Saturday, November 30, 2013

Behind the Curtain

I stepped into the shower and closed the curtain.

My mind wandered...  thoughts of Rachel flooded in.  Thoughts of a few other stories I've recently heard of babies with anencephaly and the frustration with why they seem to hurt my heart.  Maybe it's just too close to Rachel's birthday for comfort?  Maybe it's another phase of my grief?  Why is it harder now than it was a year ago.... or even right after she died?  I'm so worn out from trying to live each day in this new position we call a bereaved mother.  It's a lot of work.

I started to cry.

I know the shower isn't an unusual place for people to cry, but when I do cry there, it doesn't often last long.  I never realized it until this morning, but think the strange feeling of crying without being able to feel the tears is actually a distraction for me. 

This morning, the realization of how I need to feel the tears in order to have a 'good cry' made me cry harder...  and the more I concentrated on the fact that I couldn't feel my tears through the water, the harder I cried.  Soon, I was sobbing. 

I cried the deep cries that leave one feeling exhausted. Without having to worry about smudged make up, being discovered, or making my kids worry.... I let it out without reservation.

I could feel my nose begin to get stuffed up, I could feel my breathing become harder, I could feel the tense muscles in my face and belly.  But it wasn't until I cried so hard that I could feel the tears that it felt like it had done what the crying set out to accomplish.

I felt the warm pools of water in the corner of my eyes and finally felt relief.

It confirmed for me once more that God heals me through the brokenness.  That trying to brush my pain aside will never truly bring healing.  I need to feel the tears to relieve the pain.  And maybe that is why God created our eyes like He did.

I stopped the water and opened the curtain... the only proof of my meltdown were the red eyes left behind...and I prepared myself for another day as Rachel's Mama...  something I would never change, but requires some time behind the curtain.

Tuesday, November 26, 2013

Care Basket Sponsor

We have one week left until Rachel's birthday and we've almost reached our goal!  THANK YOU!!

I was blessed to make up a card to put in one of Rachel's baskets in memory of another little baby - my friend Monique's son, Sebastian.  I love to find ways to help other families honor their babies through Rachel's life and the things I do for her...  If you would like to sponsor a basket in memory of your baby, please let me know by Saturday!  

Here is what we will include - Sebastian's Mama picked the quote at the bottom....

Monday, November 25, 2013

She Has Eternity

Yesterday we had our "Winter Baby Birthday Bash" and it was amazing.  We celebrated Desirae's 11th, Isaiah's 7th, Rachel's 3rd and Asa's 2nd birthday.

First, let me say that I did this for a couple of reasons - for one, we have 4 birthdays with Thanksgiving and Christmas all within 6 weeks of each other. This helped simplify our lives.  But another part of it was that I was scared to death that if I had a party for Rachel, nobody would show up.  I told myself I didn't need a party for her anymore, but as the seasons changed and I felt 'her time of year' coming, I knew my heart couldn't handle that.  I figured this way, I wouldn't know if nobody showed up for Rachel.  I also knew that whether they liked it or not, the people who did come would think of her and hear me say her name. And even though I felt like I was shorting them all by not giving them their own party (I LOVE throwing them each a party), I felt good knowing that Rachel was getting the same as the rest of them.

I mentioned in my last post that not many that were there when Rachel was born were coming.  My parents and my nurse/friend Kim were here. I think this was the only downfall to combining the parties - it kind of made it less of a serious day, I think (for lack of better words) so maybe it was easier to turn down. For some reason, being with the people who met Rachel on her day I feel closer to her... and I feel less like I needed to explain anything to anyone.  They were all there and they know what the day held for me. 

But this is where combining the parties was good for me... because this house was hopping!  It was great.  God met needs I didn't know I had.

We had a lady named Claire offer to make Rachel's birthday cake this year as a gift and when I said we were combining the birthdays, she worked with me to incorporate everyone.  She delivered the most amazing cake and cupcakes I've ever seen!  I looked at it and thanked her, but when she left and I *really* looked at it and told the kids how she didn't charge us for it, I started crying...  Rachel has brought us so many amazing people who have a heart to help us just because she is loved.  It's humbling.  I'm just so thankful for that.  Please know that even when I don't say it (which I hope is not often!) my heart overflows with gratitude for every ounce of love we are given as we walk this path.

Here are some photos (wish the quality was better, these don't do any of this justice - I failed in the photo department this party)

Yes, these are edible!!  "Asa" is skiing! :)

Not sure if she did it on purpose or not, but Rachel's name is in Christmas colors. (love it!)
Another spin on my homemade cupcake holder... snowflakes and snowballs on the cupcakes!  She put a snowflake under Rachel's #3 - my irreplaceable girl...

Des & I had fun decorating... (with TONS of technical help from my dear friend Lisa)
The "Arctic Freeze Punch" was a huge hit and super cute.
The kids' favorite food name was "Penguin Poop" - AKA: Meatballs - lol.

 My favorite part about combining the birthdays is that this is the first year since the day she was born that we sang happy birthday to her...  It was such a surprise blessing for me.  It wasn't a piece of the day that I had given much thought to, but I was so thankful for it when we did it...

They all got their own cupcake with edible penguin - Sam ate Rachel's for her, since he didn't have one.

Des was missing Jay - she's always at the top of the guest list.
The penguin piñata...  I loved how the belly had a white heart on it.
The birthday bunch

I set up a little station with some favors for guests to take home ("penguin snacks" AKA: Goldfish!)and with one of Rachel's birthday baskets on it for people to look through.  I really loved being able to show people the things I've been working on - and to be able to talk about the day Rachel was born as I did.
And of course, daisies and Rolo's...
At the end of the party, I discovered a bunch of cards/gifts for my girl that I hadn't realized people had brought.... it left me speechless.  I had a smile from ear to ear.  THANK YOU to everyone who celebrated her with me.  You have no idea how much I needed it.  It seems crazy to some, but there is nothing as good as seeing Rachel's name written by someone else... to just have her get a card, regardless of the contents or words does something for me that I can't explain, but I so need. To know that she is remembered and that people know that I want her to be included and are willing to include her means the world.  My heart has been so heavy and I've been having an extremely hard time with this birthday approaching.  I'm not ready for her to be gone 3 years already - as if I can change that fact with denial??  I was desperate to have friends and family remember her with me - and God has provided.  thank you.
An unbelievably perfect gift from my friend Donna - it's a Precious Moments vase.
Every moment is precious.... and since we still have fresh flowers always on the counter to represent Rachel's presence in our home, I now have the most perfect vase to put them in!  She has touched so many hearts.  Especially mine.
Rachel's gifts...including enough money to cover 2 more care baskets!!  THANK YOU ALL!!!
I wanted to go to Rachel's grave and let a couple of the balloons go, but wasn't able to make it there. As I was cleaning up from the day, I looked outside and snow was falling, just like it did on Rachel's birthday in 2010.  Maybe I'm wrong, but I like to believe God was letting me know that she isn't as far away as she feels.
It was a perfect Winter Baby Birthday Bash... with a perfect ending for this winter baby Mama's heart.  I can't believe it's been 3 whole years...and yet I can't believe it's only been 3 years.  I can't believe how hard it's been and how many tears I have cried... I can't believe how much it has hurt and how actually physically painful a broken heart can be.  And yet I can't believe how beautiful this journey has been, how many blessings I have received, how great and unending God's love is for me and my family... I can't believe how many times I have smiled, how many times I have been able to bless others through it all... I can't believe how far her story has reached and how many times I have heard that she has changed someone's life - through her death. 
I've always said that I would want to keep her if I could have.  And in my humanness, I probably would.  But when I can see the big picture through God's eyes, I wouldn't change a thing.  So, this might sound wrong, but hopefully it will make sense... it just dawned on me that I would love to have another little girl someday, but I don't want it to be Rachel (see, having trouble putting that into words...)  I just mean that I love her for exactly who she was and is and will be in heaven.  I love her for her anencephaly.  I love her for her 43 minutes.  I love her for her death.  I love her for who she has made me and for the amazing purpose she has given me.  I love her for just being her - even in her death.  I love her.  I love how hard this has been - because good things are hard.  And she has been worth it all.  I love her for showing me Jesus so clearly.  For being a piece of heaven in my arms... and in my heart.  But mostly, I just love that I can always celebrate all my winter babies - my Christmas baby included - because even though she isn't here physically, God shows me every day that she is still very much alive.  Not in the way that I would have hoped for the temporary... but she has eternity.  And as her birthday approaches, my prayer is that I can truly celebrate that this year... she has eternity. 

Saturday, November 23, 2013

Can You Take Me Back?

It's been a tough night emotionally... as Rachel's birthday approaches, I catch myself going back in my mind.  Not that I don't do that every day, because I do.  Pretty much every day I think about the day she was born at least once.  But as December 3 gets closer, it's on my mind constantly.  I don't want to forget the details.... it's all I have of her.

A few months back one of my friends told me what it was like in her house the day Rachel was born.  She gave me a picture of what my sharing so openly about my girl had for an effect on her family.  She told me of how they felt when they heard the outcome of her birth and I posted the photo of Rachel... and I was surprised to hear it.  It was hard to hear, but at the same time, in a strange way, it was comforting for me to know that I may have been in that hospital alone, but I was not alone.

Last year for Rachel's birthday, I asked everyone to send me a note telling me how Rachel has impacted your lives...  I got some of the most amazing letters.  So much more (and I don't mean the amount) than I expected.  I had planned to share those, and of course never got to it, but maybe I'll try to find them and share them this December - I don't know. 

I just spent some time going through Rachel's memory box.  And I feel so weird saying this, but since when has that stopped me?  so I'm just going to - I put my Rachel bear into Rachel's little daisy dress. It fit the bear just right... it's amazing how close in size they are.... As I snapped the back, I saw the blood stain on the back of the neck and I just cried.  Looking at this stuff is not something I do much because it is emotionally draining and I don't like to do it when the kids need me during the day... so I've probably only opened the box 2-3 times this year, tonight included.

But anyway, I put the bear in the outfit that Rachel wore in the first photo I ever posted on her birthday post. (You've *got* to read that post HERE  The photo was before Lisa did any editing for me, so she is pretty blue, but I tried to make part of the photo black and white... but I just re-read it and am just in awe of how God carried me that day. wow.)  I just went back to her birthday in my mind and heart....

So, what I want to ask this year - is if you remember where you were when you first heard about Rachel or when you saw her birthday post - could you take me back in your mind?  Would you either comment here or send me a note through email to  I am yearning for someone to remember with me...

We're having a birthday party tomorrow for all our winter babies - Des, Isaiah, Asa & Rachel... and only my parents and my nurse/friend Kim are coming out of all the people who met Rachel the day she was born.  I usually like to have the people who were there come because it helps me to feel like they *know* without me having to explain it - so I'm feeling pretty sad about this tonight....  and putting her bear in one of her outfits just did me in.  I can't believe it's been almost 3 years.  Seems impossible and at the same time I can't remember it ever not being this way. 

I'd give anything to go back to that day......  Can you take me back?

Monday, November 18, 2013

I Dedicate This Song...

Des & I drove to see Jay tonight.  She is back at Dartmouth still since her last surgery, so we had to make that familiar drive that holds so many hard memories from the last couple of months.  

As we drove home, I was reminded of another long and painful road that I used to travel regularly in a family crisis....the road between here and Bethlehem NH, where I spent 7 months in rehab.

I spent 15 days in detox and 28 days in inpatient rehab (that's a total of 43 days! :)) before moving on to the housing program for 6 months.  There, I was allowed to leave on weekends, so my mom used to pick me up every weekend to bring me to my house.  She would pick up my dog, Snoop, first in Epping, then drive to get me over 3 hours from there and bring us back to Rochester - another 3 hours - every Friday.  And then repeat in opposite direction on Sundays.

Tonight as I was driving, a song came on the radio that reminded me of one of our trips. I'm guessing since I went to rehab on October 4, 2001... it was just about exactly 12 years ago this November that we made these trips. The conditions were very similar tonight as they were then, with rain and fog and the dark, unlit highways in the middle of nowhere.... and this song had come on and I said - very uncomfortably because I wasn't good at sharing my heart - "This song reminds me of you." I turned it up and we both sang along.

As I drove with my daughter a very different, but difficult drive, I could only hope I can be these things for her.  I like to believe I was everything I could be for Rachel, too.  But as the song played, I could hear my young, scared voice in  my mind confide in my mom who was willing to do anything and everything needed to help me and love me through that trial..."This song reminds me of you..."

I cried  tears of regret for what I put my family through.  I cried tears of gratitude that God pulled me from my pit.  I cried tears of love and pain and joy and sorrow all wrapped up together because of this journey with Jay....because of how I'm afraid I'll fail Desirae and because of what I don't get the chance to fail Rachel on....and I cried because of how beautiful and strong a mother's love is....both what I have received and what I am blessed to be able to give. 

But clearly, I am still just as uncomfortable sharing my heart as I was 12 years ago because I just talked to my mom for 2 hours and didn't tell her this.  So, here you go mom.... This song reminds me of you.....Thank you for always being there.

If you're following by email, here are the lyrics:

"Because You Loved Me"
Celine Dion
For all those times you stood by me
For all the truth that you made me see
For all the joy you brought to my life
For all the wrong that you made right
For every dream you made come true
For all the love I found in you
I'll be forever thankful baby
You're the one who held me up
Never let me fall
You're the one who saw me through, through it all

You were my strength when I was weak
You were my voice when I couldn't speak
You were my eyes when I couldn't see
You saw the best there was in me
Lifted me up when I couldn't reach
You gave me faith 'coz you believed
I'm everything I am
Because you loved me

You gave me wings and made me fly
You touched my hand I could touch the sky
I lost my faith, you gave it back to me
You said no star was out of reach
You stood by me and I stood tall
I had your love I had it all
I'm grateful for each day you gave me
Maybe I don't know that much
But I know this much is true
I was blessed because I was loved by you

You were my strength when I was weak
You were my voice when I couldn't speak
You were my eyes when I couldn't see
You saw the best there was in me
Lifted me up when I couldn't reach
You gave me faith 'coz you believed
I'm everything I am
Because you loved me

You were always there for me
The tender wind that carried me
A light in the dark shining your love into my life
You've been my inspiration
Through the lies you were the truth
My world is a better place because of you

You were my strength when I was weak
You were my voice when I couldn't speak
You were my eyes when I couldn't see
You saw the best there was in me
Lifted me up when I couldn't reach
You gave me faith 'coz you believed
I'm everything I am
Because you loved me

I'm everything I am
Because you loved me

Thursday, November 14, 2013

Me Too

Tonight I was sitting with Sam on the couch.  He was driving his cars over my belly and I waited for his usual comments about the baby he insists I must still have in there, based on the size of it....

He started in a familiar way.... "When is the baby in your belly going to come out?"

And I said the same thing I always say "There is no baby in there anymore."

The next part I was not expecting....

He continued "Ohhh, but I want you to have a baby in your belly again."  My eyes got wide and I asked "Already!?" and he whined....

"I want Rachel to be in your belly again... I want her to come down from heaven and be here with us... I want Rachel...."

"Me too, Buddy"... I said. "Me too."


UPDATE:  Holy Moly... I posted this and the time stamp said 10:27... the time she was born... She is with us.

Tuesday, November 12, 2013

Set in Stone

I was standing at Rachel's grave on Friday, studying the details of her stone...  thoughts flooded my mind about the days of deciding on the details of her stone and the days of waiting for it to be placed.

I have so much I could say about the journey from the first day at the cemetery picking her spot to the day that her stone was set.  I could go on and on about the amazing way God brought it all together to even allow us such a prominent and beautiful stone... and to this day, when I look at it, I see a tangible piece of evidence of how well God's people loved us and how He provided for us through them.  The stone was special ordered from India (it's an uncommon material) and cost over $3000 and we only paid $125 out of our own money - and we didn't ask for any of it... people just gave it to us.  It was so humbling. 

So, on Friday as I stood there, I was thinking back to those days.  After they had originally written on her stone, I was not happy with it.  I had taken the monument guy's input on a couple of things that I wished I hadn't.  Like he said not to put our names on it because it would scare the kids.  That made sense at first, but when I saw how plain and empty her stone looked without them, I didn't like it.
This was how it looked at first...  I am SO glad I changed it!

I love the stone itself

I wanted it to be obvious that we would be joining her there one day.  The guy was not very responsive to my requests to change it after the fact, and I spent a lot of time on the phone talking to him about options.  He didn't give me any.  So I drew it up myself....

I'm not sure if I've ever written about this before, but the curvy lines around Rachel's name are something I had sketched and sent to them, thinking they would use it as an idea.  When they sent me back the proof, they had used my actual drawing.  I think they were fed up with me and just did it quick to get it over with.... but what a blessing it's turned out to be because I LOVE that my drawing is on her stone, as simple as it is.  I love that I can remember sitting in her room during the most painful days of my life and the tears that fell as I struggled to perfect a stone that deep in my heart I knew would never be good enough... because I didn't want a headstone... I wanted her.
I started to think about the saying we all use "Set in stone"  as I looked at my girl's name etched in the prettiest stone I've ever seen....  Permanent.  Forever.  It's set in stone....

My mind wandered to a place of doubt.  I started to think things like "What if heaven isn't real and this is all there is?  What if we're crazy and none of this is true? What if her body is just deteriorating down there and I won't see her again?" 

But then I got caught up in my drawing. After her stone was placed, Matt mentioned that the bottom lines under her name looked like a book and reminded him of the Bible... and that the lines above her name looked like wings.  I didn't do either of those things on purpose, but I think God did...  because standing there this week, he used them to remind me that His Word is TRUTH and that heaven is real.  That Rachel IS dancing with the angels and that I WILL see her again because of what Jesus did for me on the cross.  That is set in stone!

I remember going to the hospital to have her and thinking on the way "I just want there to be a dash"... it's always bothered me that Rachel only has one date.  I wanted her birthday and the day she died to be different.  But what mother wouldn't? 

I stared at her name and date for a minute and again was questioning God... "Why couldn't there have been a dash? was that too much to ask?"  I looked at my name, then Matt's... I looked at my date and then at Matt's...  I wondered about our "future" dates....

and for the first time in all the HUNDREDS of hours that I have spent standing on her spot, I looked at the dates differently and I am positive this was a picture God gave me to remind me of His promises.... I saw that we all have just one date.  And God spoke to my heart....

You have one date because you are still alive....

And so does she....

I started crying tears of gratitude as I thanked God that He is patient with my doubt, but never leaves me there long... and always proves himself faithful in every detail.  I look back and know that 3 years ago when I mapped out her stone, in all it's 'imperfectness', He knew that I would come to that moment on Friday where He would use the very inscriptions I have been staring at every Friday for 3 years to remind me that He is here and that she is there.... and while she dances eternally in His love there... I dance in it here.  Somehow, I just know that we are dancing together... In Christ we are united.  Today, tomorrow... forever. 

Friday, November 8, 2013

Gently Loved Clothes

This week, I was in the attic looking for my fake flower arrangements that I had made for Rachel last fall.  I looked around at my bins stacked high of girl clothes and felt convicted over my storing up these beautiful clothes for a girl I don't have - and might never have - when there are so many people in need. 

I heard something I really didn't want to hear.....  Give it away.....

I got the idea that if I pulled it all down and invited people to come grab whatever they wanted, that it would save me from the work of sorting and delivering.  So I put this on Facebook:

"Giving all my girl stuff away is painful since the only reason I can is because Rachel is not here. I had held onto it all in hopes that Des would have a little sister to pass it on to. I'm tempted to want to sell it since it's all so nice, but God put it on my heart to give it away.... so here it goes... if you have a girl in size 4-8, come on over. 6-8pm tonight and tomorrow night this stuff is free to take if you can use it *now*. (not for stocking purposes ) Winter coats and boots in great shape, all sizes. dress boots, sneakers and tons of clothes that I'm trying to not be sentimentally attached to. (they are just clothes, Stacy, and Rachel doesn't need them...:/) If you can, please bring change as my awesome kids plan to sell lemonade and brownies that they will donate proceeds from to Rachel's birthday care baskets we are making. If you don't have change, I'll give you some. I always like them to have a successful lemonade stand :)
feeling freedom in letting go. "

I was all about it... for a little while.   But as the time got closer, I started to get anxious about it.

I'm not going to lie... I cried.  A few times.  I sat in my living room, surrounded by these clothes and as I looked at the bins, it became so obvious... I stopped saving them at size 7/8 - the age Des was when Rachel died.  The year I realized that I didn't have a girl to pass them down to. 

These clothes represent a shattered dream... my broken heart....the reminder of a tiny grave.  They represent the loss of years of watching Desirae get to sister a sister....  they represent the love that a mother feels for her first born - the little girl who made me a Mama. They mean so much more to me than.... well, than clothes should.  *sigh.*

Des & her friend made some brownies and cookies and the boys made fresh lemonade and they had a little 'bake sale' to raise money for Rachel's Care Baskets.  There were only a few people that came, but they all made a donation for some yummy treats.  The kids were having a blast.  They made $20.78 towards Rachel's baskets! (Thank you to everyone who contributed!)

A quick dinner before the sale began :)
("Tasty Tuesdays" is the name they gave their baking club because they meet on Tuesdays to bake)

Some neighborhood kids came by to buy brownies and lemonade

Isaiah pulled up a seat to watch TV while people were looking at clothes....

Right before anyone got here, I looked at my Paypal to see if anyone had donated towards Rachel's baskets... There were 2 donations.  After Paypal took their fee out, I was left with... you guessed it

For me, this was confirmation... I was doing what I needed to do.  This combined with the bake sale $ covers the first basket!

As the night went on, it became more and more obvious that this didn't have much to do with clothes.... God is awesome.

The conversations had and the amazing way that we learned Rachel was in all of it... the way that these people knew of us because of her, even though I had no idea.  The way she brought us to a place - even in her death and in having to let go of clothes she can't wear - where we know people we wouldn't know otherwise.  The way she continues to bring us new friends and sweet fellowship.  She has been such a blessing in so many ways. 

It was 11 pm when the last lady left... we prayed together over some hard stuff she had shared with us... standing in the middle of these bins of laundry.... It was beautiful.  And Rachel was with us.

I didn't realize it on the 3rd when I decided to do this, but I believe this was a big part in my grief journey.  I only realized it because it was breaking my heart....  giving away clothes has never hurt so much.  But it wasn't the clothes that were hard to let go of.  It was more of her... what I'm missing with her... that had my hands clenched tight.  But, I can't hold on forever... so I let it all go....  well, my hands did... my heart is still working on it.

Sunday, November 3, 2013

Love Beyond Words

It's November 3rd.  I can hardly believe that one month from today, will be Rachel's 3rd birthday. 

Three long years.  I hate it.

If you've been following along for a while, you know I like to do something special for her day.  If you're new, the recap is that the first year, we sponsored a couple of young girls who were having babies that month.  You all helped me to raise, allowed me to purchase, and then blessed me to donate $843 in items for new moms who had chosen life despite their 'imperfect' circumstances.  We had an amazing gathering at her grave - I was lost in tears when I pulled into the cemetery to see cars just lining the road... the weather was perfect, the fellowship sweet.  I felt so loved and so supported - and so not forgotten.

Last year, we did a puzzle fundraiser where everyone purchased a puzzle piece from a photo puzzle I had made of us at Rachel's Race that year.  Each piece represented $10 towards our cost of applying for the 501(c)3.  And although I had worried that people wouldn't still be interested, you all donated more than I could give in puzzle pieces!  It was unreal.  I still have the puzzle framed on my wall... and I just caught myself staring at it tonight.... But the hard part about last year was that it ended up snowing on the day of her party - only a portion of the people showed up and many that said they were coming back to the house after, didn't.  And I was disappointed.  If there is one thing worse than having to try to celebrate my daughter's birthday on the same day as the anniversary of when she died, it's being let down by my expectations of others.  So I decided that I needed to change things up.

And it's coming....  another birthday.

I've had big plans on what I wanted to do - the "big" part of it was that I plan to go more simple.  That's hard for me, just because of who I am... but I know I need to.  I have 5 living children here that need me and take up more time than I even have to begin with.  I need to find meaningful things I can do to honor Rachel that don't take a lot of me from them.  Because let's face it, Rachel doesn't need me.

So, what has been on my heart for a long time now is to donate care baskets to the hospital.  When I was pregnant with Rachel, I received an amazing package from String of Pearls.  It had stuff in it that I would not have thought to bring myself.... but I got it ahead of time because I knew Rachel was going to die.  I always wondered what about the people who don't know ahead of time their babies will die?  What if they go to the hospital planning to leave with their baby - and then can't?  They have no time to plan for making memories there...  And me being the planner I am, that breaks my heart. 

Shortly after Rachel's last birthday, I knew this is what I wanted to do.  My original thought was to have her party in October, around the anniversary of her baby shower and Infant Loss Awareness Day... invite everyone... have them help me assemble the baskets... and then on her birthday, just Me, Matt and the kids could deliver them to Maine Med, where Rachel was born. 

A month or so before October 16,  I mentioned to my friend Lisa that I just didn't have peace about the party - and decided not to do it.  Once again, God was leading me and I'm glad I followed, because after Jailyn's (my niece) stroke, I was in no condition to be planning anything.  

So, although the baskets are not assembled... and there was no big party in October... and there won't be a big party on December 3... I have peace about the decisions I have made and trust God's leading in this.  I'm realizing that her first birthday will never happen again and it's okay.  I used to be so scared to not be able to make that happen again.  But I know that it was a beautiful gift given exactly when I needed it - and this year, I know that God will give me exactly what I need too.  He always does.

My vision for this is that as we put together and physically donate these baskets, my children will see us doing something that they understand.  Donating $10,000 after Rachel's Races is amazing - but they don't fully comprehend that - and it probably doesn't feel worth losing all the time they do with me to hear that we gave money to a great cause....

I think if they get to help assemble the boxes and then we all go together and THEY get to hand them to nurses who know about Rachel, knowing that other families like ours will benefit from it, in the only place they ever spent time with their little sister outside of my womb... it will leave more of an impression.  Loving beyond words....

If this goes well, I'm hoping that this will be a simple, yet meaningful way to spend December 3rd each year.  The idea of being able to spend a little bit of her day each year in the hospital she was born at sounds hard, but very healing to me.  I'm looking forward to having time to talk to the kids (and the people at the hospital) about her.  To tell them how much I want to do for others because of God's great love and provision for us when we were in that place.  To be able to keep her memory alive for them... and for me.... as the years go on. 

Here is where you come in....  because we all know that I would not have been able to do anything I've done for others in Rachel's honor without all of you.... 

I purchased 10 Memory Boxes.  I have some beautiful and meaningful items that I would love to fill them with.  And I'm hoping you can help me do that.  I have tried to create boxes filled with the things that meant the most to me - or things that I later wished I had had. 

Des & I went to the store with the plan of buying items to make memories boxes.  I 'stumbled' across these boxes, which cost close to the same as the materials to make boxes, but are nice quality, have a magnetic closure AND I thought the words on top were *perfect* for someone who just lost a baby..."Love Beyond Words"
And here are some of the items I have had made or found to purchase for these memory boxes...

Baby wears pants and hat, Mama & Daddy keep a heart made from the same material.  All 10 are in neutral colors so they can be utilized more easily.  This set was made by Lisa Borders at McKinley Rose Boutique in memory of her baby Eli - Hence the name "The Eli Collection".  When I first saw this, I cried.  I searched high and low for something that I could bury Rachel with and keep part of... I would have LOVED to have her in one of these sets.  The awesome thing is every one of them is different so their baby will be wearing something unique to just them.

Each of these necklaces contains 3 dandelion seeds.  I plan to add this as my "Rachel piece" and will include a little note about her with it.  I have covered the cost of these as Rachel's birthday gift. <3 td="">

Because every grieving mom needs tissues... and we all like to cry in style.... the cutest tissue holders I have EVER seen. Another beautiful creation by Lisa Borders from McKinley Rose Boutique. 

A photo album to carry around.  I carried mine with me for the first year.

A place to keep prints...Printed to 4x6 to fit in the album

A journal... important for so many reasons - and the wording was irresistible. "We do not remember days, we remember moments".
Planting, nurturing and watching flowers bloom has been a very healing process for me since Rachel died.  I have had so many encounters with God in my garden, I can't count them all.  I plan to give a packet of these and a packet of daisies in each basket.
The back
The bear in the middle is my Rachel Bear :)  It's funny how just seeing 'her' on this gift certificate made me smile. 

the parents can use these to get a stuffed animal that has the same weight as their baby.  When they contact BB, they will contact me for payment because they only charge for shipping and that price differs depending on the weight of their baby.  For me, having my Rachel bear has been amazing... to be able to remember what the weight of her felt like in my arms.  I also love that as people cash in their gift certificates, I will know that one of Rachel's boxes was put to use and I will be able to pray for that family, even if I don't know who they are - and know that Rachel's life had impacted another person.

The sense of smell is very important during tragedy because it will always remind you of that time.  To this day, the smell that brings me back to my time with Rachel is A&D ointment.  My hope is that if all their stuff is packaged with a scented candle, when they light it on special occasions and when they are sad, the smell will bring them back to the time they had with their little one(s).

 I also am going to add a kit to make a handprint or footprint mold, along with some extra paper for prints, an ink pad, a list of resources that I found helpful, and a list of suggested photos to have taken in case they don't think of it.  I know if I didn't have my list of photos, I wouldn't have gotten half of what I did. 

When added all up, these care baskets cost $62-75, depending on how much the shipping for the Birthweight Buddies ends up costing.  I have added a 'Donate" Paypal button to the top of my blog (anyone know how to add it inside a post?)  and am hoping that you all will join in with me once again at supporting others in need and loving those in pain through Rachel's Legacy.

The worst part of not doing Rachel's Race this year for me was that I didn't get to do the baby remembrance ceremony for other baby loss families.  It's so important to me to help others to feel like they get that chance to share their baby with the world.  I have been extremely blessed in how far Rachel's story reached and I know the blessing of knowing that people speak about her.  So, if you would like to sponsor an entire memory box in your baby's memory,(or as a gift for someone you love) I will add a card that tells them it was "sponsored in memory of...."  Please specify that in the comments on paypal or in the memo line of your check.

Checks can be made payable to Baby Rachel's Legacy and sent to PO Box 454, Rochester, NH 03866-0454.

I can't believe it's been three years.... It doesn't seem possible, yet I can't remember my life before her - nor would I want to.  The changes I've made the past 6 months as far as how much I put into my blog and things like decorating her grave and not having her race were (are) hard - and it makes me nervous to even ask for help again since it seems like it was so long ago for everyone else and I'm afraid of being rejected. But I know what is on my heart and I know God put it there - so I'm putting my heart on the line again and humbly asking for help because it's the only way to make it happen - and that's what Mamas do for their babies.... and that is what daughters do for their God.

Rachel Alice, I miss you like crazy.  On the way to church this morning,  the bank said it was 43 degrees out.  It felt like you were with us.  Daddy & I went and fixed up your grave today.  I hate fake flowers, but it's getting too cold to keep live ones there.  I got you a new flag holder, it looks nice.  The flag I hung says "Love lives here".  And it does.  We went for Pizza after with gift cards Donna gave us - the place we sat had animals that kids cut out and put their names on hung on the wall - and right behind our table was an elephant with a heart shape cut out of it and "Rachel" written on it.  We all smiled. You are loved more than you know... more than words could ever describe... you are loved beyond words.  Miss you sweet girl.

Friday, November 1, 2013

Celebrating Life Through Another Diagnosis

So, clearly I have not blogged in a while... or done any more of the Capture Your Grief Photography Project as I had planned.  Actually, I haven't done much of anything for someone who is constantly busy.  I have a long list of to-do's that I keep putting off... I feel so overwhelmed with life that I just can't think straight.  Can't get out of my own way.

I don't think since I started this blog well over 3 years ago that I have gone as long as I just did between posts.  I've had many blog posts brewing in my mind and heart, only to get lost in the chaos of life and never make it off the tips of my fingers.  That would be okay if I didn't know that writing always helps me work through the things that stand between me and this thing we call healing.

I struggle because I want this blog to remain Rachel's - to be about her and my journey with her... but she's been gone so long that it's hard to actually write about how she is in my days, because she is just woven into every fiber of my being and is always 'in' everything I do... the happy, the sad, the indifferent.  She is there.

Some of you will remember that shortly after I had Asa, I randomly fractured my tibia.  That was followed by a few months of extreme pain in my joints and bones.  I went to my regular doctor, my OB, the ER, a Rheumatologist and even had a bone density scan done.  I had test after test.  Scan after scan. Advice after advice...."Eat this, don't eat that".  "Do this exercise, don't do that one". "I had this before and all I needed to do was...." My primary told me the only off in my blood work was that I was vitamin D deficient.

I tried everything. Eventually the pain started to go away.  I started to be able to do stairs again.  I gave vitamin D the credit and I never went back to the Rheumatologist... and never thought twice about the fact that I didn't get my results.  I eventually started running again and was feeling pretty good and fairly strong.

A few weeks ago I got what I thought was a pinched nerve in my neck.  Within a couple of days, it took over my entire neck and back to the point of tears.  I could barely even pick up my little man... I was thinking I had some type of virus that was going to go to my brain and kill me - I know, that sounds dramatic, but it hurt and it was not a pinched nerve kind of feeling.  I've had neck issues for about 5 years - had x-rays that have shown "arthritis" and so neck pain is not new to me... but this felt different than even that.  Then I started to have the joint pain again.  Well, it never *really* went away, I think I just get used to living with it.  But it started to be the kind that keeps me up at night.  I really started feeling it when we were in Maine.  My knee hurt so bad I couldn't sleep... but I just kept blowing it off as me being out of shape and overweight.

Last week I decided to call the Rheumatologist to get my results from the blood work he ran almost 2 years ago... The nurse said she would call me back and when she did, she said that the Doctor said I needed to come in for the results.  She said "It did show something that might explain why you're hurting".  They got me in 2 days later.  I was hoping this guy just wanted to make an office visit out of this... but that's not the case.

I tested positive for two things. 

One is called Spondyloarthritis.  I think (from what I understand) this basically is a group of autoimmune diseases that are similar to Rheumatoid Arthritis.  He has not narrowed it down yet, but I have every visible symptom of both Psoriatic Arthritis and Ankylosing Spondylitis,  which are under that category.  He said most often, the different forms in the group are not separated, but tend to all be present in one form or another.  They both attack my joints, but the latter will cause hairline fractures in my spine which then cause the vertebrae to fuse together, making me lose range of motion. (in severe cases, so much that you can't look ahead)  I've already lost range of motion in two finger on my left hand.  I only noticed because when I leave Rachel's grave, I always give her the "I love you" sign and I can't do it anymore.  Based on the pain I have in my spine, I believe I do have damage there, but he wants to wait until I'm done nursing to do a scan.  I'm wondering now if this is why my tibia was broken without me knowing how I did it....

The other thing I was positive for is Crohns. (another autoimmune disease that attacks the stomach and intestines)  My older friends will remember all the issues I was having with that years ago - but again, even after 2 colonoscopies and an endoscopy and a ton of doctors visits, they diagnosed me with IBS (which is totally a BS diagnosis that they give to anyone they can't figure out, in my opinion).  I've watched my sister struggle with her crohns for years now.  It's been a nightmare. And even though it's not a surprise given the symptoms I have had and the fact that it runs in families... It's still a hard pill to swallow.

Thankfully, the Rheumatologist I am seeing is amazing.  Besides the fact that he is the only doctor out of a dozen I've been to in the last 5 years who could figure this out and didn't just blow me off... He is not only very pro-breastfeeding, but also respectful of my allowing God to direct us on the children we have and working with me from where I am rather than pushing his opinions on me.... unfortunately, there is no cure (besides a miracle) for either of these things - and any meds that will help with pain and damage caused by the disease come with a long list of scary side effects, including causing Lymphoma and other cancers.  One of the two he wants to use on me says that in their study 30% of people who used it had babies with neural tube defects.... as if THAT doesn't rub me the wrong way....

I had more blood work done and go back on Wednesday to try to make a plan of action for treatment.  Please pray for me, I've been in a lot of pain - especially my knees down to my feet (today anyway, but it moves around like crazy) - and I want to do what I need to in order to slow down the effects/damage to my bones and joints, but I'm going to need God's guidance in making these decisions about medication and natural options.  I do know it's not likely that I can do nothing.

Please, I'm really not wanting ANY advice right now.  I'm still digesting this.  I have barely even looked on line because I just can't mentally handle it.  There is a lot I still don't understand and I am still waiting on more information from the doctor. I know that I am in pain.  I know that what I have is incurable.  I know that there is a good chance that it will severely affect my life in every aspect - and so I really don't want anything else but hugs and prayer.  I need prayer.  It's all very overwhelming.  But I'm okay with not having answers right now.  So please just let me figure this out at my own pace. 

So that is the medical side of this - but I need to get out what has been going on in my mind and heart - all logic and science aside.

I went to the doctors for a "routine ultrasound" on August 4, 2010 and left there with a diagnosis that changed the rest of my life. 

When I left the doctors on Monday, I felt (in a much different way) the weight of a diagnosis again.  Just like on the day of Rachel's diagnosis, the first thing I did was call my mom (who was babysitting just like she was for Rachel's ultrasound) on the way out the door... and standing in another parking lot, outside of that same van, I told my mom what I had just heard - And although I didn't even know the technical name of what he told me I had, I knew that the rest of my life is going to be different.  I left Rachel's ultrasound with a piece of paper with the words "Anencephalic Baby" scribbled on it. I couldn't even read it.  I had to have someone else tell me what it said.  I left this appointment with more scribbles that I couldn't read and had to have someone else decode it for me. Obviously, I didn't feel the tragedy that I felt back then, but I felt the same sense of powerlessness.  The same sense of the fact that I really didn't fully comprehend what was happening.  And the same sense of dependence upon the only One who can do anything about an incurable, unexpected, life changing diagnosis.... 

I still find it all hard to believe.  I find it hard not to look into my future and worry about what this is going to mean for my quality of life.  I have wondered if I will ever be able to do the things I hoped to do.... I wondered "What if I can't pick up my grandchildren?"  Things I have never had to think about - things that most people don't think about.  I worry about what genes I have passed on to my children and if they will have to endure this crap.  But somewhere in the middle of all of this 'reality', God has brought me to the realization that He brought me to with Rachel.

I have to celebrate life while it's here. 

For today, I can pick up my kids.  It hurts, but I can do it.  I can climb stairs, I can clean my house.  I can do laundry.  I can rearrange my living room and deep clean my upstairs.  I can drive. I can bring my daughter shoe shopping.  I can tie my son's shoe and change my baby's diaper and nurse him.  I can give my toddler 10 kisses over the side of the crib (that hurt my spine like crazy, but he got what he needed from Mama tonight) I can cuddle with my boys and put my ear on their chests to listen to their heartbeats.  I can still give haircuts and I can still type...

I did all these things today.  I do have a feeling that this is going to be a very painful road.  And honestly, I'm not ready for it.  But I have been feeling it coming for a long time.... I trust God's timing in allowing me 'in' on this information.  I know that He doesn't cause death and sickness.  I know He doesn't always heal people.  But I know that He will be with me.

So my goal - even if I'm scared of what this all means or what lies ahead - is to embrace each moment I have and each thing I *can* do.  Just like I did with my girl.  I fully intend to keep using my left hand to sign Rachel "I love you" as I drive away.  I will not switch to my right and just let this thing take over my bones without a fight.  I'll admit, at the risk of sounding vain, I am worried about being hunched over with crooked fingers, broken and brittle nails and bulging eye balls.  I'm also afraid of being in constant pain.   I just don't want Spondyloarthritis or Crohns to define me anymore than I wanted Anencephaly to define Rachel.... but even if it gets to the point where I cannot hide that these things are part of me, even if I one day have to admit that no matter how hard I fight, it's going to win....Like I had to on December 3, 2010 when I watched my little girl die in my arms...  I pray with all I am that I can allow God to make something beautiful of it.  Because if nothing else, I *will* leave my children a legacy of what it means to hope in Jesus and trust in our God.  I will.  Death and sickness only win on this side of heaven. 

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.