Time builds our Tapestry

5 days…

5 days. 14 years as a PICU nurse. Thursday to Tuesday. I work in the ED now, I spent 14 years as a PICU nurse.

We don’t understand, but we remember.

 

This past weekend was our 6th Annual Softball Tournament and it was sunny and full and hot and competitive. I love all of the returning teams, meeting them and hearing why they always come back. Getting to talk to little ones who came to watch their moms and dads play- and tell them what the game really meant, why these people were all playing. I never go into the details about Madeline, just that she was an angel and now we have a job to create ‘Best Day Evers’ for kiddos who are sick. It is the best kind of day for me. I always take note of the energy it brings into my soul, definitely not my body, that part is so tired after. I tend to keep myself pretty safe at those events, I never enter the hard parts there… just relish in the light parts.

Every year of our tournament there is a Team Albany Medical Center, they are always on one of the farthest fields. I love that they come. I am reassured every time the Nurses, Doctors, Social Workers, Child Life Specialists and Clergy come to events or take time to meet- reassured that we are doing our job, carrying on Madeline’s purpose.

Madeline’s Purpose: It is more than just a way to get through the grief and loss. It is more than a way to take care of other families with this story- it is way more. It is Madeline’s work… this is the job she left for us. I believe this. I see this. I feel this. I KNOW THIS… it is a fact.

One of the nurses from Team Albany Med came up to talk in the pavilion, and I entered that conversation with the emotional distance I maintain for these events. She said “5 Days… 14 years as a PICU nurse… Thursday to Tuesday”. I was pretty blown away. She told me she finished her Nurse Practitioner and is now in the Emergency Department. I thanked her for coming, for caring and for carrying Madeline. She said “5 days, 14 years in the PICU- we do not understand, but we remember”. I struggled to stay composed. She hugged me and headed back to the field to enjoy the rest of the sunny Best Day Ever- that is what we do. We speak it, we feel it, we cry, we hug and then we keep living a good life… we carry them along.

I don’t foresee myself forgetting that feeling and that moment ever. I sat there… asking myself if I knew that it was a Thursday to Tuesday… those days are less like days and more like a compilation of moments. I can tell you the order of moments, the emotion… I can remember them so clearly when I let my brain reenter that time. I don’t do it often… but I don’t know if I have ever just thought of the days. Thursday to Tuesday…. In all of her years of shifts how many kids came into her care, how many entered her world on a Thursday…

It is a reminder that God was in charge in those moments. I will never even know the scope of the work Madeline’s life does… how many life tapestries she is woven into? I am sure I can not understand the grandiose plans He had for her short life and long legacy. Madeline’s work is still getting done…

I am grateful and humbled that those Madeline influenced are brave enough to tell me, I can’t imagine not knowing. I remember her PICU nurse reminded me of my cousin Sarah, then a PICU nurse in Syracuse, she sounded just like Sarah. It was so comforting. I later learned that Madeline was one of her first patients and changed her forever plan- her nursing career. I always look back and see the stars aligned, the world working hard to do their jobs… not knowing the time left, not knowing what their actions would create in the future. Some might say it is just a coincidence, however I know that there are no such things in this life. All threads in a divine and beautiful tapestry that are being woven as we move through life… as we fail, succeed, laugh, cry, share, hide, build, break and live. At any given moment that tapestry might be so ugly, filled with dark colors and no clear pattern- but in time that dark spot is surrounded by stunning golds and bright blues, and the beauty of it all can be seen… the more time goes by the more complex and layered the tapestry becomes… with rich reds and dark greys- some yellow sunshine woven in there. There is fear and love and acceptance, anger and forgiveness, weakness and power and judgement and failures and pride and joy… and so much more in our life tapestry. I love that part… I wonder what mine will look like at the end of my time here or maybe it is still being woven when I am no longer hanging out on Earth. All will be revealed…

We don’t understand, but we remember. 5 Days. Thursday to Tuesday…

Understanding is not the lesson- but remembering is….

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The Struggle is REAL…

struggle

Ever wake up and know it was going to be a crap day? One of those days that everything, almost anything that could go wrong, goes wrong. It might be a Murphy’s Law kind of day. These are the days that most people label FML days…

I did. I don’t often, but you better believe it was one of those days.

Let me tell you about that day…

We had a big and exciting event planned a couple weeks ago, but Mother Nature had a different idea, as she often does. A day that was supposed to celebrate and highlight a local community project, a day of fun in the sun, became stormy and rainy (think Forrest Gump’s descriptions of rain in Vietnam kind of rain). The event was moved to the next week, and then the task of sharing and updating press releases and all that jazz came into the picture. It was definitely a downer for the morning. I finished that part, and told the girls the ‘good’ news, that we had a stay home day and there was no need to get out of bed. I then ran to the cable company to switch out the modem, and of course came home with new shiny equipment. To many this gives them excitement, for me it gives me anxiety. I like when technology works, I like when I can stay out of it and not think about it. I came home with the new goods, the girls were excited, but I was anxious. I followed the directions and got it all set up, then called. The cable in my house was old and not used for a long time, so that needed a service call. I was trying to not be angry that I would have to be around for a service appointment. I was also trying to not be a pain in the butt to the nice lady on the phone. She connected me to the internet guy and I waited a few on hold. I wandered into the garage to grab something and noticed that the freezer door was open a crack… ugh. I opened it up and all the food was starting to defrost. I was talking to the internet guy and unloading the freezer… I am sure I sounded annoyed with him but I was honestly annoyed with myself. I was overwhelmed. I kept my shit together though. I got off the phone with him, and set forth on the new mission of cleaning my freezer… I struggled.

I had to throw a lot of food away… I was more than annoyed I was sad. I worked to fill that freezer and one clumsy move and I lost it all. I guess I didn’t lose it all, it just felt like it. I had to quickly meal plan healthy dinners for the fall that worked with what I had on hand. I got the crockpot going for fajita soup, eggs and spices for turkey meatballs, 2 different stir fries to use lots of veggies and taco meat precooked for meals. It was a lot of work in my tiny kitchen- that I definitely did not plan to do. I reminded myself of that fact that often times nothing I plan to do goes how it should. I worked really hard to not get mad, to just do it and get it done. I remember growing up the days the freezer was left open were not good days, they were stressful days and my mom was not happy. I get it- the waste and the work. I tried to not react with all the stress I was feeling… I struggled.

I went in the garage at one point and heard a high pitch sound, like a bottle of soda was leaking air. I looked around and thought ‘nothing else better break today’. I went inside and cooked more. Lucy took the dog out and came running back inside ‘MOM a chickmunk in the garage, a chickmunk!!!! He was standing and hissing at us!!!!’… Now Sparky had to go out front for a while and we had to go buy a trap. I left the back door open, in hopes of the chipmunk (or in Lucy words chickmunk) could leave on his own- but I was scared he would stay… and destroy my garage. After all the cooking and cleaning we headed to Walmart- where they do not sell rat traps. We headed home in the rain, and I had just decided to try to let it all go. I tried. The girls fought… and poked and poked and picked at one another. I struggled.

The night did not end well, I should know better, when my emotions run high it offsets our balance. It is like the girls just steal and absorb my stress and anxiety. There were fights and mean words, and high energy- all when all I really wanted was calm and quiet movie time. We tried, we failed… we went to bed.

In that terrible, horrible, no good day… I can see little bits of good, now. I have a clean freezer full of meals ready for fall. I cleaned my freezer in the kitchen out to fit more. We now have faster internet (I just wanted it to work) and we have cable- the bill is less than before too. We got ahead on the living room project of painting and prepping. We didn’t get to bed until really late- or at least I didn’t, and I slept in so well. It all looked better after we went to bed…

I tried, I struggled… I went to bed. In the light of today it all looks better. Often times even the most terrible, horrible, no good, very bad day is better when we remember that ‘Mom says some days are like that’ and we chose to go to bed and start over. Accept and acknowledge the struggle- and let it go. Look at any positive- even if the only good thing is that it isn’t yesterday anymore…

Don’t be sad…

From the moment we are born we are approaching death. Today I am one day closer to dying than I was yesterday. We all are. We will all die, it is a truth, a fast. The details around that fact can vary greatly… we could have lots of time or little. It is an unknown, but sometimes it is not. Sometimes death is not so far away… sometimes it is so very tangible.

“I didn’t think I would make it to see ‘The Last Jedi’”

“Did you want to be a pilot when you grew up? I want to be a baker, but I won’t get to grow up.”

“Don’t be sad.”

“Do you see how she lost her arm? I used to be able to walk, don’t you ever take those things for granted.” (While watching Soul Surfer)

Death is inevitable, but each of these words were spoken by a young person coming to terms with dying. These young people had to come to terms with their mortality and time here on this Earth. The lessons I have learned from them are so important. I carry these young people with me, and I think of them so often.

Sometimes it is so hard to stay open and meeting ones that may ultimately join my lovely… but it is such a gift to be a part of a person’s life and story. It is such a gift to be a small support, a smile, a friend… to get to spoil or laugh with a person so aware of their mortality. Every loss is hard, every gain is a gift.

These past few weeks have been really hard, for me and for many moms and dads and beyond.

I was at a community event yesterday to celebrate a project that is busy creating best days ever for families… a Splash Pad for the community to enjoy. Watching kiddos run through streams of water and laugh… watching a whole school of Special Needs kids play in the bubble machine I brought. I felt tired but good, tired but happy. My friend asked if I had seen the update on Markel, one of the most amazing Best Day Ever kids I have gotten to spoil. I immediately knew that Madeline had a new friend, that she was there for Markel. Markel had passed away the night before…

While I was busy working and worrying about an event Markel was busy heading off to heaven. Her mom was busy entering this new world of grief and missing… Markel’s request- Don’t be sad.

Don’t be sad. That is easier said than done. I am trying, as are so many. I am struggling. I feel the loss lately… I see the light and love and gifts but I feel the loss. I am pushing that smile… I am not at all putting the hard away- I am just trying to follow Markel’s request and ‘Don’t be sad.’

I feel like so many parents are joining this club, the club no one ever imagines themselves in. We don’t brag about this one- it isn’t the Honor Society or the Key Club or Choir… it is the Grief Club. It is the Missing Club. I would be okay if this club closed up shop.

In the last several weeks several amazing souls left us for their next place… Cancer stole them. Cancer took their last laughs, their last perfect heartbeats and finally their last breath. These young people had MANY YEARS that were stolen from their future, and now they aren’t here like they should be. We are left to miss them and bring them along…

Tonight, I am thinking of them… I am remembering the gift they are to me, to so many. Charlie, Zoey, Lola, Markel… Kalina, Ana, Devon, Myles… Tyler, Ben, Catie, Nick, Will.

The thing is we don’t get to pick… we don’t get to pick the good stuff, the hard stuff, the crap, the amazing, the pain, the joy… we don’t get to pick. Our lives are our stories, and our stories are never easy… they are intricate, they are deep and lovely and difficult. No one, who is lucky enough to get to 70 years old, says ‘Damn that was easy’. Life is hard. Missing is so hard.

As hard as it is to miss, I can never imagine my life without these people, these current angels. Imagine if I never had my 5-year-old remind me of the simple importance of a Best Day Ever. What if the girls and I never ate chicken parm and hung out with Kalina, what if she never told us ‘Do you see how she lost her arm? I used to be able to walk, don’t you ever take those things for granted’? What if my life never overlapped with Charlie- and he never go to see The Last Jedi?   What if Lola never took that helicopter ride, what if I never got to see her change the world? What if…

Don’t be sad.

That is a hard one. You see, we are left here to miss the most amazing people. I want to honor the request to not be sad… I am struggling though. You see… I miss her soul and her energy. I already miss her dimples and her positivity. I know what her mom is feeling… how can I be okay knowing the pain her family is going through? I know the missing that is coming… I know the pain.

So… here I go reminding myself to not be sad. I am failing right now. I may fail tomorrow… I may fail next week. Who knows… but I promise you Markel that I will do the best I can. I will carry you along- forever. I won’t let you down… never.

Don’t be sad… focus energy on change, awareness, love of life and faith. Tell others about Markel and her journey. Talk about Childhood Cancer. Talk about life, and freakin’ live it.

Do Something…

 

https://sanvidgefuneralhome.com/tribute/details/573/Markel-Elizabeth-Carras/obituary.html