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.