2014 – Be Gone!

This year was already one I was looking forward to being over. Just three days into the year, I lost my other sister Rhonda and because I was scheduled for brain surgery just a week later, I never made it back home. There wasn’t an immediate service and my niece and mother insisted I go ahead with the surgery as planned.. So I did.

Little did I know on Christmas 2013 when I spent my 50th birthday back in my home town, that it would be the last time I’d see my sister Rhonda AND my mother.

As I was just hoping to make it through the catalog process in one piece and with intact brain function, my mother suddenly passed away. She had been ill for a few weeks and had been in the hospital twice, then seemed to be doing okay at a rehab facility. So, it was shocking on a Saturday morning when she passed. Her blood pressured dropped, she became very ill and in the blink of an eye my beautiful, vibrant mother was gone. She was 87.

Because her death occurred a week prior to catalog files having to go to the printer, Dave and i were able to leave Maine immediately and drove to NY for only a few days to make arrangements and scope out the situation at her apartment. Then, as plans for a memorial service were being finalized, I had to come back to Maine to get the files out. I suppose being so busy when I came back helped me kind of block it all out, but not really. We still had to go back for the memorial service and get her apartment cleaned out.

In the span of less than two years I have lost both of my sisters (one to a massive ruptured brain aneurysm) and now my mother. I’m now parentless and an only child. As my mother and I discussed many times since both of my sister’s deaths, it was becoming increasingly difficult to recall events and people with any certainty without corroboration from either one of my sisters. Mom and I relied on each other for that.

Planning my mother’s memorial service was difficult from a distance, but I think, no, I KNOW, we did her justice and I know she would have been smiling. We had a little bit of fun at the service and that’s what mom was all about: laughter and fun. I doubt my home town has ever seen the likes of my mom’s memorial service. The dixieland band was a smash hit and a special request directly from my mother.

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Sister Rhonda, niece Jenny, and my Mom last Christmas 2013.

It was wonderful to see old friends and the many relatives that came out for the service. It’s just a shame it was under such circumstances. And through all of this, all I could think of was how I shouldn’t be doing this without both of my sisters by my side. That thought added to my grief and only made me miss them more.

My home town in New York has changed so much since I left there in 2000 and not for the better. Granted, it wasn’t a bustling, thriving town, but I look at it now, and it only brings sadness for what was. The house I grew up in was sold around 2004 and my mom began the last chapter of her life in a wonderful apartment complex. The old house has changed dramatically. Some of the changes are good, some….not so much. There are so many homes I used to admire growing up that have fallen into disrepair and almost unrecognizable as livable homes…and yet, they are! Even the street I grew up has changed. It used to be a lovely tree-lined street on a long hill. The trees became diseased and they all had to be cut down. It doesn’t look like the same street.

I know time changes everything and not always for the better. Driving around my home town made me sad in many ways. My father passed away in 1994 from cancer. I discovered some wonderful items of his I had never seen or read while cleaning out my mom’s apartment. They are now my treasures.

So, as I boxed up memories from my mom’s apartment, and brought them home to Maine with me, I am not looking forward to the holidays. They were going to be difficult anway due to the loss of my sister Rhonda, but now they’ll be doubly strange, sad, empty and tragic. I have to, yet again, get used to holidays without not one, but two relatives and your mom is a big hole that no one can fill.

I know I’ll get through it. Not much choice. It is what it is and our holidays haven’t been the same since Dave’s niece Kim died in 2008, again, just a few days after another holiday. Gone, are the fun family holidays where we played games, shared laughs and good food. We’ve done okay, its just far more low key than most people’s holidays.

Do I miss spending a Christmas with family and friends, of course I do. Does it mean I still can’t enjoy the holidays and enjoy christmas carols and holiday movies? No. I love all of that and I try to remember and honor those I have lost in some fashion. Whether it’s by lighting a special candle in the window, hanging that specific, meaningly ornament on the tree, or simply taking time to recall what that person meant to me I need to allow myself to FEEL their loss, but also celebrate their life. Easier said than done on some days, but my life won’t ever be the same without my mom….but liffe DOES go on and that’s something I know she’d be preaching to me.

My niece Jenny and I will move on and we’ll be okay. We’ve both lost out mother’s this year. We were blessed to have them in our lives and are both better people as a result and we should be thankful for that. So many people don’t have loving mothers, sisters or grandmothers.

I’m tired, sad, and a little lonely, but my husband, as usual, has been my rock and my salvation. Yes, I’m ready for 2014 to SO be over, but I look forward to the year ahead and creating new memories with Dave. We’re only given one life (or perhaps multiple ones, as my mother believed) and we should enjoy it and LIVE! So, bring on 2015, please.

Stop and Visit

Each year of our KAT-Walk and Karo-5K I have been at the tent representing the Maine Brain Aneurysm Awareness committee, only leaving it to help other volunteers if needed or if I am participating in the walk itself. Before, during, and after the event, we try to provide people with support, information, and education about brain aneurysms.

SURVIVORS:
If you’re a survivor, like I am, we encourage you to make yourself known at the event by stopping by our tent to say “hello” and to sign in. Each year we’re very encouraged to meet new survivors as well as those who survived an aneurysm many years ago and choose our event to celebrate the fact they survived. We are also very aware some survivors don’t want to draw attention to themselves or make a ‘big deal” out of it, but it IS a big deal. Brain aneurysms kill too many and if you survived a rupture or were lucky enough to have your aneurysm treated before it ruptures, then you’re very worthy of attention at our event.

Please stop by, say “hello”, and sign in. Not only is it a wonderful feeling to know you’re not alone, but seeing, and getting to know another survivor can give newly diagnosed or treated survivors a tremendous amount of encouragement and comfort.

NEWLY DIAGNOSED
As our Brain Aneurysm Support group continues to draw new members, we’re also very aware there may be patients who have been newly diagnosed with a brain aneurysm. Hearing those words can be extremely frightening, especially if one has no idea what an aneurysm is. It’s only AFTER you’ve been diagnosed and seen at the doctor’s office that the questions seem to present themselves.

At our Brain Aneurysm Awareness tent we can provide you with informational booklets and brochures to help you on your journey. The types of brain aneurysms, different treatments, and what to expect after treatments are all part of the learning process when you begin your brain aneurysm journey.

Also at the tent you’ll meet other survivors who can help answer some of your non-medical questions and hopefully ease some of your fears.

THE WALL OF HONOR
Two years ago we started the Wall of Honor where families can place the name of a loved one who has been lost to an aneurysm or the name of a survivor.

If we are aware a survivor is registered for the walk or run, we try to have their name pre-printed and placed on the wall prior to the event, but each year we meet new survivors and we welcome you to visit the tent, write your name on one of the colorful sneaker stickers, and place your name on the board. You survived…you deserve a place of honor.

Wall of Honor

If you’ve been unfortunate to have lost a loved one or friend to a ruptured brain aneurysm, we also welcome and encourage you to remember them with a place on our wall. As with the survivors, if we know family members of one who was lost are registered for the walk or run, we try to honor their memory with a pre-printed sneaker sticker on the board, but if you’re new to the walk and want to honor your lost loved one, please stop by the tent, write their name on a sneaker sticker and proudly place it on the wall to honor their memory.

We try to keep it to one sneaker per survivor or loved one. If the name you’re looking for is already ON the board, we have seen other family members and friends taking pictures with the sneaker with their name on it. The Wall of Honor has become an emotional place for some and a proud place for others. A true brain aneurysm community develops on the day of the event and it gives one hope, comfort, and encouragement.

 

SUPPORT COMMUNITY
Next to our Brain Aneurysm Awareness tent we will have a tent set up for the Maine Brain Aneurysm Support Group.  For those who are unable to participate in the events, we welcome you to rest here and enjoy the festivities with other survivors and family members.

 

Clipping a Brain Aneurysm

Dave and I both admitted to each other on the drive to Portland that we were both scared last night. We were scared something would go wrong during surgery and I would not be the same afterwards. As a result I would regret making the decision. Well…as it turns out it was one of the best decisions I’ve ever made.

We also both admitted our fears were completely resolved when Dr. Ecker walked into to the pre-op prep room and explained the procedure again. He just oozes confidence. Hower, he mentioned the size and location of the incision and THAT was news. He told us in September the size of the location he opened the skull, but not the size of the skin incision. THAT was much larger and something Dave and I should have though about but never did.

They quickly put me under when I got into operating room, so I didn’t get much of a chance to see either doctor or explore this operating theatre. Previously I had only been in radiology.

The actual procedure only took about and hour and a half instead of the 4-5 hours we were warned about.

I woke up to Dave standing over me and I was already correcting him and Dr. Ecker told me it was a huge success and they he able to place the clip in a perfect spot. He also informed me that the top of the aneurysm was very thin walled…we may have dodged a bullet with this one.

I was taken to the lovely 6o8 neuro ward. The staff is great…the atmosphere is not. I got no sleep and then became very nauseous over night as well. Twas a long night.

My head was hurting pretty bad and my jaw was quite painful. I learned the next morning they had to cut my jaw muscle. Goody!

I also got the first look at my incision. Wow! It’s big and ugly with 53 stitches in the outer skin.

Clipping Day has Arrived!

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So, here I am at 5 a.m. ready to head down to the hospital for my brain aneurysm clipping today. I have my Care Bear (part of my “Get-Better-Bear” collection) who is wearing the angel necklace made and given to me by Kim.

I know there are two (Kim & Dori), now three (Rhonda), very special angels watching over me today. Wish me luck! And hopefully I’ll be posting more blog entries soon.