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!!!

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Magical experiences …

Last night was perfect. We went to see Aladdin the Musical at the Pantages Theatre in Hollywood. I absolutely love this theater. It’s old school Hollywood at it’s finest. And I honestly, I don’t think they have a bad seat in the house. I have sat all over that theater and have never been disappointed in my view or the sound. The venue is small enough to where you can’t help but feel engulfed in the performance. It is WONDERFUL. And exactly what I wanted for Reese’s first real theatre experience.

The performance itself was PHENOMENAL. The actors, the costumes, the sets … WOW! Libs is my theatre kid and she absolutely LOVED it. I was in awe, per my usual at the theatre. I am always caught up in the sights and sounds unfolding before me. Theatre makes me emotional to say the least. Having Reese beside me for the first time made it that much more special.

I mentioned yesterday that Down Syndrome has taught us that things don’t have to happen on a typical timeline. I wanted to introduce Reese to theatre for several years now, but I knew she wasn’t ready. I refused to push it too. Theatre is too special for that. I wanted her to be mature enough to REALLY enjoy it. And, fingers crossed, to fall in love with it like the rest of her KOOKY family. We might reach milestones and have achievements on a different timeline than others, but trust me when I say that we celebrate them a whole lot harder. Reese’s time is what we live by around here and I will tell you that it has made for some very special life experiences. And last night was no exception. At times I found myself watching Reese and watching the stage out of the corner of my eye. Seeing her reactions will go down as one of my favorite mom moments EVER. All of it … PRECIOUS! Her eyes lit up! Other than the few “scary” parts her eyes were glued to that stage. Yes folks, I have another theatre lover. And I couldn’t be happier!

Well, I hope you all have a day filled with magical experiences!!!

A whole new world …

Today we are surprising Reese by taking her to see Aladdin the musical! She has never seen a Broadway show before. She is going to LOVE IT. The best part for me is going to be watching my sweet little girl discover what true theatre is really like. I can’t wait to see her face light up and to see wonder in her eyes as she becomes part of the theatrical experience. I got to do this with her older siblings and I know that her turn will be no less magical. It might even be MORE. I started taking my other kids when they were around age four. Reese is now eight. Developmentally she is about 4-5 years old. Down Syndrome has taught us that things don’t always happen on a typical timeline. It’s honestly freeing. To allow growth in such a natural unforced way is beautiful and I get to live that every day. I am blessed. MEGA BLESSED. It’s days like this that my heart wants to burst with MOM happiness. It is simply THE BEST!

Well, I hope you all have a day where you discover A WHOLE NEW WORLD!!!

24 Groundhog Days later and love still knows no bounds …

Today is Groundhog Day. It is also the day that my mother died. For 24 years this day has not passed without tears and sadness. Sure, some years are better than others, but generally it’s just awful. I usually spend most of the day trying to avoid contact with the outside world. I try to limit my interactions to the people who know me the best. Those brave souls who have seen me at my worst and loved me anyway. Because for the most part, on Groundhog Day, I’m a wreck.

Twenty-four years later I STILL find it difficult to maneuver through this day. I mention this because ongoing grief is not something people talk about much. The initial grief that comes from loss we all understand even if someone has never felt it. But ongoing grief is a different beast. It shocks me how it still consumes me. It can be as painful as the day my mother died. And I think I know why.

When I feel genuine love for someone and they feel it for me, it’s like this energy has been created. It’s one of the most beautiful and powerful feelings I have ever felt. Being a mother myself and now having children venturing off to college, I find that their absence, although not permanent (thank you Jesus), still leaves an energy behind. It’s a connectedness that pulls on my heart and makes me want them home with me. And it’s also that connectedness that fuels their desire to return home. The love I have experienced both as a mother and as a daughter does not understand time, distance, physics, or logic. It is almost a stronger KNOWING than faith. This love just … IS. It is a constant. And although it’s not always at the forefront of my mind, it is and (I believe) always will be present. And after 24 years of grieving I can assure you that the energy that came from the love I felt from and for my mother is still as strong as it was when I could reach out and touch her. It has never gone away. I still want her to come home. I still want to hug her and spend time with her. Put simply, I STILL want my mommy. And I’m thankful. Although these ties to her tend to cause me incredible pain on days like this, it is a reminder of the gift that God had so graciously given me. Genuine love. And I will ALWAYS be thankful for that.

Well, I hope you all have a day where love knows no bounds!!!

A blubbering mess …

Perhaps scheduling Reese’s appointments to see her specialists the two days before the 24th anniversary of my mother’s passing was a bad idea. Don’t get me wrong, they went great! Reese picked out some adorable purple glasses with hearts on the side that should correct her vision. YAY! And her cardiologist couldn’t have given me better news. PRAISE GOD! I am a great case manager and I had worked long enough in the medical field to know my way around most specialties. So I usually can put up a pretty good strong front through most of these appointments. I am Super Social Worker Mom, with nerves of steel, wisdom beyond my years and complete level-headedness. But not these past few days. Good grief!

Well, I hope you all have a day where you aren’t a blubbering mess!!!

Marianne (MY ROCK) …

Being an MSW and a parent for over 20 years has not given me an immunity from worry. Heck, sometimes I think they may have made it worse, HA! Trust me when I say that I have seen some ugly horrible situations. So when it comes to my precious babies (yes, I know two of them are adults now) I can’t shake the worry that comes when they are sick, injured or recovering from surgery. I know I should be a pro at this by now. But I’m not. And times like this are when it comes in handy to have an incredible friend. My best friend from high school is one heck of a woman. She is ALWAYS there for me. She is the level headed thinker when I am the wreck. She might be just as worried as I am but she pulls together a strength for me that is grounding. Her love and support has carried me through many times when I have felt scared and alone. And I couldn’t be more thankful for her.

Well, I hope you all have a day where you have someone to rely on!!!

Unfiltered …

My favorite color is pink. It always has been, ever since I was a little girl. If something comes in pink, I choose that one. I’ve owned a pink bowling ball, pink golf clubs and pink pepper spray. If you can think it, I’ve probably owned it in pink. HA!

Early this morning I stumbled across some pink landscape photographs. I was instantly drawn to the color. Then I had to “google”. Of course none of the pictures were real. Don’t worry, I knew this going into my google search. PHEW. I was just curious about what the pictures looked like in their original forms. They were stunning! And this really got me thinking. Probably too deeply, about life.

I try to live an honest life. I will tell you how IT is. If I feel a certain way, you will know. If I like something, you will know. If I don’t, you will know. If I’m sad or frustrated, you will know. And when I’m happy and overjoyed, you will know. I’m simple like that. And I’m pretty sure I’ve been this way my whole life. The effort to hide or fake my life never appealed to me. It also sounded exhausting. Like SUPER exhausting! This blog and the one I originally started on Facebook came out of all that. Being real. And still being happy and hopeful in that REALNESS no matter how yucky it may get. Maybe being “matter-of-fact” and “head in the clouds” isn’t a combination that works for others. But it’s worked for me this long, so I guess I’ll stick with it … and secretly keep hoping that someone discovers a real pink forest.

Well, I hope you all have a day where you live unfiltered!!!