my blood pressure.... which was through the roof.

I know being scared can make it go higher, so I tried to breathe through it like you breathe through child birth and just pray... and it worked a little - but when Matt dropped me off at the hospital (I'm not one to go alone usually) and the place was packed and everyone was talking about a 2 hour wait, I started feeling scared.  Just as I was calling my friend Cyndie to have her transport me to a different hospital (which is actually MUCH closer to me, but doesn't accept my Obamacare), they called me in.  Thank you to my friends who were praying for me in this... While everyone else waited for 2 hours, I was there for about 20 minutes before they brought me back.
 
They left me in that room and I fell apart.  Weeks and months of discouragement and weariness over my medical issues all came flowing out and I couldn't stop crying.  And the ER halls were so full and so loud, I didn't even try to cry quietly because nobody would hear me anyhow...

I cried because I'm tired of being in pain.  I cried because I'm only 35 and feel 90.  I cried because I might want to go to heaven, but I don't want to go now. I cried because I don't want to leave my kids without a mama.  I cried because nobody seems to be able to help me and I feel like I'm just waiting for my brain to blow up.  I cried because nobody *really* understands. I cried because I have to do this alone, nobody can do it for me or relieve me of the burden.  I cried because I desire another baby and might not ever be able to have one.  I cried because this isn't how I want to spend my life.  And I cried because God could change it all... but He's not.  But mostly, I just cried because I couldn't stop.

In the middle of this, Cyndie walked in...  a hug just when I need one ♥  We were both wearing our shirts from Rachel's Race.  I cried some more and blubbered some stuff about how I can't believe this is my life and how they needed to get my blood pressure down asap.

The nurse came in and took my blood pressure - it was 180/117.  She told me crying wasn't going to help it.  I told her I know, but I couldn't stop....

After giving me an IV and a bunch of meds, they did a CT scan of my head to check for bleeding and it was 'normal'.  They were supposed to do an xray of my stomach because I also was suddenly having those charlie horse cramps in my stomach again all afternoon, but the xray staff came to get me twice and wouldn't take me bc the nurse hadn't done a pregnancy test yet (my urine was awaiting them, but they just kept forgetting and then the dr went home) So they told me I'll have to follow up with my PCP.  I'm not very impressed with that, but I'm just the patient.

Eventually they got my pain under control and got my blood pressure down to 145/100 and sent me on my way with a couple of prescriptions that might help for a few days but aren't anything more than a bandaid that won't last.  

I just have so many things going on that it's hard to even differentiate what is what... does my head hurt because of my neck or aneurysm...or MTHFR mutation?  My neck because of my back or protruding disc - or Ankylosing Spondilitis (AS)?   My stomach because of my syrinx or because of GI issues... like maybe an allergy... or am I developing crohn's...or is my intestines flipping? (this is where the xray last night while it was happening would have been helpful :( )   My back because of nerve damage or AS?  My joints because of Poriatic Arthrtis (PSA) or something else?  Is my skin a mess because it's of the PSA or an allergy?  See what I mean....???  It's overwhelming and frustrating and all over the place.  And everyone keeps passing the buck to another 'specialist' who in turn passes me to someone else.  What do these people get paid for???

I had called yesterday to get into Physical Therapy and I will try it, although I'm pretty sure it's not going to be anything more than a temporary bandaid either... but it's the "next step" so I'll humor them.  I just feel like I don't have the time to get over there...  because I don't.  *sigh*

I need to make an appointment with the GI that I've been putting off because I honestly don't know if my mind and heart can handle another diagnosis right now.  But not knowing doesn't make anything go away so I know I need to, especially with my family history of colon cancer, ulcerative colitis and crohn's disease... I haven't had a colonoscopy in 5 years, and am afraid they will say it's time for another....and what they might find.  The Neurologist says my stomach cramp is from my Syrinx, but I honestly think it's intestinal - at least that's how it feels.  But I need an answer so I need to go... have I mentioned that finding time to go to all these appointments is more than difficult?? ugh.

(prayer requests below are underlined...)

I also have an appointment with a neck/spine specialist, but they can't get me in until the end of November.  I called yesterday to try to move it up, but they can't.  I'm on a cancellation list if you could pray that they will have something open for me sooner... and as much as I don't want surgery, if they can do something to relieve this constant pain, I want it done.  Pray that I will get good direction from the Dr's and God in making this decision.

And that's the purpose of writing all of this...  I need you all to pray.  Not (only) for the doctors to do great things and help me, but for God to heal me completely.  Because apart from a miraculous healing from God (even if through the doctor's hands), I think my life is going to be like this, or worse, for the rest of it and I'm weary already.  Pray that my blood pressure would go back to the way it was before I had E - it used to be 106/54 regularly, even through all my pregnancies... now even on medication it's still 140/89.  My blood pressure is the most concerning because it's dangerous to have an aneurysm and high blood pressure.  I need prayer about my Neurologist and finding one that my insurance will cover that I trust because the office I'm at isn't good.  And I need prayer that through all of this, I won't let the enemy steal my joy...  because the joy that the Lord gives will make me strong.

And even when I can't stop crying, God is still God and He is still good.

Wednesday, October 15, 2014

Daisy's Mama

On Christmas 2012, we bought Desirae a hamster.... she named her Daisy. ♥

You may remember me blogging about how right after she opened her that morning, one of her first questions was "What if she dies?"  My heart felt the same sting as hers... it's scary to love someone so much and know you can lose them.  

The night before the race, I heard a scream... "Daisy's gone!"  Asa had let her out and Des was beside herself in tears.  I had to leave all the race prep in my kitchen and go hunt down the hamster, begging God to not let Daisy be gone for good.  I found her in the back of her closet and she was so relieved, but still sobbing.

Last night, she again came frantically running to me.  She had her Hamster Care Book open and was crying "She's not dead, but she had this smeary stuff and right here it says that sick hamsters have that!"  I ran to look, pit in my stomach... the day I've feared since I brought her home from the pet shop... how do you walk your child through a loss...?  

And then I remembered, I have.  sigh.

We cleaned up her cage and after looking online for what to do,  I ran to the pet store just before 9pm to get some Wet-tail drops.  There we were crying in Des' room and trying to save Daisy late at night.  
Through her tears she cried "It's all my fault, I haven't changed her cage in weeks... I don't hold her enough... I noticed 4 days ago she wasn't coming out of her strawberry and I didn't do anything... maybe if I did something then, she'd be ok..."

I tried to explain to her that she isn't the first kid in history to forget to change the cage for a while.  She just cried more.

This morning I called the vet.  Something I told myself I'd never do for a hamster, but I should have known myself better than that.  They said it is $51 to be seen, plus whatever they prescribe.  I asked if we could just buy the Critical Care food I read about and they said no, she would have to be seen first.  So I told Des and said I didn't have the money... and she went for hers.  

When we got there, they looked at her and said "She has wet tail, it's very serious for hamsters and they don't survive."  

As I watched my daughter get news she has feared since she first held Daisy, I felt August 4, 2010 all over again.  Obviously a much smaller scale, but to Des, this is her baby.  They immediately started talking about putting her to sleep in a couple days if she doesn't start eating.  I asked about medication and she said that we could try it, but they usually die anyway.  She said "I'm not saying you shouldn't try, I'm just saying it usually doesn't help."  I asked her to get prices so we would know what we were looking at.

She came back with the pricing and I went over it with Des and asked her if she was okay paying that amount.  My dad had said he would give us $50, so Desirae's portion would be $29.  This would be for the special food and an antibiotic.... with no guarantees that it would change a thing about how long she lived.  She was seeming unsure, so the vet left us alone to talk.

She said "I'm just not sure if I should spend the money on it if she will die anyway."

I asked her, "If we go home without it and she dies tonight, will you regret not getting the medication?"  She immediately nodded yes and said she wanted to get it.  

She kept going over the "If only's" and I couldn't convince her it wasn't her fault so I encouraged her to ask the vet.  I told her how with Rachel, I asked all sorts of questions... I had so many things I thought could have 'caused' her to have anencephaly... and it was scary to ask, but I needed to know, so I did.  When they came back in, they asked her if she had any questions, and she said "Ummm... Not really..." and looked at me - so I told them her concerns to which they quickly replied "Oh no, it was nothing you did... this just happens sometimes, you couldn't have done anything to change this." and as I saw the guilt melt away from her face, I thought... that was worth every cent of that $79.

This past week, we had tried to do a craft fair and Des made cards to sell.  We got rained out, but she sold 4 there and has since sold 10 more and has 15 more spoken for... they are $1 each... which is the $29 she needed to pay the vet today.  As we talked about how she had made exactly what she needed this week to cover Daisy's bill, her eyes lit up... God provided for her little girl... and mine  ♥  I'm so thankful for how He is building her faith.  It's been happening a ton lately and this is just one more instance that she can see in ways that are big in her mind that He is always on time... He is with us.

So now we start a journey of trying to nurse Daisy back to health... and we are very aware that she could still die... But Desirae will never have to wonder if she could have done more... she won't have to question if it was her fault... she will know that she loved her and cared for her and did everything she could to wait out her miracle.  She will know that she gave her all to the one she loves.  Even if the world sees it as "just a hamster." (She is also pretty excited that we apparently picked the "only hamster in the world who likes to take medicine like Ezra." LOL)

Those are the things I am most thankful for with Rachel; to have no regrets - or at least as few as possible....and I know those are the things that will be the most important for her heart too.  And as she feeds her little Daisy with a dropper and prays over her, she is learning so many things.  They are hard lessons and they won't come without pain, but I know they are building character in her - and more importantly, her faith and trust in God to help her through.

Since I had Rachel, I have had this strong desire to one day do ultrasounds at a place like I went with Rachel... to be able to be that person who helps people like me get 'good pictures' in a supportive environment... Knowing how much of an impact the ultrasound tech has on an experience like mine, I want to use what I learned on my journey to help others.  Unfortunately for me, schooling for that is probably not happening any time soon... but I still dream...

Today when we left the vet, Desirae said that she wants to work there when she grows up.  I asked why and she said "Because I want to help the animals... like Daisy."

That's my girl. ♥



I don't know if she'll be a vet... but she is going to make a great Mama.

Sunday, October 12, 2014

Cast Your Vote!!

 You know I've told you about my sweet friend Caroline who has been showering me with love in the form of poems, drawings, paintings and even giving me her winnings at Rachel's Race Auction...  I believe she was only 11 when she first jumped onto Team Rachel, but she just keeps on amazing me! 

Drawings From the Heart is having an art contest that is an opportunity for siblings, cousins or other children close to a baby who has been lost to draw something that reflects their feelings about the precious baby....  and Caroline has entered with a beautiful drawing of Rachel she made.

CAST YOUR VOTE to help her win - all money goes to support Now I Lay Me Down To Sleep - which is an organization VERY close to my heart as well. ♥


Friday, October 10, 2014

Love Her Locks

Rachel was born with a ton of long, dark hair in the back - and a little ringlet of the same resting in the middle of her forehead.

I brought my cutting shears with me to the hospital to take a piece of her hair home with me.  The hairdresser in me couldn't let just anyone with just any scissors cut my girl's hair.  I remember being so torn as I went to cut it because I felt like I was giving her a bad cut... I wanted a piece of it, but I didn't want to leave her with a bad haircut...  I know my hairdresser friends will understand.... so I took a small clip from right behind her little lamb ear and tried to make it as unnoticeable as possible.



Matt bought me a new pair of shears at one point not too long after... maybe that Christmas?  I'm not sure, but I still have the ones I gave Rachel her one and only bad haircut with....  And when it came time for Asa's first cut, I used them with her very heavy on my heart.  Of course, it took Asa a couple years to grow hair the length of Rachel's....

But my little E was there, his hair looking kind of scraggly...  so last week, I got out my hair bag to give him a trim... and I grabbed the same old shears and gave him his first haircut with her on my heart. ♥




And as I snipped, I set aside a few locks for his memory book.... a book he'll most likely get to see when he's older.  A book that won't just be for my memory, but also a keepsake for him, and maybe even his kids one day.  Something her lock of hair will never be for her.

Every little milestone is a reminder of what I never reached with Rachel... and yet, she is always there.  I looked at the photos Des took while I was cutting and in the one above, as I go to set aside the first lock from behind his ear, both of the tattoos I got for her are right there.  The words "My Girl" and "Alive" echo as I place each strand of hair aside to save for him... 



After we took a few pictures of him and told him how ridiculously cute he is, I went to look for Rachel's hair.  I had suddenly found myself nervous that I didn't know where it was.  I had put it away in her box when we put the house on the market and didn't remember.  I found it and as I took this photo, the words on the jar made me stop...  "Remember me"....  

Oh, how could I ever forget you, pretty girl?  My love for you will never fade... 
There isn't a lock of love on this earth that doesn't bring me right back to that day... December 4, 2010 when I gave my second daughter her first haircut.  Two months short of 4 years later, it's still as if it was yesterday in my mind and heart.  It still hurts.  It still makes me smile.  She had long, dark hair like all the others and I didn't miss my chance to give her a bad haircut...  because I think most moms do that to their child at least once. 

But what I wouldn't give to be able to run my fingers through her hair.  To be able to one day show her how dark and long it was.  To see if it turned blond like the others, or stay brown like Matt... To let her pass it down to her kids if she wanted - or to lose it like I did mine when I was a kid!

It's just hair, I know.  but for a girl without most of her skull, it's a pretty big deal.  And for the Mama that gave birth to her, it feels like the little bit of 'normal' that I so desperately needed in those days.  And now it's just a memory in a jar.... but my love is in that jar right along with it.  

Sunday, October 5, 2014

Wedding Details

I'm going to attempt to explain what I meant when I mentioned in my post the other day that in Maine I had the 9 best days with Rachel.

I doubt words will do it justice, but simply stated, what I found on that trip was that the less I tried to find a way to include her, the more she showed up in all the details.  Bear with me on this one, my thoughts are all over the place.... I think I'll list details so that I don't need to make it all flow....

Detail 1:
A week before the trip, Desirae randomly told us one day "When I get married, my wedding colors are going to be purple and yellow."  I asked why and she said "That's what you said are the colors that remind you of Rachel."

A few days later, we were out at a store and I saw the most perfectly purple mums I've ever seen (and haven't found again!!)  They weren't lilac, they were a deep, vibrant purple.  I told Des that I wanted to get some for Rachel's grave and our steps when we got back from Maine.  She agreed they were perfect.

Detail 2:
We go to Mount Battie every year in Maine, it's always our first day trip.  In previous years, I had them all put on their race shirts for that trip and we took pictures at the top of the mountain that 'included Rachel'.  As a general rule, I am the one thinking of Rachel and trying to incorporate things to keep her as part of our days, especially on vacation.  Not that the others don't care, she has just not had the same impact on them as me - which only makes sense... but it can be very lonely.

Detail 3:
So as we got to the last day of our trip and still hadn't gone, we decided to go even though the weather was cold and  soon to be rainy and not really ideal for being up there.

The kids were outside having fun and I was getting us ready to go.

I thought about the shirts... I started taking them out... I considered just letting the kids play and not interrupting them for the change of clothes.... not being a downer with my requirements for the trip... and I put them back...

I told myself that I can be Rachel's Mama alone, I don't need everyone to join in for her to count or be included.... and I sucked it up and put on my Rachel's Mama shirt and let them keep chasing frogs while I packed us a lunch.

A little bit later, I looked up and there was Matt, wearing his 'Rachel's Daddy' shirt.  Not asking him to gave me the chance to see that he chose to on his own, which was way more of a gift for me.
My Love


Detail 4:
I had the "Share a Coke with Rachel" soda my friend Becky gave me that I had at Rachel's Race.  It's been sitting on my counter since the race and I brought it and had it on the kitchen window at the camp all week.  I had told everyone that it was off limits... nobody was to drink it... I guess I thought I would keep it forever...?  But I tucked it in our lunch for our trip to Mount Battie thinking I would "Share a Coke with Rachel" on the top of the mountain.

Detail 5:
In the video I made called "We Still Believe" (right side of my blog) the part that says "From the mountain top, to the empty cup" I put a picture of her in my arms at birth when it says 'the mountain top' and then a picture of me closing her casket when it says 'the empty cup'.  I picked the picture of her alive for the mountain top... in my heart, the 'mountain top' was where she was alive and with me... so sharing a coke 'with her' on the mountain top was echoing that idea in my mind.  That she is alive and with me....

Detail 6:
We were standing on the mountain top when people started walking past us carrying the very color mums we had picked for Rachel's grave for when we got back.  After the 3rd or 4th person, I began watching to see what they were doing...  they started lining them up... 4 on each side, all purple.  THE purple!  I said to Des "There must be a wedding happening!  You could use those mums in your wedding, they are pretty and purple!"  She agreed and we kept watching... and then I saw the yellow flowers... "It's a purple and yellow wedding!" I told her... the Maid of Honor was wearing yellow, the other girls were wearing purple... and they were using the very flowers we picked for Rachel's grave to line the makeshift aisle.  We watched them taking photos and I couldn't help but wonder if I will be able to be there when Desirae gets married...  and who gets married on the top of a mountain on such a cold day when it's about to rain??


Detail 7:
We are early eaters.  Our usual time for lunch is around 11:30.  So it was totally out of the norm that we still hadn't eaten until much after 1pm...  We hiked around a bit and then made our way back to the truck to eat since it was too cold for a picnic.  We were all standing out back of the truck eating when a bee decided he wanted my food.  So I said lets eat on the way home and just go.
Eating sandwiches like the big boys

Detail 8:
We got in and I ran through all of the stuff about the wedding and the colors with Matt and as I talked, he interrupted to ask why I was drinking Rachel's Coke.  I said "I'm sharing a Coke with Rachel on top on the mountain" and smiled.  He then asked me what I thought all the wedding stuff meant.  I said I wasn't sure.  He turned on the truck.  The time said it all.... It put both of us into silent awe.  We had absolutely no idea it was that late...


Just then, Des said she changed her mind... instead she wanted to have red roses and white daisies as flowers.  I said to Matt through tears, "I don't think this had anything to do with Desirae's wedding..."

I honestly believe that all of those details coming together to that point were all just little ways that God used to remind me that she is alive and with me, through Him.  He pointed it out on the mountain top, but even in the valley.  Not seeing her get married has always been one of those big things that comes up in my heart.

I don't have to grieve missing her wedding because I saw it the day she came and went.  I saw her meet her Bridegroom.  I watched her walk down the aisle, holding her Daddy's finger after I spent months preparing for the perfect day for her, with her.  I was the Mother of the Bride in that Operating Room.  I shed tears of joy for what she was about to embark on at the same time I shed tears of sadness for how fast it all went by and how much I would miss having her as my little girl.  December 3, 2010, Rachel was joined together with her Groom, Jesus in heaven... and I was there to see her off.  And I know she knows I was with her.

So, when I say that the less I tried to include her, the more she was there...  I think I should say that this is also just a different stage in my healing and grief.  I no longer feel the sting of grief that I did for the first 3 years... I still cry once in a while, but my heart is not perpetually heavy over her death anymore.  I know there won't be a day on earth that I don't miss her and wish she was here... and there are still very heavy and hard days... it's just a little different now.  That being said, I'm not in any way at all saying that what I did in the past was not what I should have done.  I did exactly what I needed for my healing journey and I let God use me in any way He wanted along the way...  I am also not saying that if you are in early stages of grief that you should attempt to leave your baby behind in hopes that (s)he will feel closer... I assure you that even a year ago, that would not have been helpful for me.  So please know this is just where I am at TODAY and it's always subject to change.

top of the tower, Asa is holding Jay Bear - the bear that Des and Jay have
that match from when Jay (my niece) had her stroke.  This was Sept 20, the anniversary of her stroke
so we brought her bear to the top of the mountain with us for Jay!  So thankful she is still with us.

My Brave Hearts

This boy makes it hard to remember that he's only 2.  

wow, do I love these people..... 



Thursday, October 2, 2014

Joy That Makes Me Strong

The first year we went to Maine, one of the ladies at the Chamber recommended we try going to the Rockland Breakwater.  She described it saying it was "a long rock wall out to a lighthouse and you can't bring a stroller, but if we hold their hands, they shouldn't fall in..."  I looked at Matt and gave him the "Are you kidding?!" eyes and in my mind made a mental note we would never go there.

This year before we went on our trip, I looked into things to do online... and it came up.  It looked like it could be scary with the kids, but I saw how beautiful it was and became interested.  As I read, I saw that the lighthouse is 4300 feet out and seeing Rachel's handprint on it, I put it on our list of things I wanted to do.


hard to get the whole thing in one pic, but here's a good part of it!


It was an amazing day, the weather was perfect.  I will say that with 4 little boys, I was happy when we all made it back to shore alive and dry...!  I felt a sense of accomplishment with this one because I am deathly afraid of my kids falling into water.  I have this fear of them falling in and me not being able to see them - like I think they wouldn't splash around or something, I don't know.  But I have had nightmares of Isaiah falling into the pond and me not being able to help him.  So walking this far with water high and deep on both sides - and even enjoying it - was God in me.  I am trying not to get in the way of my kids' life experiences anymore.  And I'm pretty sure they will always remember this walk...  4300 feet out to the middle of the ocean.

I was wishing the nice lady who offered to take this pic would have told us that E was being squished back there!
And of course in my photos, this one ends in 43... just in case I forgot that she was in it too.

Me & my honey...  with a couple of kids hanging off of us :)  Trying to make a point
to get pics of just us too.  Des is a good help with that.

And the most precious, yet difficult thing for me was that I decided to wear E in the Ergo Carrier for this.  I haven't been able to wear him in a while, it hurts my neck too much.  Looking back, I can see that this was coming for a long time - I switched to the Ergo after 3 other slings/wraps that people raved about hurt me too much.  Everyone would insist I was wearing them wrong or they wouldn't hurt.  Now I know that it was more than that.  But up until even 6 months ago, the Ergo helped me hold my boy pain free (I LOVE this thing!).  Now is a different story... and it breaks my heart.  I like to stop things because I want to, not because I have to.  I like to be in control.  Maybe it's just because the boy is a whale... He only weighs a couple pounds less than Asa now!  But even with pain meds, I made it through until about 1/4 of the way back and I couldn't do it anymore.  I had to let Matt carry him. :(  Saying those words "I can't hold him anymore" was hard.  It was a realization that it was probably the last time I would wear him in the backpack...

He carried both babies back.  Thankful for my strong husband.

Going thru my photos the other day, I saw that after I gave the baby to Matt, I accidentally started recording on my camera.  It was hanging from me and all you could see was the really rocky path and the big gaps in the rocks... me stepping over it... pieces of my hair flying around... and you could hear  me, Sam and Des talking and playing I Spy.  We were laughing and joking...

It was a part of the adventure I had forgotten.  All I remembered was the 4300 feet, not being able to carry E, the beautiful view, the feeling of accomplishment, and making it back alive...  but what God provided in my disappointment of being physically incapable of holding the baby was a sweet time of fellowship with two of my older babies.  And he even provided the tape to help me see it.  Being recorded when you don't know you are can be both scary and beautiful.

Just like our trip out to the lighthouse.

Just like life on earth.

Just like dying.

I look back at this trip and see a beautiful picture of life....  sometimes all we get is a rocky road to the destination.  It certainly feels like that is what I have been given.  One where we can chose to play I Spy when we are left disappointed... or miss out on the chance because we let our desire to have what we had hoped for - and the sadness of not being able to get it - steal our joy.

I'm reminded again that The joy of the Lord is my strength.  Rachel was no less important to me because of her physical limitations and I know that I do not need to consider myself less important to my children or less capable of mothering them because of mine.  The most important thing I can give them is to show them how strong God is when I am weak.  To let them see me rejoice in ALL things.  For them to see him carry me... again... even when I can't carry them.... and I have no doubt that he will use this all to draw them closer to himself and I pray to eventually join us all together again in heaven.

I don't think I would have this realization if it weren't for that 3 minute recording...  The pictures are beautiful, but they are controlled.  We smile and say "Cheese"... we can Photoshop and change the lighting...  But it's the uncensored proof that my smile isn't pasted on that really spoke to my heart.  And I hope that it spoke to theirs as well.   I hope in all of this they know that I do this all for them... and in the process, just like with Rachel... God is granting me unbelievable blessings for my devotion and obedience... because HE works ALL things together for the GOOD of those who LOVE HIM.  And I love Him.

Choosing to have Rachel 3 weeks early was the hardest decision I've ever made.  When I picked December 3, I knew it could potentially mean she would have less time with me, even though it made her officially "full term".  But I was in so much pain from my polyhydramnios, that I couldn't carry her anymore.  And part of that decision was because I was afraid she wouldn't make it to Christmas and I wanted to meet her alive.  I've always wondered if I had pushed through and made it another couple weeks, if she would have lived longer in my arms.  But I know in my heart that God had it planned exactly how it was supposed to be, even in my weakness and inability.  I know December 3rd was meant to be her day.  I know that he met me in my surrender.  I know he has carried me.  And on that day, he gave me joy that made me strong.

So when I am disappointed because I can't carry them, I will take a deep breath and whisper "Carry me, Lord..."  and I know he will pick me up and hand me joy in the midst of my sorrow.

For the joy of the Lord is your strength - Nehemiah 8:10

The LORD is my strength and my shield; my heart trusts in him, and he helps me. 
My heart leaps for joy, and with my song I praise him
Psalm 28:7

Tuesday, September 30, 2014

Blessings Call

As I click on "New Post", I have no idea what to even write.

Maybe that's part of the trouble of going so long in between posts... or maybe what God is doing in the middle of this deep valley is too big for words.  Either way, I feel completely lost for them.

I will start writing anyway and see if it loosens me up to try.  

We went on our annual trip to Maine a couple weeks ago.  9 days with 6 of my most favorite people on earth in a little dusty (and this year mice filled) cabin on a pond where the water is great to look at, but scary to touch.  A place where Zyrtec is like a food group, I shake everything before I put it on us to check for spiders and cell service is completely non-existent.


I'm sure in the past looking at our photos and hearing the stories, you have been unaware of details like that.  And the only reason I share them now is because it only makes the next thing I'm about to tell you that more important.

It was the best 9 days of my entire life.  The best 9 days of our marriage... the best 9 days with my kids...  the best 9 days with God... and the best 9 days with Rachel (I'll explain this one more later).  And I cried for the first 15 minutes on our way home.

I think I was crying because I didn't want to leave and come back to reality - but even more so I was crying because I fear I might never get to be there with my favorite people on earth again.  And the amazing thing about those 9 days is that we were all so close and completely connected that as I cried, I didn't have to explain my tears - they all knew.  It was one of the very only times - maybe aside from being at Rachel's funeral or her grave or maybe being on the phone with my sister when Jay was in the hospital that my tears weren't confusing to Matt.... that he didn't need me to explain in order to really get it.  I only know that because he said to me "This doesn't mean you'll never go back there again..." instead of "What's wrong?"

I hope he's right, but honestly, I'm not convinced.  My body is completely crumbling on me.  It progressively gets worse each day and I am in constant pain now - in places that didn't hurt even 6 months ago.  The day before we left I had my 2nd opinion at another neurologist.  She gave me the same input as far as my aneurysm... it's a watch and wait and hope to catch it in size to intervene before it has a chance to bleed.  It's too small to do anything about right now, which is fine because I'm all set with brain surgery - but it does feel slightly like a ticking time bomb in my head. My syrinx is just something I will have to deal with.  Surgery probably wouldn't fix it for long and my back going numb is not something I can't handle. Until it gets worse, that's on the back burner. She informed me that I also have a protruding disc in my neck (somehow the other dude has forgotten to tell me about that for now 3 phone calls...!) And she is convinced that is the cause of my weakness and numbness in my arms.  Upon the return of our trip, I had my Nerve Conduction Study.  I was sure it was a waste of time since they had already found everything else, but they found and gave me another diagnosis which is a fancy term for a chronic pinched nerve caused by damage to the structure in my neck.  The vertebrae on each side of the disc that is hanging out is degenerating. And I'm not sure how that will play into my Akylosing Spondylitis - or maybe if it's part of it since that causes your spine to fuse together and you lose range of motion in your neck.
In my neck... sigh....

This past year has just been one thing after another after another.... after another...  and I'm only 35.  I grew up with a single mom and have never been the kind of girl who can't get things done on my own.  Perhaps that isn't always a good thing... maybe not always a good heart attitude... but if I want a piece of furniture moved or something fixed, I have always done it myself.  I have always been strong and able.  I have been a gym goer since I was 15. Carrying babies on both hips was never a problem.  Now I have trouble carrying one... I need to ask for help to move things at all, to garden, to pick up things that fall to the ground in front of me.  It's like being perpetually 9 months pregnant with no due date and no beautiful gift awaiting.  And I'm sick of it already.  I'm tried of everything being so close and feeling so out of reach - and yet I know this is the beginning of a long road of only more of the same.

I know God can heal me.  I know He could take it all away - but what I keep hearing from him is a similar thing I heard with Rachel... "It's not going away, but I will be with you..."

In the meantime, I have been living life in ways I wish I would have done years ago.  And maybe that is the 'beautiful gift' I'm gaining in it all.

I try not to regret my past - the years I wasted drinking and doing drugs in dingy houses thinking I was having fun. Maybe even really having fun.  I had a lot of laughs.  I would have rather had real friends, sunsets, life experiences that weren't illegal!  I can't help but wonder if all the amphetamines I did caused my aneurysm (another thing the first neurologist was incorrect about) or if maybe one of my many fights was the 'trauma' that caused my syrinx... What did I trade for 'fun'?

I try not to regret the years I have wasted running the rat race being too busy for my own good - or for the good of my family.  It wasn't all bad... I've done some pretty huge and amazing things.  I've gotten us all to thousands of appointments, I've held jobs - even brought 4 kids with me to work, I've signed us up for classes, I've stacked days full and accomplished a lot all while baking cookies and homemade gluten free bread.  It's not like I was busy with useless things.  Some of it is stuff that has to be done.  Just maybe not all at once.  I would have rather sat down and played a game with my kids, had coffee with friends without cleaning the kitchen, gotten more sleep, slowed down and took in each day.  Why can that only happen on vacation??  What did I trade to put those checks on my 'to-do' list?

I try not to regret the years I have wasted in front of a screen while laughter and playing went on right behind my back and I missed it... how many times have I made my children 'wait a minute' that turned into 30?  How many times have I needed to do that 'one last thing' while they needed me?  How many times have I put people I have never met - or topics not as important - before my family?  How many times have I sat with my kids in a waiting room and looked at my phone instead of them?  Thank God I can't afford an IPad because that would have been even worse!  I would have rather watched them, showed them I cared about the book they liked - and read it to them, let them sit on my lap, helped them with whatever was their most important thing at that moment, even if it seemed small in my world. What have I traded to be 'logged on'?

It's hard to know I could have had so much more and I forfeited it.  Not all for bad things - some very good things... but I wish I went for the better things.

So, while it may appear that I have disappeared into a low place, please know that I have not.  I'm actually in a good space - as hard as it may be - the space where I understand that this moment is all I have and may be all I get.  I thought I knew it before, but let me tell you - letting go of my daughter so she can spend eternity in heaven with my Lord is not nearly as hard to think about as the idea of leaving my children in this scary world without me - especially when I know that the truth of heaven doesn't erase the pain of death or the absence of a person you love.  And if that is going to be part of their story - if they will have to say goodbye to me and visit my grave much too young, I am not going to steal their time with me now.  If I could go to great lengths to do everything I wanted to do with Rachel while she was here, then it only makes sense that I give my kids that same gift with me while I'm here.  It's not a duty, it's a blessing.

That being said, blessings are calling - life is going on behind me.... and I'm not trading it for anything.


Friday, September 12, 2014

2013 Photo Book

I finally got around to making a photo book of our vacation last year.  I make a book each year and it's the only thing I've managed to keep up with as far as photos and memories go as we have added children to our family.  I had a coupon for a free book that expired at midnight, so I wasn't able to make it detailed and cute like I usually do, but was actually kind of liberated by being able to let go of my overachiever perfectionist style and just get it done.  So, here it is... nothing too fancy, but we won't have a gap in years on our bookshelf!  And I can't believe how fast the kids are growing.  Much too fast for my heart.  Of course God had "Rachel" all over this trip as usual....


Saturday, September 6, 2014

The Good Stuff

I did hear from the doctor on Tuesday.  I thought he would have new news for me, but all he did was confirm it's a brain aneurysm.  It's not big enough to operate on, so he said we will have a scan in 6 months to remeasure and if it's grown, he will refer me to a neurosurgeon.

He gave me no restrictions at all, which is good, but almost seems wrong...  I think I am going to get a 2nd opinion just so I can stop wondering if this guy doesn't know what he's saying.  I was going to wait until my follow up and then get another opinion based on his plan of action from there, but I was pretty unimpressed with the answers I got to some of my questions, so I will probably do that soon.

The kids & I have had an awesome week.  Our summer started late (post-race) but we are thoroughly enjoying it now!

Yesterday Matt came home saying we were going out for a while and asked what I wanted to do.

"I want to run" I said.

He looked at me sideways and repeated that back to me with confusion....

"Yes, I have wanted to run a 5K since after I had Rachel and between being pregnant or recovering from a baby and now my physical pain, I have only ever done it once on the treadmill and I want to do it.  The doctor said I can do anything I want to and that's what I want to do....."

And he humored me -  LOL - and brought me to the track at the highschool.

Being the overachiever I am, I planned on a mile, but in my head was thinking maybe we could just slam out a 5K on our first shot....  nope, we made it 3 times around the track and there was walking on both ends to warm up and cool down, so we probably only ran 1/4 mile.  But my knees don't hurt today, which is a miracle all in itself!

I'm all done waiting until ___(fill in the blank)___ to do things.  I want to run a 5K and I'm going to while I still can.  I don't know what the future holds and I don't want to have any regrets.  Time is something you can't get back - and wow, it goes fast.

Sam needed a piggy back walking home from gymnastics the other day and Desirae's flip flops were hurting her feet, so I traded her for mine and, wearing flip flops a size too small for me, picked up my boy and carried him until I couldn't carry him anymore.  Both of them felt so loved by these simple things.  That did hurt my knees, but it was worth it.

I've had coffee with friends, long conversations on the phone, sweet time on my knees and in God's Word and all sorts of hugs and kisses from my babies and my husband.  This is the good stuff.

Isn't it just like God to use something hard for my good?  Romans 8:28 was the verse on our wedding favors... and all we knew at that point is we were very unlikely to succeed given our past and where we came from, but we knew that God had brought us to that very moment for a purpose and He would continue to care for us through the less than perfect circumstances bound to eventually come our way.

He always has.  He is now.  And He always will.


 Romans 8:28

And we know that all things work together for good to those who love God, to those who are the called according to His purpose.

2 Corinthians 4:16
Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day

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)

While I understand that you are only trying to make me feel better, dismissing my feelings doesn't make me feel better at all.

Okay, so tell me the truth...

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 bringing 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'..."