My Chains are Gone

Today marks 12 years that I have been free from the chains of addiction....

I've recently heard that there are people around me who are being misinformed about my past.  I personally think my past is colorful enough without having to make anything up. I'm surprised anyone would believe it since I'm not exactly a private person.  I'm all for sharing the darkness that God removed from my life. (and the darkness I still struggle with, too. Because I am far from perfect)  I'm not proud of it, but I no longer carry shame either.  So, just in case anyone is wondering this,  I am not and never was a prostitute - and I met Matt after we were both clean, so no, he wasn't my drug dealer pimp.  Yes, we both had drug problems. Yes we met in rehab, yes we both did jail time. (all before we were believers)  And yes, we both have been rescued from that and don't ever want to go back. Yes, we take the Bible seriously.  If that makes us "Holier than thou", I'm okay with that.  I'm not ashamed of the Gospel that saved my life.

I want so much to pour my heart out on this day over what God saved me from. But I'm so mentally and emotionally preoccupied - and I know I've said it all before on different days - that I'm going to just re-share a couple of old posts that came to mind.  I'd love it if you'd take a few minutes to read them to truly understand what today means for me and what God has done for us.  I'd also really love it, if you have any questions, that you would ask me directly.  I promise to not be offended.  It's a lot worse to hear that everyone is believing lies than it would be if you just asked me. 

So, there were two posts that came to my mind today.  One is titled "Jesus Christ" and it's interesting that I recently posted that on the day of Jay's stroke, His name - Jesus Christ - were the only words I could utter....  Then, the other day on the "Pray for Jay" Facebook page, I wrote Psalm 116 - and it is quoted in the post titled "My Dirty Laundry - Washed by God"where I talk about the end of my battle with drugs. 

Both Desirae and I are in the video I posted at the bottom of that post... if you don't have time for the whole thing, I'm at about 3.5 minutes and she's at about 6 minutes into the film.  On my part, I am standing in front of the jail where I was sentenced to and on hers, we are here and it's me, Matt, Isaiah and Sam in the background... they were still so small...

I do mention in one of these posts that I had fear over the fact that some will take my willingness to be transparent and use it against me for their own motives.  I got a little sad when I read that because I have never experienced that to the degree I am feeling it right now - and it's hard.  But I just keep holding on to what I know to be true....

My life was horrible.  And even with the pain I feel in the trials I endure now, it's still so much better than it was when I didn't have Him.  And that is all because He pursued me, made me His and He is stronger than any stronghold I have ever had. And He is bigger than any enemy that will rise against me.

Someone told me yesterday in an attempt to make me feel better about my niece, "God doesn't give you any more than you can handle" and I strongly disagree.  I think He doesn't give me any more than HE can handle....  and exactly that which will help me to remember how much I need Him.  Because without Him... I've got nothing.

My Chains are gone

I've been set free

My God, my Savior

has ransomed me

And like a flood

His mercy reigns

Unending Love

Amazing Grace.

A Long Week

This week has been long.  so long.

Last week at this time, it looked like a real possibility that Jailyn might not stay with us.  And through the last 9 days, we've had moments of great victory.  Little miracles....things we take for granted every single day....like the ability to wave.  We've celebrated each of these....and we've mourned the reason these things bring us joy - and what this all means for all of us and for Jay. 

I feel so void of words to describe this past week, but I realize that not all of my readers are on facebook, which is where we have been doing all the updates, so I wanted to give a run down for you here as well.  Plus, the facebook page is pretty busy and hard to follow.  I wish I had more in me to write about this more often, but I don't.

Jay started out last weekend okay.  We knew there was permanent damage to the right side of her brain and that she was paralyzed on her left side - but she was talking a little and interacting with her right hand.  Then on Sunday when her brain swelled, everything took a turn for the worst....the next 6 days were the longest days ever. Every time she would do something great and we'd be putting out a praise, something would go wrong and we'd need more prayer.  It's been such a rollercoaster. 

3 weeks before Jailyn's stroke - A day of swimming with cousins at Nana's.

York's Wild Kingdom, the day before school started.  We had no idea in just a couple weeks, she wouldn't be able to walk.

 

The neurology team met and they told my sister that Jailyn would never use the left side of her body again.  That afternoon, she moved her left leg!  We were all moved to tears over the thought of her proving the doctors all wrong....  proving that God is bigger than textbooks.... and we still hold so much hope over that moment.  But the next morning, she threw up, aspirated it and now she has a lung infection.  For days we have watched them suck thick phlegm out of her lungs with a tube as she has cried for them to stop.  Then we get to the point of taking out the breathing tubes and we were so happy.... until she spiked a fever.  It just seems like the ups and downs are so constant that we are all still waiting for the chance to take a breath. 

Tomorrow, Jailyn goes back under anesthesia, with the breathing tubes back in for an angiogram and hopefully the repair of the vein/artery in her brain to try to prevent a future stroke.  If the swelling is down enough, they will put the skull bone back on.  All of this is so heavy considering we just finally felt like things were coming to a place of steadiness.  Obviously, we want them to find the problem and fix anything they can - but I don't think any of us feel ready for anymore crisis.  Please pray tomorrow morning and in the coming days for this.

Since we started her Facebook page called "Pray for Jay", there have been over 1700 likes.  There are thousands of people all over the world praying for Jailyn.  She is going to be excited about that when she is more awake again.  At the top of the page, we have a photo that I took the day at the zoo a couple of weeks earlier....

And the other day while I was there, during one of her assessments, she showed us just how strong God made her.  And I have no doubt that He created her the way she is for this very trial and that He prepared her in advance for it. 

She couldn't even open her eyes, she wasn't breathing on her own, eating on her own or talking... but when we asked her to show us a peace sign.... she used every ounce of energy she had and got those fingers up in the air.  It was amazing.

 Her little brother, Caleb (5) has been staying with us most days and I brought him up to see her this same day.  He was nervous and stood in the doorway for a while before he would enter.  I took a short video of her letting him know that she knew he was there....  You'll hear me in the background telling her how strong she is and that we'll be taking her home soon.... it seems that is all I can say.  I just keep telling her we'll get her out of there soon...

The pink bear you see is one of two matching ones - she sleeps with one, Des sleeps with the other.

okay, so that is the short version of the facts....  now to try to say how I feel about this....

I'm not sure I really can.  Maybe I'll tell you what it's like in my house right now.....

As with any time that the frailty of life is right in your face, I started to question and think on my perspective...  my regrets...  my relationships.... who I love and who loves me.  I found myself in tears over and over as I thought about the regrets I would have if this were one of my children and I did what I do best... beat myself up over it for a while.  The good that came out of that is I've been sitting down more with my kids, taking more time to listen to them, reading to them more and trying to be a part of their world more.  I've been more patient. I've cared less about chores getting done and more about if they know I love them. 

In the meantime, my house has turned into a complete pit.  And I am a neat freak...  and I mean freak.  As in, when things are messy, it will literally drive me to irritation.  I've come along way in that since Rachel, but I have not left it behind, which is probably a good thing cause with this many people in the house, there is a lot of work to be done and if messy didn't bother me, we'd have a problem.  So, this past week, I could not have cared less about messy.  And it's been good.  But last night, I decided that I would clean.  I cleaned for 3 hours straight and it felt awesome.... but as I picked up the books, I noticed one of the magnet letters was on the floor....

I started to cry... Jay was always the first one to help when I said I wanted the kids to pick up.  One of the last times she was over, I went into my mudroom to find it completely cleaned.  I asked who cleaned it and she said "I did" all nonchalantly.  I didn't ask her to or even ask anyone to for that matter, she just did it.  She is just that kind of girl.

Tonight as I helped Desirae pick up her bedroom, I came across some news articles they had created.  They made up a news channel called "DJ News" (Desirae Jailyn News) and they had cut out photos from the newspaper and then re-wrote the stories.  I asked Des "Was Jay with you when you wrote this?"  And I watched my little girl fall apart.  She started sobbing - and so did I.  Desirae isn't really a crier - very few things make her cry.  But she is devastated over this.  Her heart is broken.  And as she tucked her face into my chest, my sadness was overwhelming.  Des mentioned we could get her a wheelchair for her American Girl doll... I cried harder... Jay will hate being in a wheelchair.  How can this really be happening????

In the background, I could hear the conversation between Matt and Caleb as he tucked him in...  "Jay told the doctors her name was Professor Poopy pants" he said to Matt. (which she totally did, she is so funny)  He talks about Jay all the time and how "Even though Jay was mean to him, he can't wait to help her learn how to walk again."

Sam has been walking around telling people about Jailyn's brain dying and Isaiah keeps asking questions about which side of the brain control what.  He's trying to think logically about it all and figure out what that means for his cousin.  I think my kids have had their fill of people they love having problems with their brains... I know I have. 

And me....  well, it's complicated.  I feel crushed with sadness.  Sadness for Jay, sadness for my sister, sadness for my mom, sadness for my kids and for Caleb. This time of year is extremely hard for me anyway.  I look outside and see my garden dying as the cold weather moves in and I feel Rachel's birthday coming.  I feel it coming and it feels wrong to even be thinking about it - and yet, I can't help it, it's heavy on my heart.  I feel all the memories of this season of my life 3 years ago.  Jailyn has always been the one kid to remember Rachel with me.  Haven't these kids been through enough?  Most kids don't deal with even a portion of what my kids and my sister's kids have been through in the last 3 years in their entire childhood. 

And I can't help but wonder why?  Why couldn't Rachel stay?  Why another huge trial for our family?  Will we ever get even remotely close to the way things used to be?  Or will we forever grieve what this stroke has taken from Jay, from her Mama, her brother, and the rest of us who love her?  Will we ever enjoy the things we were able to do together just a couple of weeks ago?  Will her and Des ever play in the pool together again?  How much pain is this going to continue to bring to all of us? If she makes it through this to come home, what kind of condition will she be in?

Yesterday, Jay had started asking questions (by writing). Her hands could barely keep up with her mind. The front of her brain has not been damaged so she has her ability to think... she is asking some hard questions to hear....like "Am I dead?" "Did I get hit by a bus?" "Did someone hurt me?" "Is this my fault?" and the hardest one of all... she keeps writing "why" and circling it.

That was the title of one of my very first blog posts.  "Why?"  And when I heard she was writing it, my heart just ached for her.  I know the feeling of wanting to know why - knowing full well that even if you do know why, it won't change a thing.  She has such a long road in front of her. 

I feel like I've been all over the place, but it's probably better than not writing at all.  I almost gave up about 20 times as I tried to write this.  And I'm sure it doesn't even come close to describing what this past 9 days has been like for us.  The only thing I know for sure is that God is good.  That doesn't mean I will like His plan.  It doesn't mean people I love won't die.  It doesn't mean that I will get what I want or that I will ever know why something happens.  It just means He won't leave me alone in it.

And I guess walking a path like this, that's about the best thing I could hope for.  Because this side of heaven, pain free will never exist.

I continue to pray for Jailyn's full and complete recovery.  I told Des I will not stop praying until that girl is running around with her again - and I won't. 

Friday

Friday was already a hard day.  I cried half the day over every day life stresses that were too much for me that morning. 

I don't even remember why I cared. It all seems so meaningless now.

That afternoon I got a call that will forever be embedded in my memory, just like the moment I heard my daughter would die.

It was my sister pleading with me to go to God for her....  "You need to talk to God right now, Jailyn's having a stroke" she said.

Things had been so hard here...  we've struggled in so many ways.... I was feeling pretty disappointed in God's plan and in some of His people....  and honestly, when she asked me to pray, I had nothing.

I remember saying "Let me pray with you now" which is I think the first time I've done that with her... I knew by her voice this was not a time to say I would and do it after - or to just rely on my humanness for conversation.  A 9 year old have a stroke??  I went on to pray and I was at a loss.  All I heard come out was "Lord, sometimes it feels like it never stops...." and as I heard my little sister interrupt and say "It never f-ing stops."  I was mad.  I was so mad at Him.  When is enough enough?  How much can one family take?  How much can my sister take?  She has been battling her own health issues and spent 5 days in the hospital herself the week before.  I had spent an entire evening just days before in tears worrying over if I was going to lose her to her Crohn's Disease.

I kept praying, because I had to.  What else was I supposed to do?  I don't know what else to do. What else could I offer her in that moment?  But I remember feeling like I just didn't even want to talk to Him.  That's not a feeling I'm used to.

Her phone eventually dropped the call and I couldn't sit here. I called Matt and he came right home and I drove up to the hospital.  On the way, I was making calls trying to reschedule a board meeting for Rachel's nonprofit that we had scheduled for that night and once I got to an area where my phone stopped working, it was just me.  Me and God and my thoughts.  I cried so hard.

The song played on the radio...  "When you don't know what to say... Just say Jesus"

I sat in the waiting room with my head in my hands and I just whispered the name...Jesus Christ.  Jesus Christ.  Jesus Christ. 

Within moments of seeing her, I knew it was serious.  She was screaming it hurts, it hurts.... she was begging for more ice on her head....  I asked her where it hurt and she said the right side of her head... she looked at us and said "Am I dying?"  We assured her she wasn't.... but I'm not sure we felt like we were being honest. I will never forget what she looked like on that bed. 

The. worst. moments. ever.

It took forever for the hospital she was at to decide that she needed to be air lifted.  I am going to say it because it's true - Huggins is the worst hospital on the face of the planet and I wouldn't step foot in there again for anything.  You'd be better off wasting your time driving in a car than there.  Actually, I would rather die in my car trying to get to a different hospital than ever go to that hell hole again.  They took a CT scan, saw nothing and insisted she had a migraine and gave her Ativan and shut of the lights.  For an hour.  She sat in a dark room screaming in pain as her brain died. 

They finally admitted that they weren't able to help her - I mean seriously, they can't even do an MRI - they don't have the ability to even give her the test she needed....  the test that hours later would show she had a massive stroke and her artery was completely blocked - and now she was completely paralyzed on her left side.

The last 3 days have been a nightmare.  I keep hoping I will wake up and it won't be true.  But it just keeps going.  Time keeps going.  The world keeps going.  And I don't want it to.  I want it to stop.  I want Friday back.  I want Jay back.

I woke up Saturday and called right away to see if she had woken up... she hadn't.  I hung up the phone painfully aware of how serious this all was and I thrashed around on my bed quite similar to the physical reaction I had to Rachel's diagnosis in the doctor's office 3 years ago....  why does life hurt so bad? 

Sunday we decided to go back to our church for worship....  I so needed to be there.  I needed to feel known and cared about and I needed to know that Jailyn was known and cared about there.  Everywhere I turned people were telling us they were praying for Jay.  I cried a lot, but I needed it.  Then after worship, I went down to change the baby and eventually my friend Mel brought my purse down... my cell phone had been ringing over and over during the sermon.  I NEVER bring my phone into church.  But I looked and I knew... I called my mom and heard another call I will never forget... "Something's really wrong, they rushed Jay in for emergency surgery. Her brain is swelling and her eye is fixed. Meg wants you there"  I looked at the two people standing near me and asked what I should do... within 20 minutes, we had Darla back here at our house with us to watch the kids and we were on the road.  Jill later brought some groceries and later Melissa and Carol came and stayed until we got home.  We worried about nothing except Jailyn and Meg.... it was amazing provision from God thru His people.  But what a long ride when you know every minute counts so much.

I want to end this with some really good silver lining.... some great God story or some line about how it's all His plan and His plan is so good.  I want to finish it strong with what I know everyone wants to hear.... but it just isn't there.  My sweet, precious, innocent, funny, soft-hearted, loving, sensitive niece is laying in a ice pack covered bed with a feeding tube, a machine breathing for her, half her beautiful head of hair shaved and her skull in a freezer so that her brain can have room for the crazy amount of swelling it's doing... holding on for life. Meanwhile, we're all on egg shells waiting for this to get past the point of critical so we can breathe again. And I watched my little sister bend over her bed and sink her head onto her daughter's  hand and cry with no answers as to why this even happened.  I listened to how Jailyn's little brother said he doesn't want to go to school because he wants to stay home and wait for Jay. I watched my Desirae sob for 2 hours as she grieved over her cousin, best friend and the closest thing to a sister she has on earth.  I've watched my mom break down over and over.  I've watched all the men in Jay's life... her dad, my dad, my stepfather, Matt..... all fall into tears over this unbelievable tragedy.  We're all running on too little sleep, too much stress, and a ton of tears....  and there isn't a silver lining.   And if you think you see one, keep it to yourself.  Because there are 5 words that I have heard come out of my mouth over and over and most people can't comprehend what it even means to think this, let alone live it....

We can't bury another child.

This can't be real.... how can this really be happening?  I can't fully comprehend what it all means yet and I'm afraid to feel the feelings that will come with that.  It hurts so much.

and since I have nothing more I can say.... I just keep saying "Jesus"  I'm thankful that even though He is fully aware that I am completely upset with Him allowing this to happen, He still remains faithful to carry me. because I can barely walk.

Desperate for Prayer

I am desperate for prayer. my 9 year old niece has suffered a major stroke. her right carotid artery is blocked and the right side of her brain looks like it's dead. She is paralyzed on her left side. She is non responsive. They think she might have had an undetected heart problem. The doctors can't confirm that she will be okay. Please pray for a miracle. No 'sending good vibes' please.... PLEASE carry this child to the feet of Jesus in real and fervent prayer. We need a miracle. Lord Jesus please heal her body.....

I always talk about how Rachel is the 1st and last thing on my mind each day.  Last night and this morning, it was Jailyn Rachel. (her middle name)  Teetering between "this can't be real" and to "what the fuck are we supposed to do if this little girl doesn't make it?"  to  "how will my daughter possibly be able to take this?  Hoping in between that this is all either a bad nightmare or that she will come out of it with some physical limitations, but still be with us.  The thought of having to miss her too makes my stomach sick.  God please don't take her from us.

The weight is the heaviest weight I have ever felt in my entire life. I cannot begin to imagine what my sister is feeling.  Please pray for her too.

Until Then, I Ache

Matt was home from work again yesterday so we ceased the time and took the kids out to pick pumpkins.  It was perfect weather and Ezra's first time at our favorite orchard (outside my womb).  He did what Ezra does and slept through the entire thing in my carrier, but I'm positive he loved it :) And having him strapped to my chest made the day that much better for me, too. My heart is so full of love.

Before we went, I was trying to show the kids pictures from our time last year.... it's still amazing to me that if I Google "Baby Rachel's Legacy" and add a word like "pumpkins" I can pretty much find any post I am thinking of... but the one that came up was our trip to the orchard in 2011, before Asa was even born.  I had remembered that trip in my mind as last year's...  I hate how fast time is flying by - and how I feel like I miss so much while I deal with all this heavy painful crap.... and the fact that there is no way around it.  They are growing up so fast.

But the part that made me smile is remembering that it was the first letter of everyone's name on our pumpkins last year that made us decide that our next baby (who I was not pregnant with yet, but expecting) would have a name that started with "E".  And probably within a month from that time, our little E was on his way...

And I have to say it.... although I am praying for a bit of a baby-making break.... as I placed our pumpkins out this year - along with the big one that represents Matt & me (and says "Thankful for our pumpkins") - I couldn't shake the feeling that this isn't all of our pumpkins.  We're missing an "E".

The yellow ("dandelion") mums are for Rachel. 

When we first got to the orchard, I bumped into a friend I used to work with at a salon in Dover...  she had her new little girl with her too.  We talked for a few and then I looked around to account for all the kids and said "Who am I missing?"  Even when they are all there, I feel the empty space that belongs to her alone.

My heart sank.  I kept smiling as we said goodbye, but inside I felt it.... I am missing someone.... and as we headed off to the pumpkin patch, with all the excitement and smiles, I missed her.  so. much. But nobody else would have known it.  I've become used to the fact that my pain and joy must coexist - and it does, sometimes quite beautifully and sometimes... no so much.  But it always does.

Often I wonder if I feel like our family isn't complete because Rachel isn't here or if it's another child we have yet to meet.... and then I can't help but wonder if it is another child, will we get to keep him/her?  Will it be one I birth or one we adopt?  Will I know when we're all here?  And oh, how I hope we all meet back up together there.... 

Nothing is simple in my mind anymore.  A simple photo holds so much emotion and heaviness.  I smile over the children I'm surrounded by while I ache for the little girl who never got to come here with us.  I tried to include a pumpkin in the picture to represent Rachel - but the kids kept moving around and Asa decided to sit on hers.... I later noticed in the picture that he's wearing his sweatshirt with the "43" on it.  I guess we'll count that as her representation.  Have I mentioned I miss her??

my love

We left and headed home, running late as usual... the kids had gym class an hour later and so we rushed home.  They changed while I made sandwiches and I sent them on their way with Matt.  I put the babies down for naps and the house was all mine.........

I did a quick exercise video, I made phone calls... I got the house cleaner than it's been in a long while.... and as I wiped the counter down, I had a flash back....  I really do think this is part of post traumatic stress disorder or something... it was so fresh in my mind, I felt like I was standing in that exact moment again.

It was the week she died.  Matt took the kids out and I decided to clean.  read post here  I was cleaning the same portion of counter when I came across a CD that had the song a friend wrote for her on it. (now called "Rachel's Song")   I put it in and fell apart on the floor.  That was probably the first time since the moment we got her diagnosis that I totally lost it emotionally. 

As I wiped the counter down again almost 3 years later, with a house void of the sounds of children, I saw that moment... that hour... in my mind.  I felt the pain.  I heard myself weep.  And this might sound strange, but I got the urge to hunt down the CD so I could do it all over again.  I felt like it was my chance to let all this pain out.... to allow myself to feel, to cry, to burn in rage any way I needed to without an audience and without worrying about the little hearts I'm responsible to protect. 

I fought it and kept going... no time to cry, there is so much that needs to be done.  Babies only sleep so long and gym class will soon be over. 

I moved from there to the living room where I started by putting a few things away in Rachel's hope chest.  As I lifted the top, I saw her little purple dress with daisies on it at the top of a pile of clothes she never got to wear.  I sighed.... keep going Stacy.... keep going.... I closed it and started dusting it.

I have had a photo of her sitting on it for months that needed to be hung.  I looked around for where to hang it and caught a glimpse of 'the nail' in the wall.... the one that the dress hung on for so long.... the one that I can't seem to take down, although it hangs there empty.  I slid the picture onto it to see how it looked. 

There was no holding it in....

I fell apart. 

I didn't fall to the ground, although I might have had the wall not sustained me.  I leaned on the wall, hands above my head and sobbed for a minute.  I started pacing around mumbling something about how I can't believe my daughter is dead as I felt the ache in my heart fill my entire body. I shook my hands as if I would somehow be able to shake it out of me... to brush off the pain.  Oh, God, please make it stop.  I wanted to scream.  I hate this.

And then I grabbed a tissue and kept going.... except the tears weren't following my lead...  they just kept coming.  I wanted to cry.  I wanted to sit in it.  Actually, I didn't want to, I needed to.  But I wanted to get things done too.  I needed to get things done.  I don't get the chance to work without kids in tow very often. My list of to-do's has been practically drowning me and I knew that if I wanted to lift some pressure in my life, I had to get this work done while Matt was home and the kids were out.

I went out to mow the lawn and I cried the whole time.  And usually I would care if someone noticed... but I didn't.  I couldn't have cared less if my neighbors were all standing there staring at me.  It mattered not a bit what anyone might think.  I've learned over and over that most people wouldn't get it anyway....  I was a broken hearted Mama on a multi-tasking mission.  The harder I cried, the faster I worked.  I'm task-oriented.  It's a blessing and a curse.   But I guess I've also learned that no matter how many tears fall, no matter how much time passes, no matter how long I allow myself to "feel it fully" or maybe I should say to feel it alone....  it's always going to hurt.  Even if I sat down with the purpose of working through my grief and let it all out, it would never be *all* out - because it never will be.  There will never be a final tear over her until my final day on earth.  This is what makes me long for heaven.

I always said I knew that I'd never be over her, but living it long term is something completely different.  Feeling it.... not being able to escape it and this strange desire to never be able to.  I just had no idea.  Even after she died, and I knew the pain of losing my child,  I had no idea how hard it would be to do this long term.... for the rest of my days.... I couldn't comprehend it.  It might not always be that shooting pain anymore, but there is always a constant ache that never lets up.  It's like I'm always multi-tasking.  I live my life and I grieve.  I smile and I cry.  I move forward, but never forget.  I live for today, but long for tomorrow knowing that this place is not my home and this pain is temporary - and one day it will not be part of me anymore. 

I hold strong to the hope I have in Jesus.... to the hope of eternity....  to the promise of a life spent with Him - no pain, no sorrow.... all of Him, less of me.... and Rachel - whole and healthy.  I look to that day with great anticipation and endless thanksgiving.  I know one day it will be my reality.

Until then, I ache.  .

2 Corinthians 4:16-18

Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day.  For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.

My Todays

So, I've been feeling like a post is due... and yet I feel so unsure of what to say.

How many different ways can I say the same thing? 

And how can I share about how I keep Rachel in my todays without sounding like I'm stuck in a rut a refusing to heal?  I've been accused.  I've heard some think that my keeping a blog is 'dumb'...... are they heartless?  Maybe.  Or maybe they just don't get it.  I guess I can see why it would be hard for someone who has never put their own child in the ground to understand why almost 3 years later, I still feel like it was yesterday at times.  I wish I had their problems and no blog.

 When I was pregnant with Rachel, there were so many blogs I followed of people just like me.   But most of them continued writing for a little while and then a little at a time drifted from it.  Believe me when I say, that does not mean that they have found that 'healed' place that some think exist.... just because they aren't writing it, doesn't mean they aren't feeling it.  This is bittersweet for me - because while I know for a fact that so many moms like me appreciate that I keep writing and identify with so much of what I say and I'm thankful that I can be that safe place for them.... it is really hard to not have any to read from that remind me that I'm not alone... that I'm not crazy.... or stuck in a rut.... or being dumb.  I could probably find plenty blogs of people at my place on this journey, but honestly, I don't have time for the search or the desire to make new connections as strange as that may sound.  And to a certain extent I really just miss hearing from the moms and babies that I came to know and love through Rachel.  Because in my day to day life.... it's just me and my loss. And in a way, they are part of my journey with her and I hate that it all just keeps getting further away.....

And so on that note, I guess I feel like for blog purposes, I should say a little bit about what it's like to be a mom of a dead baby 2 years and 9 months after her death. So here it goes....

In my daily life, I don't shed a lot of tears over Rachel.  I know based on what I write, it may appear that I cry about her all the time, but I obviously don't write about every minute of my life - and this blog is where I process the hard stuff, so that is going to appear to be the way it always is... but it's not.  I cry when I need to, and sometimes I need to but I just don't have time.  I am blessed to have a very busy and full house, but it doesn't leave much room for grieving when I need to and that can be hard.  I find myself sucking it up and holding it in a lot just because it can feel even more lonely to let it out and have people look at me like they are confused. 

I do, however, think about Rachel constantly.  If I was to try to give you an idea.... I'd say every minute might be an exaggeration because I have so many other things I have to oversee... but it's pretty close.  I'm pretty sure she is still most days the first thing I think of when I open my eyes and the last before I close them at night.  When I wake to go to the bathroom in the night or to feed or change the baby.... Rachel.... In some ways that sucks.  In other ways, it's beautiful.  I guess I have never known a love and longing so deep before - and I'm so thankful to experience this.  I know with all that I am that knowing her and walking this journey has been a gift that has brought me so many blessings I could have never had any other way.  But I will say that on some days when I look at my wall and her photos or think of all I do in her memory, or get overwhelmed with all I have to do to keep her memory alive..... I just wish she wasn't dead.  Even on good days, the heaviness of her death lingers and I don't believe I will ever be separate from that.  It's part of me.

I've sat and looked at pictures and heard myself say "I can't believe she's dead."  and some days I really can't.  I can't believe that this is really my reality. 

Other days I think of it and it feels so real that the pain is unbearable....

Sill others, I wonder how it ever got to the point where I could make it through a day without emotion over her.

And sometimes I go from one to the other within moments of each other.

I hurt, I cry, I laugh, I remember, I rejoice, I regret, I love, I miss, I long for heaven.

Some times, as I do my every day stuff.... from cleaning - to groceries - to playing with the kids - I feel the constant weight of the fact that I will never be the same. 

I have been thinking a lot lately about when I was young.... the simplicity of it...  the way it felt to have and keep my first child... second child.... to only have the 'normal' motherly fears.  To do 'normal' things and have 'normal' conversations.  I grieve the ignorance that I had and hate that I can't still have mindless conversations like others can do.  Some days what I miss the most is the ability to dream about my future fearlessly.   To look at my children and not wonder if I will see them grow a day past this one. 

But I think the hardest part at this point is that I can feel her drifting away.  I know she has been gone for a long time, but I mean in the people who helped keep her feeling alive with me.  I used to get hundreds of emails/letters each week - and even some phone calls from strangers! - telling me of different ways she was changing the world - their worlds.  People were moved by her life and they couldn't hold it in.  I made some of the best friends I have through emails like that or by responding to cards I got in the mail....  If ever there was a day that I couldn't see God in this, if ever I felt she was being forgotten, there was always something, someone....  and these days that just isn't the case. 

To make it even more complex, I know that all those things were unbelievable and rare in the first place and I'm just so thankful for the time I did have them.... and I don't take any of that for granted or think I deserved it, because I know I didn't.  I don't want to come across as feeling entitled.  But it's so painful to see the change... to see fewer people remembering her -  to talk to people and know that they don't read about her anymore - that they have moved past an interest in how I am making it through my days.  Or maybe my writing is just not as interesting as it used to be.  Maybe my words don't leave people with the same desire to see what's next.  Maybe they are tired of 'listening' to me say how much I miss her.  Or maybe it's because it never had anything to do with my writing at all, but with what God was doing in the lives of others through her and he's already accomplished it.... Or maybe it's just because she is gone....she's been gone... she's not coming back.... and life goes on....

And besides, how many different ways can I say the same thing?

Loved in a Mess

I've been getting ready to start school with the kids and having a horrible time getting my small space in order.  I have Googled "how to organize Homeschool in a small space" in about every way possible and the search ended with the hopes of eventually either moving or adding on another small room because it just isn't happening any other way. 

I was completely revamping my school cabinets when I came across some hand mold kits that I had been sent from a support site while I was pregnant with Rachel.  I guess I planned to use them on someone else eventually, but we all know I'll never be able to do that.  I decided to read the paper inside the package and as I read it, I remembered why I never used that kit on Rachel.  I dropped it and went to sit on the couch in tears.

Isaiah followed me in and asked what was wrong...  I blubbered something like "I just didn't understand what to do with it then... I was so overwhelmed, I couldn't understand it... so I didn't use it... but I should have used it... and now I can't...." 

Des brought me a tissue and I picked myself up and kept going.... like I always do....  but later that night when the kids were asleep, I was back at the cabinet and realized that I was focusing on all my clutter and mess because the truth is that I am scared to start another school year...  this time with both Des and Isaiah officially in school - and another baby on top of that....with Rachel's birthday on it's way.

I put my hand on my head and looked at Matt "I don't know how I'm supposed to do this." I said as I started to cry again.  I feel so inadequate.  It's such an amazing gift to be able to spend my entire life with my children as they grow and learn.  I wouldn't want to be anywhere else in the world, but it's so hard.  So, so hard. 

As Matt encouraged me and told me that I could do it, I looked down to a game he had been picking up for me..... and may I just add that he didn't write this on the hangman game while I was in tears and saying I was overwhelmed.... he wrote it about 20 minutes before that when I was being a complete jerk and giving him an attitude because I was frustrated with the unbelievable mess I had created that day and the fact that it was now very late and my house was still a mess. 

How humbling is that?  He loves me.... He knows the depths of my heart and He loves me the same...

I serve an amazing God who I know will be with me through every good school day - and every messy one... when the cabinets are clean and the kids behave and act smart and the days when you have to wear shoes to be safe on my floor and I wonder if perhaps the children really could have evolved from apes. (sorry, super bad joke....)  But no matter what He loves me.... wow....

and I'm just that blessed that my amazing husband loves me too.  He loves me enough to stay up until midnight going through coats to make room for games in the mudroom closet so that my shelves aren't cluttered - just because that's what I need, even though it's not important to him at all.  He loves me when I'm unlovable.... I'm so glad God gave me him.

Lord, I am so thankful for my family... for how You love me through them.  Thank You for the opportunity to teach our children, for a husband who has the same vision for them as I do, and for being with me every step of the way.  Because oh dear Jesus, I need you.

And so here goes nothing.... 2013-2014 school year begins in 8 hours.... or 10 if Ezra wakes up just as I lay down :)

And of course, as I went to upload the photo... it was taken on the 3rd and the pic # ended in 143.  Always here.

Hard to Fly

Isaiah came in the house with a tiny bird feather....

I told him how amazing and cute it was and asked where he found it.  He said it was in our backyard and I asked if there was a baby bird out there too.  He said no, the bird must have just lost a feather.

After a moment, he said "Losing a feather is kind of like losing a son."
I asked "How so?"
He sat in silence searching for words.
"Cause it makes it a little harder to fly?" I asked.
He nodded.

Was that what he was really thinking?  I'm not sure, but it makes sense to me....

Stay Here

Today I was vacuuming out my van when Asa came over and asked me to take his helmet off.  He had been playing nearby me in the driveway the whole time I was out there.  I took it off and continued on cleaning.

A couple minutes later, I heard a car coming around the corner.  We live on a corner lot and people drive entirely way too fast around the corner.  I turned to make sure Asa wasn't near the road and all I saw was his helmet in the middle of the road.  I looked around and couldn't see him so I motioned for the truck to slow down as I walked out in the street to get the helmet out of his way.  The guy SWERVED around me so as to not have to slow down and I panicked not knowing where my little boy was and if this guy would pay any attention.  (did I mention he was on our street to read a meter... that's right, he works for the city....) 

I started calling for Asa..... nothing.

I walked around and checked in the neighbors yard.... nothing.

I walked further down the street.... yelling his name.... nothing.

I went back to the house and asked if he was in there with the others.... nope.

They came out and started running around looking in other yards.... No Asa.

About 3-4 minutes into this, my mind went from "He's right around here somewhere."  to "Where could he have gone?" to "Oh no, this is really happening."  Every moment felt like an eternity.

Finally after more than 5 minutes and me about to call the police, we heard his little voice calling from behind our neighbors house across the street.  Isaiah ran to find him.  When he came out with him, I quickly scolded him and then grabbed him up, hugged him and cried. 

Standing in someone else's yard, I stood there and clung onto him knowing that I had been gifted another moment with him.  I pulled away, stared straight in his bright blue eyes and told him.... "Don't ever run away like that again Asa.... You stay with us." I said firmly. 

He probably had no idea why such a fun adventure would make Mama cry like that.... He probably thinks I overreacted..... He will probably do it again someday...... but as I heard the words "You stay with us!" come out of my mouth I realized that I was crying over how little control I have over whether or not my children stay.

My heart heard the words and felt a little envious that I couldn't demand that of Rachel....  I wish I could have told her to stay.

Later at snack time, the kids were talking about how scary that was.  Des was saying that at first it didn't feel real and then after a while, she began to fear that he was really gone.  I knew exactly what she meant.  Isaiah added.... "At first I thought he was going to be gone forever, but then I knew that you would never stop looking for him until you found him."  I asked how he knew that and he said "I just know that about you."

He's right.... there is no amount of time that will ever "call off the search" in my heart for any of my children.  Even when I know they are already gone for good.... I look for my girl in every sunrise...every sunset.... and every moment in between....  I look for her in the clouds, in the garden, in the eyes of her siblings and Daddy.  I look for her everywhere we are.....

And so often I find that even though she is gone, she did stay here too.

How Long?

I've been putting this off....  because somewhere along the line, I bought the lie.... I started to believe it... and when I once in a while I feel like 'it' is happening to me, I think "it" should be here to stay. Like healing is a destination, not a journey.... Like one day you wake up and feel better.... let it go for good... Because that is what we're told is 'good for us'.... that's a "good witness"... that's the "healthy thing" to do....that is how we show that we believe in God and hope in eternity.....

I should be able to move on....

I should be better by now....

I should just be thankful for all I *do* have.....

And stop worrying about what I don't.....

Because, after all, she is fine....

She doesn't need me anymore because she is in heaven and totally happy without me.....

And why cry when one day I will see her again?....

And there is so much to be happy about here and now....

So, suck it up, your time to grieve has passed and now it's time to just smile....

Cause didn't you notice all the good God brought out of her death?....

And aren't you thankful for that?....

Don't you see that you have other children you did get to keep?....

And don't they make it hurt less?....

Are you reading your Bible enough?....

Praying enough?....

Having a positive enough attitude?....

The right perspective?...

Cause if you were doing all the "right" things, wouldn't you feel better by now?....


So, let me be clear that what I am about to share has absolutely NOTHING to do with an inability to love, cherish or care for my living children.  It has very little to do with how I feel about, or how much I trust in my God or His plan for my life.  It does not speak of a lack of faith - it doesn't mean I don't believe in or look forward to heaven.  It doesn't mean I am not grateful.  It doesn't mean that throughout my days I don't laugh, smile, or notice the millions of things I have that I don't deserve but have been granted by His grace alone.  And it doesn't even mean that I'm not positive that He is at work in everything that is happening to us.  So, please - if you aren't capable of reading the following without those judgmental thoughts about me - or prideful ideas about yourself and how you would do it better, or sending me an email attempting to exhort me to better "obedience",  just stop here - because I'm about to be real because I need to be - not because you will think it's "right" or impressive. 

I am so tired of trying to explain why all those things listed above are inaccurate.  I hate feeling like I fail God every time someone feels the need to correct my way of thinking when I talk about Rachel, like I have the wrong perspective or need to be reminded that it's okay that she is dead.  I truly believe people are just trying to help me.... but anyone who knows me - I mean really knows me - knows that faith is not something I struggle with... finding a silver lining is not something I am not able to do - I just prefer to do it myself!  (as do most people)  But some days, I just long for someone, anyone to just be human with me.... no advice or opinions or even a promise to pray...no spiritually fancy sounding pat answers... but to sit in it with me... like really care about how hard it is and not judge me for being disappointed with the trials at hand.  Because here it is.... I'm feeling a little like I think we could have used a bit more time off before another big trial.  I'm feeling like I don't actually care about what God might be able to pull out of this that is good... I don't want to do this.  I am thinking there is probably someone else that has had a less eventful couple of years that might be better able to handle this. 

Things are HARD right now.  My medical issues. Matt's hand and enough hours at work to keep us from qualifying for temporary assistance, but not enough to pay our bills,  Lots of little kids.  Changing our church.  Not being able to get to the cemetery or do things I want to for Rachel. Van repairs.  Medical bills.  Trying to keep up with the house, tons of doctor appointments for everyone and errands with 5 of my kids in tow, homeschool, failing miserably at keeping up with Rachel's nonprofit, and on and on.... I've grocery shopped once since Ezra's arrival.  Today I went there, parked and realized it would be a nightmare with Ezra and Asa both crying and I left (cause I'm getting smarter). There aren't enough hours in a day, but I'm not sure I'd want any more hours!  All of this is putting a lot of stress on our marriage and after we just had the best year of our 11 years together, that's really sad to me - I covet your prayers for us. 

I just wanted to come home with my sweet Ezra and sit and nurse.... I feel like he is growing so fast and I am missing it while I'm busy with everything else and I'm grieving that too. 

But I have found myself missing Rachel a lot lately.  I have been feeling really heavy hearted that I didn't do anything for her D-day anniversary this year.  I have been reliving a lot of what I went through when Asa was a baby now that Ezra is here.... and that was so, so hard.  I look back and cry for how much it hurt to have Asa right after I lost Rachel.  Matt says he thinks I would have had just as much pain had I waited longer before having Asa because either way, I needed to grieve what I was missing with Rachel - and in fact, he thinks that feeling my way through that might have helped me actually grieve some things I needed to - but wow, was that hard.

The other night I kissed Ezra's neck and it was warm and all I could think about was how cold she was.  That kind of stuff happened all the time with Asa.  I'm thankful to not be so overwhelmed with sadness for every step of this journey with Ezra, but I still feel like I am missing Rachel in a deeper way since he came, just not in such an outward way.  But with Rachel being older now, I also get much less recognition of her and that is very hard too.

Basically, it's all really hard - there is no getting around it.

Isaiah went to my Dad's for the day today and as he was pulling away in the car with him, he looked out the back window and said "See you when we have ice cream together." (they were coming back in the afternoon to get us for ice cream) and I started to panic...  my mind went straight to this might be the last time I see him... what if that's the last time I hear his voice? what if he never comes back? and I waved and signed "I love you" to him and him back to me.... and I fought the anxiety all day.

You see, what I've learned about God's plan is it has nothing to do with my happiness.  This is why I hate it when people say "don't worry, trust God" because I was trusting God fully when I put my little girl in the ground and covered her with dirt. And I've trusted Him ever since through the most painful experience I have ever walked through. I trust him, but I'd like to avoid that amount of pain coming my way again. But I know I can't.  People who trust God have horrible things happen to them every single day.  There was no guarantee when I became a Christian that my life would suddenly be 'good' - because HIS ways are NOT my ways. My idea of good isn't always His.  And I'll be honest...  I hate that.

Today I heard a song that I had heard on a drive to Maine Med while I was pregnant with Rachel.  I can still remember exactly what field we were driving past as I heard it for the first time that day....  As the lyrics played today, I could remember how I felt in those months before she came - and other than knowing now how her story unfolded, not much has changed.

Alone in a crowd.  Joy and sorrow mingled.  Time flying while standing still.

Now though, I struggle to even want to pray.  So today, as the song played, I just asked that He would hear the cry of my heart when I don't have the words to speak.  That somehow soon, He would bring relief in the form of assurance that He is in this.  Cause I'm just not feeling it.  I'm not feeling Him.  But I know He's there.

"Hold My Heart"
How long must I pray
Must I pray to You
How long must I wait
Must I wait for You
How long till I see Your face
See You shining through

I'm on my knees
Begging You to notice me
I'm on my knees
Father, will You turn to me

One tear in the driving rain
One voice in a sea of pain
Could the maker of the stars
Hear the sound of my breaking heart
One life, that's all I am
Right now I can barely stand
If You're everything You say You are
Would You come close and hold my heart

I've been so afraid, afraid to close my eyes
So much can slip away before I say goodbye
But if there's no other way
I'm done asking why

'Cause I'm on my knees
Begging You to notice me
I'm on my knees
Father, will You run to me, yeah

One tear in the driving rain
One voice in a sea of pain
Could the maker of the stars
Hear the sound of my breaking heart
One life, that's all I am
Right now I can barely stand
If You're everything You say You are
Would You come close and hold my heart

So many questions without answers
Your promises remain
I can't see but I'll take my chances
To hear you call my name
To hear you call my name

One tear in the driving rain
One voice in a sea of pain
Could the maker of the stars
Hear the sound of my breaking heart
One life, that's all I am
Right now I can barely stand
If You're everything You say You are
Would You come close and hold my heart
Hold my heart
Could You hold my heart
Hold my heart

Here's the video...

Her Weight in My Arms

My friend Lisa has a ministry called Birthweight Buddies, where she takes stuffed animals and fills them to the exact weight as your baby and then decorates it especially for your little one. 

I talked to her back before she officially started it about getting one for Rachel... and I knew it would eventually show up.... But I had no idea it would be today.  After the way the last couple of weeks have gone, I was a little nervous to open the box when I got home and saw it waiting on the table.  I honestly feel like I don't have it in me to cry anymore.  It feels like I just don't have time for it.  So, I usually avoid it.  And I knew if Rachel's Birthweight Buddy was in there, I would cry...

I opened the box, which was filled with a bunch of things for our whole family, and saw it immediately.  I pulled it out and the first thing that came to mind was that I didn't remember her feeling that heavy....

I couldn't remember what she felt like.....

Without even thinking about it, I turned the bear sideways and cradled it in my arm.  Matt was watching me, but was not aware of what the bear was. I stood there for a moment and just stared off as I planted my feet firmly beneath me wondering what it would be like if it was really her.

I closed my eyes and started crying.

And cried some more.

And some more.

I walked into the livingroom and sat on the couch and cradled this bear with a daisy in her hair and I couldn't stop crying.  Matt sat next to me in silence watching my lips quiver as her handprint necklace got covered with my tears on my chest.  I started to feel like a freak hugging this stuffed animal, but I wasn't ready to let her go.... so I closed my eyes and just felt the weight of her in my arms again.  Ezra was sitting near by and he started to grunt....  I'll sound crazy, but I'll admit it, I pretended she was here.

Oh dear God, it felt so good it hurt.

Matt started checking the bear out, commenting on how nicely made it was, and when he lifted one of the feet and felt its weight, he realized... "This is the bear?" he asked.  I just nodded and cried.

The instrumental song playing on Pandora caught my attention and I looked up to see it was called "December".....  the next to play?  The one I recently blogged about, "Quiet Beauty"....  the next?  "Blessings" by Laura Story.

"Blessings"

We pray for blessings, we pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
And all the while, You hear each spoken need
Yet love us way too much to give us lesser things

'Cause what if your blessings come through rain drops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You're near
What if trials of this life are Your mercies in disguise

We pray for wisdom, Your voice to hear
We cry in anger when we cannot feel You near
We doubt your goodness, we doubt your love
As if every promise from Your word is not enough
And all the while, You hear each desperate plea
And long that we'd have faith to believe

'Cause what if your blessings come through rain drops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You're near
What if trials of this life are Your mercies in disguise

When friends betray us
When darkness seems to win
We know that pain reminds this heart
That this is not,
This is not our home
It's not our home

'Cause what if your blessings come through rain drops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You're near What if my greatest disappointments or the aching of this life
Is the revealing of a greater thirst this world can't satisfy
What if trials of this life
The rain, the storms, the hardest nights
Are your mercies in disguise

 

 

I opened the rest of the bag for Rachel and was so emotional.  Beautiful little things that said "Rachel" so perfectly.... and as I looked at each one, I just cried.  I am so thankful when people remember her with me still.  I'm thankful that I have friends and family who "know" her for as much as they can without ever meeting her. 

 

I had put my Rachel Bear in Ezra's carseat cause the seat was sitting on the table and it seemed like a safe place for it while I opened the other goodies.  Des came in and asked about it.  She picked it up and put it up on her shoulder like she does Ezra. 

 

"It feels like a real baby." she said as her body naturally swayed as if to rock the bear to sleep.

 

I remembered being in church for weeks and weeks after Rachel died and I would catch myself swaying during worship - like my body knew I was supposed to be rocking a newborn.... and when I would realize I was doing it, her absence would burn through my soul.  Watching Des sway brought me right back to those days... 

 

"I can't believe she weighed this much" she said as she rubbed the bears back.

 

I just cried.

 

Somehow remembering what it was like to feel that pain so freshly while getting to hold a little bear with her weight and length - even with the tears it brought - was what I needed.  I put her little lamb with it, just like in the picture of me and her together - and remembered she is also buried with a little lamb just like it...

I had heard of people responding like this when they received their bears or other memorial items and always thought it was weird and that I'd never do that....well, I guess we'll add this to the list of "you don't know until you get there" experiences....because I totally did everything I didn't think I would without thinking twice - and I can't tell you how much  I needed it. 

My heart needed to feel her weight in my arms....and to cry over how much I miss it there. 

 

 

 Thank you, Lisa - you're such a blessing.  A true gift from Rachel to me.  I thank God for your friendship.

 

Little Girls Shoes

Every once in a while, little things catch me off guard.

Today it was little girls shoes.

For a moment I felt like I was right back at the beginning... at my first trip to the store after her diagnosis... when it became apparent to me that little girl shoes would always hurt my heart. I didn't stand in the isle and sob like I did back then, but I wanted to.

Some would call that growth, I call it survival.

Funny thing is that this photo isn't black & white, although it certainly appears it... but the missing color.... well, it makes sense to me.  That's how I feel.

Lily's Getting Her Stone!

Time is getting away from me... I wanted to write a bunch of stuff about this latest fundraiser we are doing to memorialize August 4th, the day 3 years ago that we got Rachel's diagnosis.  I had so much to say - so many thanks to give - so many blessings along the way.... but it's been such a hard couple of weeks, I just don't have it in me anymore to write it all out.  So, I'm going to just fill you in on the facts and leave out my feelings.

We asked people to donate towards a headstone for a little girl named Lily.  Her mom Hannah still owed $959 plus the install fees of $250.  She's been working at paying it for a long time and was half way there....

Like always, you guys rose to the occasion and helped me to accomplish what God put on my heart.  With the $143 I will donate from Rachel's account, we will be sending $823 to the memorial stone company to apply on Hannah's account for Lily's stone!  On top of that, I was unaware, but we finished up the fundraiser the day before her birthday, so I was able to give Hannah this good news on her 24th birthday.  It was a great birthday gift :)

When I shared with Hannah that we had a few donations on the first day, she said "It's amazing how many people love Rachel."  And she's right.  It's amazing.

THANK YOU to everyone who continues to support me on this journey, if even just by reading along and praying.  Thank you to everyone who pitched in to get us so close to paying off the stone for this sweet baby girl. Thank you for being an encouragement to me during a hard time and also an encouragement to Hannah as she is so blessed by your generosity.  Her mom was very thankful as well. Thank you for finding worth in the things that God puts on my heart.  Without all of you, I could do none of this.  Thank you for loving Rachel.  Thank you for helping her legacy to continue to bless others and to honor other babies gone too soon.

If you haven't donated and have it on your heart to do so, don't hesitate to contact me as she still has around $380 to pay it off and to get it installed.  It's not too late!  But I want you all to know how thankful both her and I are for all you have done to help. 

Stand in the Rain

I started a post the other day to share how our day on August 4th played out and ended up putting it down for the night, expecting to go back to it the next day - well, let's just say it's been an eventful week here....so I didn't get back to it.

Many of you know the stuff that has been happening from facebook... but I'll give the run down for those who don't.

I had been having some high blood pressures and issues with swollen feet and legs - along with horrible migraines earlier in the week.  On Friday, I went to the ER locally because my blood pressure was extremely high.  They sent me away saying I was fine.  The next day, I woke up and it was even higher.  I called Maine Med and they wanted me to come up there to be monitored for the day.  Again, they sent me home saying I was fine. (I've since been put on blood pressure medication after a follow up appointment on Tuesday - My obgyn thinks I had undiagnosed postpartum preeclampsia - please pray this all clears up soon... I just want to enjoy my new baby)

I was discouraged that I had spent the whole weekend in hospitals when I wanted to be getting things ready to decorate Rachel's grave on Sunday.  We stopped at a Walmart at 9pm to get fake flowers on the way home from the hospital....my heart was just aching to do something for her for this anniversary since I wasn't doing the race and I was running out of time...

August 4th started off like it did 3 years ago... me being naïve and thinking that the plans I had made would actually come to be.  I was determined to make the day special and light hearted.  I was determined to make it meaningful and enjoy our family time together.  I was determined to smile when my heart really hurt.  I guess not really much different than any other day of my life, but for this day - the 3 year anniversary of her diagnosis - I wanted it to be special in a way that would ease my pain.  Expectations can be so dangerous.

We left the house way later than I wanted to and decided we'd better get lunch first.  On the way, the song on the radio reminded me to keep the tears tucked away.... or else if I start, they might not stop.

"She never slows down.
She doesn't know why but she knows that when she's all alone, feels like its all coming down
She won't turn around
The shadows are long and she fears if she cries that first tear, the tears will not stop raining down"

I held them back, but a few escaped my eyes without anyone in my family noticing. 

We ate at Roger's Pizza with gift cards that Options for Women had sent as a welcome Ezra gift for us.  They gave us $30 and our pizza came to $30.43.  Our portion... .43 cents!  Imagine that, hi Rachel!   She's always with us everywhere we go....

Matt went in and ordered and asked her to let us know when it was ready and we waited outside to avoid the before meal craziness that always ruins meals out.  It worked like a charm.  The boys ran around in the grass, Des & I sat in the AC in the van and I nursed the baby so he wouldn't want to eat as soon as I was trying to.  When they called us in, the table was ready to go, the kids had energy out, the baby was content and we just prayed and ate.  It was all going so well. 

We decided to play a song on the jukebox.  I made a mistake... I picked "Don't take the girl"  The last part is talking about them having a baby and the mom was dying.... but as I listened along, all I could think of was my reaction on August 4, 2010.... "Please God, not my baby girl.... please let me keep her, please...."  and I had to fight the tears again....

"Johnny hit his knees and there he prayed

"Take the very breath you gave me.

Take the heart from my chest.

I'll gladly take her place if you'll let me,

Make this my last request.

Take me out of this world

God, please don't take the girl"

 

We gathered our stuff and went to Rachel's grave.  As expected, it was a mess as I haven't been in almost a month.  We started cleaning up and about 5 minutes into it, Matt sliced his finger open with his utility knife and was bleeding everywhere.  We left everything scattered all over the place and I brought him to the ER thinking he'd get some stitches and be on his way. 

I went back to finish Rachel's grave while he was waiting and I felt one drop of rain.... I said "ooh, it's starting to rain." and before I finished my sentence, it was a complete downpour.  I could not believe it.  Was God serious?  Matt's in the ER and I'm stuck in the rain all by myself with a van full of kids trying to clean up my daughter's grave....  I know I can't always have my way, but why did God have to take away the sun that had been shining ALL DAY until that very MOMENT when I was there and trying to make it pretty?  Why all this on August 4th?  I tried to put a spin on it... "There must be a rainbow somewhere" I heard myself say... there was sun all around, it was just pouring on me....  "I just can't see it" I continued softly.... and that was it - I started to cry.  And I couldn't stop. "Ironically" on this video, all you can hear is the first part.... there must be a rainbow somewhere....

I got a call from Matt saying I shouldn't wait for him, to go home because he had to have an x-ray and see the hand surgeon because they thought he hit his tendon.  I cried harder.

I cried for the longest I have cried since I first lost Rachel.  I could not stop.  It was hours - six of them to be exact.  And if I really put a reason to why I was crying?  Well, it was because all of my plans were falling apart in front of my eyes and there was absolutely nothing I could do about it.  The same feeling I had 3 years before on this date.

I remembered the song from earlier....I knew once the tears started, they'd be hard to stop....the rest of the lyrics ran thru my mind...

So stand in the rain
Stand your ground
Stand up when it's all crashing down
You stand through the pain
You won't drown
And one day, what's lost can be found
You stand in the rain

 

I feel like I've been standing in the rain for 3 years.  I've put so much effort into dancing in it... making it lighter... more carefree...more beautiful. But this day, all I could do was stand.  Survive it.  Believe that the storm would pass.  But I just couldn't dance in it.

I pulled myself together long enough to get her grave looking as pretty as I could without Matt's help.  The sun came back out and I was able to get a photo of Ezra's first time at his sister's spot.  And maybe this is all part of my 'dance'....  maybe dancing in it is less about knowing the steps and making them look easy and more about following His lead....even if I jumble it up at times.

I left 3 daisies for her - one for each year since I began this journey with her.  Unfortunately, I noticed that we also have some blood stains on our stone now (right by "girl") where Matt's cut apparently sprayed.  I'm hoping I will be able to get it off the next time I go since this photo was taken after the rain storm and it was still there.... 

So, Matt returned home after his ER visit with news that he might not be able to use his hand for up to 3 months.  Neither of us saw anything like this coming.  And honestly, it took a couple of days to come to terms with what that would mean for us.  And since we still have no way of knowing exactly how long he can't use his hand, we still don't know what this means for us. 

 

What I know is that I kept questioning.... "Why August 4th?"  As if it wasn't bad enough that I had to get the news that our daughter was going to die 3 years ago... or as if calling off her race this year wasn't heart breaking enough.... or as if I could really handle all of this on top of having a new baby and the financial stress we already had with our van repairs we need, along with all the medical complications I had been having....  I mean, how much did He think I could take?

 

And then I realized "Why August 4th"....  because August 4th might hold the reminder of the worst words I have ever heard in my entire life.... but it also holds the beginning of an unbelievable journey where God proved Himself faithful over and over and over again and provided in ways I never imagined possible and loved me in ways I never knew existed and surely didn't deserve. 

 

When I think of August 4th, I think how hard and heartbreaking it was - I know the endless road of pain ahead of me - and then I think about how on that day I had no clue at all how anything good could come of it - but He did it.  He made something good out of it.  He turned in ashes for beauty and gave me eyes to see it.  And when I think of that and how far worse losing Rachel has been than anything like what we're up against now, I know that He used this all happening on August 4th to remind me that He is in the details and He will meet us in this.  I have no doubt in my mind that He will.

 

I might still be a human being with real fears and feelings - and heck, I'm not even afraid to admit it - but believe me when I say that if there is one thing I have learned through the death of my sweet little girl, it's that God never fails me.  No matter how hard the road.  I've also learned the hard lesson that just because I have faith in Him does not mean that I will get what I want or that He will make everything in my life just go smoothly and without pain.  But somehow He grants me peace even so... and somehow it is all still well with my soul.

 

So, I continue to stand - with arms high, heart abandoned, and soul surrendered - as I walk through each day of a plan unlike my own.  Knowing that everything He chooses for me is for my good and His glory....I stand firm in His promise that this is all temporary, that heaven is my real home - and secure in the knowledge that even if I am crying like a baby when it's pouring, He loves me and understands.  I'm so thankful to serve a God Who is aware of our suffering and has grieved and cried real tears too.

 

I heard there was a double rainbow that day....Although I looked for it, I couldn't see it from under the dark cloud that hovered over me, but I know that many people who did were thinking of me and my girl and God's faithfulness to us through our trial.  Rachel isn't forgotten - and I'm okay with standing in rain to make sure that she isn't.