Tuesday, November 30, 2010

A Bright Light in the Dark Days

We had our last appointment before Rachel's birthday today - had our last ultrasound and met with the surgeon that is going to do my c-section.  We were able to have our favorite sonographer today...
 
We got some good pictures of our pretty girl! She is nice and cozy down low, so part of her head is blocked by my uterus, but Susan put me 1/2 way upside down and managed to get some good shots.  And one of my hopes has come true... Rachel has some hair - and it looks long!  I saw that last week too, but we got a picture this time.  I'm assuming it will be black, like all the others - but it wouldn't surprise me if it's red...she is a little feisty!

On the way home, Matt graciously listened to me re-cap the last few months.  The summary:  A long road in a short time.  It's been so hard, and yet the most beautiful thing I've ever experienced.  I remember in the beginning really struggling with how to walk the line of beauty and sorrow... now it seems to come naturally.  Rachel has made me a better and stronger person. 

Our meeting with the surgeon went well... we went over how it will all play out.  She actually laughed out loud when we said I didn't want to use narcotics.  I haven't used narcotics for anything, including getting my wisdom teeth out since I got sober 9 years ago.  I have a high pain tolerance (get that from my mom) but I don't want to be foolish about it either.  I don't want my mind to be foggy while I have time with the baby, but I also know that pain can be just as distracting... please pray that I will have wisdom to know what to do and that my pain will be easily controlled. 

She felt my belly and said "are you having a contraction?"  I said "no, I'm just muscular" :o)  My belly is always as hard as a rock cause it's stretched to the max.  I told her she should plan on getting sprayed when she cuts into it!  She said she'll wear her galoshes.  I asked her if she has ever delivered a baby with anencephaly before and she said "only for terminations" - my heart broke for those women.  I know that path brings only the sorrow...no beauty.  It's painful enough as it is, but that only makes it worse.  And they think they're taking the "easy" way out.   I'm hoping that Rachel will show all of these doctors and nurses and medical staff the truth of that...I'm sure she will.  I hope they can never look at a "termination" the same.  It's so sad.  I cried as soon as she left thinking of the fact that she has been part of such a dark thing.  I pray that Rachel will shine the light on that truth for her.

Then we got home and there was a package waiting on the table.  It said "To Desirae Aube, this is a week of celebration!  Merry Early Christmas" - I opened it and called her down to see and video taped her reaction... An American Girl Doll...  "with the accessories!" (in Des' words)  An anonymous gift, one she has been dying to receive.  She got out her catalog (that she looks through almost every day!) and read to me the story of Kit (the doll's name)  The title reads "A bright light in the dark days of the Great Depression - 1934"  and it tells about her dad losing his job and says "what she discovers:  Sometimes, along with hard times come good times...  have you ever faced tough times and found a way to stay hopeful?"  And Desirae yelled out "That's why they gave me this doll!!  It's cause of Rachel!"  She continued reading... "Even in tough times, Kit wakes up with a sunny outlook" and ran to get Daddy to tell him all about how she related to this doll.  "Daddy, Daddy!  I know why they picked this doll!...."


I always thought American Girls were a waste of money...  but I can't begin to tell you what a blessing this doll was in our home tonight.  Whoever you are...  Thank you.  We are humbled by your generosity. 

Monday, November 29, 2010

I'll take 6 pounds for 4 valves, Alex

Over the last few months, I have spent multiple hours on the phone with the organ bank getting a plan in place for donating Rachel's heart valves...  I finished the "medical social" interview last week and the "consent form" phone call a few days ago.  As we went through that form verbally, they didn't know it, but I started crying...my heart felt like it was being cut out too...

There were 12 or more questions, but about 6-7 into them, these are the ones that got me...

"I understand that there is no guarantee that all tissues recovered will be medically suitable for transplant and/or research and that those tissues that cannot be used will not be returned but will be properly disposed of according to medical regulations"   - "yes" I said...  deep breath...

" I understand that the New England Organ Bank will make every reasonable effort to minimize any visual change to the body and any delay in the funeral arrangements"  - "yes" I heard myself say and that's when I lost it.  Some things are too much for a Mama's heart - taking out my baby's heart and thinking about what kind of "visual changes" that will bring is one of them.

"I understand that all charges associated with the medical care provided to the patient as well as funeral expenses remain the patient's responsibility"  "oh, I wasn't aware of that" I said, "never mind, I'm not interested" I continued and they got quiet...  "just kidding" I laughed.  I had to lighten it up for myself :o)  I was told once that I hide my feelings behind humor... and they said it like that was a bad thing!  Works for me.  Laughter is the best medicine some times.  I won't tell you how I responded to some of the medical social questions...  I will say they were laughing.  She actually thanked me for the laughs at the end of that call. 

Man, this has been a tough part of this journey.  I pray that Rachel will be big enough and that the recovery will go smoothly so that there will be other babies who live because of her. 

I just got a call from them again, checking in to make sure I'm still scheduled for Friday...  I asked what the plan was if Rachel lives long enough to come home with us.  She said "well, that's a good question, we hadn't thought of that" - I had thought of it, but kept telling myself it wouldn't be necessary...  well, it just might be.  This girl is a strong cookie...  so, let's think about it!

OK, so since I started writing this, they just called me back again.  Apparently the requirements for weight have changed.  Rachel will need to weigh 6 pounds on Friday in order to donate her heart valves.  (They may consider it if she's really close)  On Wednesday she weighed approx. 4 lbs 7 oz.   I told her that I was going to send out a prayer request and that I am sure that Rachel could weigh 6 lbs come Friday... Please join me in prayer for this...what a testimony that would be to God's power!  I think they have pretty much written it off as not possible... with God, all things are possible!

PS - If my title makes you wonder if I'm on something... no, I'm not,  just "hiding behind humor" as usual - however dry it may be...

Sunday, November 28, 2010

My Break Dancer

OK, so my belly is stretched to the max...hurts to the touch - I'm having a ton of contractions tonight and am really uncomfortable.  If my little dancer doesn't slow down on her dancing, I'm afraid she might break my water!  She is really being rough on me tonight.  Pray that she'll hang on for 4 more days!

Saturday, November 27, 2010

Hopeful Expectation

I know that I have probably given the impression with feelings I've shared that Rachel's birthday will also be the day she dies...  And while I know that is a possibility, I also know that God could still heal her completely.  I don't believe that to be His plan, but I don't doubt it could happen - and would obviously LOVE to be wrong on that one.  However, I do feel very confident that Rachel could live long enough to come home with us.  That is the true desire of my heart and it would not surprise me if my merciful God granted me that.  It is scary to think of her dying here, but not as scary as the thought of having to let her leave the hospital with someone else.  I am trusting God that He knows what is best for us and will work that out accordingly. 

I just got an email from a friend asking if we wanted to borrow a baby swing in case Rachel lives a while.  She admitted that it might sound "crazy" but that she is just "hopeful"...  And I'm sure that many reading this think it sounds crazy.  But you know what?  It gave me a big smile.  I pictured Rachel home with us and us scurrying around to get baby stuff out.  I thought of how I probably wouldn't want to use the swing cause I wouldn't want to put her down... but that I'd be happy to get a picture of her in it.  I thought about how sweet and irreplaceable those first few days at home with a newborn are and how that could happen with Rachel.  I felt hope.  I think I've mentioned before that "Hope does not disappoint us" (Romans 5:5)

Sometimes I think it will be more painful to hope for a long time  with her and not get it, than to just expect little time and be happily surprised.  I guess we call it self-preservation.  But I know that I don't need to preserve myself.  God is going to preserve me through this - and He will not make it harder on me because I was hopeful.  I am positive that no matter what happens, He will carry me and He will bring me joy and peace.

It has weighed very heavy on my heart to hear that people are planning out an estimated date for her funeral before she's even born.  And I am sad to say that I have followed suite in those conversations... it's an awkward place to be.  I know she could die right away, so when people are asking about when the funeral is, I almost feel obligated to give a date - and I have actually tried, although never in a very articulate way to tell them what day to aim for.  That is ridiculous.  She hasn't even been born.   People usually die before you set a date for a funeral.  And yet I am somehow supposed to be able to do it the other way around... as if I know when she'll die.  There have been plenty of babies with anencephaly that have lived days and a few that lived months.  Who am I do decide how long God has in mind for Rachel? 

After just getting a glimpse of hope and joy through a simple offer of a swing and the idea of Rachel outliving everyone's expectations, I felt like I am selling her short.  She deserves for us to be looking forward to her birthday before we set a date for her funeral...  she deserves for us to be excited over her and not just sad.  She deserves a birthday party (which by the way, we already have planned! - I asked my mom to pick up a cake and balloons on the way to the hospital and we WILL sing "Happy Birthday" to my girl!)  She deserves her life to be acknowledged and not just the fact that she will die.   I mean, technically, we're all going to die, so should we all pick a funeral date?

The one thing that I have noticed throughout this journey is that the people who have already lost a baby leave a different kind of comment when someone posts about the birth and death of their baby...  it reads something more like "congratulations" than "so sorry".  They understand that even if your baby dies, you are still that baby's mother.  You will always be and the baby will ALWAYS be part of your family.  They understand that "congratulations" are in order.  There will be plenty of time for the "so sorry" - Even at Rachel's shower, we received sympathy cards...  we were celebrating her life and got sympathy cards.  While I can understand, it still hurt my heart - but not as much as those who didn't get a card at all cause Hallmark doesn't make a card for such a thing.  "Congratulations, you're having a baby" would have covered it.  We have people who have never been concerned about me through any of my other pregnancies or births, and not even through this pregnancy that want to be there to meet Rachel, because she's going to die... If she was going to live, they wouldn't be so interested.  It seems her death is already overshadowing her life.

I've struggled with the thought of Rachel being taken from me...  I have never had a c-section, and honestly, it feels like a rip-off to me.  I hate the idea of the doctor cutting her out of me instead of being able to give birth to her myself.  I want to nurse her and she might not be able to do that... I have always nursed my babies.  That is another thing I feel I'm being robbed of.  I am painfully aware of the fact that I won't see her grow...her childhood won't exist.  Instead of rocking her to sleep, I'll be burying her in the ground.  I won't see her get married or have her own children.  God's plan for her, hurts for me.  I've had nightmares where I watch all these women give birth to healthy baby girls and as soon as they get them dressed in their pretty pink outfits, the doctor comes and rips the baby out of the mother's hands and the mother screams like crazy.  That might only be a dream, but it reflects my feelings and fears about letting her go... it doesn't feel like letting her go, it feels like she's being taken. 

The last thing I want is for her life to be taken from me while she's still alive.  I am spending this last week before her birth, waiting for her with hopeful expectation.  Waiting to hold her, hoping to nurse her and planning to take her home with us... because I know that Hope does not disappoint us.  Things might not go that way, but I will never regret loving with all that I am and hoping without reservation.  And for the record, I have NO idea when her funeral will be.

Friday, November 26, 2010

Rachel's Vault

A while back, I ordered the vault for Rachel's casket.  I had an extremely difficult time picking one out.  There were some that were "prettier", but they didn't look as sturdy.  It seems pointless to worry about the casket being protected since it's going in the ground and never coming out, but this was one of my hardest choices.  I cried a lot through this part.  So, I ended up talking to a lady at a company called Polygaurd and she helped me pick one.  She also helped me with the price and gave us a break on it.  It was a "happy" ending to my search... 

It came in the mail while we were gone on our Maine vacation in September.  Our neighbors were collecting our mail for us, so a day after we returned, they came over with a bunch of mail and a huge box.  I knew right away it was the vault.  I didn't open it until later and when I did, I fell apart.  I called Matt at work "the vault is ugly and it's smells funny" I said through my tears.  He said it's ok, we'll paint it...  we'll make it look good. (Truth is, the vault was fine.  It's just nothing is going to look good enough for my girl)
I went to the store and bought some paints.  A few weeks back, he spray painted it for me (with Isaiah's help)  They painted it a soft pink and I was already feeling better, but we were still going to decorate it.
 So yesterday, since we were all here, we got out the paints and decorated Rachel's vault.  I cried a few times.  It's hard to imagine that she'll be inside this thing...even though it is much prettier than it used to be and doesn't smell funny anymore... I still don't want to put her in it. 

  
 We all put our handprints on it -  When I did mine and lifted my hand, there was the shape of a heart left in the middle without paint on it!  (you can see the pink heart around the yellow one I drew)  It was cool.  As always, my heart for this precious girl shines through.  I added "always in my..."  Wish she knew.
 The kids' side... Sam was SO not into this.  We managed to get his hand on there, but I had to do some touching up.  He liked washing his hands better. :o)

Lamb by Desirae!

So, there you have it...Rachel's vault.  I would love to write something that could really articulate my feelings on this one, but I've got nothing. 

Thursday, November 25, 2010

Happy Thanksgiving!

We have a book, Growing in Gratitude - Stories of Faith for Families, that we started using each year at thanksgiving.  It has a short story from History and lines to write what we're thankful for at the end.  This year, we did "Does God really know what's going on? - Being thankful for providence" 

It's tells the story of William Bradford... how he loss his father, grandfather and then mother all at very young ages and how he then got very sick physically.  It says that it was during his long illness that he finally saw a glimmer that God was in control.  It was these circumstances that allowed him to learn how to read and write, which not many people had the privilege of back then.  It was through those skills that he came to know the truth about the bible... and through that truth that he was called by God to sail on the Mayflower over here - and proclaim what is known as the first Thanksgiving...the day we are celebrating today.

At the end it asks "Can you believe that God is providentially working in your life and circumstances?  Give thanks today for what God has allowed in your life that might not make sense to you now.  He is not asleep.  He has a plan for your life.  Will you choose to believe that He is at work?"  What are you thankful for?

Our answers:

"I'm thankful for Rachel!" - Des
"Me too" - Mama
"Me too" - Daddy
"I'm fankful dat God gave me strong" - Isaiah
"Happy happy, joy joy!" - Samuel  :o)

Do I choose to believe that God is working through this?  Absolutely.  And it's not really a hard choice, it comes automatically because God has proven Himself over and over in my life.  Do I like His plan?  No.  But I don't know the whole thing yet.  Will it ever make sense?  You know, I'm not sure, but in my experiences with God, He has always shown me "why" exactly when I needed it.  That doesn't mean it doesn't hurt or that the "why" removes any of the pain.  It just shows me His love and compassion through the pain.

I have so many things to be thankful for...my amazing husband and his devotion to me and our children, to be blessed to stay home with our children, my family, our church, how God rescued me from my life of misery and gave me true joy, to know the blessing of Rachel, to have another experience in my life - although heart wrenching - to see God work in a mighty way and to be a part of that. 

Today we have decided to stay home cause my pain makes it very difficult to be out...plus, we don't have many days - ever - that we all just bum around and vedge for the day. (I'm not a 'vedger' by nature) We need this right now.  So, we did our morning Thanksgiving devotion together, pulled out the Christmas movies and snuggled up on the couch to watch Rudolph together.  Don't think life could get much better...

Oh, but wait, it does...when I told my mom we weren't coming up for Thanksgiving, she decided to bring dinner to us.  Yesterday while she was watching the boys, she cut up the potatoes and put them in a pan, made stuffing in a pan, brought cans of veggies, cranberry sauce, and gravy.  Then last night, her & Keith (her husband) brought us down a 17 lb turkey that Keith's work gave us.  She had it all ready to be cooked (and had even cleared a shelf in my fridge earlier that day)  So, when I woke up to pee at 4:30, I threw it in the oven.  It's ready now, we've turned on the potatoes and tossed in the stuffing...in 1/2 an hour we'll have our Thanksgiving feast all ready and all we had to do was turn on the oven and mix the potatoes!  Oh, and snuggle together. :o)  Thanks, Mom! 

Life is good... and we are so thankful - even when things are hard, we know we are so blessed.

Wednesday, November 24, 2010

The 3 Aube girls go to an appointment

Another appointment...feels like 1/2 my life is spent driving to Portland and in doctors offices, hospitals, funeral homes and cemeteries.  I guess this makes me almost 36 weeks.

Today was a special day though - Desirae came with me!  She wasn't too happy about how long the appt was, but we had a great time together on the way there and back.  I love our conversations...and although I would never want to go back to just one child, man, is that easy! 



So let's see... what happened today...  well, apparently they took my emotional break down on Friday to heart because today they went out of their way to take time with me and give me pictures.  There weren't any pics of her face that really did her beauty justice, but here's her 10 fingers and 10 toes.  

She had her hands together as if she was praying...holding one hand in the other right before this pic.  You can also see part of her face.  And her feet, of course, we're kicking away at the top of my belly.  You can see one of them resting on my uterus...
  I love being able watch her in real time as I feel her dancing around.  I think she's picking up on some of Desirae's Irish dancing steps by the feel of it!
                                          
The sonographer also took time to measure her, even though "it was too soon" - she went ahead and did it.  I was so thankful for this cause on Friday they told me she weighed 3 lbs 11oz, which was only up 2 oz in 2 weeks and that worried me.  Today they said she was 4 lbs 7oz...  I don't think she gained 12 oz in 5 days, so maybe they were off on Friday, but either way, she's bigger and that is good.  She has to get to a certain weight in order to donate her heart.  They haven't given me a specific goal because she won't have the weight of her head, so the normal 6 lbs requirement doesn't apply to her...but the bigger she is the more likely her valves will be able to be used. 

I have hoped all along that she would make the 5 lb mark... I've never had a little baby, so this still seems tiny, but again, that's not including the weight that her head would normally add to it.  It might sound like a silly thing to be hoping for, but I'm holding on to whatever "normal" I can - and having my "normal" big baby would be a blessing.  She will be considered full-term, so it could happen. 


My fluid is the same as it was on Friday and other than my back pain, everything else has subsided.  I know I could be a lot worse off physically.  I've also stopped losing weight, which is good.  I'm feeling pretty good about how everything went today.  What a roller coaster this has been!

I have one more appt on Tuesday, which is a pre-op appt to meet the doctor that will do my c-section.  I had planned to go alone since Matt only has one day of vacation left and we need it for Rachel's birthday.   But it turns out Matt has to work Saturday morning (4 hours) and whenever he works a Saturday, they send him home early another day so he doesn't get overtime.  My appt isn't until 2:00 and he will need to leave 4 hours early to go with me... works out perfectly!  God is absolutely in the details.  I wasn't supposed to have another ultrasound, but I asked if we could do one more that day and they scheduled it.  Maine Medical has been very good to me.  I'm excited about another chance to see her.  9 more days and I'll be holding her in my arms.  I can't believe it is coming so quickly.  I am so excited to meet her, to hold her, to kiss her and to pack as much love as I can into whatever time we have.  I'm scared to let her go, but I know she's going to good hands.  What more could a mother want for her child? 

Tuesday, November 23, 2010

I had no idea

The morning started off rough today.  I couldn't find Desirae's piano book and I honestly didn't really feel up to a guitar lesson anyway, but after searching for 1/2 an hour, I gave up and canceled my babysitter and the lesson.  I was running late to get Isaiah to pre-school and feeling exhausted from the day already at only 9:10am.  Then the blessings started rolling in...  God always gives me relief through His people when I need it. 

First Dixie showed up - she came so I wouldn't have to bring Sam & Des with me to drop Isaiah off.  Ahhh...my load lightened.  While I was gone, she did my dishes... then took all my laundry home to do it and is bringing back tomorrow!  She said she is going to be my "laundry service" for a while!  I almost said no cause we have A LOT of laundry and I feel bad letting someone else do it, but then I came to my senses and just gave her a hug instead. :o) 

After she left, Nicola came...  mind you, I have never met this woman before.  Her and her husband Donnie have been reading my blog and she had twins last year and experienced the extra fluid fun.  So, she contacted me a few days ago and they wanted to do something for us.  She went out today and bought us everything on our list as a gift.  AND, although not on my list, they added some ice cream, hot fudge, and whipped cream cause they know my night time routine! :o)  I'm waiting for the kids to go to bed for this one tonight. :o)  Her kids played with Sam and wanted to know if they could keep him. 

Shortly after, Dixie showed back up with paper towels (I had mentioned I needed some earlier) and new oven mitts so she could wash my other ones... OK, I've owned them for close to 3 years and never washed them...oops.  But that won't be a problem after today!

I went back to get Isaiah at school.  Another mom asked when I was due and I said on Christmas...she asked "are you kidding?"  Looking at me it's obvious I'm too big to have another month to go.  I told her about Rachel and she asked "do you have a blog?" - Apparently she found my blog through the newspaper article that was written about us and my uncle Dale.  She gave me some words of encouragement and as I drove home, all I could think was "I had no idea"  I actually said that outloud and Des asked "about what?"  I cried as I explained to her that at the beginning of this journey, I had no idea what God was going to do with Rachel's life.

I had no idea that her story would reach people all over the world.  (If you've never clicked on that map on my page, try it... I just looked tonight and there are 38 countries where this blog has been read.)  There have been over 11,400 visitors and 36,200 pageviews in the 3 months and 2 weeks since I started this blog!  So many of which are people we don't know, but they are shedding tears daily over our girl.  I have received letters and gifts from people we don't know as well - even one from a guy in jail.   I had no idea how many people would know about her and would pray for us. I had no idea how many people would walk along side of us.  I have realized that this has happened in the places I would have least expected it and that the people I would have hoped to be there for me, weren't, but that God has given me friendships that will last a lifetime through that and weeded out the others that would have never bloomed anyway.  

I had no idea how God would carry us.   I had no idea how Rachel's story would change people.  Read the comments... people all over are saying how her story has moved them to be more grateful, more sensitive, to be better moms, better friends... to not take things for granted, to never have an abortion, to want to know God. 

I have learned how to accept help from people, and that it is not a weakness.  I have shared tears with people I've never met.  I have been given a whole new awareness of others' suffering and realized how oblivious I was to that before.  I have walked the valley of the shadow of death and feared no evil because my Lord has been with me.  I have become more grateful, more sensitive, I've become a better mom, a better friend.  I have learned to not take things for granted... I have learned first hand the amazing blessing and true peace that comes with choosing life for my child and I have come to know God in a deeper and more intimate way than ever before.

I look back over the last 3months and 3 weeks and I know that I am not the same person I was when I walked into that ultrasound on August 4th.  I will never be the same - and that is a good thing.  But looking back to that day, the feeling I had when we found out Rachel would die, the intense tears that fell for hours and that would continue for months to come, the pain, the despair...  who would have ever thought that God would do so much with it....  I had no idea.

Monday, November 22, 2010

One Serving Short of Complete

Went out to get our Christmas shopping done yesterday...  I know I won't want to be shopping after Rachel's born.  I can see it now...big belly, no baby is sure to bring on the "when are you due?" comments.  I am probably going to want to hide for a while.  It was nice to have Matt with me for shopping this year though. 

After we shopped, we met the guy who is doing our headstone (from Newburyport Memorial Art Co) over at the cemetery.  I'll be glad when our "dates" aren't doctors appt's and trips to the cemetery.  Anyway, we showed him the one we liked and, go figure, he was the one who set it!  He is a relative of a friend and works out of Mass so it's very unlikely that he sets stones up here...  It's the only one in the new part of the cemetery that is his.  God is good like that!  He met us up here so we didn't have to drive to Mass and I was afraid that working long distance would make it difficult to get what we were looking for. (I had actually taken pictures of that stone last week to send to him so he'd know what we liked)  Little did I know, he knows exactly how to make what we're looking for! :o)  Now we're just praying we'll be able to afford it.  We told him what our hopes were and now we're waiting on the price.  It was also really nice to have Matt with me for this meeting.  I've done most of the foot work for Rachel's birth and funeral without him cause he works when the people can usually meet.  It was nice to have his opinion and to not be alone. 

We were standing on our plots, talking about size and shape of the stone.  I looked down and right where Rachel will be buried, there was a dandelion that had died, but was still standing.  Dandelions are the only flower that continue to stand so tall after they've died.  And then become a great toy for kids. :o)   I wanted to take a picture, but had left without my camera (that's a rarity)  Made me think of Rachel.  I know her legacy will still stand long after she's gone.  My blog has them at the top for that reason too.  I also have a painting in my bathroom that my friend Heather gave me after we lost the last baby.  My request was a painting that said "My grace is sufficient for you, for my power is made perfect in weakness" - and she chose the rest.  She put dandelions on it.  what a coincidence!

It was cold at the cemetery and we were there a while.  My mom had the kids, again, so we could get this stuff done.  I said to Matt that we should pick up some hot chocolate to bring home to them as a surprise and said "today's a good day for hot chocolate"... and starting crying.  When they say grief hits you at unexpected times, they're right.  I would have thought I'd be crying at the cemetery while Rachel was kicking me as we were talking about her headstone.  (I told Matt that I didn't think she liked the conversation)  But no, it was on the way to do something fun with the kids.  Maybe me being task-oriented is helping me to forget the reality of this all.  I did choke back a few tears at the cemetery, but I've yet to fall apart through all the meetings and planning in front of someone else.  It's usually in the day to day moments when I realize how life goes on... good times still happen and soon they'll be happening without my baby.  She'll never drink hot chocolate with us - that sucks.  One of my favorite parts of being a stay home mom is when the kids go out to play and come in with red noses and we all sit at the counter and have hot chocolate.  I can do that with them every day if I want... and I love that.   My favorite parts of life will always be missing someone.  Hot chocolate will never be the same, no matter how great it is.   We will always be one serving short of complete.

Saturday, November 20, 2010

Blessed is he whose quiver is full of them!

I came home and found this note on my desk:

We have my sister's kids here tonight and I just overheard Des & Jailyn talking in the kitchen...

Des "Nana's our grandmother, we just call her Nana"
Jailyn "But her real name is Rachel"
Des "Just like my baby sister"
Jailyn "Yeah, your baby sister is going to be dancing in your hearts"


Anyone who doesn't see that children are a blessing are out of their minds. Blessings usually come with a lot of work and that is true of children...but man, I love kids. They are awesome. Last week we had Jailyn too and we went to Walmart. It was me, Matt, the 4 kids and Rachel.  The kids were being really good and they were laughing like crazy. It was the most light hearted trip we've had to Walmart in a long time. A lady walking by us actually said "Have 5 more kids" in a negative tone as she walked by. I was feeling a little moody and slightly PO'd that she was looking at my Rachel like a bad thing and said "I think we will, thanks"... I won't tell you what I wanted to say to her, but the truth is, I feel bad for her. She can't have joy in her life.

I know there were people who thought us being pregnant again this time a was bad thing. Some in our families..and some even in our church family. I wonder now if they think about the comments they made... if they regret the things they said or thought. And then I have the people who ask me why I didn't just "get it over with" and terminate or "why the doctors were making me carry her to term" As if she is just a nuisance to my life. I've had people ask if I would dare getting pregnant again cause the risk of having another anencephalic baby is higher next time - as if it would be worse to have another baby like Rachel then to not have another blessing at all. (which, by the way, I don't agree with)

Just like every child we have, or will ever have...and (for the lady at Walmart) we just might have 5 more! :o) Rachel is a blessing... a joy... a lot of work...and worth every second of it.  Anyone who doesn't see that is out of their minds.

4 girls and a pedicure

Minus the pedicures I got when I was in beauty school, I have only been out for a pedicure twice before I was pregnant with Rachel.  Back in July, Des & I went out for a girls day and got one (the week before we found out Rachel had anencephaly)  And then we went again last month on our weekend trip to Portland.  So, today Harlee & I went to get pedicures together...since neither of us can reach our toes :o)  (We're due within a week of each other and are both having little girls!)  I'm starting to feel pretty spoiled...3 pedicures in one year!


Afterwards we went to Walmart and Harlee bought Rachel a cute little outfit...  I have a bunch of clothes packed for her, but they are all newborn size since I was originally planning on going to 40 weeks or more.  However, it's not looking like she'll need clothes that big now.  I'm still hoping for chubby cheeks, but I think she needs preemie sized clothes. This is the one she got her - we saw one that said "love to twirl" on it with a little ballerina...thought it was fitting for Rachel, but they didn't have preemie.  Harlee's going to check at the Concord Walmart to see if we can find the right size for my little dancer.

Prayer Needed

Please pray for Sam... He just fell all the way down our stairs and isn't doing well.  Matt just brought him to the ER  - doesn't look like anything's broken, but I think something's going on with his head.

UPDATE:  Sam's fine... big egg on his forehead, but ok now.  God was watching out for us on that one - if you've ever seen our stairs, you know what I mean...  thanks for your prayers. 

Friday, November 19, 2010

Reality Bites

Today's appt was a flop...worst one yet...  horrible sonographer that gave me two bad pictures and had me in and out like I was on a conveyor belt. She had us there long enough to tell me my fluid is up again and Rachel only gained 2oz in 2 weeks and she was off.  I started crying the second she left the room and within minutes was full blown sobbing. I couldn't stop...through the hallways and into the doctor's room... while everyone stood around me in silence not sure what to do cause I had totally lost it.  She checked me and I'm 1cm dilated and 70% effaced, which means nothing unless my water breaks early.  Then I calmed down, got through that and they set us up an appt over at the hospital for a tour... This journey has been a heart wrenching road for me.  There have been many blessings along the way, but the pain is almost unbearable.  The woman giving the tour was great, the reality of the tour...not so much.


By this point Matt was pushing me in a wheel chair cause I couldn't hack all the walking... I was quite the sight... red puffy eyes with an obvious headache and I couldn't walk.  Someone on the elevator asked if I was in labor... I said "no, I just look like I am" and smiled. (she, of course, was bouncing a brand new baby girl in a front pack)  We saw the labor & delivery floor, the operating room, and the postpartum floor (babies and all). :o(  I think the reality started to sink in for Matt today too. Up until now, I don't think it has - but you can't stand in an operating room and talk about what a baby dying looks like and not have it affect you.  Two weeks from today we'll meet our baby girl!  Praying 3 days later, she'll come home with us...even if for only a few minutes. 

Thursday, November 18, 2010

I love my kids

Des & Isaiah just came to see me and I said "thanks for coming to visit me" and Isaiah said "we can help you" and Des said "we didn't want you to be loney" and I said "yeah, I was getting lonely" and Isaiah said "awl you haf to do is sha-wa yuw feewins" (that's Isaiah's version of: all you have to do is share your feelings)  I asked him where he heard that and he said "on netfwix" (on Netflix)   I love my kids.

getting tired

I've been in serious pain all day - mostly physically, but that brought on emotional stuff.  I wasn't able to get off my left side for over 4 hours without intense pain - and although I just managed to make a bathroom trip, I'm back in bed.  My precious Desirae just brought me dinner and set me up with our "breakfast in bed" tray that has never been used...and it's actually working out ok even with my belly.  I don't know what's going on, but my body is just about done being able to handle this.  I don't see how I'll make it 2 more weeks.  I have an appt tomorrow - please pray for wisdom for the doctors and for me as I work my way through the rest of this journey.  My back has turned out to be the least of my worries...I'm short of breath, I've been cramping and am getting bad pains in my stomach, my leg continually goes numb and I just had trouble going pee...not sure if this is all just cause there is no room left, but it's scary...even if some of it is considered "normal", It's not a normal I'm feeling very secure with.  Sometimes I wonder what I'm doing.  It feels insane to me... but I'd do it for any one of my kids and I'd do it for Rachel all over again.   Jill's coming over tonight to sit with me... tired of being alone in my bedroom.

Wednesday, November 17, 2010

Breathless

Can someone tell me how I am supposed to do this??  Not really please, you know how I feel about "input"  But seriously, I feel like my head is going to explode...if my heart doesn't first.  I walked into an office today and the first thing I see is a HUGE country sign that says "life is not measured by the breaths you take, but by the moments that take your breath away" - I know that is on my blog, I know I have it hanging on my wall and sitting on my window sill - and you know what?  I think it's a crock.  How many moments take your breath away if you only take a couple breaths??  All of them?  Does that even make sense??   Are we talking about the actual number of moments that leave you breathless, or are we talking about a ratio of number of breaths to moments of breathlessness?  I mean really, should that make me feel better...  Oh, I might only watch my baby take a few breaths, but don't worry, it will take my breath away?  I bet it will, in more ways than one. 

Samuel has been fighting a cough for weeks and last night he didn't sleep much...  He was screaming in pain.  He is my baby who's sick a lot and it usually doesn't phase him, so I knew he wasn't doing well.  He seemed to feel better sitting up. (that would turn out to be because he has a double ear infection)   That works out well in my bedroom where Matt has strategically made me a bed of couch cushions and pillows in our bed so that I don't have to sleep on the couch anymore.  So, I went in there and rocked him sitting up until he fell asleep and then gently laid back so I wouldn't wake him. 

It's been a long time since I've had the pleasure of losing sleep with my baby and then rocking him and trying to get some sleep myself without waking him up...  all I could think was how we do that with our newborns - which led me to thinking about the newborn that I will never get to lose sleep with.  I won't get the pleasure of being up when I should be sleeping trying to rock her to sleep and praying that when I lay back, she'll stay asleep too.

I could feel Sam's breath on my neck and for a moment could almost imagine holding Rachel and feeling her breath...  Only difference was that Sam was snoring like a champ and new babies don't usually do that. :o)  My belly is so big that it was slightly painful to have Samuel laying on me, but I didn't care.  Rachel was kicking like crazy (as usual!) and I no longer had any notion of sleeping.  Between Sam cuddling with me and Rachel kicking me, I was enjoying the moment too much to care if I slept. (or if my right leg was completely numb - again!)  After a while, it got hard to breath though...  I couldn't tell if that was caused by the 27 pounds of Samuel on my belly - or the 4 pounds of Rachel on my heart.  I had to roll over and put Samuel next to me....  and cry.

Is that considered one of those "moments" that took my breath away??   Is this the new measurement for life?  I'm just not feeling quite the same about that statement.  It sounds great... but I'm a mom.  And every breath my daughter takes is going to be a blessing to my heart.  And I may even count them.  But I doubt I'll be satisfied with the number, even if every single breath she takes, takes my breath away, it will not be enough for me.  Even if she lives longer than expected.  Eventually, I will have to watch her take her last breath.  I am positive that will take my breath away.  I'm not so sure that that will rank higher than the number of breaths she took.

Tuesday, November 16, 2010

Changes

On November 16, 2002, I was being given my first baby shower... 

Today,  me & that baby, who is now almost 8 years old,  were driving to music lessons and she started telling me about a conversation she had with some other kids on the way to dance class last week.  She said that one of the girls asked her if I was having a boy or a girl... "girl" she answered.  When will she be born? they asked her... "around Christmas" she said. 

And then she said to me "that's when the part about her missing her head came up"  I asked how it came up and she said she told them that she was missing part of her head and part of her brain too.  Then she said  "and they all said, awe, that's so sad" 

I started to cry... not just because it is really sad.  But because my little girl has to tell people that her baby sister is missing part of her head and brain.  This is hard enough for an adult to grasp...but my little girl??

She went on to say "I think Rachel is going to be really cute, even if she does look a little different"

8 years...  It seems like such a long time ago.  I had no idea where life would bring me. 

I have been at a loss for words lately.  I seem to be able to start a thought, but not finish it.  Physically things have been more and more difficult....and emotionally, well, difficult would be an understatement.  OK, it might be an understatement for my physical state, too.  My dreams are even hard to endure and even with Benedryl, I'm waking more often throughout the night - and crying more often too. 

This pregnancy has gone by faster than any of my others, and yet it feels like it's been forever.  My days drag, yet are over before I know it.  I have been planning things for months and it seems there's still so much more to do...  I am waiting for something I don't want to happen.  I hate every second of this, but wouldn't trade it if I could.  I have lots of help, yet have to do this alone.  

I am a talker that doesn't want to talk...  a writer that doesn't want to write...  a people person that wants to be alone...  an expectant mother that doesn't want to give birth...  because giving birth means letting go this time.  And the one thing that hasn't changed is that I don't want to let go.

Saturday, November 13, 2010

My last 24 hours: Tacos, Fear & A Birthday Party

Last night Des & I went out to grab dinner and go to Target to get Isaiah a birthday present. We sat in the van eating Taco's and Des said "it's kind of sad that Rachel will never get to eat yummy tacos." I said "yeah" and thought for a second... No, she'll never get to eat yummy tacos. She will never get to go out with the girls and eat in the van. But as I thought about this, the verse that came to mind was Taste and see that the Lord is good (Psalm 34:8) We spent a while talking about how in heaven we won't hunger... how even in this life, truly "tasting" God is better than any food could ever be. But in heaven, Rachel will taste Him to the fullest. God's Word says that He has prepared a banquet for us - and I couldn't help but wonder if I have missed the point of this... As we talked, I told her that I always think of the banquet as food - because I love food - but I wonder if the "banquet" is really talking about Him - All Him - to taste Him to the fullest. Something that no matter how well we know Him, will never happen until we meet Him face to face. Something that Rachel will be experiencing for eternity... while we're eating tacos. Hmmm... who's really missing out?

We went to Target and while we were walking around, my legs went completely numb.  I couldn't feel myself touching my right leg.  Of course, this is the one time I forgot my cell phone!  I used the phone at customer service and called Matt to have him call Maine Medical.  I cried the whole way home.  The truth is, I am scared to death to go into labor early.  If my water broke early, that would be by far the scariest thing that's ever happened to me.  I wasn't even sure if I should be driving...you kind of need your legs for that.  I came home and laid down, and it got better - but I just have a hard time believing that my body is going to hold out 3 more weeks.  And all that aside, the closer it gets to the big day, the more sad I get.  I wish I was going to the hospital to have a healthy baby girl who would come home with us and make us smile daily... and then there's a part of me that wouldn't change it for anything because her story has become such a huge part of who I am and showing me so much of Who God Is.  I know I will be forever changed, for the better, because of Rachel.  I just wish it didn't have to hurt so much.

Isaiah's birthday party was today... we did it a couple weeks early in case I don't make it until the 3rd.  Wanted to make sure he got his party!  We had a WARM day in November - the kids got to play outside and he had a blast.  God is good.  Oh, and my sister saved the day again... it was 8:30 this morning... And because of the leg issue last night, I had no food for the party, no cake, no present, my house was trashed and I was still laying in bed in pain - My sister showed up at 9:30 with the cake, ice cream, and decorations and cleaned my entire house and set everything up - by the time 11:00 rolled around, everything was all set.  I didn't have to do a thing!  And when someone said something about me eventually paying her back, she said "the payback has already happened" - Considering how much she has taken care of me lately, I don't think so, but I'll take that as a huge compliment. :o)

The silver lining in all of these "scares" is that I have realized things that I need to get ready for the hospital that I had overlooked.  I have been so busy planning her funeral, dealing with organ donation and picking out a cemetery, that I hadn't done the stuff necessary for the hospital.  So, I have been working non-stop the last couple of days to pull every detail together so that when the day comes, we'll be ready.  I've been getting bags packed, lists made, and making sure everyone is aware of what we need from them.  We are so blessed to have a support system that have walked with us through the little things that can walk with us through the big things too - people we've always been able to count on.  It brings so much comfort to know they're there.

I just realized how all over the place my thoughts are...  I guess it's part of the dance of grief and joy.  Trying to live life, enjoying my family and rejoicing in what we have here... while getting ready to bury my baby.  It's a hard line to walk.  One that's always on my mind...ever reminding me that I can't escape this.  No matter what I do, Rachel is on my heart.  I might be talking about or doing something else, but not one thought or action isn't followed immediately by a thought of her.  I don't expect that to change any time soon.  I wouldn't want it to.

Friday, November 12, 2010

My Pink Impression

I bought a bunch of pink tulip bulbs weeks ago that I wanted to plant in Rachel's memory...however, I'm in no condition for gardening (which I find rather frustrating) and I haven't been able to talk anyone into helping me - except my awesome husband, who came home early from job#1 to dig a new flower bed for me and move my other plants around to places they'd be happier - all before going to job #2 for the night.  I might be the most blessed woman alive.  He always thought I was making it up when I said my "love language" was when he helped me in the yard, but I'm tellin' you, I felt loved. 

So, today Isaiah & I went out and planted 75 tulips in the yard in honor of Rachel.  I know come the spring, I will be glad they're there.  I thought I had bought 85 (we'll blame that on pregnancy) so I have a few more holes I need to fill.  I also plan to plant a few at her grave so she'll have some there too.  They're called "pink impressions" - which I found cool since I love my little gift that says "sometimes the smallest gifts leave the biggest impression". 

 As I planted them, I told Rachel what I was doing... I thought she should know where I get my determination - even though I'm gigantic, exhausted and in pain...  it's all for her. 

I wish I could be planting something that she'll someday enjoy with me and the kids... instead of as a memorial.  I guess this is making the most out of a tough situation at it's best.  After I told her about the flowers I told her "every year when they come up, I'm sure I'll smile...and cry too."

Thursday, November 11, 2010

My long-term plan

I made it through the night...and actually slept pretty well.  I just got up, but so far no cramping.  I'm going to need to take it easy.  I think between the Maine appt and the stuff I did at home, I pushed myself too much yesterday.  I guess I'm going to take that medication because I really don't want this to keep happening... I think the benefits outweigh the risks right now since it's also something they use to stop early labor.  So it will help with the fluid and keep early labor from happening.  But there are risks to Rachel that, although the Dr. isn't worried about, I am.  He's not worried because he said it would only matter to a baby "long term and we're not worried about long term with her" - His idea of long term might be different than mine.  I want to take her home from the hospital with me and that would be my idea of long term.  I don't want her carried out by someone else in a box.  His idea of long term is a "normal" life time.  Will taking this medication affect my long-term plan??  There's no way to know.  

The things I'm worried about are that it makes her pee less which is what slows the fluid build-up, but that must affect her kidneys and it affects her ductus arteriosus in her heart which will affect blood circulation and makes her lungs work harder than they should.  Right now her heart, kidneys and lungs are strong... I don't want to mess with them.  I did read though that if taken for less than 7 days, it doesn't usually show any side effects to the baby.  Since I've been off of it for a couple of weeks and only took it for a week last time, I think I'm safe to take it for 7 days again - and hopefully that will buy me enough time to make it through the last 2 weeks until her birthday...  I hate this.  I hate that my long-term plan for my baby is 3 weeks and 4 days - and that is with taking 3 weeks off of my original "plan".

Wednesday, November 10, 2010

Urgent Prayer Request

Well, I just got peace about taking that medication.  I am having constant contractions and am nervous that the sudden increase in fluid is causing early labor. They haven't let up for almost 2 hours.  I talked to the Dr.  She said take the meds and see if it helps.  It's not working yet.  Please Pray.

x + y = Pain.

My appointment today was a bummer.  My fluid is back up (not as high as it was, but getting there).  I am measuring 4 weeks bigger than I was 5 days ago (39 weeks when I'm really 33 and was 35 on Friday) and the sonographer didn't get a picture worth keeping, never mind worth posting.  They are also concerned because my weight keeps going down... I've NEVER heard that one before!  But the confusing part is that I've gotten so much bigger, yet keep losing weight.  She said to try to eat more protein.  I thought I was already trying to do that.  Please keep praying about my fluid... and especially that I won't break my water early.  3 weeks to go...  I want to make to my scheduled day.  It would be nice if just one thing could go as planned.  And please don't tell me that it will be God's plan if that happens.  I already know.  I've been holding off on using the antibiotic they gave me on Friday, but I'm still sick so I'm gonna take it.  She was concerned that I would still be fighting this when I have surgery and that wouldn't be good. They also recommended that I start taking the meds that help with the fluid again, but I just don't have peace about that right now.  So, I guess it makes sense that I had to sleep sitting up on the couch again last night.  extra fluid = pain.  This whole situation = pain.

Tuesday, November 9, 2010

Would you eat Poop Cake?

After my "Call me Crazy and love me" post, I was very blessed by the encouragement I got...thank you to all who saw through my hurt and to my heart.  Unfortunately, I still had to deal with people needing to say what they need to say and not taking my feelings into consideration.  I have copied and pasted a comment I got last night so that you can get an idea of what I mean. I figure since this person obviously kept herself completely anonymous, and knew there was a chance that I could post it, it is okay to do.  I do, however, need to say a few things...

First of all, now is not the time to be calling me out on resentments you have from 7 years ago - At which point, just for the record, I was either not a Christian yet, or a brand new one. I didn't know anything about anyone at church and don't remember anyone having an issue with their child, so perhaps the "look" you think I gave you was in your head. However, if you want to tell me what you're talking about, I can let you know for sure.  Second of all, I specifically said that I didn't need people's input... It's funny that you can say "the people who tell you what to do are the crazy ones" and think that this comment doesn't fit into that category.  And third of all, DO NOT talk about my daughter's birthday EVER again in anything but a good context.  EVER.  My daughter's birthday every year is going to be a CELEBRATION.  You might look at me funny to get back at me for my "offense", but I doubt everyone else will be.

Oh, and P.S.  I never said anything about "the look" - that was another mother who commented on my post that just LOST her baby and she was talking about a look of pity that people give you to because they feel sorry for you and how it only reminds you of the fact that your baby just died.  It's different than constant comments about how "great" this situation is because it's God's plan.  Maybe you could tell me, did your child die?  Are you saying that what you went though is the same thing?  You obviously just took your opportunity to kick me while I'm down and I hope you feel better.  You might have added some "nice" words around your jabs, but you can put a piece of poop in a cake, and while some of it may still sound sweet, you still have a poop cake...and nobody wants to eat a poop cake. 

And just for the record...I am perfectly fine with being "the woman who lost her baby"  You know why?  Because I am.  I am the woman losing her baby.  I am going to be the one who lost her baby.  And I never want anyone to forget about her because I never will.  It's not like a black spot on my forehead.  I am proud of my girl.   And 7 years from now, when I hear about someone who is losing a baby - I will take that as my opportunity to COMFORT them with the comfort I received from the Lord through this extremely heart breaking time.  I will be honored to be known as the "woman who lost her baby" because other women are going to need my love...I will not use that time in their life to tell them what they did "wrong" during my trial and how now they know why that sucks - even if I can manage to squish it between some nice stuff.  And thank you for protecting your identity so well cause now I don't have to be mad at you.  I can see your face without thinking " there's the woman who calls herself a 'sister in Christ' who really is 'that woman' who..." 

Oh, and please stay away from me.  I'm not into fake friends.

I have changed my comments again so that anonymous people can't comment.  Sorry for the inconvenience...  but the next time you have something to say to me, you'll have to tell me, and everyone else, who you are...

So, here is the comment... I really want to cry, but I guess right now being angry is more comfortable...

"You are a beautiful and amazing witness for Christ. That does not make any of what you are enduring any easier. You have every right to feel the way you do. I have never been faced with a carrying a beautiful and amazing child who would not continue to live on in this world after birth. However, several years ago now, I faced a situation with my child that was beyond most people's comprehension. I remember all too well "the look." To be honest, I got that "look" from you several times. It was when you were a single Mom, with only Desirae, before Matt and you were even back together, let alone married. I know you have to approve any messages before they are posted. I read all of your blogs. :-) If this were to post automatically, I would not write this. Stacy, you are going to have to deal with "the look" for the rest of your life. An immediate example that comes to mind is Rachel's birthday every year. On some level, to some people, you will always be that woman who lost her baby. On some level, when you see me, the association I see on your face is not a "sister in Christ." It is "that woman who..." and it is completely subconscious on your part. You scream when you need to scream. You cry when you need to cry - no matter who is around. You stay by yourself when you need to stay by yourself - because you are NOT by yourself - you are with God and your amazing daughter. God has chosen this path for you to give Him glory - and you are doing just that. You are inspiring. But you are human too. You are grieving. And in no way are you crazy. The people who tell you how to act, think or feel are the crazy ones. The ones who hug you in silence when all you can do is cry, the ones who love you despite your (justifiably) changing moods, the ones who know that the most important thing you need right now is love - those are the people who know you are not crazy and will let you do what you need to do right now. Surround yourself with them - and ignore everyone else. You have allowed God to work through you in such a powerful and inspiring way despite the utter depth of your heartbreak. If people cannot respect where you are right now, then you do what you have to do for God, you, Rachel, Matt, and the kids. That's all that matters."

I am aware that there will be people who read this and think I'm not seeing the good, only the bad. That maybe she didn't mean to be hurtful - well, I'm so glad you brought that up...  IT DOESN'T MATTER.  If you go around saying things that are hurtful and say they're ok just because you didn't mean it to be or because it is the "truth", it is still a problem and you need to learn some people skills.  I am so exhausted from having to suck it up every time someone says something inappropriate.  I am tired of being the only one required to offer grace.  I can't do it anymore.  If this comment was just about me, it would be easier to let it go.  But she brought my baby and her birthday into it.  I would have rather got a direct email that said "hey you looked at me funny 7 years ago, you..."  But when you think you can start saying things about my daughter....well, you should know by now that I am serious about my kids.

Reap & Sow

Have I told you about my mom yet??  Well, I should.  Let me give you an idea of the kind of woman I was raised by...

She raised 3 kids by herself while working to provide for us.  We didn't dare to misbehave because she would have killed us.  I used to think she abused us, (sorry, Mom) now I know she was doing us a favor. :o)  She didn't do everything perfect, but we always knew she would do anything for us - and she did.  She still does.

When I got arrested (don't worry, it was years ago, this isn't stemming from my crazy talk from yesterday) My mom was there immediately that night and walked with me every step of the way.  She helped pay for my lawyer (my Dad helped too), took me to appointments, was at EVERY court date, drove 3 hours each way to visit me every single visitation day for months while I was in rehab - and even drove out of her way an hour on each end to pick up my dog so I could see him too.  She sent me letters and talked to me for hours on the phone, patiently waiting for and hoping that I would get my act together while everyone else told her she was wasting her time.  When I went to jail, she took all my collect calls.  She called the jail to threaten them when they wouldn't give me my medications. (did I mention she's Italian? :o) )  She bought me a cell phone and left it in my car so when I left on work release I could call her.  And when I found out that I was pregnant and her first granddaughter would likely be born in jail, while others were saying I should abort, she left a message that said "I wanted to let you know that I just bought the baby her first pack of diapers"

She is the kind of woman that will listen to me complain one day about my pantry being messy and the next show up at my house with new shelving to organize and an accordion door to hide the mess and help me put them up.  If I mention that my daughter's shirts are small, she's over giving Des a bag of new clothes.  She listens, she cares and she provides... and she does that for everyone, but she is rather serious about her kids - even her completely grown kids. 

The day we found out about Rachel, it was my mom who was babysitting...surprise, surprise.  We told her, she cried and since that day, she has been available for every single need we have had.  She comes and cleans, she cooks, she has gone to the store time and time again and brought us a bunch of groceries and she watches the kids.  She listens to me for hours at a time, no matter what time it is and never judges me or tries to change me.  She always has time for me and my children.  She is at every birthday party, baby shower or celebration and she is there through every bump in the road, every crisis and every heartache.  She has her boss make the schedule around my upcoming appointments so she can help us get to them.  And she has done all this while saying goodbye to and burying her young brother.  She cries, her heart is broken, but she doesn't use my shoulder.  She's too worried about me to let herself fall apart. 

My mother is amazing.  Her love and dedication have always outweighed any downfalls that she has. 

This morning I woke up in a ton of pain.  My back was killing me, I hardly slept, I have acid reflux and I am coughing like crazy.  Before I ever got out of bed, I was in tears.  I'm worn out.  I didn't know how I would make it through my day.  I called my mom and she dropped everything and spent the day with me.  She cleaned, she watched the kids so I could do groceries, she made phone calls for me and helped me get things checked off my to-do list.  This is normal behavior for my mom... not just because I'm in the middle of a serious circumstance, but just because I'm her daughter and she is serious about her kids.  She always has been.  But she is serious about us without ever attaching any strings.  She has always been there.  She doesn't require anything in return.  She doesn't get upset if we don't do what she would like... Because she loves us unconditionally and ahead of herself.

For all the comments I have received saying what a good and dedicated mom I am to my baby girl... well, just look at my mom.  Could I seriously be raised with this type of example and be anything but dedicated?  Could I be anything else but serious about my kids?  Could I not drop everything and tend to my daughter's needs?  Is there any chance at all that I could not walk with my daughter every step of the way and put her ahead of myself, even though she can't give me anything in return?   There's no way.  I won't do everything perfectly, but I will always do everything I can.  I cry, my heart is broken, but I'm too worried about my children to let myself fall apart on them.   I'm a lot like my Mom.  I will find it an honor to take care of her some day - when she's too old to stop me. :o)

Sunday, November 7, 2010

Call me Crazy and love me

Apparently the closer Rachel's birthday gets, the more unstable I'm going to feel...  Today was a bad day.  Before I ever even walked into church, I was on the verge of tears.  I almost started crying because I dropped my Tums under the car seat.   After many failed attempts at hiding from having to talk to people, we left and fought all the way home over the kids' car seats.  That's right, car seats.  I went to Joanne Fabrics to buy the fabric I need to make Rachel's blanket and everyone who came near me said "oh, when are you due?" and I said "Christmas" with a smile, and then everyone had something to say...."oh that's going to be fun" - "I had my baby on the 24th"  - "I was due on December 16 and didn't have my son until the 29th".  I'm getting really good at my nod-and-smile routine.  Then I came home and completely fell apart in tears because my cordless phone isn't working - again.  I didn't even want to use the phone... And I ignored a bunch of calls because our land line is junk and the caller ID doesn't work.  I hardly want to talk to people I enjoy talking to, but I was definitely not going to end up being stuck in a nod-and-smile routine in my own home.  All that being said it's only fair that I give a warning:

 - If one more person says "how are you?"  I might start crying and not stop - the question is impossible to answer, unless you want me to lie and say "good".  (Wow, all this time I thought I NEVER lied, and it looks like I do lie... I tell people every day I'm "good")  The other option is for me to tell you how I'm really doing, but then most likely we'll run into warning #2, so keep reading before you decide if you want to do that...

- If one more person tries to tell me how I should feel or why I should be okay with my daughter dying - or if one more person feels the need to "encourage" me by telling me how I need to let go of my fears because whatever happens is "God's plan",  I might scream like a crazy lady... truth be told, it's usually what I'm doing on the inside anyway.  Might as well let it out, God already knows.  I figure if everyone can tell me what they think, then I should be able to do the same.  And screaming would be a nice way to say it.  It's if I start saying actual words that I might sound mean, so I'll go for just looking crazy and scream.   I don't need anyone to try to "fix" how I'm feeling.  I need people to try to have empathy.  And for the record, I don't question God's plan.  I may not like it, but I don't question it.

- If one more person says that me wanting to be away from people is unhealthy and not good for me, well, maybe I'll record the next few nod-and-smile conversations I have with people and the next time one of these "concerned" people is going through something that could be considered even remotely as painful as watching your baby die, I'll play it back and see what they think.  Rest assured, I am not being unhealthy.  I am doing exactly what God would have me do right now.  If that looks unhealthy, well, looks aren't everything, 

Right now you're probably thinking I don't need to scream to sound like a crazy lady...that's okay with me.  I actually used to have "crazy" on my license plate and I paid extra for that.  And to be honest, I'm not feeling very stable, so the title pretty much fits...call me crazy, call me hormonal, call me anti-social - just stop telling me I'm not handling this right.  I can't nod-and-smile through it anymore.  It's not encouraging.  It's not helpful.  You can't fix this. I'm not asking you to.  Don't try.

I will once again refer you to the "what family and friends can do" link that I have recommended before...I have conveniently put a link to it right on my page (top right) for you benefit and mine.  This would be a good time to read it if you haven't already.  Most of the things that are written in the "don't do" list are things I have to endure EVERY time I am around people.  Hmmm, don't know why I'd want to be alone...

When I first let everyone know about Rachel, I specifically said that I "preferred hugs over talking details, it's more helpful and less draining"   That is why I have this blog, so that I don't have to repeat myself over and over about the same stuff.  The same painful stuff.  I can't tell you how many people ask me how I'm doing, listen for a couple minutes and then throw out some pat answer that totally minimizes what I'm going through.  I know I should "want" to be reminded of those truths, but I don't.  The Holy Spirit gives me all the truth I need to get through this.  But He can't give me a hug.

So, while I was venting about all that crap, I ate a bowl of ice cream and took benedryl... I should start calming down any minute.  Still love me?

Saturday, November 6, 2010

How did the Benefit Go?

I have been meaning to write about how the benefit went for days...  It was awesome.  There were a lot of people there and we felt so loved and supported.  It was such a blessing to have people we don't even know coming to support us and show their love for Rachel.  It was also great to be celebrating Dale's birthday with the people he spent most of his life with.  He had a huge heart and it shows by the amount of people who will show up for him even after he's gone.

We raised $4300 that day, which was the exact amount we needed for Dale's funeral and burial - and the donations are still coming in.  We have recieved another $1,130.00 since the benefit. $385 of which is from complete strangers who read our story in the Fosters and other Newspapers and wanted to tell us they love Rachel.  And most of the rest is from people either in my family, or some of their friends/co-workers who wanted to help us out. We have also recieved letters from a few people, including one guy in jail that wrote us a poem, whose hearts were moved by how God is carrying us and although they had nothing to give, wanted us to know they were thinking of us.  This is more than we have gotten from some people closest to us.  We were so humbled by this.  It's a good feeling to know that people care, not because they have to or because they will get something in return, but just because. 

After we add that amount to the money we get back from the Milton Mills cemetery, it will cover the headstone and most likely some of the other little expenses.  Edgerly's Funeral Home has graciously offered to do Rachel's funeral at no charge.  We are not far off from the total we will need.  I honestly don't know how much it will all be.  There will be other burial charges and some expenses for the funeral that are separate from Edgerly's services. I've never done this before, but I know that our biggest expenses are covered...  And I know that most of it has come from people who don't even know us. God ALWAYS provides!!

Here are some pictures from the benefit...  Thank you to all who came out and loved us!!  We are so blessed by your support.



my Grandpa

My "Uncle Kathy" and my Papa
yes, there's a story to her name, no she's not really an Uncle, she's my Aunt.

Samuel with Nana (my mom, Rachel), My sister Meagan and Papa
and of course, Baby Rachel!


My awesome husband hanging with the kids...
He had so much fun, he almost lost his voice - my party animal. :o)


My Uncle David in the blue shirt -
Isaiah told him when we saw him the next day that he was too loud
He brought the bands - and they were LOUD!
 If anyone took pictures that I might want to have for a keepsake, I'd love it if you wanted to send them to me!

Friday, November 5, 2010

sucking ruins cards...

Isaiah just said "I wanna make a cawd (card) for Wachel (Rachel)"  So I gave him a piece of paper, he drew on it, and I wrote "To Rachel.  Love, Isaiah".  He took it to show Daddy and he said "but what if she wuins (ruins) it?"  And Des said "Baby's usually do that...they suck on things"  I smiled and thought...yeah, she does suck now, so that could pose a problem :o)

8 out of 8 ain't bad

Week 32 is almost over...  Had my appointment at Maine Med today.  Feels like I go all the time.  Today was an awesome appt.  Well, all except for the fact that we didn't get good pictures of Rachel.  I have come to realize that there is definitely a technique to getting a good shot.  The sonographer we had today had an extremely hard time getting a clear picture at all.  I wasn't going to post one because I couldn't pick one I really liked, so I asked Des (she always helps me when I'm indecisive like this)  She looked and said "there aren't any good ones" and then picked the same one I had picked, so that's what we're going with. :o)  She is just like me.  That can be a scary thing! 


So...  Thank you to everyone who has been praying for my fluid, and specifically that Rachel would swallow like she should.  Today she had a full belly!!  This means she is swallowing!  I measured a week smaller than I did two weeks ago, which actually means I've made a lot more than 1 week progress... (I measured 36 at my 30 week and only 35 at my 32 week.)  That means I'm only measuring 3 weeks big instead of 6!  Oh, and that is with her gaining over a pound in the past 2 weeks.  She measured 3lbs. 9oz. today!   I can't tell you how good this was to hear.  We have gone to so many appointments that are filled with information that stinks and we have to accept.  It was good for my heart to hear something positive.  I got all emotional hearing good news...  She's swallowing.  Ahhh, music to my ears.  Something I've always taken for granted.

How many times do we usually think  "wow, today my baby's belly is full because she's swallowing" while we're pregnant?  It has never occurred to me in any of my previous pregnancies what a gift swallowing was.  I don't think I ever even considered it.  I looked at the ultrasound report today...

kidneys: normal
bladder: normal
movement: normal
stomach: normal. 
lungs: normal
heart: normal
cord: normal
placenta: normal...

"8 out of 8" they called it.

I have never appreciated these things like I should have.  I've always worried about stupid stuff.  Stuff that doesn't really make a difference... boy or girl, room decorations, how far apart the kids will be and if the due date is a "good" one, money, clothes, blah, blah, blah... 

Because then the report says...

Head: cranial vault abnormal
Brain: anencephaly

Who cares if it's a boy or girl, has a cute room, no room at all, or shares it with 5 siblings...who cares if the kids are too close or too far apart or if your due exactly when you never wanted to be... who cares how much diapers cost or what kind of clothes you buy your baby if she doesn't have "8 out of 8"??  I never even knew there was such a thing and today... it's all that matters.  Not just because she won't be here long enough to have her own room or be a little sister to Des and not another brother... because when you realize how fragile life is, you realize what's important.  Rachel has taught me to appreciate the 8 out of 8 - hoping that next time, we'll get 10 out of 10, but knowing we have NO control over that.  I am positive that I will never enter another ultrasound will a sense of entitlement, as if I will automatically get a healthy baby because I think this kind of stuff happens to other people.  And believe me, I never thought I did that.  I always thought I appreciated my healthy babies, that I understood the gift I was being given.  I see things more clearly now.  I appreciated them for sure, but not with a full understanding of how complex and detailed God created them and how powerless I am over it all.  When I had Desirae, I remember thinking how she was strong and healthy because I did everything "right" while I was pregnant with her.  No, she had 10 out of 10 because God gave her 10 out of 10.  It feels good to say we had something to do with it, but we don't.  If that was the case, I would have to feel really bad about Rachel's condition because if we take the credit for the good, we need to take it for the bad too.  Desirae doesn't have an incredibly advanced brain because of me any more than Rachel is missing hers because of me... It's all up to God.

Every time we get to peak at our precious baby, we are humbled by the wonder of God in her.  She dances around my womb with "8 out of 8", her heart is beating, she is swallowing, her belly is full...  At our first ultrasound 3 months ago, I couldn't stop focusing on what she was missing.  Now I don't see that at all.  I see all the things she does have... each one a miracle in and of itself - and we know for Rachel "8 out of 8" is perfect because God doesn't make mistakes.

I know that to be true, but I'm still trying to explain it to my heart.