Bouncing back …

It’s official. After 20 months my sleep is FINALLY back to normal. I’m back to feeling that seven hours is like “sleeping in”. It’s wonderful! The need for so much sleep was honestly the hardest thing I’ve ever physically experienced. Waking up feeling so groggy was brutal! But now I feel rested again when I wake up and I have my energy back. Every once in a while I have a bout of fatigue that is a strong reminder of what my body has been through. But on the eve of turning 50 years old, I’m happy to say that I don’t feel much different than I did turning 40. Which strangely, was also a pivotal time of recovery from my first bout meningitis. I’ll be honest this is NOT how I want to celebrate turning a new decade ever again. TWO WAS ENOUGH. But I guess as long as I come around to my old self … um, my younger self (HA!) … how can I really complain?

Well, I hope you all have a day where you feel like you finally bounced back!!!

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I couldn’t have done it without them …

I want to say all of this today, since tomorrow I will just be too busy (and scattered). My heart is so vested in these words that I fear that if I start crying that I might not stop. So if I wrote them tomorrow that would be bad because Sunday is race day.

This will be the first full marathon I will run since I got sick. I’ll be fighting a lot of demons out there Sunday. Yes, I can run. I’ve proved that time and time again. BUT can I run THAT distance again? Do I still have what it takes? I honestly and fearfully don’t know.

But with the love, support, guidance and encouragement of my family, friends and doctors, I get to find out. It’s a miracle I have been given this chance again. And I do not take any of it for granted. It is because of these incredible souls that I am even willing to try.

It’s hard to put yourself out there like this. REAL hard. Even under the best and healthiest of circumstances it takes all you have. Being knocked down physically has only made this task more difficult and one of the biggest mental challenges I have ever faced. But I promised myself something years ago when I took a chance on running seriously again. If I do this, I won’t give it up. I wouldn’t do that to my heart again. Running matters to me. It is the part of me that propels me into a fearlessness that I have never know otherwise. And I don’t want to let it go. Not ever.

The point of all my emotional rambling (HA!) is to publicly thank each and every person who has walked through this season of life with me. The season that robbed me of so much, but gave me back even more than I could have ever imagined.

SO without further adieu … to those beautiful souls who have cheered me on, from those first steps that I took with my walker, to the start line this Sunday morning … I humbly and genuinely thank you for believing in me. I couldn’t have done all of this without all of you.

Well, I hope you all have a day where you feel eternally grateful!!!

Wide awake …

Before getting sick I was an early riser. No, I mean REALLY early. I woke up before my alarm usually about 5 am, easy peasy. And FULL of energy. That has NOT been the case for 16 months now. Don’t get me wrong, the nagging fatigue is gone. THANK GOD. But waking up is a whole different ballgame for me now. I wake up groggy. No more bouncing out of bed. You’d think I’d be used to it by now. NOPE. After decades of being one way, you don’t forget it … NOT EVER. Anyway, that being said, I’m INCREDIBLY thankful for the recovery I’ve had thus far and for all the neurological bullets I dodged. I just recently had a physical and my doctor told me again how lucky I was to have had no lingering issues from the encephalopathy. She also seemed very hopeful that I’m going to one day feel FULLY like myself again. Needless to say I left that appointment feeling GREAT!

When you are in the midst of recovery and healing you don’t always feel or see the progress you have made. I can now that so much time has passed but some things still really bother me. Like the difficulty I have waking up. It’s incredibly frustrating to say the least. But as soon as I get frustrated I remind myself of how far I have come and of what could have been (EEEEK). And now I have the words my doctor said to me. I’m going to CLING to her hopefulness. And let life unfold.

This morning I received a little gift. I woke up at 4 am. All on my own. And feeling like me again. This has happened a few times now. I have learned that these mornings don’t last. Tomorrow or the next day will likely be a different story. But that’s OK. I enjoy having a glimpse of the old me. No matter how fleeting these mornings may be I couldn’t be more grateful to still have them.

Well, I hope you all have a day where you are WIDE AWAKE!!!

2018 and Free …

2017 was a year filled with so much LIFE … and I couldn’t be more thankful.

I started 2017 in full recovery mode. My second round of meningitis at the end of 2016 was no less devastating than my first ten years earlier. I knew the healing process I had laid before me. At times that knowledge made it worse. Other times it made it better because I knew what to expect. I think in a way it made me more compassionate to myself. A rarity, indeed. But I wasn’t myself and I loathed it. I spent months in a fog. My days were filled with naps to combat the unrelenting fatigue and lists because my memory was so poor. My anxiety was at an all time high. I dealt with a significant amount of PTSD that came with an intense amount of anxiety. I was frightened I would have another recurrence. And that pain is NO JOKE. Understanding the severity of my encephalopathy was unnerving. No one can figure out how I was functioning “normally” with the amount of brain swelling I had. But I believe that the terrifying drug reactions I had after I got home really pushed me into a whole new level of fear. I literally thought I was dying. I don’t think I had ever been that scared in my life and sadly it has stuck with me. I can still get to that level of panic with even the smallest of triggers. Yes, healing is a long process. But I am happy to have to the opportunity to do it all again. This could have gone a different way for me and my precious family. And I refuse to be anything but grateful. Refuse.

In January 2017 I somehow convinced my doctors to let me train for a marathon. I truly believe that this was a huge part of regaining my strength again. As the days passed I got stronger and stronger. My memory improved and my fatigue got better with each passing day. If ever there was a time in my life to redefine myself, this was it. And it was incredibly liberating. Who could have ever imagined that the very illness that confined me gave me so much room to grow?!?! Definitely, not me!

When I look back on 2017 it is with mixed emotions. My illness and recovery made it hard. But life still happened. And that made it WONDERFUL. I was able to celebrate George’s high school graduation and watch him plan out his future. I was in awe of the growth that I saw in all of my children. Being a part of their daily lives is a gift from God that I will never take granted. NOT EVER. Summer was just straight up FUN. Having all four kids home for the entire summer was something I needed more than anything. Family heals folks, family heals!

Traveling was also a huge part of my 2017. We took lots of little trips and I was blessed with an amazing trip to Alaska. We celebrated birthdays and accomplishments. YAY, I was there and healthy enough to enjoy all of it! In 2017 I even managed to complete all 16 CEUs to keep my nutrition certification. Now THAT was a miracle having struggled with memory issues, HA! There was so much more too. The privilege of having these experiences and all the others often left me feeling overwhelmed. Like “WOW, thanks God! I’m here, alert and actually living this life!” Words can’t capture how I have felt time and time again. “Humbly blessed” comes to mind but it still falls gravely short.

Anyway, my point of writing about all of this is that regardless of the underlying need to heal and recover, life amazingly still engulfed me and took me with it. Despite the tough times I faced I felt an abundance of joy. I loved every difficult and fantastic moment of 2017 and everything in between. And surrendering to my new journey released me and allowed me to redefine who I was … again.

2017 was hard, but it was also beautiful. THAT sums up life in a nutshell. And as long as I have breath I will cherish every moment of it. If 2017 has taught me anything, it was that I do not have to remain tethered to unpleasant circumstances. That my mind, body and soul can still seek and find the freedom that hope gives us even in our darkest of hours.

So I guess that brings me to my 2018 New Year Mantra. Here goes …

Well, I hope you all have a year where you feel FREE!!!

What a difference a year makes …

Yesterday we attended the annual Down Syndrome Association of Orange County’s Breakfast with Santa. I love this event! It’s so much fun and I love seeing many of the families who were and still are a part of the group I facilitate. I love to see how much everyone has grown and adjusted to their lives since having a child with Down Syndrome. It’s one of the most beautiful things I get to experience over and over again in my life. I am so grateful to share in their lives. It’s incredible what time does to you, your journey and your life.

This morning a Facebook memory popped up from the breakfast last year. It was of Reese and I. And it really took me back.

It wasn’t even 6 weeks after I got sick. I remember looking at that picture after it had been taken and thinking how different I looked. The fatigue and illness had definitely taken its toll. I looked tired which makes sense since I was exhausted 24 hours a day back then. My face was swollen despite being the lowest weight I had been since the last time I had meningitis. My smile, although genuine, was different. My face wasn’t familiar to me. And it really bothered me. Seeing this picture honestly stopped me dead in my tracks. Whoa. Yesterday we took a ton of pictures. Maybe seeing the picture was so shocking for me because I had such recent pictures of myself in the same exact place I was last year. Whatever it was, I was able to confirm one thing. I’m a whole lot more me today than I was then … and I couldn’t be more thankful.

Well, I hope you all have a day where you know first hand what a difference a year makes!!!

A survivor (times 2) …

One year ago today I woke up early and headed for the gym. I did some speed-work and clocked my fastest 1/4 mile (7:13). Not to shabby! I went home and continued on with my typical morning routine. Then I headed to my dental cleaning. This would be that last time I would feel like myself for months.

Later that day I would find myself in an ER with symptoms I was all to familiar with. I was sick. And despite the fact that no one believed me I knew my body. I had meningitis. Again.

Today is the one year anniversary of my second round of meningitis. Still with so many questions left unanswered. That alone is a demon I must face every day. I have become obsessed with Facebook memories. Trying to find some clue as to how I got so sick so fast. Again. There is nothing there. Nothing. I finished a week of 100,000 logged on my Fitbit. I mention twitchy legs, crazy fast speed-work and a rest weekend. It was to be a well deserved break from my training that was going better than I ever could have hoped for. I was strong and healthy. Race ready. There was nothing in those memories that would indicate that I would become so sick in just mere hours. How can anyone’s brain be that swollen and they not show any signs or symptoms?!?! It’s baffling. Utterly.

There are days that I still feel like a ticking time-tomb. I’m not sure if that feeling will ever go away. The memory of this experience and the fall-out afterward will always be unsettling. The “unknowns” are worrisome at best. But I refuse to cave into fear and let it immobilize me. Life is too precious for that. I thought battling meningitis once was bad enough. Twice, just seems insulting. But I truly believe that life gives us lessons for reasons. Reasons we might not ever understand. And THAT gives me my peace. Trust me, I can easily focus on all the things that this illness has robbed me of. How disruptive it was to, not just my life, but my family’s and friends’ lives as well. I can resent the fact that I still don’t feel like myself and that I fear it happening all over again. I can focus on the anger I feel when I see my precious kids worrying about my smallest of ailments. Children shouldn’t have to worry like that! OH, if meningitis was a person I would have punched it in the throat long ago!

Anyway, as I see it I have two options. I can choose the road paved with anxiety, fear and bitterness … OR … I can be thankful that I even had a road in the first place.

Let’s face it, life is not always easy. Crap happens through no fault of our own. But life can still be beautiful. I’d be lying if I said this illness hasn’t changed me. It has. I am not the same woman who woke up on this day a year ago. I am, for better or worse, the Jennifer I was supposed to be on this day and in this moment. Meningitis helped shaped me. And I’m OK with that. I am an ever-evolving woman who accepts that change and defeat and pain are an acceptable way to form me into the woman I am meant to be. Meningitis was a pit stop. OK fine, TWO. But it wasn’t my final destination. God and the universe clearly are not done with me yet and that’s good … because I still have dreams. And as long as I have breath, scared or not, I will chase them.

Well, I hope you all have a day where you are a survivor (times 2)!!!

Beginning to figure it all out …

Today I got asked, by someone I had just met, what I did all day now that my kids were in school. They didn't ask in a snarky way, so I wasn't offended at all. What ended up "weird-ing" me out was not their question. It was my answer. I actually had to answer, "I don't know." Then I explained.

Today was the first day that I have had "nothing" do to since all my kids had either moved out or were in school all day. The first time in almost two decades. Last year was actually the first year it had happened, but I had taken a temporary part time job the day my kids started school and then got sick with meningitis a few weeks later. I then spent the next 6 months doing the bulk of my recovering. Once April came Sid moved home and George's graduation (and all that went with it) came shortly thereafter. Life was on full speed and our house was full of people again and it stayed that way until just last week. I loved it! But today, when they asked me that, it all hit me like a ton of bricks.

WHAT WILL I DO ALL DAY LONG?!?!

I guess time will tell.

Well, I hope you all have a day where you begin to figure it out!!!