Wednesday, November 26, 2014

He Will Fight The Fight

I've been trying to figure out how I can possibly write all that is going on in my mind and heart right now without writing a short book... and with being able to articulate exactly what it is.... This should be like 3-4 different posts, but I can never find time to sit down when my mind is actually working.  So here I go....

First, Matt & I went away this past weekend to a Family Builders Ministries "Stronger Together" Getaway... it's for married couples who deal with chronic illness or a disability.  I'll be honest, I wanted to cancel.  The weeks leading up to our trip were horrible.  My pain, hospital and doctor visits, our stress levels, and our marriage were all out of wack.  I was super nervous about leaving the kids for the weekend, it's a lot for someone who is used to it, but nobody other than me has ever taken care of all of them for that long...our nights are hard, our days are even harder...  and between the anxiety I felt over that mixed with feeling awkward about going (and claiming the title 'chronically ill') and where Matt & I were at, I just wanted to cancel.

I worked like crazy to get the house and meals prepped for the kids and it almost felt like more work than it was worth...  but see, we were granted a scholarship and only had to pay the deposit, which my friend Donna paid for - along with her giving us gift cards for gas and dinner while we were away - so basically the weekend was pretty well covered.... and it was pretty obvious God wanted us there.

Well, by Friday night, we were already in a better place and by Sunday, I felt revived... the weekend went by way too fast and it was amazing. (I HIGHLY recommend it!)  Just the right amount of great teaching, fellowship, worship and (gluten free for me!!) food... and they scheduled from 2:30 on Saturday to be free time for us to just be together - we NEVER get that kind of time together... it was so needed.  I honestly wanted to do absolutely nothing.  I just wanted to relax...We sat around and ate chips and watched Sleepless in Seattle - LOL.  Rested together and laughed. And got some open communication going about my chronic pain and how that affects our family. It was amazing.

They had musical artists Jonas & Becky there and they performed as well as led us in worship on Sunday morning.  Even they had a story to share about their journey through Becky's cancer... and we were blessed to be able to interact with them one on one and it was so encouraging to hear all that God has done in their lives.  Becky makes jewelry she was selling and I bought myself a bracelet. It was selling for less because it was 'slightly imperfect', but I happen to like imperfect things, so it was perfect for me.  The 'perfect' part is that what it says on it is exactly what God has been speaking to me for months now - I wrote similar words on a card I put in my Bible back in my woman's study in September... It's not my battle, but the Lords..... And a similar theme ran thru many of the songs at the getaway about the Victory being the Lords....

Fast forward to my appointment with the Neck Specialist yesterday... I told you I'm getting used to contradictory information... and that I was expecting it to a certain degree... but I had no idea how much so.  When I got there, they took my blood pressure and it was 150/100.  I started crying as soon as she told me.  I have a very hard time not worrying about my aneurysm when my blood pressure gets high and at this point, it's happening regularly, even on meds.  Unfortunately, my pain levels make it higher so I'm not sure what it would be if I wasn't in constant pain, but I get major anxiety when it goes above 95 on the bottom.  We all know high blood pressure and aneurysms don't mix.

So, when the doctor walked in, I was already puffy eyed and as soon as he started asking me what was going on and I started telling him the slew of diagnoses I have been given and all of my symptoms still undiagnosed, I cried more.  I calmed down and as he started talking, I couldn't believe my ears...

He said I don't have one bulging disc in my neck, I have THREE.  But he doesn't think surgery is needed...  okay, so there goes my big plan.  I was told that all of my nerve issues in my arms, legs, feet, and hands all were stemming from my disc (singular!) issue and my hope was this dude was going to fix that and make me better.  So when he said he didn't think my symptoms were from my neck, the tears started again.  Then, he went on to say that my Syrinx isn't pushing enough on my spinal column to cause the numbness in my back or the charlie horse in my stomach - both of which the neurologist said were being caused by my syrinx.  okay, so now I'm back to not knowing why those things are happening - which happen to be two of my very first concerns MONTHS ago.

After he contradicted every. single. thing I thought I had figured out, I finally said "What do you suppose I do now?  I was under the impression that all of these symptoms are from these things and waited a long time to get into see you and now you're saying they aren't and honestly, I'm getting really tired of hearing a different answer to every question from every specialist I see, so what the hell do I do with this?!"

He asked why my Rheumatologist hasn't put me on meds for my joint pain yet and I said he has tried, but I'm scared of the side effects of Humira and don't want to take it.  He admitted it's a fairly new drug, but assured me that the side effects of Prednisone (which usually works really well for me but is mostly used as a short term thing) are worse... I'm obviously not an expert, but I'm just guessing that when Prednisone was new, they had no idea that the long term effects would be what they now know they are.  It has to be around long term to know that and Humira has not been around long enough for that.   And anyway, I don't have to do anything I'm not comfortable with.

And this is when he gave me a few more diagnoses... he asked if I had birthed all 5 of my kids and I said "Actually 6 of them, but one died."  He ignored that statement completely and said I had too many kids and my body is out of shape because of them.  He said "You have horrible posture, I mean, look at you... AND,,,you are depressed, I could tell the second I saw you that you're depressed."

God's great mercy and grace was upon that man because if not, I assure I would not have sat through that.  I think I was so dumb founded and so discouraged that I had not a word come to mind.  Not one.  I just pulled my shoulders back because he was clearly disgusted with my posture and cried.  Then he said that the only thing other than PT that he would recommend would be a Physiatrist because they can offer counseling too.  He said "I'm a surgeon and if people don't need surgery then I don't follow them, but the people upstairs (physiatrist) will."

I walked to my truck and as soon as I shut the door, I sobbed.  hard.  I couldn't even drive I was crying so hard.  And you know what?  that was exactly what I needed.  I needed that jerk to be mean and be so out of line with "diagnosing" me for me to hear God loud and clear.

I remembered my bracelet I bought at the getaway


And I swear, I think I said "I can't do this anymore" about 100 times to myself driving home and another 100 when I told my mom and Matt what had happened.  And I can't.  I can't chase answers anymore.  Nobody wants to help me, nobody wants to dig deeper and be proactive.  And if they don't want to, I can't make them and all I'm going to do is drive myself crazy trying to get people to listen to me.  So I'm done.  I need to refocus, get back to basics and leave it at the foot of the cross.  I don't want to talk circles around it, I don't even want to talk about it at all.  It's not doing anything but raising my blood pressure and I don't have room for that.   God has this and I'm crazy if I think I can handle it better than he can.  He never promised me I wouldn't have physical pain in life and I'm a tough girl, I can handle pain.  It's the mental aspect of not knowing what is happening that I can't handle, but this poop show of an appointment just brought me to a new low... and new place of surrender... a place low enough that the only way I can get back up is to get on my knees first and that's exactly where I need to be.  I trust God and so that is what I'm going to do.  I'm not trusting the doctors, I'm not trusting myself.  I'm trusting God.  He'll guide me and protect me and if he chooses to take me home, I know He is enough for my kids and Matt too.

He will fight the fight.  The victory is HIS.  I need only be still.

And when I truly rest in that place, the power of the fear doesn't exist.  Yes, fear comes, but the Truth can cast it out better than any doctor listening or any accurate diagnosis.  Either way, I have pain so at this point, I'm choosing sanity.  And for me, that means letting go of my need to know and my desire for control... If I did it with Rachel, I can do it with this.

Pray for me that I don't pick it back up.  Pray that this new found energy I have will continue - to work hard for my health the way I always have (the 'specialist' had me wrong there!  I've had a lot of babies, but I have ALWAYS exercised and cared about my diet.  The kids haven't made me weak, all these freaking doctor visits and diagnoses have!!)  Pray that I will rest in God's hands and not let all of this steal my joy and waste my precious and irreplaceable time with my family.

I think I'm going to work on getting those massages, doing some PT, and remembering who my Great Physician is.  My God is always right on time and I'm positive that he will take care of me.

2 Chronicles 20:15
Thus saith the LORD unto you, Be not afraid nor dismayed by reason of this great multitude; for the battle isnot yours, but God's.

I got a call from my friend Sarah after I got home from that apt and I was still crying when she called.  I had forgotten about our plans for a girls night with my local baby loss mama friends.  I wanted to back out of that too because I was puffy eyed, wearing sweats and have cold sores on my face.  Feeling really pretty and couldn't stop crying.  But we don't get together all that often and God prompted me to say I would go  - so she came and picked me up.  They surprised me with an early celebration for Rachel's birthday with cards and gifts and gave me gifts for the baby shower.  I had a much needed reprieve from my horrible day and came home smiling.  God has continued to love on me through others today and I just got this beautiful handmade daisy blanket in the mail that my friend Jaimi made me (keeping warm with it right now on the first day of snow!).  6 days to go until her birthday and I'm so thankful that others are remembering her for/with me.  My heart needs it right now.

And last, but certainly not least... Today was Isaiah's 8th birthday - that boy gives *the* best hugs.  He's turning into a pretty amazing young man.  I'm so thankful for another day.

Happy Thanksgiving!


Sunday, November 23, 2014

Baby Shower Reminder

10 days left until Rachel's birthday and less than 2 weeks until the benefit baby shower we're doing to celebrate her life by blessing others.  As you probably know, we are doing a baby shower for a young local mom who is expecting a baby boy in March.

A few things have been purchased from the registries and we received one donation (THANK YOU!!!), but there is still so much more she needs!

Please consider helping us for this special day by purchasing something off of one of her registries or sending a gift card or donation that we can use to help her get ready for her little boy's arrival.  Even a bunch of small gift cards can add up to help us purchase a bigger item, or buy another pack of diapers!

I have no idea how long shipping will take on purchases, so in order to help reduce my fear-of-failure stress level, if you could order soon I would be ever so grateful.

Her name is Lindsey Seale from NH and she is registered at Walmart  and Amazon.com

Thanks, Love & Hope,
Stacy & Rachel


Friday, November 21, 2014

Diagnosis Overload

I had decided that I was all done talking about my health.  I am finding it to be not much more than a source of frustration and while I know people are only trying to help, the constant ideas on what I should try are actually really irritating.  Just being honest...

I'm at a doctor *constantly*.  Like at least one big appointment every week and often more than one. Between all the specialists and my PCP and then the hospital and every test you can come up with and Google and tons of prayer to top it off, believe me, if there was a simple answer, I would know it.

All that to say that I really need prayer right now.  Just prayer.  And hugs.

I got a text today from a friend at church just saying simply that she didn't have the answers, but that she is carrying me to the foot of the cross.... that's what I need.  I need people to pray for me and to ask how I'm doing and allow me to talk about things without judgment, and be uncensored as I work through some of this stuff.

I went to the neurologist today and left with yet another diagnosis.  It's getting to the point that I honestly have a hard time remembering them all when the ER or another Dr. asks me "Do you have any major medical issues?"

Today I was diagnosed with Occipital Neuralgia.  She gave me an anti inflammatory cream to use on the back of my head 3 times a day and different muscle relaxers and said my headaches are most likely not migraines. (which I did try to tell the ER at both of my recent visits, but they don't listen - surprise!!) Although they present like migraines in a lot of ways, they are different.  I have been saying all along I thought there was more to it - and honestly, I don't believe they have it all figured out yet, but we'll find that out in due time, I'm sure.  One of my concerns I mentioned today she told me that, although it does happen, it would be really "unlikely for me because that would be really rare in someone my age."  I love this lady, but I wanted to say "Um... in case you haven't noticed, 'really rare' things happen to me ALL the time!"  But I guess we'll deal with that later....

 She said that all my muscles in my shoulders and neck are 'roped' and that I need to get massages - which sound great to me, but they are not covered on insurance - and if the massages, the cream and the muscle relaxers don't help my pain in a month, she wants to do nerve block injections in my head.  Writing that makes me want to puke.  Seriously.  Needles going into the nerves in my head???  Tell me this is a bad dream...

And the real problem... even if she 'fixes' that part of me... there are still a dozen more things that need 'fixing' that only God can fix and He isn't...and I'm seriously discouraged.

I don't do much looking online, but with each new diagnosis, I take time to look it up and see if it sounds right.  Tonight after about 5 minutes of reading, I just fell into tears.  Not because this is a huge and horrible thing but because I think she's right and I can only handle so much.  It's been one. thing. after. another.  I just wish all these 'specialists' could get together around a table and come to a conclusion on what to do with me because I'm tired of being passed around.  Next week: the Neck Specialist.  BLAH!!  Five bucks says he tells me something that contradicts something another doctor said.  It's so frustrating.

And more than all my physical crap, I really need prayer for my mind.  I have a serious spiritual battle going on and I'm losing.  I know that He who is in me is stronger than all of this...  and yet I still find myself fighting thoughts from the enemy throughout each day.  Fear of what the future holds creeps in constantly and I'm struggling to stay in the moment - to remember that He has a purpose in ALL things for my good.  God keeps putting the word "Joy" on my heart and I get small glimpses of it, but can't grasp it for long.  It's been a hard month.

And as I write that, I remember that I'm in the countdown to Rachel's 4th birthday.  13 days from now she will have been gone for 4 years.  I can't believe it.  I should know by now that these weeks always bring sadness and grief.  And with everything going on, I barely have time to stop and feel.  And when I do, I cry.

I'm just overloaded.  Completely overloaded.


Wednesday, November 19, 2014

Rightfully So

I had a whole lot to do today and not a lot of energy to back it up.  2 appointments, gymnastics for Des and a visit with my Papa all by 1:00 were on my list.

I flew out of here with the gang just before 9:00 for a 9:00 appointment and yes, I was late.  I knew I was having a hard week, but I didn't know I was on the verge of tears until people started talking to me.  And then it seemed like it was pretty much anytime someone talked to me.

I was in the waiting room and my friend who works there walked by and asked how I was doing... said she read on Facebook I had been to the hospital for a migraine.  (I woke up with it Monday and tried all day to get rid of it and couldn't.  But I also had a swooshing noise in my ear that started the night before and was concerning me.  So I went to the ER and they got my pain under control, gave me some anti-inflammatory meds, did a CT scan to make sure my aneurysm wasn't bleeding and told me to follow up with my neurologist on the noise.... which I'm doing tomorrow.)  I started to explain all that to her and when I said "I'm just getting really discouraged with my health" I started to cry....  

They called me in and the woman asked me how I was doing.... I have mentioned I hate that question right?  It's like I'm either going to lie and say 'good' or tell the truth and we're both going to wish I would have lied.  So I just shook my head in an attempt at shooing the question away and so I wouldn't cry.  She shook her head along with me as if to say "what does this mean?"  and then asked "Do you have someone to talk to?"  "Um yeah... I guess so... but not really... I don't know... " I said.  "I just have a lot going on physically and it's been a hard week."  And as I said that, the tears started to flow again...

Suddenly this little baby girl, maybe 9 or 10 months old, crawled over and pulled herself up on my chair.  I smiled and said hi to her as I wiped my tears.  Her mom gave me permission to pick her up and I spent the rest of my appointment holding this sweet little girl, pulling papers out of her hand... and her mouth... and showing her a book.  The lady asked me a question and I ignored her...

"Oh, I'm sorry... what did you say?  I'm a little pre-occupied..."  I said.

"Rightfully so" she said with a smile.

Most of the people at WIC know who I am and know Rachel.  They knew me well before her because when I first started going there I was in jail and pregnant with Desirae.  I CRIED thru every appointment.  And I mean *sobbed*.  I was 23 then and being pregnant in jail was a nightmare.  It was actually one of the nurses at Avis Goodwin/WIC who wrote a letter of concern to the Judge (because I lost 6 pounds in one week and it was a smoking facility at that point and they were concerned for the baby's health)  that got me out of jail 8 months early on house arrest. I would have had Des in jail if it wasn't for her.  But you can imagine a story like that isn't one they would forget easily.
  
When I went thru everything with Rachel, these women loved on me and made sure I knew they were there for me.  Hugs and offers for help were constant.  I saw one of them at the gas station the week before Rachel's Race this summer and my face was showing my stress level and she yelled to me as I left "One more week to go!  You're almost there!"  It's always a blessing when I feel understood... but when I feel understood without saying a word, that is a huge gift.  I can't put words to it really.  

That's how I felt when I was completely lost in my time with a baby girl and I looked up at the women helping me to find a smile that seemed to understand.  I didn't have to explain and she didn't rush me for the next client.... she just let me soak up my time with a little girl.  And it did my heart good.  I wanted to tell the mom about Rachel... about why it meant so much to me to hold her daughter... but I didn't, I just asked her name. 

Eventually she started crying and I handed her back... but I felt so much better.  Children are indeed a blessing from the Lord.  That child stopped my tears in a matter of seconds and she wasn't even mine!  It certainly felt like the timing of her coming over to me was straight from God.  

After I dropped Des at the gym, I brought the 4 boys with me to visit Papa, which was a very bad idea.  Asa ran off on me and almost pulled over someone's oxygen tank, which would have been a disaster.  After about 30 minutes trying to talk to my Papa and not really being able to, I decided that it's probably not very good for him to have that craziness there and packed us up.  I'll have to make those trips when I can find a sitter or Matt's home.   I was so disappointed.

But as I was walking out, one of the employees commented "All boys!?" and Sam said "No, we have one girl too."  She looked at me for confirmation and I said "Actually, we have 2 girls, one is at gymnastics and one is in heaven." and she immediately said "Oh, are you...."  and she paused trying to think... "You're Meagan's sister?"  I told her I am and she said "You built a playground for your daughter, right?"  

We don't live in a small town.  It's not huge, but I wouldn't consider it a small town.  My high school class had close to 400 people and I didn't even know half of them.  So the fact that Rachel is known around here everywhere we go is unreal.  She has impacted thousands of people... even though she never said a word.  Her life was...IS... part of God's story.  She had to be exactly who she was in order for that to be. 

Because of who God created her to be.... She is loved all over the world.  Still bringing hope to people constantly. Talked about every day.  Remembered every minute.  Never forgotten.

Rightfully so.


Tuesday, November 11, 2014

Meatloaf Fridays

I have a relatively small family.  And growing up, I only saw my Mom's side which consisted of her mom and step dad (Nana & Papa), her dad and step mom (Grandpa & Chris), her sister ("Uncle" Kathy), and two brothers (Uncle Dale & Uncle David).  Then of course there was me, my older brother Shawn and younger sister Meagan. My mom was the only one of her siblings to have kids until I was 10 so we didn't have cousins at that point either.  Alice was also always around and like family to us.  My Grandpa is the youngest of 13 boys and 2 girls (who both died young) but it wasn't too often we saw all of them, although it was always entertaining when all the Italian boys got together.... but for the most part, our family was us 4 and 8 others.  My family is crazy, rough around the edges, loyal, generous, hard working... and there was never a dull moment.

My Nana and Papa lived in a little ranch home with a nice in ground pool. Two bedrooms and a bath, a small kitchen, small living room and a little den at the end of a narrow hallway.  We are all summer babies so most of our birthday parties were there.  My mom moved herself and us three kids into that little ranch where we lived while she worked on getting us a home.  Back then I didn't realize it, but living in a crowded house now I can see how much of a sacrifice that was for them to let us all live there. 

My Nana made the best chop suey, loved to laugh, and changed her curtains more often then some change their underwear.  I will never forget the last ones she bought... they had little hats as tie backs.  I think they are still hanging.  She always brought me shopping for school clothes because I was not fun to shop with and nobody else could stand me and when she did, we always got Filet of Fish sandwiches at McDonald's afterwards.

My Nana died suddenly of a heart attack when I was 10 years old and it was horrible.  She was really young and our family was devastated.  We were all so close that there wasn't a moment in a day where she wasn't missed by everyone... still isn't. 

Shortly after Nana died, Papa was diagnosed with bladder cancer.  I'm not sure if it was my idea... I'm pretty sure it was my mom's, but one Friday she dropped me off at their house with ground beef, an onion, a can of peas and some potatoes.  I made a meatloaf with baked potatoes and peas and waited for Papa to get home.  He ate it and told me I was such a good cook that he should get me a chef hat.  I was beyond happy to be taking care of him and that he liked my meatloaf.  I had succeeded at showing him I cared about him.

Later that night as I laid in 'my room' watching The Golden Girls and Papa was fast asleep, I started to get scared.  I called my mom crying and she talked me into staying. 

I went Friday after Friday with the same ingredients... and Friday after Friday, he would eat and tell me how good it was and mention my need for a chef hat.  And every week when he went to sleep, I was scared...  but it was worth it to me. 

That was 1990 and my Papa has battled his cancer on and off since.  But you would never know it.... he just never complained. 

On my birthday this year I got the news that they found 3 other types of cancer in my Papa and had given him 2-6 months to live.  On August 4th, I went and visited him.  I sat down next to him and we held hands the whole time I was there.  That hour is an hour I will always cherish.

Later that week, I made him a meatloaf.

He probably wasn't able to woof it down like he used to.  And I didn't get to enjoy it with him or hear him tell me how good it was.  But the thing is, even though I never did get that chef hat,  I know I make good meatloaf.

There aren't many things I say I'm good at.  And usually I don't decide myself that I am, it takes someone else telling me I am for me to believe it.  Like foiling hair... I am so critical of myself and such a perfectionist that it took hundreds of huge smiles after I finished doing hair for me to be able to say I'm good at foiling hair.  But even after 13 years of foiling hair, I still second guess my ability.

Not meatloaf.  I know I make a good meatloaf because when I didn't, my Papa said I did.  I make a good meatloaf because at just 10 years old, he trusted me to cook alone in his house and let me learn by my mistakes without ever pointing them out.  He never said I should add more salt, or next time try this or that....  He just let me grow into my own.  I'm sure some days my meatloaf wasn't good.  Or maybe the potatoes weren't cooked right or the peas were cold.  He never critiqued me.  He just ate it and smiled for my heart's sake.

And I thought I was serving him.... 

What a gift he gave me. 

When I make a meatloaf, my entire family right down to the baby LOVES it.  I don't do it often because beef is expensive now and we're a lot of people... but when they ask what's for dinner and I say meatloaf... they get so excited.  And I just smile as the smell fills the house and think back to the first Fridays I loved.  I'm good at this because my Papa never told me I wasn't. 

Papa isn't doing well now.  And I haven't seen him in a while because he gets too tired for company.  We are at month 4 of the 2-6 months and I'm scared to death to hear he is gone.  I have so many regrets about how life can sweep us away and years pass so quickly.  We can get so wrapped up in the busy world around us that we stop making meatloaf and we can get so focused on ourselves that when someone else makes a meatloaf we tell them how it could be better...  we add salt before we taste it or get up and toss it in the microwave because it's not the right temperature. 

I think back to that little insecure girl missing her Nana.... scared of the dark... determined to take care of my Papa who was fighting cancer, also missing my Nana, and probably not so fond of the nights himself.  And I hope that my meatloaf was everything to him that my heart hoped it to be.  But more than that I hope he knows how much him liking it was to me.  Because had he told me he would prefer it another way, I probably would have changed my dish and eventually given up.  A few consistent, encouraging words each week and it built my confidence and kept me striving to make him the best meatloaf ever each and every Friday.

I'm not sure what kind of childhood you had... if people built you up or tore you down.... but I just felt like I wanted to share about my Papa and remind myself too that it's so important to build people up.  Nobody ever gets good at making meatloaf because you tell them how horrible their last one was. 

I can so quickly get critical.  It comes naturally to me.  But when people do it to me, it breaks my spirit.  And that's the last thing I want to do to my children.  I want them to think their cookies... their artwork... the way they cleaned the toilet... where they go and what they do in life...is the best I've ever seen.  I want to fill them with life giving words that will propel them to want to be more and do better.  I pray I always remember what it felt like to sit at the table with Papa each Friday and know that he thought I was good at what I was doing.  To remember what it felt like to never have to worry if he was going to say he didn't like it.  To get better and better at it because he let me be less than perfect. 

This is one of my favorite photos with Papa.  This was at the benefit we had for Uncle Dale's funeral costs (on his 1st bday after he died) while I was pregnant with Rachel.  Why do I love this photo?  Well, because even Sam is looking at the camera... but Papa is looking at me.  He was so concerned for me.  And right after we took this photo, when everyone cleared away, he said "So, how are *you* doing?  He was one of the very few people who dared to ask me and really want to know. 
 

And this photo was at Rachel's 1st birthday at her grave.  All the kids look so small... Jay is holding a daisy with her left hand...  and Asa was brand new tucked in my ergo.  So much has changed in 3 short years.    I now have a completely different understanding of the statement "At least I have my health."



I'm not ready to say goodbye to this man.  I'm glad I got the chance to tell him the impact he had on me, but I don't think words will ever do it justice.  I just hope I can pass down even just a bit of what he did for me on those simple Friday afternoons.

And I hope I never take health or meatloaf for granted again.




Friday, November 7, 2014

Something About Put Your Shirt On....

It's been a long week - or two - or three.....

Ezra had tubes in on Monday - it was a torturous morning...  putting him under without Nitrous Oxide was not fun.  Apparently the nitrous helps avoid the serious agitation the other stuff causes...  it was horrible.  The surgery went fast, as promised.  But after they came out and told me he was out, they refused to let me in with him saying he was 'still waking up' and they were giving him oxygen.  It felt like forever, but it was probably less than 15 minutes and when I went in, he was off the wall hysterical, thrashing around and screaming... again they told me it was just the anesthesia.  I hated it before, and I really hate it now.  It was a bad experience for me.  I fell asleep sitting up at the kitchen table before my mom even left when I got back and I laid down and slept all afternoon.  I was so wiped.  totally exhausted.  Napping around here never proves to be worth it though, which is why I never do it.  I woke up to quite the mess and the full container of fluff GONE.

That being said, after the first night, he was doing great.  He's hearing much better and I can tell because he is suddenly talking like crazy.  He was trying before, but now it's clear.  He also slept through the night two days in a row, a first since he was brand new.  We have been getting up with him 3-5 times a night for 15 months.  I had no idea it was still his ears!!  He hasn't had an infection since July so I thought they weren't an issue.  I was wrong, poor baby!!

So last night, he spiked a fever.  I went with him to the ER and they said his ears looked "Very red and very angry" and put him on an antibiotic and gave him vicodin!  I didn't give him the narcotics (geez!!) but started the antibiotics and was so discouraged that his surgery had caused him an infection.  Today we went to the ENT for follow up and he said his ears look fine.  Confused?  yep, me too.  So now we stop the antibiotics and just go back to using the drops.... 

Upon return from the ENT, his temp was 103.8 and he started puking everywhere... ugh.  I guess it's a virus and a bad one.... but it's been tiring.  We go back on Monday for a recheck.  Hopefully the diagnosis won't change again!!  Pray he'll feel better soon.  He's not looking very good. 

But what I really wanted to share was why we were late for the ENT appointment.... 

Well, it all started when I decided to shower at 1:00. 

Yes, in my house if I shower, everything falls apart.  And more often than not, trying to leave the house causes the same chemical reaction..... it gets messy and loud. I believe leaving the house with 5 kids might be why Valium was created and I think it's a reasonable prescription to write... "Take one at trying to leave the house time"  Just sayin'....

So, I was in the bathroom and as usual, kids were coming in and out because I'm the only one in the house not entitled to privacy.  Ezra was standing at my feet playing with the phone.  I heard the dial tone and thought to myself that I should take that away from him... but I'm not one to mess with something that is keeping the kid out of the toilet for once in his life... so I let him play with it.

Things were going pretty smoothly.... other than Isaiah completely ignoring everything I said, as usual, and bashing a ball up against the bathroom door repeatedly in precisely the most annoying rhythm there is.  "Stop throwing the ball against the door Isaiah!" I yelled through the door.  I continued trying to get dressed as I instructed them from the bathroom.....

Get your shoes on....

Sweatshirts!!....

Get the diaper bag and put a cup in it....

Sam, where are your socks?

Isaiah, get your sweatshirt on....

Sam, stop screaming and get your socks, I'll help you with your shoes....

Isaiah, stop irritating Sam....

Sam, stop screaming....

Isaiah, get your sweatshirt....

Desirae, stop playing the piano and find Ezra a shirt....

Sam, there's no need to scream....

Asa, find your shoes....

We have to get going guys, please get your sweatshirts and shoes on!!......

Sam, stop screaming... seriously... stop.....

Why does Ezra have a pool stick?

He didn't hit you with the stick on purpose Asa, it was an accident....

Don't hit Ezra, Asa....

Isaiah, get your sweatshirt on....

ISAIAH, ARE YOU SERIOUS??  WHERE IS YOUR SWEATSHIRT, I'M GOING TO KILL SOMEONE!!  GET YOUR SWEATSHIRT ON!!  (blood pressure seriously rising at this point...)

A few minutes later, I grabbed Ezra's socks from Isaiah's hand (to free him up from doing nothing so he could get his sweatshirt on!), sat E down on the mudroom floor while wiping Sam's tears and begging him to stop his howling... (he has a very loud and horrible cry that goes right through me), and as I put E's shoes on, I realized that he needed a diaper.  I didn't have time to go back to the bathroom, so I changed him on the mudroom floor.  I have honestly never done this once before in the 6 years we've had this mudroom (and will never again)...  so now I'm yelling from the mudroom....

Isaiah, can you grab a diaper for the baby.... 

Quickly please!!!.......

I open his diaper before I realize he has poop....

Trying to keep his hands out of it and his feet down, I yell to Isaiah who has DISAPPEARED...

And HE HAS POOP, so I need a couple of wipes too.....  (where is this kid?!?!)

ISAIAH, I'M WAITING FOR BABY WIPES AND HAVE POOP IN HERE, HURRY UP!!

Desirae interrupts me to say "Mama, there are police in our backyard"

Police?  Well, that's not all that unusual around here (they were in my yard a couple weeks ago looking for a guy who was running from them) so I get a new diaper on E and I go to the door wondering who they were looking for.... I look out and there are 4 cruisers... police on all sides of my house.... looking in windows from both sides of my kitchen.  One is knocking on my sliding door.

Hmmm... feeling a little like the day the drug task force was after me... I crack the sliding door to see what he wants....  he's leaning up against my mop handle I left hanging over the railing yesterday when I mopped the kitchen floor.... (that's right, it *was* clean... yesterday... )

"We had a 911 call from a child..."

"ARE YOU FREAKING KIDDING ME?!" I said.

No, they don't joke about these things

He continued....

"We heard a child's voice and something about 'Put your shirt on"....

Oh my word....  this is awesome. 

"Is everything okay in there?" He asked.

And being who I am, I said "Yeah, everything's fine except we are trying to get out the door and nobody will get dressed!"  Lord, I hope he has kids and knows I'm not crazy.....I hope that makes sense to him...  I'm just glad *I'm* dressed... I look down to make sure I am... phew.

I turned around as he followed me in, fighting with the mop handle to get by... because you know they can't leave until they find the phone that still has the 911 operator waiting on it and they know it's not a kid locked in a closet somewhere....  I mean, it's probably in the handbook somewhere that just because the adult in the house says it was an accidental call, doesn't mean she's telling the truth. And look at her... she doesn't look very stable.... and she was just yelling about POOP!!

Suddenly the utter DISASTER in my house became obvious....crap everywhere.  And I mean EVERYWHERE. Why couldn't he have called the police yesterday?  There was food on the counter and floor... clothes all over the kitchen floor... the diaper bag torn apart and Desirae's prescription bottle of allergy medicine we carry in it laying out.  (he probably checked it out while I was walking around)  All of the couch cushions were scattered and piled into a big tower and the packing material from a package we opened all over the place..... what did they do to this house while I was in the shower?!?!?!  Why did I take a shower?!  Why did I let them in?  And are these cops going to call DHS on me is my next question...!?  I was horrified.  I was embarrassed.  And I was LATE.  I'm assuming they were wondering why my children weren't in school too....

My 5 kids, who now miraculously have their sweatshirts on and all look so put together, stand staring up at the police in my kitchen as one asks them if they are all ok here.  I, on the other hand, am running around with wet frazzled hair, ONE SHOE ON, and out of breath with a dirty diaper in my hand.... searching for my phone so they know I'm not really killing anyone and I can leave so I can get to the ENT. 

"Help me find the phone guys!!!"

They don't budge.

Is this seriously happening to me...?  Yes, yes it is....  You can't make this stuff up. 

I was starting to get a little worried about how I was getting these guys out of here should my phone not turn up.  We lose it for days at a time sometimes....Do I just say "Sorry, but I have to leave now...  Thanks for stopping by" ?   I think back to when I saw Ezra with it last.... he was next to me in the bathroom....The diaper pail!!

I open the diaper pail and hear the 911 operator talking.  I reach in past the poopy diapers and pull it out, hand it to the police officer and they hung it up at just over a total 9 minute call.  It took them about 3 minutes to get here and the rest was while we... I mean while *I*... searched for the phone. 

Apparently they move fast when mothers threaten to kill people....  too bad that doesn't work for my kids!   

I teetered between laughter and feeling like I wanted to puke the whole way to the ENT.  You know, just to be sure I also appeared insane to everyone I passed on the road.  The kids asked "What's funny Mama?" and I blurted out "I'm going to kill someone??... " as I laughed.  Yeah, way to look crazy Stacy.  But I just could *not* believe that 911 was in my diaper pail, which was right next to me as I yelled orders from my bathroom.  Who has things like this happen to them?!?   Desirae said something about seeing if there was someone who could make a movie out of our life.... she thinks 'that scene' from our house would make a good piece in a movie.  Maybe the movie proceeds can pay for all of my children's counseling when they are older - I think they might need it.

The appointment was quick and easy, we left and I stopped by Rachel's grave to finally plant the bulbs I've been trying to get over there for weeks now....I've stopped 3 times already and not had the stuff to do it.  I thought I had it all in the truck now.  I got out and put my gardening gloves on, opened my bag and realized I forgot the bulb digger.... guess I'll have to do that *another* time....got back in the truck and went to Market Basket to grab our Friday night pizza supplies... 

Did I just say I went to Market Basket with 5 of my kids on a Friday afternoon after the day I just had?  Yes, yes I did.  And I am obviously not all that smart.   Asa fell asleep on the way and I thought about leaving him and Des in the truck since waking him sounded dangerous.  She's old enough to babysit, she should be fine to sit in the car for 15 minutes I thought.... Um, yeah right, I can only imagine what else could go wrong today.  I can handle this....

I got out and walked around to get Asa.  There's a lady next to me trying to back out insisting I can go first... I motioned for her to go... she motioned for me... I yelled "I have a ton of kids, it's ok you go first!" and as she backed up, I look up to see Isaiah SHAKING Asa's little head all over the place, hard.  I don't understand that boy sometimes.  I'm starting to feel like he wants me to go to jail.  I can see the headline... Little boy shaken to death in Market Basket parking lot after police respond to a diaper pail 911 call....  "Isaiah, are you crazy?!  Stop shaking him like that...you're going to hurt him!" I said.  They all pile out....Asa's now crying which continued for most of the trip into the mob scene we call Market Basket.

As we walked in, I turned around to find Isaiah... you guessed it... not wearing his sweatshirt!!  IS THIS KID FOR REAL??  It's days like these I seriously want the yellow bus to come pick him up for 8 hours.  I love him dearly.  I even love his craziness... I would miss him if he went to school and I really don't want him to go anywhere,  but he wears. me. out.

Then, I pulled out one of the pizza crusts and a pile of crusts on the shelf came sliding down on me, all over the floor.  "This is ridiculous!" I moaned.... and as I stood up, there is my friend Melissa behind me smiling at me...  "Living the dream?" she joked knowingly... 

Yes, yes I am.  I'm living it.  It's my dream.  Always has been and always will be...  It's just in my dream, they put on their stuff when it was time to leave.  They listened and smiled and never talked back, they didn't shake each other, and they *never* called 911 while I was yelling at them.  Oh, that's right because in my dream, I never yelled. 

One of my favorite lines in Mom's Night Out is when she is encouraging a young mom who feels like a failure and says, "This mom thing is crazy hard and you're doing a great job."   - I think 'crazy hard' is an understatement.  I was so thankful for Melissa's comment at that moment.... to know that someone else understands what it is like to homeschool a bunch of kids who also aren't perfect and have a shelf empty on you at the end of the day.... and be talking to yourself as it does... to know that someone, anyone understands how hard this is and doesn't expect me to never mess up.  To know someone else gets that raising kids full time is not at all what we expect it to be going in.  I need people who can laugh with me because if I take myself too seriously, I'll go nuts.  Life is too short to be so serious all the time.  And honestly, my shoulders can't handle the weight of what it requires to be "perfect".  Because I'm so not.   I tried to watch that movie with Matt and he didn't understand why I thought it was funny - or why some parts moved me to tears... but I watched it with Desirae and she did.  She was laughing with me because she lives my dream 24/7 with me and she knows it's HARD. 

All I can say is I'm glad the cops got here when they did because about 30 seconds later and I would have been in my Suburban flying down the road for our appointment and they probably would have called it in as a chase!  LOL.  I can only imagine what they expected to find as they approached my house to me yelling "I'm waiting for Baby wipes and have poop in here!"  Oh my word, *that* must be on the tape too!!  (shaking my head)

"A kids voice and 'Something about put your shirt on'"... I can see why they sent 4 cars....

I walked into the ENT and said "I'm sorry we're late, the police were at our house."  Oh, the look on her face... I back tracked and explained it was the kid with the tubes' fault.... a likely story, right? 

Why is my life like this?  I'm getting too old for this kind of excitement.  Ezra is officially grounded from the phone - forever.  His big brown eyes saved him today - he's so cute I can barely stand it.

Did I mention a few weeks back MATT accidentally called 911 on his cell phone from church?  Yeah, it was the 2nd time that week HE did it, so they made us wait so they could confirm everyone was okay and showed up in the parking lot at church....  Fun times with the Aubes.  Never a dull moment!! 

Thursday, November 6, 2014

Her Every Little Thing

As a general rule, I don't cry much over Rachel anymore.  Maybe a tear here or there, but not usually.  I guess I've arrived at the place we (everyone else) call 'healed'... at least as far as my outward appearance might show.  I can tell because people don't shy away from talking to me as much. I still feel heavy hearted at times, but even those are more spread out.  And there may be minutes that pass that she isn't on my mind, but not an hour... not 43 minutes. 

I think about her all the time.  In every conversation, even when nobody talks about her.  If you speak to me, even about say the cold your child has or what you ate for dinner the night before or somewhere you visited... you may not know it, but I can *guarantee* you that at least once while I appear to be listening, I am thinking "Rachel".  And since I'm a good multi-tasker, I can also completely engage in our talk - or in whatever else I'm doing in 'normal' life...reading the kids a book, changing a diaper, teaching grammar, going to gymnastics.... but that's because tears don't fall much anymore so nobody knows - just me.  I just carry the weight on me, but it's not obvious to you most days and unless you have been in my exact shoes, you don't even comprehend what I mean - not because you don't want to, but because you can't - even if you think you can. 

So as I mentioned in my last post, I've been working on the care packages for her birthday.  I ordered boxes well over a month ago and they came and I didn't like them.  They were way too big and ugly. I've traveled hours of combined time and used lots of gas looking for the perfect boxes at a good price and they weren't falling into my lap like they did last year.  I've also done the same high and low search for photo albums... and outfits... and in the end, I've spent more money than I started out planning on...

But all but one of the new items arrived today.  And they are *beautiful*.  My sister was here when they came and she couldn't believe they were for the hospital.  And I can't either.  They are amazing.  And I want to get one to put Rachel's stuff in because they are *that* nice.

If you remember last year the hospital had told me they weren't sure they would be taking boxes in the future... and I went ahead and bought it all without talking to them first, figuring I could always donate it somewhere else if Maine Med didn't take them. 

I just got off the phone with Alice at the hospital... and it's a go for December 3rd.  She knew who I was when I said "Rachel".  That's happened to me multiple times this week alone - including in the OR with Ezra on Monday and on the phone with the community clothing closet today.  People know Rachel.  It's amazing.

I hung up with the hospital and smiled and before I even fully finished my happy emotion, my smile turned to tears.  And now I can't stop crying...  and I guess it had to happen sooner or later - it is November.  And November makes me cry.  Has for the last 4 years. 

I can't believe she's dead.  I can't believe it.  I mean, I obviously know it happened but how?  And why?   I should have a little 4 year old girl running around our home right now and instead I'm picking boxes to bring to other families of dead babies. 

It's so sad.  It's overwhelming.  It's maddening.  It's unbelievable.  It breaks my heart over and over again and will until the day I die.  I was so unprepared for this.  I thought I would move forward from her like I did after losing Silas... that because I had lost a baby before I was familiar with it all and it would get easier with a little time and then eventually be a sad thing I would always remember as the hardest thing I went through, yet not be a source of sadness for my ENTIRE freaking life.  That the anniversary of her death would remind me and bring me back, maybe even make me sad, but not be a part of my every day survival.  I was so ignorant.  I was so wrong.  And I was so not ready.  And even today, I'm still so caught off guard by how this doesn't ever go away. 

I just want my little girl.  I don't even need her healthy and "perfect", I would take her in any way she could stay... just if she could stay. 

I should have seen this coming, I was on the way to buy daisies yesterday.  4 years of daisies always on my counter....  and a song came on from long ago and even though I had just put make up on, (yes that factors into if I allow myself to cry) I started crying, thankful for my sunglasses as I sat at the light with visions of my time with her in my head...

"Lying close to you feeling your heart beating
And I'm wondering what you're dreaming,
Wondering if it's me you're seeing
Then I kiss your eyes and thank God we're together
And I just wanna stay with you
In this moment forever, forever and ever

I don't wanna close my eyes
I don't wanna fall asleep
'Cause I'd miss you, baby
And I don't wanna miss a thing"
 
 
Random things I wonder about Rachel.... Could she see me or was she blind?  Was she able to have 'thoughts'?  Feelings?  Did she know I was there?  Did she feel my love?  Would she be left handed?  Have blonde hair?  Does she know I stayed awake to spend every moment I could with her.... that I did everything I could to not miss a thing? 
 
Does she know how much I miss *every*, *tiny*, *little*, thing?
 
Because I miss her so much that, even though I'm afraid of what it might feel like, I beg God to let me see her in my dreams - it's been 4 years and I still have yet to dream of her once.  But maybe all my daydreaming makes up for it....
 
For every ounce of fighting I did to not close my eyes... to not fall asleep... to not miss a thing when I was in that hospital room on December 3, 2010 - and even pregnant with her... I now equally yearn for time to close my eyes and fall asleep just to go to a place where maybe the reality of her absence will leave me and I can escape back to the moments of being with her.  Because I don't want to celebrate her 4th birthday by bringing memory boxes to the hospital.  I want to throw a ballerina party and make her a birthday cake.  I want to wake up to her asking for a drink and reminding me it's her birthday and telling me what she wants for presents.  I want her.  I miss her.  I want to know her.  I want to take care of her.  I miss her "things".... her every little thing.  

Tuesday, November 4, 2014

Guess Who's Having a Baby....

Not me!  :)  But now that I have your attention, please read this!!

It's that time of year again...  Rachel Alice's 4th birthday is fast approaching and I have some exciting things to share!  

God has presented us with another opportunity to celebrate life and share the love of Christ.  We have been led to a young girl from our local high school who is expecting a baby boy in March. We have never met her, the girls who work at the gas station around the corner told us that she is in need of help preparing for her baby and doesn't have much support.  Her name is Lindsey and I hear she is almost done high school, will be graduating in January, has a job too and is a hard worker.   

I gave her the option of us having a shower with her in attendance or just gathering and donating items to her.  I told her I am pretty good at throwing parties and she accepted. :)  I admit this feels awkward to me.  I am nervous about it being a flop and her feeling disappointed or let down.  But God put it on my heart and so I am going with it and I'm hoping you will help me!!  

I have been having fun helping her pick items and making the invitations.  It's such an honor to remember Rachel this way... by pouring my love on others.  I have to say the thought of having your first baby so young and not having a time where people gather and celebrate sounds sad to me.  I'm pretty sure she would not have had a shower if it wasn't for Rachel.  I think this young lady needs to know that choosing life doesn't leave you alone....and I want her to feel the love that God so freely gives through us.  So if you are local and can make this, I would be ever so grateful if you stop by and show your support even if you cannot bring a gift.  

We will be having her baby shower at our home (email me at RachelsMama@ymail.com if you need our address) on Saturday December 6, 2014 from 2 - 4 pm.  I hope to make this a relaxing and fun time... and of course there will be caramel in some form to enjoy.  Please join us!!!

I asked Lindsey to set up two registries, which she has.  She is registered at Walmart and on Amazon.com.  They have my address as a "ship to," so if you are far away and want to pick something to be sent, it can be sent straight to me and I will wrap it and give it to her.  If it's easier, you can also send a gift card to Walmart or Amazon (or anywhere, really), a check or a donation to our Paypal.  I will use these to purchase items off of her registries and will wrap them for her special day.  She has a couple of bigger items she needs and I can use multiple donations to get them, so please don't think any amount is too small!  Even $5 or $10 will really add up and could make a big difference for her and this new bundle of joy.   

If you will be helping us from a distance, please send items to arrive no later than December 1 so I have time to wrap them.   Also, if you are sending a donation, I will need time to order items after receiving it as well, so please take that into consideration. 

Thank you so much for being part of Rachel's beautiful legacy.  It's hard to believe it's been 4 years since she came and went.  I still miss her every minute of every day... and yet I look back over these past 4 years and am blown away by how many lives this little girl has touched.... how many handprints she has left on hearts... how many people have been renewed in their relationship with Christ... how many kids have be given extra kisses or an extra dose of patience... all because she lived and died.  It's been the most blessed years of my life.  *Thank you* for walking this journey with me.  Thank you for loving my girl.



Donations can be mailed to:

Baby Rachel's Legacy
PO Box 454
Rochester, NH 03866-0454

If you have any trouble with the links, you can search either site by using her full name, Lindsey Seale in NH.  Thanks!!

This is the invite I made for Rachel's family and friends
Front


Back

And here is a peak at the invites I made for Lindsey's family and friends.  Obviously I didn't cross out the address and phone number on hers :)




P.S!!  Thanks to all the support we had at Rachel's Race in August,  I am almost done purchasing items for care packages that we will deliver to Maine Medical on December 3rd.  Matt has requested the day off again and we plan to do what we did last year - to drive up to where Rachel spent her 43 minutes alive outside of my womb, show the kids where she was born, and donate care packages for other families who lose babies unexpectedly - families who find themselves leaving the hospital with a memory box instead of their baby.  

I have had the chance to talk to a mom who got one of the boxes last year and she was so blessed by it.  She even sent me a picture of her baby's tiny little foot as she was taking his print with the ink and paper we sent.  It is a gift to be able to provide for others in this way... to help them bring home keepsakes they will always be so glad they have.   

Rachel's boxes already have a reputation for being very nice, but these just got even better!  :)  Once I have everything here, I will share the items with you!  



Sunday, November 2, 2014

By His Grace

I woke up this morning feeling like I was going to wish I never wrote that post last night.  I hate feeling like a ball of negativity.

This summer, as I prepared to start school with the kids, God kept putting the word "Grace" on my heart.  A reminder that I needed to give it to myself and others - to not expect me or the kids to be perfect... to really learn what it means to be a woman walking in the grace of my Lord.  And so when I saw this sign, it came home with me even though I really didn't have the money for it - and although I have taken most things off my wall (for sales purposes) I put this up that afternoon, right above my coffee pot so I read it every morning...

The week I found out about my aneurysm and Syrinx, there was a new Bible study announced called Between a Rock and a Grace Place... so I signed up.  It was about learning how to lean into God's grace when life is hard.  sigh.

This morning our church watched the movie Monumental together between services.  I found myself feeling really challenged by the faith of our forefathers...  what they went through, what they went without, what they lost... all because they felt their cause worthy and right and from God.   And I think I have it rough.... ??   They believed with everything they were that if they just did the next right thing, in the end, God would provide - even if it was just for the generations behind them.

As the Pastor opened the service, he talked about God's grace and how when he went searching the Scriptures to learn more about it, it wasn't too long before he couldn't handle anymore of it because it's *that* big and awesome and overwhelming.  And I sighed knowing that I not only need to be better at giving grace, but also in receiving it - from people and more importantly, from God.

The first song we sang was "Your Grace is Enough".  I remember clear as can be that being the song we sang the morning we dedicated Isaiah to the Lord at our old church when he was just 6 months old.... His sufficient grace has been my cornerstone for parenting.... because WOW is it hard...
But as I sang....

Great is Your love and justice God
You use the weak to lead the strong
You lead us in the song of your salvation
And all your people sing along....

I heard It's okay to be weak.....  God uses the weak.

Then we sang "Always" - a song that has been the cry of my heart so many times these past couple of years.... And as I sang....

Trouble surrounds me
Chaos abounding
My soul will rest in You.
I will not fear the war
I will not fear the storm
My help is on the way
My help is on the way....

I heard It's okay to have trouble.... God uses trials and He is there through the storms.

And tonight, I got an email from my friend Chloe in New Zealand... she sent me a video which I knew I had seen before and even pretty much knew what it was all about - I blogged about it a long time ago...  but she wanted me to watch it again, so I did.

Let me just share that right now, the kids & I are learning about molecules in science.  All of our experiments this week had to do with molecular structure and how they cling together in patterns.  So although I had seen this before, the timing of it was different....it was *perfect*

And as I watched it I heard... It's okay if you fall apart, I will hold you together. 

Here is the video and I would encourage you to watch it even if you've seen it before too.

I was already feeling better, but when I watched this video, I cried.  I had tears of relief... tears of surrender... tears of a renewed spirit.... tears of such gratitude for how God is in every single detail... in every tiny bit of our bodies.  None of what I'm going through is new information to Him.  And none of it is beyond His power.


And as I sit here tonight with these lyrics running through my mind....

Oh my God, He will not delay
My refuge and strength always
I will not fear
His promise is true
My God will come through always
Always.

I lift my eyes up
My help comes from the Lord.

I hear.,,  It's okay to ask questions, to struggle, to not be perfect.... God wants a real and intimate relationship with people who know how much they need him.  If I had all the answers, never struggled and was perfect in my own eyes, I would have no need for God.  I'm thankful that by his grace, I know I do.

So here I am Lord, use me. 

A Trust Issue

I have lots of thoughts going around in my head most of my days that I would love to share.

Most of them are things I once could have easily turned into a blog post.

But these days, it's not coming.

I'm in a strange place.  At first I thought it was a good strange place... and I think it was...  but now (I guess right on time per textbook grief descriptions) I'm in a not-so-good strange place that I have no words for.  And when I try to put words to it, I cry - or get angry.  And honestly, I don't have the energy or time to cry.  Plus, my head hurts enough without tears.  And being angry is bad for aneurysms... and such a waste of life.

I could use some prayer.  I know many are already doing that.  Thank you.  I just need prayer especially that I won't run from God on this journey with "chronic illness" - because I feel like I am and I need him.  More than I need people (thankfully, since deactivating from Facebook is pretty telling in the 'Friends' department)... More than I need healing, more than I need happiness, more than I need provision for earthly needs... I *need* all of this to make me stronger in Him...  I need it to bring me closer to him... I need it to make me more like him... I need it to reveal more and more to me - and more and more to the world - who He is.

Because if it doesn't... I don't know how I'll handle it.

And I just don't know how that is possible right now.  Which is kind of my problem.

I had a cry last night - like the kind where there aren't many tears, but your lip and chin quiver like you're being electrocuted... and besides being really distracted by my chin moving obnoxiously, all I could think was "But He has a plan, Right?"

I hear he does.  And I'm just wondering if it's ever not going to include either physical or emotional pain?  Because quite frankly, my entire life has been full of it and I'm about tired of it.

Even the road with Rachel at least had purpose...  beauty... things that made it seem somehow less daunting....reasons to smile. But with this... there's nothing.  It's long and lonely and hard... and people don't stay away because they are afraid of something that they don't understand - they stay away because they think they do understand something they don't and have no idea how heavy it truly is.  Or even better... they just never really cared that much.  If there's no "like" button, there's no time to say I'm with you.

I don't want a lot  - just enough health and strength for the chance to raise my kids and, I don't know... maybe garden?  I've never asked for a pain free existence.  I've never asked for an easy road - and as  matter of fact, I've always embraced the hard stuff because it's made me who I am and who God uses.  But I just don't get this.

I know he doesn't owe me anything.

Like I said, I could use some prayer.  Especially being a month away from Rachel's 4th birthday.  This year has been much lighter on me grief wise, but time and distance have their own, different way of hurting.

Please also pray for Ezra - he's having surgery to put tubes in on Monday.  His hearing is still low and has been since May - so even though he's been infection free since July, his eardrum is still flat lining on the pressure test from the fluid behind them.

And just FYI for any of you who also have the MTHFR gene mutation... or think you might....When doing his hospital intake, I mentioned to them that I have the mutation and had read maybe some anesthesia could be problematic for me. They had the anesthesiologist call me back and he said there have been reports of kids who have the mutation and don't know it being given Nitrous Oxide and getting very sick and even DYING.  I had only read that I shouldn't have Nitrous Oxide in ONE article in all of my research - and after the Pediatrician REFUSING my kids the test deeming it "not necessary" to know,  I was more than surprised when anesthesia called me saying it wasn't safe for my kids to have it without us knowing for sure they don't have the MTHFR mutation.  Which we don't, thanks to Dr Rubin and the "genetic specialist" in Dover who said testing was pointless.  It maddening how little people know about this and how they all just blow it off.

Good to know, glad I asked.  Their prideful "doctor" could have seriously killed my baby.  I want to tell him about it, but he's not worth my energy either and my blood pressure rises just thinking about it. Hopefully their new doctor will be a little more reasonable and test my kids. (pray for that - that's coming up too)  But for now, I'm thankful that God protected E from potential harm.  SO thankful that someone listened and was proactive.  Not very common in the medical field these days.

Now I just hope I'm making the right decision doing this.  The thought of him being put under in front of me makes my stomach turn.  I've only seen a lifeless baby in front of me once before and she never came back.  It's going to be a long "ten minutes".  That's what I hear... it's only ten minutes.... For who?   Probably everyone else but me.

Seems to be the common theme.

Pray God can use my common theme to strengthen me.  I'm struggling to rise above it.  Only He can make beauty rise from ashes.  My heart needs to be revived with *His* common theme... I know it... it's redemption, love, purpose....  but I can't even see Him through it all right now.  Maybe I'm not looking hard enough.  He never moves... so it must be me.  And yet, I can't seem to move closer...

And, as usual as I write, I discover what's under all these random thoughts...  it's a trust issue.  I have a trust issue.  I am struggling to trust that He won't let me down and leave me  - that He has my best in mind - and that even if I die and my kids grow up without a mom, that He can use even my death for their good.  That thought makes me angry... and maybe that's my pride, but I don't want him to use my death - I want to be there with them.  I don't want to trust him to help them live without me.  I don't want to trust him to carry me through a lifetime of pointless pain and ER visits and physical limitations.  I don't want to even trust him to heal me.  I just want to be normal.  And I don't know why that was never in my cards.  Not as a child, a teenager, a young adult, a non believer, a believer, a mom, a wife.   I'm seriously disappointed in this plan.  I'm tired of hard.  Couldn't I just have between Rachel and my kids moving out to just do 'normal' life?  Couldn't I just have their childhood to be a strong healthy mom for them?  Does it always have to be something??  Dead baby, cancer,  pediatric stroke, autoimmune diseases, gene mutations, protruding disc, nerve damage, brain aneurysm... what's next??  I am almost scared to ask.  I know there are people who have it worse.... or never even make it to 35 with their kids.  I don't know, I just need a break.  I'm so discouraged.

I'll get back to good, but right now, I'm not there.  But where else am I going to go?

Saturday, October 18, 2014

I Cried Because I Couldn't Stop

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

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

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

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

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

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

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

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

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

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

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

(prayer requests below are underlined...)

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

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

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

Wednesday, October 15, 2014

Daisy's Mama

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

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

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

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

And then I remembered, I have.  sigh.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

That's my girl. ♥



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