Tuesday, September 30, 2014

Blessings Call

As I click on "New Post", I have no idea what to even write.

Maybe that's part of the trouble of going so long in between posts... or maybe what God is doing in the middle of this deep valley is too big for words.  Either way, I feel completely lost for them.

I will start writing anyway and see if it loosens me up to try.  

We went on our annual trip to Maine a couple weeks ago.  9 days with 6 of my most favorite people on earth in a little dusty (and this year mice filled) cabin on a pond where the water is great to look at, but scary to touch.  A place where Zyrtec is like a food group, I shake everything before I put it on us to check for spiders and cell service is completely non-existent.

I'm sure in the past looking at our photos and hearing the stories, you have been unaware of details like that.  And the only reason I share them now is because it only makes the next thing I'm about to tell you that more important.

It was the best 9 days of my entire life.  The best 9 days of our marriage... the best 9 days with my kids...  the best 9 days with God... and the best 9 days with Rachel (I'll explain this one more later).  And I cried for the first 15 minutes on our way home.

I think I was crying because I didn't want to leave and come back to reality - but even more so I was crying because I fear I might never get to be there with my favorite people on earth again.  And the amazing thing about those 9 days is that we were all so close and completely connected that as I cried, I didn't have to explain my tears - they all knew.  It was one of the very only times - maybe aside from being at Rachel's funeral or her grave or maybe being on the phone with my sister when Jay was in the hospital that my tears weren't confusing to Matt.... that he didn't need me to explain in order to really get it.  I only know that because he said to me "This doesn't mean you'll never go back there again..." instead of "What's wrong?"

I hope he's right, but honestly, I'm not convinced.  My body is completely crumbling on me.  It progressively gets worse each day and I am in constant pain now - in places that didn't hurt even 6 months ago.  The day before we left I had my 2nd opinion at another neurologist.  She gave me the same input as far as my aneurysm... it's a watch and wait and hope to catch it in size to intervene before it has a chance to bleed.  It's too small to do anything about right now, which is fine because I'm all set with brain surgery - but it does feel slightly like a ticking time bomb in my head. My syrinx is just something I will have to deal with.  Surgery probably wouldn't fix it for long and my back going numb is not something I can't handle. Until it gets worse, that's on the back burner. She informed me that I also have a protruding disc in my neck (somehow the other dude has forgotten to tell me about that for now 3 phone calls...!) And she is convinced that is the cause of my weakness and numbness in my arms.  Upon the return of our trip, I had my Nerve Conduction Study.  I was sure it was a waste of time since they had already found everything else, but they found and gave me another diagnosis which is a fancy term for a chronic pinched nerve caused by damage to the structure in my neck.  The vertebrae on each side of the disc that is hanging out is degenerating. And I'm not sure how that will play into my Akylosing Spondylitis - or maybe if it's part of it since that causes your spine to fuse together and you lose range of motion in your neck.
In my neck... sigh....

This past year has just been one thing after another after another.... after another...  and I'm only 35.  I grew up with a single mom and have never been the kind of girl who can't get things done on my own.  Perhaps that isn't always a good thing... maybe not always a good heart attitude... but if I want a piece of furniture moved or something fixed, I have always done it myself.  I have always been strong and able.  I have been a gym goer since I was 15. Carrying babies on both hips was never a problem.  Now I have trouble carrying one... I need to ask for help to move things at all, to garden, to pick up things that fall to the ground in front of me.  It's like being perpetually 9 months pregnant with no due date and no beautiful gift awaiting.  And I'm sick of it already.  I'm tried of everything being so close and feeling so out of reach - and yet I know this is the beginning of a long road of only more of the same.

I know God can heal me.  I know He could take it all away - but what I keep hearing from him is a similar thing I heard with Rachel... "It's not going away, but I will be with you..."

In the meantime, I have been living life in ways I wish I would have done years ago.  And maybe that is the 'beautiful gift' I'm gaining in it all.

I try not to regret my past - the years I wasted drinking and doing drugs in dingy houses thinking I was having fun. Maybe even really having fun.  I had a lot of laughs.  I would have rather had real friends, sunsets, life experiences that weren't illegal!  I can't help but wonder if all the amphetamines I did caused my aneurysm (another thing the first neurologist was incorrect about) or if maybe one of my many fights was the 'trauma' that caused my syrinx... What did I trade for 'fun'?

I try not to regret the years I have wasted running the rat race being too busy for my own good - or for the good of my family.  It wasn't all bad... I've done some pretty huge and amazing things.  I've gotten us all to thousands of appointments, I've held jobs - even brought 4 kids with me to work, I've signed us up for classes, I've stacked days full and accomplished a lot all while baking cookies and homemade gluten free bread.  It's not like I was busy with useless things.  Some of it is stuff that has to be done.  Just maybe not all at once.  I would have rather sat down and played a game with my kids, had coffee with friends without cleaning the kitchen, gotten more sleep, slowed down and took in each day.  Why can that only happen on vacation??  What did I trade to put those checks on my 'to-do' list?

I try not to regret the years I have wasted in front of a screen while laughter and playing went on right behind my back and I missed it... how many times have I made my children 'wait a minute' that turned into 30?  How many times have I needed to do that 'one last thing' while they needed me?  How many times have I put people I have never met - or topics not as important - before my family?  How many times have I sat with my kids in a waiting room and looked at my phone instead of them?  Thank God I can't afford an IPad because that would have been even worse!  I would have rather watched them, showed them I cared about the book they liked - and read it to them, let them sit on my lap, helped them with whatever was their most important thing at that moment, even if it seemed small in my world. What have I traded to be 'logged on'?

It's hard to know I could have had so much more and I forfeited it.  Not all for bad things - some very good things... but I wish I went for the better things.

So, while it may appear that I have disappeared into a low place, please know that I have not.  I'm actually in a good space - as hard as it may be - the space where I understand that this moment is all I have and may be all I get.  I thought I knew it before, but let me tell you - letting go of my daughter so she can spend eternity in heaven with my Lord is not nearly as hard to think about as the idea of leaving my children in this scary world without me - especially when I know that the truth of heaven doesn't erase the pain of death or the absence of a person you love.  And if that is going to be part of their story - if they will have to say goodbye to me and visit my grave much too young, I am not going to steal their time with me now.  If I could go to great lengths to do everything I wanted to do with Rachel while she was here, then it only makes sense that I give my kids that same gift with me while I'm here.  It's not a duty, it's a blessing.

That being said, blessings are calling - life is going on behind me.... and I'm not trading it for anything.

Friday, September 12, 2014

2013 Photo Book

I finally got around to making a photo book of our vacation last year.  I make a book each year and it's the only thing I've managed to keep up with as far as photos and memories go as we have added children to our family.  I had a coupon for a free book that expired at midnight, so I wasn't able to make it detailed and cute like I usually do, but was actually kind of liberated by being able to let go of my overachiever perfectionist style and just get it done.  So, here it is... nothing too fancy, but we won't have a gap in years on our bookshelf!  And I can't believe how fast the kids are growing.  Much too fast for my heart.  Of course God had "Rachel" all over this trip as usual....

(had to remove the photo book)

Saturday, September 6, 2014

The Good Stuff

I did hear from the doctor on Tuesday.  I thought he would have new news for me, but all he did was confirm it's a brain aneurysm.  It's not big enough to operate on, so he said we will have a scan in 6 months to remeasure and if it's grown, he will refer me to a neurosurgeon.

He gave me no restrictions at all, which is good, but almost seems wrong...  I think I am going to get a 2nd opinion just so I can stop wondering if this guy doesn't know what he's saying.  I was going to wait until my follow up and then get another opinion based on his plan of action from there, but I was pretty unimpressed with the answers I got to some of my questions, so I will probably do that soon.

The kids & I have had an awesome week.  Our summer started late (post-race) but we are thoroughly enjoying it now!

Yesterday Matt came home saying we were going out for a while and asked what I wanted to do.

"I want to run" I said.

He looked at me sideways and repeated that back to me with confusion....

"Yes, I have wanted to run a 5K since after I had Rachel and between being pregnant or recovering from a baby and now my physical pain, I have only ever done it once on the treadmill and I want to do it.  The doctor said I can do anything I want to and that's what I want to do....."

And he humored me -  LOL - and brought me to the track at the highschool.

Being the overachiever I am, I planned on a mile, but in my head was thinking maybe we could just slam out a 5K on our first shot....  nope, we made it 3 times around the track and there was walking on both ends to warm up and cool down, so we probably only ran 1/4 mile.  But my knees don't hurt today, which is a miracle all in itself!

I'm all done waiting until ___(fill in the blank)___ to do things.  I want to run a 5K and I'm going to while I still can.  I don't know what the future holds and I don't want to have any regrets.  Time is something you can't get back - and wow, it goes fast.

Sam needed a piggy back walking home from gymnastics the other day and Desirae's flip flops were hurting her feet, so I traded her for mine and, wearing flip flops a size too small for me, picked up my boy and carried him until I couldn't carry him anymore.  Both of them felt so loved by these simple things.  That did hurt my knees, but it was worth it.

I've had coffee with friends, long conversations on the phone, sweet time on my knees and in God's Word and all sorts of hugs and kisses from my babies and my husband.  This is the good stuff.

Isn't it just like God to use something hard for my good?  Romans 8:28 was the verse on our wedding favors... and all we knew at that point is we were very unlikely to succeed given our past and where we came from, but we knew that God had brought us to that very moment for a purpose and He would continue to care for us through the less than perfect circumstances bound to eventually come our way.

He always has.  He is now.  And He always will.

 Romans 8:28

And we know that all things work together for good to those who love God, to those who are the called according to His purpose.

2 Corinthians 4:16
Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day

Monday, September 1, 2014

Tell Me it Sucks

Maybe I've moved out of the shock phase to the 'it's real' phase... but I'm finally starting to realize that this is happening to me.

I haven't done much looking on line - I honestly just want to focus on my time with my family and not how I might die or how painful it will be getting there....but I'm trying to prepare myself for the conversation with the doctor on Tuesday and I want my questions ready to be answered.

I looked into my aneurysm last night, I got to the Treatment Options and all I find is a list of risks... I read:

blot clots
swelling of the brain

I started crying.  Not just because I'm already at high risk for stroke because of my MTHFR gene mutation, but because all I could picture was what I watched Jay go through and her having her skull cut off for months with one side of her head being way bigger than the other from the swelling and being in a coma for weeks, not able to talk or eat for even longer, and PICU for months, then rehab for longer, and almost dying multiple times.  She still talks to me about the first time I fed her pudding... 9 years old having to learn how to eat pudding again.  I HATE that this happened to her... to my sister... to our family.... and we're approaching the one year anniversary, so memories have already been flooding my mind as it is.

And honestly, the part that really breaks my heart about the possibility of me having my aneurysm rupture is knowing what it feels like to be on the other side of that and I don't want my family to have to watch me endure something like that.  To wait on every phone call fearing I won't make it. Driving hours a day to get to me. Or for them to have to arrange my funeral.  My kids have been through enough.  Matt, my parents, my sister and brother, my grandparents... they've all been through enough already.  It's been a LONG 4 years.

So last night I did all I know how to do when confronted with such overwhelming, heavy feelings... I dropped to my knees and cried out to my God.  I actually fell asleep on my knees, head on my bed.  And I know He is with me - I've been covered with peace in the midst of this all... but there are still those moments in the middle of the day... in the shower... driving down the road... watching my kids play... where I realized the magnitude of what is going on with me.

So tonight, I looked up the syrinx to answer some of Matt's questions and I'm again overwhelmed. While this finding was easy to gloss over at first because it's not a diagnosis I'm familiar with and so it didn't automatically shout "death" to me... I am feeling like this is more of a guarantee, whereas the aneurysm feels like it could possibly not affect me.

Here is a LINK with information about it.  Although this is the first site I have found that suggests that surgery can be successful.  Every other site said that most often the syrinx will recur shortly after surgery. :(

Seriously... what do I do with this?   Please save the 'right' answers.  I already know those... trust God... don't worry... pray... believe He can heal me...  I've got it all down as much as humanly possible and for where I fall short, I know He can cover the distance.  He is good, even when life is hard.  And I firmly believe with everything I am that He has a plan in EVERYTHING.  In Rachel's death - in this diagnosis and whatever will come as a result...

But let's be honest... this is really not good news.  It's not news you would want.  It's not news you would want your child to get.  And there isn't an easy solution and it's not going away on it's own. So be human with me for a minute and admit that this sucks.  I really need that.  Perhaps that sounds unchristian of me... well, tell me it sucks and then pray for me.  And if sucks is a word you aren't willing to use (I'm sorry if I've offended you), just admit to me it isn't something you would want to hear.

I'm so tired of listening to people try to coach me into more positive thinking.  I don't need that. I really do have that down.  I might not tomorrow, but so far, I've really let this news not just rest in God's hands, but actually cause me to live life more fully and to get as close as I can to the only One who can carry the full weight of this on His shoulders.  He taught me how to do that through Rachel.

Listen, it might make perfect sense to someone without a blood clotting disorder and brain aneurysm that 'people get these all the time and they can just operate on them'  or that 'the fluid in my spinal cord can just be removed' - But I didn't go in for an apt with the Neurologist because I had free time.  I went because I was having symptoms that are seriously affecting my quality of life.  Perhaps they are more to do with my autoimmune diseases, but they are real none the less.

And it might make you feel like you are encouraging me to tell me to not think about it or not worry about it. But it just doesn't encourage me.  It makes me feel more alone.  You know why?  Because I am an outward processor... meaning that share what's on my mind to work through it and not everything that comes out of my mouth is something I'm "obsessing" over - yet at least 4 times this week I have been told to not obsess over this when I have tried to talk to someone.  I NEED to be able to talk to people, but the more I do, the less I want to - and then I feel alone... it's a bad cycle.

So this is what I need... and I realize that if people couldn't follow what I asked of them where Rachel was concerned, most likely they won't listen now.  And I know, and I mean *honestly truly believe*, that people who do this do care and are only trying to help me... I know they don't want to make me feel worse... but what I need is for you to all just listen, pray, and admit that this sucks and you wouldn't want to receive this news.  And then instead of picking apart every word I say looking for where I am falling short in my faith that you might be able to fix... do this for me... look for GOD... look for JESUS.... look for the Holy Spirit...  because the one thing I know about what this trial will hold for me is a whole lot of Them.  And it would mean so much to me if it also held a whole lot of love from you.

I don't need to be fixed.  You can't do that.  I release you of the burden to try.   I don't want help figuring out what only God knows.  I just need my family and friends, near and far, to stop minimizing my reality and stay by me as I walk this path before me.  I know it's not out of God's sight, but yeah, I'm scared.  And I promise you, if you stop telling me why I don't need to worry, you will see that God's already got that covered... you will see that I actually *do* have plenty of good days and that I'm really making the most out of a very difficult thing... but you will also clearly see that it's not me doing that within my own ability to think 'right'... you will see that I know my God is bigger than the mountains creating this valley.

And if you can't do that for me... *I* will see that even when I am very alone, He will never leave my side.  Because unlike my journey with Rachel, I do not intend to beg people to be empathetic...I did that with her because in some ways I was protecting her and in other ways I was trying to teach people how to treat others in my shoes... I know, it seemed like it was about me and what I was 'demanding' of others, but it wasn't.

With this, I don't have to protect anyone and don't feel the need to teach anyone how to love someone with a brain aneurysm, a syrinx and autoimmune diseases.  All I would be doing is wasting hard-to-come-by energy that I could be using to enjoy my days with my family and real friends and I will NOT do that.

So, if you are able to let me be me... message me... call me... text me... come on over!  I'll put the coffee on and maybe even show you my best Running Man (for those of you who aren't cool, that's a dance - and one I am good at - or at least I used to be!)  OOH, no, we can do the electric slide... that's a fun one and easier on my knees! LOL.

I'm serious as a brain aneurysm when I say that I intend to make the most out of each day God gives me.  I will dance in this rain.  I will trust Him.  I will lean on Him.  And I will praise Him no matter what comes my way.  In just one week, I have already seen fruit in my life as a result of Him allowing me to walk another hard road.  I see His goodness, I feel His presence.  He is in this.

It's still very real and not likely something that I'm getting out of.  Next to a miraculous healing, which I invite you to pray for, I will face this for the rest of my life...or die a young death.  and when I think about that too long, I get sad.... what about when my kids have kids...I want to be a Nana... and it comes right back...   Bear with me as I ride this rollercoaster of emotions.

This sucks.