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!!!

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A turning point …

Holy moly. Yesterday I wrote about getting sick. Well, it was an understatement. As the day progressed I got MISERABLY SICK. I haven’t had cold and flu symptoms that severe in years. I spent most of the day laying on the couch. My family was so good to me. They all pitched in and helped. Last night I couldn’t believe how bad I felt. It was horrible and I was a little worried. I can usually function pretty well when I get a virus. Not this time! No way, no how. I went to sleep hoping and praying I’d feel better in the morning. I was pretty restless but then at about 1 a.m. my fever broke. Yikes! I haven’t had a fever break like that since I was a kid. I was a sweaty mess. As I laid there grossed out and drenched in sickness yuck I felt relieved. I knew that my icky soaked state meant something good. Yay!

Well, I hope you all have a day where you reach a turning point!!!

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)!!!

Awake again …

Meningitis makes you tired. Very. It’s not just during the active part of the virus either. At least not for me. The two times I have had it the fatigue lasted a very long time. The first time it took me about 8 months for my family to really notice a difference. That’s a long time. And I think that must be my standard. Where I felt the heaviest of my fatigue pass in about April this, 6 months after I was diagnosed, my mornings remained very difficult.

I have ALWAYS been a morning person and for most of my life I’ve needed less sleep than is typical. But not since October. And it has been a hard adjustment. Don’t get me wrong, I am very pleased, as are all my doctors, with my recovery. I’ve done exceedingly well. I am beyond grateful. But the struggle I’ve faced waking up has been a real life changer. I decided sometime in May to make peace with it. It wasn’t what I wanted but I had to accept that the old me “morning me” may never return. I needed to forget about the woman who bounced out of bed in the morning before most people in her timezone ever woke up, HA! I needed to be thankful for all the extra hours God had so generously given me in the past to enjoy my day. I needed to move on and embrace the me that was left after surviving another of life’s battles. And I did. 

The came June. I’m needing less sleep and rising with a familiar energy that seems like I’ve found a long lost friend. I’m enjoying the silence of a sleeping home again. I’m working out earlier. I’m getting more accomplished throughout my day. I can’t say I’m 100% myself, but I am pretty darn close. And I really couldn’t be happier.

Well, I hope you all have a day where you feel AWAKE again!!!

Proud … 

If I had to describe this past school year I would describe it as CHALLENGING. It started off as any other year had … and then craziness ensued. Getting sick is one of the most selfish things I could have ever done to my kids, my family and my friends. It derailed all of us.

Do I really believe it was my fault?

No. Of course not. But I still feel a tremendous sense of guilt especially when it comes to my kids. They needed me and there were days when I could hardly lift my head. My heart broke each time I couldn’t do something for them. I was angry when they had to struggle without me. They had to step it up and do so much on their own. Things that I normally would do for them or with them. They missed out on our talks. Moments that they used to deflate from their day or share their excitements. They handled stress and problems without me. Again. It broke me.

Today my son George graduates from high school. Goodness I love this kid of mine! He is gentle, kind, compassionate and brilliant. And throughout this past school year he grew into so much more. He matured naturally but also because he had to. He didn’t fight it. He never acted out. He wasn’t bitter. He just went with it. He helped so much. He took on so much. And he accomplished so much. As painful (and wonderful) as it is to admit this, my baby boy grew up in what seems like a few short months. He had to.

Today feels surreal. I want to cry because it’s over and cry from a sense of relief. This was a tough school year but George did it. He finished despite the curve balls life threw at us. And he somehow managed to thrive.

If we are lucky, as parents, sometimes we get a glimpse of reassurance that our kids are READY to take on the world. They get it. They can do this. Those moments when we see clearly that they are exactly what God meant them to be in this time and in this place. I gratefully had many of these moments this school year. They came as a result of time and nature but also out of pain and need. I don’t believe anything happens by chance so I cannot look back on this school year bitterly. All the events that unfolded have delivered us to this day. My baby boy’s graduation day. He got here precisely how he needed to and in a way that has left him better and more capable. What an amazing young man he has become. Indeed.

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

Grateful … 

Today I had another doctor appointment and it went great! As frustrated as I am with the bouts of fatigue I am still experiencing, my doctor told me that I am still doing WAY better than I think I am. It made me very happy to hear that. Sometimes when we are in the thick of things we don’t always see what others do. I know I sure don’t.

It’s been almost four months since I got sick. I have had the best medical care and have been treated with the most compassionate bedside manner throughout this whole ordeal. As disruptive and anxiety provoking as this has all been, I couldn’t be happier with my medical team. They really are my biggest cheerleaders.

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