New Year, New Me!

New Year, New Me!

New year, new me! We've heard that before. A new year of fresh starts and new beginnings. Resolutions meant to spark change in our lives, improve what we think needs to be "fixed", ways to make us better people, etc. This isn't my style! In some ways I'm more of a fly by the seat of my pants person. If I don't make resolutions, I won't be disappointed if things don't turn out as planned. 

What I have noticed is I'm becoming more of a "what if" type of person. What if my MG stops responding to treatment, what if I'm becoming a burden to my family, what if I'm not strong enough to keep my family together, what if I don't have the strength to go on. 2019 was a struggle because of the "What If's" and so many other things. My parents, and youngest sister passed on many years ago, my niece Theresa passed a little more than a year ago, my brother and sister in law moved cross country, and my other niece is making it her mission to challenge me every minute of the day.  The feeling of lose and loneliness has totally consumed my entire being! I've struggled to find joy in all the positive things that 2019 had to offer. 

Today's post is the first of what I hope to be many in 2020. My place to be semi-anonymous, hide behind the curtain that is the internet, yet still feel secure in sharing the ups and downs of my life. MYASTHENIA GRAVIS and DEPRESSION be damned! 

Life is a Struggle...

The last few weeks have been a struggle for me.

My youngest sister passed away at 39 years old.  Up until recently she lived with me, my other sister and their two daughters.  Sadly she died alone, in her small apartment away from family and friends.  As young children we shared many happy times.  But as we got older she became more distant.   Our relationship was strained, I never gave up hope we would repair the damage that tore our family apart.  Much to my regret it was not to be.

She left behind a beautiful, loving daughter.  She struggled with being a single parent.  My sister and I were there to help, but it's not always enough.  She survived kidney cancer, but struggled with substance abuse and mental health problems.  There were times I felt so lost and helpless, she wouldn't let me help her, no matter what I tried to do.  

My niece has been living with my sister and I for quite some time.  It broke my heart when I had to tell this sweet, loving angel that her mother passed away.  I know she is struggling too, she keeps telling me how mad she is that I ruined her most perfect day.  We decided to make a memory quilt together, we've started collecting fabric from some of her mom's clothes.  One of her shirts had a beautiful poem about butterflies on it, this will be the center block.  My niece is very excited about remembering her mom this way.  

Life is full of struggles and hardships.  Sometimes we overcome them, sometimes they get the best of us.  Right now my daily struggle with Myasthenia Gravis seems very small when I compare it to the struggle of an eight year old coping with the death of her mother...

My sister is resting in heaven now, there are no more struggles for her.

Rest in Peace Nickie

What Might Have Been...

Yesterday would have been my parents 54th wedding anniversary.  I often think about what might have been if they were both still living today.  I think about them at the oddest times. Sometimes it's something I've seen on television, a song I've heard on the radio, or the smell of something cooking or baking that sends a rush of memories my way.  They can be sad or happy but I embrace them just the same. 

When they were younger there were times when their relationship wasn't the best. But in time and with determination and hard work they grew into a very loving couple. They were friends and companions during sickness and health right to the very end.  

As I look back on my childhood, I know I was blessed with two of the best parents in the world. We were raised to be independent and respectful of ourselves and others. We were nurtured and loved.

Both my parents spent a large portion of their lives living with the daily burdens of chronic illness. It was never "why me" but what can I do to enjoy my life and family to the fullest.  So as I learn to adjust to a life with Myasthenia Gravis, I think of my parents daily struggles. I try not to live the "why me" life. I want to live the fullest life possible with Myasthenia Gravis coming along on my journey...

Happy Mother's Day !!

I have so many wonderful memories of my mom. She was a firm but fair person. She respected our desire to be individuals. We got along so well, we crocheted and crafted together. I learned care and compassion for others from her. Like so many mothers she did without so we always had what we needed. We never knew hunger, we never wanted for affection. I was truly blessed to have her for my mother and best friend!!

She always asked for the same thing from us each Mother's Day. That was to be good, sometimes that was easier said than done.  We felt we needed to give her more than being good. We gave her flowers and planted gardens, we drew pictures, wrote poems, and even placed each other in trash bags with giant bows on them to give ourselves as gifts! But one of her favorite things was this poem, it's kind of silly but it speaks volumes about mother's.

So this poem is for you Mom...

M is for the many things she gave me.. 

O is for the other things she gave me..

T is for the thousand's of things she gave me.. 

H is for the hundred's of things she gave me..

E is for everything she gave me..

R is for the rest of the things she gave me..

Put them all together they spell MOTHER, the one who gave the world to me!!

Happy Mother's Day in heaven!

 

     

Funeral for a Friend...

Haley held her first pet funeral Thursday. She purchased a few new fish friends to share the tank with Goldie, her Fall Carnival goldfish.  

She was lucky enough to win Goldie a little over two years ago. This goldfish has grown from a small feeder fish to a massive four inches long!! So out of the blue she decided Goldie needed company.  My sister took her to the pet store, Haley picked three different "tank buddies" for Goldie. She was so excited she couldn't wait to put them in the tank. My sister and I kept a close watch on them, we weren't sure if Goldie would decide to have a Sushi lunch, or enjoy the company of new friends. All seemed good until about two days in, this one little fish started to keep to itself, it wasn't really eating either.  We decided the little thing needed to be transferred to FICU (fish intensive care unit). She was rushed to FICU and kept under careful observation for another 24 hours. Sadly the little thing didn't make it.  She join our Lord in Heaven while Haley was at school. 

She knew there was a chance the little fish wasn't going to pull through. She had already started making funeral plans just in case.  Well needless to say it was pouring buckets the day of the service! We decided to postpone things until the next day.  It was cold and overcast, kind of like those funeral scenes you see in the movies.  She picked a spot under the bird bath in the round flower bed for the fishes final resting place. We donned our garden gloves and moved the patio block the bird bath rests on. Haley lovingly dug the grave, she wanted it to be "just right", she carefully placed the fish wrapped in it's paper towel shroud into the hole.  "Okay now bow your head" she said. She spoke from her heart and asked God to keep her fish safe, and thanked him for letting her have such a nice fish.  She also asked that he keep her other fish safe! We made the sign of the cross, and replaced the patio block.

Before you know it she was looking to dig the poor thing up to see if it had started to turn back into "natural resources" yet. I did everything I could not to laugh!  The poor thing was only in the ground five minutes. We had to explain the process doesn't happen that fast. I think she was a bit disappointed.

Rest in peace little fish, rest in peace!

Eight Years Ago Today....

It was eight years ago today I lost my dad.  He had been ill for many years, he battled cancer three different times.  He was strong, stubborn, and as feisty as the day is long!  I lost a strong arm to lean on, a shoulder to cry on, and I lost a friend and confidant. 

 He was a hard worker who always provided for us. I remember him working three jobs to make sure we always had what we needed. We had many fun times, he taught me to ride a bike, motorcycles and horses. He even put up with a bunch of screaming kids in a movie theater just so I could see "A Hard Days Night" and "HELP". He loved to blast the radio in the car, he knew all the words to all the songs we listened to!! 

 There were road trips to visit family and friends. He would take us by the bus load to zoos, parks, lakes, and museums. But my favorite was riding with him on his bus route to the Pulaski Day Parade in NYC. I loved the dancers, the Babka, and the Pierogies.  But what I loved most was spending father and daughter time together.

It's funny how something I see on TV or a song I here on the radio will make me think of him. I don't shed as many tears as I did. But now when I do they are tears of happiness, because I have so many wonderful things to remember...

I LOVE and MISS YOU, DAD