Wednesday, March 4, 2015

She Still Does

I haven't written in a while, but that doesn't mean I don't have anything to say... just have no time to say it.  I feel like blog posts are constantly running through my mind, but to find the time to sit down and express them in words is hard.

I have a lot to share about our recent road trip to Florida... we drove all over the East Coast with our gang and it was AMAZING.  We had a few very meaningful and special visits with friends I had made through Rachel but had not met yet and my heart was so full and so thankful that I honestly almost can't put it into words...  but I really want to try!!

So this post is more to just break the writer's block I've been having and get my fingers moving again... I hope I get to sit down soon and share with you all everything on my heart from that trip....

Until then, here's a real quick update on my Rachel journey....

Lately, I've been feeling relieved of some of the weight of sadness.  She is never more than a single thought from my mind, as she always has been, but I mostly feel just the missing piece of our family... the feeling of being incomplete, but not the feeling of wanting to cry or a desperate need to do things for her.  Not that I don't still cry - or still long to care for her, but it is different (right this moment - always subject to change!)

I find myself able to look at and buy girl clothes for my friends' babies without it hurting.  I do regularly make loud sighs at cute girl clothes in the stores though - mostly just out of a never ending desire to be able to dress up a little girl again.  Part of my grieving process has to do with the fact that I always wanted Des to have a sister - someone to do life with in a different way than you can with brothers (hopefully)....  and realizing that there is a good chance now that it might never happen.

I've been feeling better health wise - I don't know how much I've shared about my health or my appointment with the naturopath that my Rachel-given friend from Switzerland had paid for me to see, but my blood pressure got immediately better with the change of vitamins (Doctors would have NEVER figured that out!) and it has remained good.  I'm currently working on weaning myself off of them and am now on only one.  My pain levels have been much better although not gone, but I don't feel 90 anymore and am keeping up with my kids and the house much better, so I'm very thankful.  Every once in a while I feel a portion of what I used to feel like all the time and can't believe I was still functioning in that amount of pain.   But you do what you have to do...

I do have some other new stuff happening with my heart and have a stress test and Echo coming up.  My symptoms seem to be better since stopping one of the bp meds, so I'm hoping it was side effects.  I'm still regularly frustrated with the absolute ignorance of doctors - like why nobody picked up on the fact that my new symptoms lined up with them putting me on a new medicine... glad we have the Internet or I'd probably be dead already.  I'm waiting on approval for my next scan of my brain aneurysm - I was supposed to get it in February, but insurance has denied it and so I'm appealing it.  I'm not feeling overly worried about that now that my blood pressure is under control though... praying it hasn't grown when they remeasure, that would be a good sign for long term safety.

I'm amazed at how much Rachel has helped us.  She truly is a gift from heaven... If she didn't come and go, me and all of the kids would have so many unexplained health issues and the doctors would never have come up with MTHFR all on their own.  Because of Rachel, I am able to provide for and protect her siblings in a way I could not have done without her.  I am absolutely convinced that her life and death had a much bigger role in our well being than I ever realized before.  I always knew she had given me a richness in my relationship with God I wouldn't have otherwise, but now knowing that He also used her to bring all of this to light, I am brought to tears regularly thinking about how she has helped my other children. I've also had a few friends come to find out they have the MTHFR and have found relief from their unexplained health concerns as well.  I'm just constantly in awe of how God provides.  It doesn't always look like provision - and it can hurt like crazy, but He is so faithful.

My little girl continues to make this world a better place to live... I continue to find more and more ways in which her short life has forever impacted mine for the better.  I continue to be more and more thankful for her - I smile every time I think of her.  She is so loved... so wanted... so missed... so appreciated...  and so perfect, just the way she is... exactly where she is... precisely who she is....

She is an amazing picture of God's grace and provision.

She is part of His plan.

And His plan is eternally good, right, true and beautiful.

She is my girl.  My tiny dancer.  She brought me hope, still does.  She brought me Joy, still does.  And just like she showed me more of God then, she still does.

Saturday, February 7, 2015

Gift Shop Puzzle

We went to my niece's birthday today at the Seacoast Science Center.  The kids were all busy, so I decided to take a peek in the gift shop.  I love gift shops, but it was an odd decision since I didn't have my wallet on me.

I was looking around when a little boy came up and practically tossed three puzzles at me.  I thanked him for being so generous and put them back on the shelf.  As I did, I noticed there was a heart made out of daisies on it.

That combined with the fact that it was a puzzle ("Always a piece missing") had my heart swelling with thoughts of Rachel.  Just as I put the last one back, this little boy threw his arms around me and wouldn't let go!

I heard his mom say "Aww... look, he's hugging her!" and I leaned in and hugged him back.  He said "Bye" and waved at me and they walked off.

I stood there in total awe.  I just had to tell them about Rachel.

So I followed them over and said "I feel like I should tell you this, although it feels odd to say... but my daughter Rachel died shortly after she was born and daisies are her flower... this year on her 4th birthday, I wore a shirt that had daisies in the shape of a heart that a friend gave me.  That puzzle over there, that your son just gave me, has the same thing..."  She followed me over to see and was in complete amazement when I told her "I feel like the hug your son just gave me was straight from heaven."

I wonder if that thought will stay with her.... I wonder if she will tell other people... I wonder if she knows how incredibly blessed she is to tuck him in tonight.... or how much I wish I could tuck Rachel in tonight....

If I had my wallet on me, I would have bought that puzzle for our next trip to Maine this fall.  But I didn't, so I took a picture.

I didn't know why I was in that gift shop.... I really had no good reason to be in there.  But I walked out of it with the biggest smile on my face and feeling like my girl was right there with me.  I walked out wanting to tell everyone about the hug I just received from a kid I would never see again and about the daisies in a heart shape on the puzzle.  I didn't though, because it was one of those times when words seemed inadequate.  They still do, yet somehow I think you guys will get me.


Wednesday, February 4, 2015

Be His Hands and Feet


I got a text from my friend Sarah, whose daughter Naomi is buried near Rachel with a picture of how high the snow was over the girls' graves.  I was trying to locate a cordless electric shovel (if one even exists!) to try to make it more doable... but nothing... then I put out a request on facebook asking for help shoveling it.... one friend said she would try to stop by.  So then we decided to drive our snow blower into our truck... This would be reason # 430 that I LOVE having a Suburban!  





When we got there, our friend Naomi who used to shovel Rachel's grave had already cleared her out a nice big spot... The cemetery was so backed up with snow everywhere that even the roads weren't good to drive on... but not Rachel's spot...  Felt like the old days when I would pull up each week and feel the relief of provision.  We had a couple other graves we wanted to help with, so we pulled the snow blower out and Matt got to work on those while I changed the decorations at Rachel's to our February theme:  Pink kissing ball and flowers we had at the hospital when she was born that also 'just happen' to be ones in our wedding.  Since we got married in February, I have put these on her grave each Feb since she died.  I also hang her hands in a heart flag that Lisa made for her.  I have a matching flag and kissing ball here too.


clearing a spot for my grandma to be able to get to her parents stone

clearing Naomi's spot down so you can see her name plate.

I had to bring boiling water to get her tree out which ruined the base I usually put it in :(
But it's out and her pink stuff is in so it's okay.  

Love - Protects, Trusts, Hopes, Perseveres.
Love Never Fails

I've told you about the man who visits his wife and daughter's grave every Friday...
Of course I knew bc I was always there too.  But when the snow is deep, he puts their roses
in the snow by the road bc he can't get to their spot.
So we make him a path...  And come to find out, he is a fellow brother in Christ
who is not physically able to do this himself.  He now leaves us cards at Rachel's grave.


We clean off his girls' spot and reposition all of the frozen roses because I used
to cry when I saw the extent to which people actually cared for Rachel's grave.  Naomi didn't just
do a quick shovel, she would shovel a huge spot and clear off her stone for me so it was perfect.
that's what I want to do for him.

Her coke bottle was still there, so I put it up in a snow bank for walkers to see.

Our work here is done.... and as morbid as this may sound, I think the fact that we spend so much special time together on these grounds, ministering to others and taking care of our spot will eventually be an amazing comfort when death does us part and one of us is under that same ground.  Not many people spend time together at their grave before the are separated by death... unless they share a plot with another family member.  I'm thankful for this, with both Matt and my kids.


So then because we apparently like to do snow removal... we stopped at my grandparents
and widened their walk way and cleaned off their porch... and left a little note in the snow.



It's important to me that I don't appear as though I'm sharing this stuff to tell you all about everything we do.  That is not it at all.  I share because as we are doing it, I am OVERWHELMED with thoughts of how many people did this for us and for how long.  I am totally enveloped in gratitude and thankfulness that just overflows into not just wanting to, but NEEDING to, do something similar for others.

I have no pictures for this one (I'm sure my friends thank me for this) but I have also recently paid forward a huge gift I was given through Rachel... my friend Dixie came and picked up our laundry every week for MONTHS. (until her washer died on her!) She brought it home and the next day returned it clean and folded.  It was such a huge blessing that now when I know someone is struggling, I immediately want to do their laundry.  This is totally from God, because quite frankly, I have a TON of laundry all by myself... and I actually can't stand doing it.  I do 2-3 loads a day just to keep up and that doesn't even take care of it all.  So when I offer to do 10 loads of laundry in a day for someone else, you can believe it's got nothing to do with me... and everything to do with the fact that God provided for me in this way and I want to comfort with the comfort I received.  And it feels awesome to do it!  But I can't take credit since it clearly wouldn't be MY idea!! lol.

So, my point is... well, two things... sometimes when people are in a rough place, we say a broad thing like "Let me know what you need"... and from my experience, it's really hard to pin point what you need when you are in that place... and even more awkward to actually say it.  My friends would have never asked me to take all their laundry home... and actually they both tried to talk me out of it!  It's hard to accept help.  So please, if someone needs help... be BOLD and offer something specific.  I texted my friend and said "Get your laundry bagged up bc I'm on my way over to get it."  And that is exactly what Dixie did for me.  If it's a dinner, call and say "Don't make dinner, it's on it's way."  if you wait for them to tell you something to do, it won't happen.

And the other thing I want to say is this... you have no idea how BIG your little act of kindness can be in someone's life.  You have no idea how long it will continue to affect people.  You have no idea what God will do with it, long after you are done with your service.  I know Dixie never thought I would carry on her blessing to others, but truth is, I would have never thought of it, if she hadn't done it for me!  And I would have never thought of it at the cemetery if Naomi & Brent hadn't done it for us.  But both are such huge and meaningful ways to minister to others, that seriously humble both the giver and receiver. 

So, who do you know that is struggling?  What simple thing can you do for them (without asking them if it's ok, bc they will likely say no to be polite!) ?  How would it make them feel?  Probably loved, provided for, humbled... How would it make you feel?   I'll leave that one for you to think about.  But I would love to hear what you chose to do as a way to minister to one of your loves this February.  Let's be the hands and feet of Jesus... not in words, but in deeds.

My journey with Rachel has shown me what it's like to be on the receiving end of that love... I had no idea how amazing it is to also be on the giving end of it until that love overflowed out of me and I can't help but desire to do things that will comfort others in the way I was comforted. 

God's plan for us to care for each other is a beautiful, simple, meaningful, and humbling picture of how He loves us.  So let's do it.  Are you in?

Monday, January 26, 2015

Beautifully Painful

We are expecting a blizzard here and today I went to Rachel's grave to get her spot 'storm ready'....

I have never had trouble getting her tree out before and of course today, of all days, I pulled on it to take it out and the top ripped off...  the rain we got last week froze it in place and no matter how I tried, I had to leave it there.

I took a few of her things down and brought them home, but tonight I found myself having an anxiety attack on the way home from a friend's house because I was thinking I should have taken the things hanging from her shepherds hook, because they likely won't be there when I go back with the winds we are supposed to get.

And tonight I find myself overwhelmed with that thought that has so often plagued me....

I hate winter in the cemetery.

I hate fighting against the weather and how the temperature has more say over what stays at her grave than I do.  I hate leaving her there in it all.

I want to pull all my kids and my husband into our home and hunker down for a storm and stay safe together.  I want to prepare cold foods that we can eat should we lose power... and I want to pull out blankets and all get under them to stay warm... TOGETHER.  All of us.

And instead I have to leave her, yet again, in the hard cold ground that won't even let me take her things home to keep them safe. And honestly, I get angry thinking about it... or sad... or angry... I don't even know what it is, I just know I hate it.

Yesterday at church, worship was AWESOME... I have so much I want to share about the songs we sang, but for tonight, one just keeps coming to mind....

It is "Mighty to Save" by Hillsong and the chorus makes it hard for me to stay seated, I am so filled with thankfulness every time I hear these words...

"Savior, He can move the mountains
My God is mighty to save
He is mighty to save
Forever, Author of salvation
He rose and conquered the grave
Jesus conquered the grave!!"

The ground couldn't hold HIM down.... and it can't hold HER down because of His victory over death.  

On these cold, hard ground, storm winds kind of nights, that's all I have to hold onto... and it is enough.  But I do believe this is the hardest day I have had in a very long time missing her.  I wish she was upstairs sleeping and I knew absolutely nothing of any of these feelings. I wish I never had to bring her there... or leave her there... or visit her there... or decorate for Christmas there.

I just wish she was here.  I wish we had different storms.  The kind that most people are worried about today - like power outages and having enough food.... Not grave decorations and trying to keep a dead baby safe.  It doesn't happen all the time, not even most of the time, but every once in a while, I yearn for the days before any of this.  The days when life was less complicated - and I didn't have crazy, irrational thoughts that actually make perfect sense.  Seems like an oxymoron, right?  Well, so is burying a baby... so is perinatal hospice... so is planning a funeral while pregnant... 

My entire life has become one great big oxymoron.... it's beautifully painful. 

Sunday, January 18, 2015

When He Came For Me

After my post yesterday, I shouldn't have been surprised by this morning's worship, but it did still kind of hit me hard....

When I was pregnant with Rachel, we sang to her each day...

Jesus loves you this we know
For the Bible tells us so
Little ones to Him belong
We are weak, but He is strong.
Yes, Jesus loves you
Yes, Jesus loves you
Yes, Jesus loves you
The Bible tells me so.

No matter what anyone else thought of her... Jesus loved her and had a plan for her life, just as she was.

And then at her burial, when the pastor was done speaking, we all sat in this awkward silence not knowing what to do next and I whispered to Matt... "Let's sing a song." and he announced we'd be singing a song together and everyone joined in with Jesus loves you.  With her tiny casket at my feet, I sang her one last song... 

"Jesus loves you pretty girl... but you already know that, don't you"  I was quoted saying in the paper when they wrote to tell the community how Rachel's life had gone.

This morning, the man leading us in worship, mentioned the song above... and then said we're going to sing another song about God's love for us... it's like the first one, but a little different...

Yes, I totally pulled my phone out in church and took a picture...
sorry!
Yesterday was the 14th anniversary of when I got arrested... for those of you new here and confused by that statement, Please Read This

And the extra lyrics in this version of Jesus Loves Me really speak to that part of God's love for me... Him coming for me when I was so far from him, totally against him...Lost, in chains, heart of stone, covered in shame... and how I could NOT run from him, even if I had wanted to.

He ripped me out of the darkness and brought me into the Light....(and I mean to tell you, He RIPPED me out!!)

He holds my heart... with His healing hands... He bears the scars... The rugged cross...My ONLY HOPE... My Everything.

14 years ago on January 18th, I woke up with a huge trial ahead of me... sober for the first time in years, facing 87 years in prison and carrying pain and addiction I would soon find out were not going to be easy to lose...  I can remember that morning clear as can be - my mom came over with the Newspaper, my name on the front page, and coffee and for the first time ever, she watched me smoke a cigarette... and then my sister lit one... and then my mom lit one... and we sat there smoking together for the first time....(yuk!) because what else could we do?  There it was in black and white... life was about to get real serious... maybe even completely end as I knew it...  but I never would have expected it would get BETTER!!  I never expected to look back and think on that time as the best discipline my Father would ever give me.  He was saving me from myself.  And he will go to ANY lengths necessary to get the attention of his children.  Any good Father would.

That Sunday, my mom brought us to church... a Catholic church that Alice went to every day for years... I didn't really hear anything out any of it, but I wanted to be there...  it never ceases to amaze me how even non believers somehow inherently run to God - or what they perceive as being "God" (the church or prayer - or asking for prayer) when the storms of life come.  It wasn't until a few years later that I came to know Jesus and was truly saved from myself and from eternity in hell, but it was that day that I believe God said "Enough is enough" and his pursuit of my heart began.

I'm so thankful He loves me... because some days my shame from my past and the lies of satan can make me think there is no possible way he could. (which without Jesus, there isn't!) But it's that exact feeling that keeps me where I need to be.. humbled at the foot of the cross... where I can come boldly before my God and He will help me in my time of need. 

Hebrews 4:16(NKJV)

Let us therefore come boldly to the throne of grace, that we may obtain mercy and find grace to help in time of need.


Here are the lyrics...

Jesus Loves Me
Chris Tomlin

I was lost
I was in chains
The world had a hold of me

My heart was a stone
I was covered in shame
When He came for me

I couldn't run, couldn't run from His presence
I couldn't run, couldn't run from His arms

Jesus, He loves me, He loves me, He is for me
Jesus, how can it be, He loves me, He is for me

And it was a fire
Deep in my soul
I'll never be the same

I stepped out of the dark
And into the light
When He called my name

I couldn't run, couldn't run from His presence
I couldn't run, couldn't run from His arms

He holds the stars and He holds my heart
With healing hands that bear the scars
The rugged cross where He died for me
My only hope, my everything


Saturday, January 17, 2015

If You Think I Love Her...

I don't get to Rachel's grave much anymore.  Most of the time, it doesn't bother me... but when I have the need to get there, it's a *need* that I can't ignore.

I've been feeling that lately, but it's just hard with all of the kids and my very few trips that way.  I used to make a special trip every Friday - for YEARS... but after Ezra came, my life has just been harder to keep up with.  I know Rachel is okay with that.

Today I had to drop Des off at a party and I decided to take the ride over after.  It's freezing out, (11 degrees!) but in the car the sun was warm on my face and the music on the radio was bringing me to a great place of peace in worship.

I called Matt on the way over... I was afraid to go because we've had snow and I haven't been there in a few weeks.  I didn't have a shovel so I was afraid that I'd get there and have the need to take care of snow and not be able to.  He encouraged me to go anyway.  So I did.

There was snow, but not deep and easy to walk over.  I stood there for a few minutes feeling like there was nothing for me to do.  Not much needed fixing and I had nothing new to offer.  So I drew her a heart in the snow like the old days and then signed her "I love you" as I went to leave.



I got back in the truck and the next few songs spoke to my heart....

The first one was this...  holy moly... I just Googled it so I could share it and I'm blown away.  You *have to* play this.... please take a minute (or 4:30!!) to listen to these words...



and now I'll back up!  I'm seriously crying about this all right now....

ok, so I got in the truck and the Chorus to this song was playing....

                                                    
                                                         "More"
                                                                      Matthew West
Take a look at the mountains
Stretching a mile high
Take a look at the ocean
Far as your eye can see
And think of Me

Take a look at the desert
Do you feel like a grain of sand?
I am with you wherever
Where you go is where I am

And I'm always thinking of you
Take a look around you
I'm spelling it out one by one


[Chorus]
I love you more than the sun
And the stars that I taught how to shine
You are mine, and you shine for me too
I love you yesterday and today 
And tomorrow, I'll say it again and again
I love you more


Just a face in the city
Just a tear on a crowded street
But you are one in a million
And you belong to Me

And I want you to know
That I'm not letting go
Even when you come undone

[Chorus]
I love you more than the sun
And the stars that I taught how to shine
You are mine, and you shine for me too
I love you yesterday and today
And tomorrow, I'll say it again and again
I love you more
I love you more

Shine for Me 
Shine for Me
Shine on, shine on
Shine for Me


[Chorus]
I love you more than the sun
And the stars that I taught how to shine
You are mine, and you shine for me too
I love you yesterday and today
And tomorrow, I'll say it again and again
I love you more

[Chorus]

I normally sign Rachel "I love you" when I'm in the car leaving... so the timing of this was unique because when I heard the chorus, I was being overwhelmed with the thought...

I love you so much, girl.

And it was as if He was saying - "Oh yeah, well if you think you love her, you can't even fathom how much I LOVE YOU!"

So, that would have been enough for me to feel His presence and love... but God is so amazingly generous that He didn't stop there.

The next song was this:

"It Was Love"
Abandon

The angel stood in awe

At the sight they saw

The night You were betrayed

You could have saved yourself
But you held back the heavens
And let them carry You away



You laid Your kingdom down, they handed you a crown Of thorns You were torn, but cried let Your will be done



It wasn't nails that held You to the cross It was love, it was love, it was Your love You took our place, carried our guilt and shame All for us, all for us, all for us It wasn't nails that held You, it was love



To think You chose this cup

Knowing all that was to come

Oh the grace that poured from You
Before Your final breath
Through Your tears You said
"Forgive them, for they know not what they do."
You looked up to the sky
Let out a final cry
It is done!
Hope has won! 
Lord, let Your kingdom come!

I ended up lost in thought.... I was thinking about all the people who said "You mean they are *making* her carry the baby to term??"  Or the ones who questioned why I would put myself through "this" any longer than "I had to"....

I can honestly say that carrying Rachel to term was a time in my life when I felt like I loved like Jesus the best.  I've always felt that.  But today, it was like he hit it home for me.  I kept thinking "It wasn't nails..."  I wasn't forced. I did it because she is my child and I love her.  That didn't mean I liked it, or even that I wanted to.

I was afraid, I was lonely, I was in a ton of pain, both physical and emotional... It was the hardest thing I have *ever* had to do...  But my Father asked me to and so I said "Yes".  I begged Him to take the cup from me.  I begged him to find another way.  But He didn't.  

And as I thought all of these things about my carrying Rachel and loving her... I was led straight to the thought of how much *MORE* Jesus did for me... carrying the cross and died for my shame.  And He didn't have to... But He said Yes to the Father.

If I think I love her.....  

So then I go to write about this and Google the video and the first one "just happens" to be 4 mins and 30 secs... and I push play and the first few words across the screen read "A love song"...  "From God".... "To you"....

I and I couldn't help but cry....  The whole way home I'm thinking about how I want to write a post about God's love for me.  And since I hardly ever get to actually write the blogs that go on in my  head anymore, I didn't know if I'd even be able to... but I sat down and within a few minutes was yet again enveloped by God's amazing love and how *tangible* He really is!!  

And so I just want to say this... As we journey into February... the month we give to "Love"... when there are hearts and valentines and love notes... take a minute to stop and listen to how much God loves YOU... how much he *freely* gave for YOU... how much he wants to have a relationship with YOU.... because if you are reading this blog still, I know that you are inspired by how I love my girl.... 

And if you think I love her.....

He loves YOU more.

PS - I didn't highlight those lines above...(bold is mine) and it wasn't even like that when I first reviewed this... but I'm going to leave it because it's probably not a coincidence!  

Thursday, January 15, 2015

This Side of the Building

Saying it's been a crazy couple of weeks would be a major understatement.

Let me start by telling you a story....

Last month I was supposed to pick up my food commodity package from WIC.  It's for Sam since he's too old to get regular WIC.  It has a bunch of non perishable items in it, like cereal and boxed milk.  Long story short, I went to the wrong location to get it because of a communication error when they called to confirm, so I left to go to the right place and was running late for my dr's apt, so I had to leave without my food, only to get back to the doctors office... 6 MINUTES late... and they apparently only allow 5, so they called me a no-show and wouldn't allow me to be seen - and were going to charge me a no show fee! (thankfully they waived that!)

I had a BREAKDOWN in the waiting room.  I was crying and snotting all over myself and I didn't care.  I cried so hard my head was pounding and I called Matt sobbing, saying "Something has got to give, I'm going to lose my mind.  I can't do this anymore... I don't even have food to show for this and now I can't be seen and my blood pressure is out of control... "  I could hear the utter powerlessness in his few words as he listened to me fall apart.

They ended up telling me if I waited around for 1 1/2 hours, they could get me in with someone else.  So I did that.  When they called me in, a friend I've made through my blog who helped at Rachel's Race this year walked up and handed me a little gift she had for me... Every time something like that happens, I'm reminded of how God cares for me.  He has done it through all of you for all these years and it is absolutely the most beautiful part of this journey... I can't even put words to what it does for my heart when I know that because of my girl, I have people who I wouldn't know otherwise thinking of me and caring for me.  It's so humbling and so encouraging.  I'm so thankful.

So anyway, I got nowhere in that apt... But I tell you all of that so this next part makes sense...

They rescheduled my food pick up for last week.  That morning, I was having chest pains and my dr wanted me to come in for tests... I told them I needed to get my WIC bc I missed the last appt and needed the food.  Just before I left, I got the call that Isaiah and Asa both have two mutations in their C677T MTHFR gene.  It wasn't a total surprise, I fought to get them tested for a reason, but they were the two I DIDN'T expect to have it - so it really stopped me in my tracks.

I got in the truck to go to WIC and I lost it.  This breakdown made the one in the waiting room the week before look like no biggie.... I probably shouldn't have been driving.  I don't think I've cried like that since right after Rachel died.

I felt so helpless.  I felt inadequate.  I felt the weight of responsibility.  I felt afraid.  I felt angry that for YEARS the doctors have been ignoring all of my concerns about my kids... "It's growing pains"... "It's night terrors"... "It's behavioral"... "It's normal."... I knew there was something wrong and suddenly it all made sense... and I was furious that nobody listened to me.  I found myself crying out to God "Lord Jesus, not my babies!!....Please God don't let them go through what I am going through."  I wasn't thinking this... I wasn't softly praying this... I was *shouting* this as I drove down the road soaked in tears.  I mean, I had a full blown anxiety attack, trouble breathing, gut wrenching, pounding the steering wheel kind of cry.

I didn't realize I was thinking it, until I saw myself write on Facebook... "I feel like I'm killing all of my kids.  I don't know what's worse, to watch Rachel die right away or to know that my living kids are going to have to endure what I go through because of something I passed down to them."

I was always content with not knowing why Rachel had anencephaly.  And when I first found out about my MTHFR mutations, I still thought that there was a possibility that it was just a 'fluke' or 'bad luck' as the dr told us... maybe it wasn't my body that failed her... maybe it was a random occurrence... I didn't want it to be me.  And I think sometimes, it probably isn't caused by the mutation, which is why the Duke Study has not found that to be true as of yet.

But that day, I just knew it was the mutation that killed her.  And the fact that the kids have 2 mutations in the C677T means that Matt also has at least one mutation.  It was just heartbreak overload.  Matt's had extremely high blood pressure since we met when he was 21.  Guessing this is why....

So as I got closer, I didn't know where I was going so I followed my GPS and it took me right at the stop...  I realized a couple of blocks down, it was the wrong way, so I turned around and drove back past the road I came in on.  I saw a church so I pulled over to see if that was the place.  I didn't see a single car in the lot, so I called WIC.

The lady told me that they weren't in Farmington that day and that my apt isn't until February.  I informed her that this was the day I was given and that this was now the 2nd time they gave me the wrong location. We realized that we were, yet again, having communication trouble when I told her that I was there for the commodity program, not regular WIC.  She said yes, I was in the right place, that they would be there for another 15 minutes....

But I was looking around and there was NOBODY.  I was so frustrated... I decided to drive around the back of the building through a very small opening - and there was the food truck!  The worst part is that it was parked right on the side of the road that I came in on!  If I had looked to the left when I came to the stop where the GPS told me to go right, I would have seen it.  But instead I drove around in circles and literally sat on the side of the very building where the food was, crying about how lost I was.

I went in to check-in and told them what had happened and I cried some more - people must think I'm off my rocker!  She asked if I was having a hard day... I sobbed, "I'm having a hard life" and my tears just kept flowing, dripping all over the table.  I was a mess.  My heart was broken.

I thought a lot about the picture of that event...  and I really think it was a little parable from God to me...   I felt like nothing was going right.  I felt like I was going to go without the food *again*... I wanted to give up and just leave.... I felt frustrated and alone...  I felt completely lost.

But just around the bend... there was the food truck... I was not lost, I was right where I was supposed to be, I just couldn't see the proof of it yet.

I got my food and went home (and had to give half of it away because the kids can't eat cereal or pasta with their gene mutations) but this thought just stuck with me... I can't see what's around the bend and somehow, some way, I need to learn how to be still and wait on God when I am scared and uncertain of what to do.  I need to not give up, be willing to keep looking and take the next steps and eventually, God will provide all I need.  I don't need to see the answers in front of me to trust He has it covered.  Because I *KNOW* He does.  I know it.  He always has.

I've spent the last week, trying to work my family towards a diet safe for us.  It's easier to do it for me - but trying to feed 7 people all whole foods and gluten free - and nothing that is fortified with folic acid or B12 - and then learning about the arsenic in rice and GMO's in corn and the fact that our bodies CANNOT process any of it!  It's overwhelming.

So many people said it was so good I knew about the kids having the mutation bc now I could make the changes I need to - but that just made me feel worse because all of the changes require money!  Right now we use food pantries and WIC and most of that food will not be anything we can use now.  I spent 3/4 of our monthly food budget in one week and only got two things of meat.  So yes, I'm glad to know... but the pressure to keep them safe without the resources to do it is overwhelming.  I felt defeated and incapable.  And it's hard to remember that God IS capable.  But I know He is.

For the last couple of months, I've been praying like crazy for God's guidance with my medical issues.  And one night I woke up in the middle of the night and heard, clear as can be, him speak to my heart that I need to focus on the gene mutation.  I think I blogged about that... but it was when I decided to stop chasing doctors around... and it has been amazing how God moves when I get out of the way!!

So I made an apt with a naturopathic Dr who was recommended to me by a friend who has the MTHFR that sees him.  Problem being, he doesn't take insurance and payment is due at the apt.  I asked my family and close friends for help and nobody could help me.  God brought to mind another friend I've made through Rachel's life that is from Switzerland and I felt prompted to ask her for help.  It was extremely awkward asking someone I've never met in person for financial help... but she feels like one of my closest friends, even though we're miles apart... so, I humbled myself and did it - and she offered to pay for my first visit!!  Yet again, I'm reminded what a gift Rachel is....

I went to my apt yesterday and it was amazingly informational.  I started taking these vitamins in July or August that my friend takes, thinking since we have the same thing, they'd be good for me too.  And over the last couple of weeks, I felt like I should take less of the folate I was taking, but wasn't sure why... so I just listened to my gut since I had been praying about it so consistently.  Turns out, God was providing because the Dr yesterday told me the vitamins I'm taking are like poison to me right now!  I was baffled, but after 2 hours of questions and answers, it all made sense.  I would have never figured this out on my own.

He gave me a shot of vitamins and sent me home with a plan and we will talk in a couple of weeks, but he said that every, single, one. of my symptoms make sense and he is confident they will get better and he can help me!!  And then half way through the visit, he says "There is a word I want you to remember... it starts with H... do you know what it is?"  I said no and he said "HOPE!"

It was so clear I was right where I was supposed to be, even if I couldn't see the other side yet. Even if I feel lost and overloaded and in the 'wrong place'...  I am so encouraged that FINALLY someone isn't confused by me!!  Everything he showed me and told me made so much sense.  I'm SO glad to have someone who *knows* (not guessing!) what to do to help me get back to healthy.  And I'm so relieved that I don't need to chase answers anymore!  And the best and most blessed part of the entire thing is that I can see God's hand in ALL of it... from leading me to our new church where there are a few people who have the MTHFR who recommended this Dr... to the kids' new doctor agreeing to finally test them... to the cost of the apt being covered... right down the the very fact that absolutely none of any of this would be happening if it weren't for our sweet Rachel.

Without Rachel, I would have never asked for the test - I'd be completely confused about all of my symptoms and would have no idea how to help it.  I wouldn't have known to test the kids, and the dr's sure wouldn't be coming up with the idea...my friends who are newly diagnosed would have no idea and would still be searching for answers they would never get.... I wouldn't have all of these great friends to cheer me when life is hard...  But oh, how I miss her.  All of this awareness has really brought on some hard things to work through.  Thoughts that probably are irrational, like wondering if she was in pain when 'it' happened to her... anger about the idea that if someone had listened years ago... maybe I'd have her right now.... and mostly, I just miss her so much it hurts just saying the words.

Today I got the call that my little E has two of the mutations as well... and I didn't fall apart like I did the other day. I can look back and think of how God led me to not allow him to get Nitrous Oxide when he got his tubes in November and I know that likely could have saved his life.  God let me 'stumble' across that ONE place online where I read something about Nitrous... and it was absolutely not connected to any search I was doing for E!  It was just God's grace making me aware of something I needed to know to protect his child. I know that if I am walking with the Lord, He WILL direct me and help me keep my kids safe.  He is with us.

Now we wait for Desirae & Sam's results, and ironically, they were the two I thought would have it... so we'll see... Desirae has been really sick - headaches (better off of gluten) and throwing up regularly for no reason.  She has been doing this for a couple of years now - maybe throwing up 4-5 times a month... Dr's blow me off, of course.  so if you could pray especially for her, that would be good.  I'm bringing her and Isaiah both to the pediatric rheumatologist for joint pain (that they've had for YEARS! ugh)  next week... but my guess is, it's all related to the mutations!

So, while it's really hard sitting on this side of the building... not able to see what is ahead, how God will provide, or what the outcome will be... I, for the first time in probably over a year, feel so encouraged and hopeful that healing can be in my future!!  I left my apt yesterday so excited to feel better... I cannot wait!!  I have a long list of things I want to do with my young family and I can't wait until my health doesn't stop me anymore.  

But regardless of what happens, or how it plays out... I know that God will be with me and that He will provide everything I need to get to the place where I can see His hand in it all and know I'm right where I'm supposed to be.

Lord, help me to walk this difficult path with grace and joy, always just a little closer to You... as I lead my children to do the same.....


Thursday, January 1, 2015

The Groove In My Heart

This year hasn't felt like the Christmas season much... at all.

From Rachel's birthday on, there were so many heartbreaks and so much to do with so little time, not to mention, no snow, that it was hard to feel festive.

We don't usually do much for New Years.  We usually have Chinese food in... and pass out on the couch early.  Earlier than any other night for me because I eat a lot and sit down, neither of which I do often - and certainly never at the same time.  We don't have cable so we don't wait for any big ball to drop.  And I don't usually get into the new years 'resolutions' much because they don't usually mean much.  After working at the YMCA and see how busy the gym is in January and how it's right back to empty come March, I realized that a resolution on New Years doesn't hold a lot of weight most of the time.  A conviction from God is completely different and can come any time throughout the year - and then you have the Spirit to help you in it and it's not based on 'will power' or whatever.  anyways...

New Years Eve is our anniversary of when we became a couple... that night in 2001, at a little church way up north is Littleton, NH,  we danced and we laughed.  Just a few months later, I was expecting our first child.

Des got a wii game, "Just Dance" for Christmas and as soon as she turned it on, I was so into it, I couldn't even walk by without asking her to sign me on as a player... I used to DANCE... like, all the time.  I LOVED to dance and was actually good at it.  I spent hours upon hours as a young adult dancing.  I danced at clubs, I danced in my living room, I danced in parking lots.  And I'm not kidding.  I didn't have dance lessons or anything, I mean I just couldn't resist the chance to dance.

This is why when I was in Rachel's ultrasound before we knew what was wrong and she was moving all over the place, I said through tears of joy, "She likes to dance, just like her mama!"

Those words became a famous line in my letter that went out to our family, friends and church family when I told them that she was not expected to live.  And hence, she became my 'tiny dancer'.

I've been talking about how I have 'danced in the rain' for the last 4 1/2 years... but I'm pretty sure all that trying to keep dancing in my heart - to make beauty out of my pain - has taken all my energy, because I don't dance much any more.  Heck, I don't even play music as much as I used to because my head *always* hurts.

So far, a couple times that I have danced with Des in the game, I have had my blood pressure drop so much that I got sick and couldn't continue. :(  If I could resist the music - and the challenge of the game rating your ability to keep up with the dance moves - I would have deemed it unsafe and stopped trying... but there is something about a good beat that I can't walk past.  The second I heard "Grove is in the heart" playing, my body starting moving and I danced.  And it feels awesome to dance.

This year for New Years Eve, we went out with my family for dinner.  It was a lot of fun. I really want to spend more time with them.  They are awesome people. We brought the kids back some gluten free pizza and soda and then Matt, Des & I rang in the new year as we just barely finished the movie Elf, which we had not seen before.  We spent a lot of time laughing - and laughing feels so good.

I woke up this morning to the sound of my husband singing in the kitchen and the pidder patter of lots of little feet and was overwhelmed by the goodness of God.

Our Pastor had asked us on Sunday to email him with one praise from 2014 and one goal in 2015.

As we thought about it, we said that the biggest praise we have from 2014 is that Jay (my niece who had a stroke at age 9) was with us.  At the end of 2013, we didn't know if  she would live.  in 2014, we watched her learn how to live life with half of her body paralyzed - and she has done so with such a good attitude it would put anyone to shame with the things they complain about.

I've been thinking a lot about how hard 2014 was on my health and praying that 2015 will bring a break through of divine healing.  But as I thought about this, I thought about what would make me happy, regardless of if I get that physical healing or not - and what comes to mind is that I want to dance and laugh more.  Hear me when I say, this is *not* a new years resolution.  This is something that God has placed on my heart.  I don't want to spend my life - or for my kids to remember their childhood (especially if I die young) as up tight people who take everything too seriously and don't laugh.

Have you ever been around someone who laughs a lot?  Is it not so refreshing?  The Bible says that laughter is good medicine (Proverbs 17:22).  Matt & I used to laugh constantly.  I mean, we used to walk from his house to the store on the next block BACKWARDS holding hands because we thought it was funny.  It might not sound funny, but try walking in public backwards, I'm telling you, you WILL laugh.  And so will others!

I used to be really funny - and I know this sounds dumb, but bear with me... I get this gene from my family - it's called a dry sense of humor and used a the wrong time can seriously make you looked like a jerk - and given my past, some of the thoughts in my head I really should not let come out - so I've tamed it... but most people who know me closely have experienced it... I just am way more serious than I ever was before... and I don't like it.

I have learned in the last month watching my family walk through the death of my Papa and the scares of what's going on with my grandpa that these people are about the funniest people I've ever met.  They are always laughing.  My Papa was seriously cracking jokes that made everyone laugh until he could not speak anymore.  And I guess I grew up not realizing that not all people were that funny.  I actually know many people who couldn't be that funny if they set out to be and it just comes naturally to my family.

So anyway - this year, I am going to dance and laugh more.  Not just until March, but from now on.  For me and my health - for my kids and their memories - for my marriage and it's perseverance.  Because God has put it on my heart, I know he will help me make these both part of our home and I know we will all be blessed by it.  He put 'The Grove in my Heart' for a reason.... I'm not going to fear my physical limitations, I am going to do what I can and love it while I do.  Because, as this year has made clear, I might not always be able to do what I can today.  Today is a gift - every single aspect of it.  Good and bad, hard and easy, planned or not what I hoped for... it's all in his hands and ALL exactly what is best for me.

Matt said his hope for this next year is that we will live each day like it is the day that Jesus is returning... we're supposed to do that.  We're supposed to live in hopeful expectation that he can and will return any moment.  And when you live like that, it's hard to worry - or fear - or fret... it's hard to not be joyful and hopeful and feel like dancing - and laughing.  And here it is, lest any of us forget - HE IS COMING BACK for us.

This song came on Pandora shortly after we talked about these things - and I made this stanza my prayer....

"Heal my heart and make it clean
Open up my eyes to the things unseen
Show me how to love like you have loved me

Break my heart for what breaks yours
Everything I am for Your kingdom's cause
As I walk from earth into eternity"


Listen to this song... I was trying to figure out which video to pick on You tube.  I wanted one with lyrics, but I played this one and I loved how it showed people worshipping.  I looked at the date it was posted... August 4, 2010.  What a 'coincidence'.... a reminder to worship on the hard days... because even in the hard, HE IS WORTHY of all honor and praise.



Lord, I thank you for every part of 2014, the good and the hard - and I thank you that you have carried us through so much this year.  I pray that 2015 is brighter, but no matter what comes Lord, this is the cry of my heart... that You would continue to work on our hearts, making us more like Jesus every day, that you would open our eyes to the needs of people around us and show us where we can serve you by serving others...being love and light to a dark and dying world... that our hearts would BREAK over anything that breaks Yours, that we will continue to strive to be in the world, but not of the world, that You will help us remember that this life - as believers in Jesus Christ and His death on the cross for us - is but a walk through earth, into eternity.  And through it all Lord, help us to dance, laugh and remember You are returning.... and it could be today!

May you all have a year blessed with good health, great memories, and the ability to see everything as from God above... to thank Him for the good and praise Him through the hard.  I love you all and am so thankful for each person who takes time to read my words... this helps me continue on with mine & Rachel's legacies and that is an amazing gift you give me each time you visit thegiftofrachelslife.blogspot.com.  When I came up with that address to start this blog, I had no idea what a true gift her life would be... but you caring and loving us, reading about my journey, is part of what has made this place a gift to me.  Thank you for coming along on this bumpy ride with me and seeing her value and worth and her great purpose with me.  Thank you for being a blessing to my heart so often.  You have carried my burdens with me time and time again, and I will be forever grateful for that.

Saturday, December 27, 2014

Silence Is Overrated

Another Christmas without my Christmas baby - and it still hurts.  I didn't have much time leading up to Christmas to think about it with all that was going on with Papa, my Grandpa and my own health - but on Christmas Eve and Christmas Day, I felt it just the same.

This was the first year that I went the entire two days without hearing a word from anyone about Rachel.  Her name wasn't on any of the cards... not included in any of the gifts...nobody said it out loud... and nobody visited her grave, unless they did without leaving anything....?  When I went there on Christmas day, it felt very vacant.

I did get a gift card to the flower shop from my mom in Rachel's PO Box last night and I heard a message my mother in law left on Christmas day that mentioned Rachel - I just didn't get either by Christmas day.  So as the night closed in, and I realized that nobody remembers her anymore, I was so sad.  Ironically, this year, even in the midst of just barely putting Christmas together, I got Rachel a few things.  I usually hang her stocking and put candy in it, but this year I bought gifts and wrapped them.  God knew what I was going to need... and I really needed her to be included.

I bought all of the kids pillow pets for a trip we're going to take and I 'accidentally' ordered one too many and it 'just happened' to be a pink pig, so I kept it for Rachel, knowing I will be happy to use it and have something representing her on a trip I would love to take her with us on.

I also bought her a pink memory box like the ones I got for the hospital that I really liked.  The first one came damaged, but I returned it and the new one came in time!  It's perfect... pink, yellow and green with a daisy type flower!



I wrote on Facebook a couple days before Christmas that while I was in the shower, the kids knocked over and shattered the shadow box I had put together.  Her hand and foot molds were okay, so I wasn't upset.  Thankfully I reacted extremely calmly to the whole thing, because Sam felt so bad he knocked it over.  I was so glad I just said it was ok and to stay away from the glass... he would have been devastated if I had gotten upset.  He apologized a hundred times.

I had said that I doubted they would be on sale again and the only reason I could get it in the first place was by spending money I didn't have and justifying it because it was 40% off.  But the sides were also broken apart and I didn't feel safe trying to fix it and putting her irreplaceable things in there.

So that day, I decided to drive to Newington and see what else they had.  I walked in and they were 40% off again!!  I was so excited, until I couldn't find the same one. It took me HOURS to put together so I was hoping to just switch out the backs.  They had the same one in black, which I didn't really want - or one a little deeper in white (which I found I really could use deeper when I set up the first one, but it was $15 more!)  I lamented over it until my kids were running wild and losing patience and I finally grabbed the white one and got in line, again spending money I didn't have... but my heart really needed this.  As I stood there, a woman approached me and said "I have this coupon I can't use, would you like it?" as she held it up for me to see.

And what do ya know?   After the 40% off, her coupon made up the difference between the black and white one!! So I paid the same for the new one as I did for the first one!  Then when I got it home, not only was it deep enough to not squish her lamb's head, but it was slightly bigger - the sizes were supposedly the same, but it had more room around the edges, which allowed me to fit the other items I *really* wanted in there, but couldn't fit before!  Suddenly, I was really glad I needed a new one. lol

I put it together tonight... I love it so much more!  And now I plan to use the other one for stuff from our wedding to hang in our bedroom.  I hate that stuff sitting in a box in my closet too.  So I'll work on that in all my free time....  anyway, here it is!!

Her cloth diaper wasn't in the other one, but I really wanted it to be.
I couldn't even come close to fitting it before, although I tried like crazy!
This is the one she wore while with us, the other she is buried in.

I added a piece of her blanket - I also had to build platforms for her molds because of how low the
frame went - but I tied her feet together (ribbon was from something my mom left on her grave when
she went the first time) and so now they are WAY more sturdy and it looks cuter too!!
Her hands are on the box from her cross necklace, which 'just happened' to have daisies on it.

The "It's a girl" ribbon, my mom put it on the table at her funeral with a bear and flowers
in a basket - the basket is still in my bathroom on our changing table.
Also added her hospital bracelet

 I added her necklace... we received two of these, not on purpose!  And so
She is buried in one and we have one.

So, as I was gathering the extra stuff for this and getting things organized in her new memory box, I came back up from the basement and Sam was crying.  I asked him what was wrong and he said "I'm sad that Rachel died."  I said "Me too... do you want to help me put her box together?  This is what I do that helps me when I'm sad..."  He took my hand and followed me in to the living room and worked really hard helping me build the platforms for her molds.  I was so thankful for his company.  I'm so used to doing everything like this alone... it's nice to know that someone else finds it meaningful and important... and that it can help his little heart too.

But tonight, I feel the harsh reality of the fact that she is fading from others' memory... that Christmas won't always - if it even still does - remind people of my girl like it used to... my baby due on Christmas day... the absence of whom made the words of "Silent Night" something that will always remind me of that stupid shirt I bought before I knew she would die... "All mommy wants for Christmas is a silent night" it said... I threw it away.  I wanted anything but a silent night.  I wanted to be up all night with a crying baby who needed me. But it was silent in 2010, and it still is each year as I miss her like crazy, while the rest of the world celebrates what Christmas is to everyone who didn't bury a baby who was due on Christmas day.

I was so thankful for THIS ARTICLE that I found in my email this morning.  I almost didn't read it because of the title, but it was such an encouragement to me.  Please read it if you have a few minutes, it's a short read but it really spoke to my heart...  my hurting, lonely heart...  I'm thankful to know that Christ came for the exact reasons I hurt.  And that he conquered death and that in him, I have victory over anything that could stand against me.

While I'm here... I cry, I mourn, I feel left behind and alone...I make memory boxes.

But this is my temporary home and one day I will leave this earth and all of the memory decor behind and I will go to heaven with my Lord and my daughter and I will not fear hand and foot molds being broken... or find myself taking deep whiffs of her hats to try to remember what she smelled like... because I won't need to.  I will have the real thing right in front of me.

And there will be no silent nights... no darkness... only light and singing and dancing and worshiping Jesus.  I never wanted a silent night.  Those early days without her when my house was quiet as could be, brought me the least sleep I've ever had in my life.  I love sleep, don't get me wrong, but I'm ridiculously excited about the day when I no longer need it because quite frankly, it's hard to come by and exhaustion is awful.

And on that note, I better get to bed, even though I feel like this post is not at all what I wanted it to be... welcome to the writings of a mom of 5 living kids...  Little, sweet Ezra is such a gift, but I'll tell you what, #6 (5 at home and so much to do for one in heaven) has been more than I was ready for... this is HARD stuff!!  Even 4 (#5 - when we added Asa) was completely different for me and I have had my last 4 all within 4 years of each other.  So it's not like they were all that spaced out before.  I had all but Des really close together.

I always remember Michelle Duggar saying that when they had 5 it was harder than having 19 because they were all little and close together... and since I seriously look up to her, I find that encouraging that she thought it was hard too! LOL.  So for anyone with 5 kids thinking it's way harder than you expected - ME TOO!!  I hope that encourages you!! LOL.  These are the *very best* days of our lives... hard, but beautiful... don't lose sight of that because they will go by way too fast and we will miss them!  It's not something people just say... if you have 5 kids, you must love kids and if you love kids, you *will* miss them when they are gone and your house is quiet!  Bring on the grand-babies!!

Anyway, we don't get a silent night here... ever.  Someone is always waking up - last night we were up about 5 times between 3 of them and Sam had his elbow in my back or was coughing in my face most of the night.  Same thing the night before, except we also had to change sheets because someone had an accident... we literally do. not. sleep.  And you know what?  I'm okay with that.  It's hard... but it's not anywhere near as hard as a silent night.

Take it from me, silence is overrated.