Naps and Noise.

What a cold week off, not that most of you are surprised by this statement… it has been cold EVERYWHERE (minus Antigua, should have gone there).  We spent the week just kind of moving and not moving… huddled under a heated blanket, wandering Target and hanging out at home.  I would have thought we would get more done, but those stupid electric blankets make being productive really freakin’ hard.  So vacation is done now… I am ready for it and sad to have to set an alarm.  I sure hope tomorrow morning my skin doesn’t hurt when I go to start my car… my face misses the warm.

Our week was pretty much two things: naps and noise.  We woke up lateish and got ready slow… then burrowed in and watched Ellen (cheers to the lil girl who knew all the presidents), we talked about Justin Beiber and how he might have changed, we had movie night ALOT.  In those naps maybe I got some extra energy for the weeks to come… maybe the sleep will last.  Maybe, my other theory is true, my body feels me slow down or stop moving and says “Quick put her to sleep before she gets busy again”… probably that.  So that part of me won this week.

I think some of those naps were compensating for the high energy of life and getting through all of this junk.  I think it makes your whole self tired to think about divorce, anger, hurting, mad, sad and betrayal.  I think it costs a lot even if it looks like it doesn’t.  My brain is always on overdrive… though it doesn’t focus so much on timelines and past betrayal details… it thinks ahead to the complicated life my girls will have.  I try to sort some of the complicated, to no avail.  It is just a one day at a time thing…. anything beyond one day at a time is the wrong way to get through this.  One day at a time, I need that reminder from my Soul friend ALL.OF.THE.TIME.

The noise this week was rough, probably it is the source of a lot of the tired too.  I heard lots of chatter about girlfriends, divorce and babies.  That chatter BAMMED me… it’s BAM is smaller than before.  It was however very chatter-full in our house with little wonders, questions and innocent statements about their new family.  What looks so fine to them hurts me inside.  I would say in some of the chatter, just a few texts passed between him and I… and one phone call I realized how it felt to be treated small.  I think I forgot this part… but one day at a time we get through and chug on and grow.  I look forward to when the chatter hurts less… but for now this is reality, I must just feel it all and get myself to a better and higher spot than this.  So out of the mouths of babes, as they say, come innocence and wonder… it is my job to respect their new and growing family.  So this noise was enough to look forward to a day off tomorrow (well actually I have a lot of Maddie’s Mark work but… I will have some alone).  I will be chatter-free for several hours and maybe my brain will sort out a little and I will make through another day… then another and another and another… life tends to move like that…

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Everything does NOT happen for a Reason.

madeline

Thankful always for those who help me share my voice… what a gift to get to write down my thoughts and wonders and lessons and share them.  Thank you Everyday Windshield.

Help me share and send some love to EW :)… thank you Polka Dot Tree Climbers…

http://everydaywindshield.com/everything-does-not-happen-for-a-reason-by-erin-musto/

Year THREE: Surrounded and Free.

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Three freakin’ years already have passed. Like I always say it feels like hundreds of years or only days. Time doesn’t work the same anymore. Time definitely doesn’t work the same in my brain, I forget many things and my brain is overall different than it was before Madeline’s death.

Grief is a really complicated journey. I can look back at these three years and I feel different. The feelings are changed. In the beginning I would often sit in my chair, when Matthew got home from work, I wouldn’t be able to stand up. It was such a physical heavy that it changed my breathing patterns and felt like my heart was being squashed. I had a lot of anxiety in situations I was normally comfortable with. I forgot important things, like packing food for the girls or bringing clothes to sleepover. My brain jumbled bits of life together. I had few memories for a long time, beyond the night Madeline passed away at Albany Med. I could only recall her skin after she was gone… my ears couldn’t remember her heartbeat before the end. I could only hear the slower heartbeat, that felt like her body was stopping… the heartbeat that felt like her heart wasn’t sending blood everywhere. I would be moving and walking and folding laundry- not really thinking about Madeline not being here – and then it would be 3pm and the bus would drive by. Afternoons were and still are the hardest time for me. Fast forward to now… I am very often ok. I am sad, I am heavy… but it is changed. I don’t get the wind knocked out of me so often. I don’t stand paralyzed when the bus comes in the afternoon… I don’t sit, often, in the chair and not be able to stand because it feels like a big man sat on me and will not let me stand. The grief is less of that type of physical. When I am sad though, I am sick. My stomach is off, my head hurts… I feel drained. I guess the grief is still very physical and probably will be forever. I feel like I have a stomach bug, sometimes I convince myself I do. When I feel this my hands are heavy and they don’t move like I think they should… but this is usually a small fraction of life now.

Knowing that I have felt these feelings and knowing that I can share them is freeing. Writing them down help me know the changes and differences in this journey. This grief work is hard work… it is right up there with parenting. I think it is freeing too, to talk to other moms and dads about this. Today I was driving home and realized that I had about eight conversations this week with people who are entering this journey- one whos son is dying, other families who have recently lost their child or even parent. This grief work is important to share, it is freeing. To know that in this journey, that can feel so solitary, we are not alone. We all here for each other, either in one conversation or prayer – or in many years of friendship. We are supposed to surround ourselves with ‘carriers’ in grief. We are not supposed to travel this grief journey alone, this I know. I know because every time I share, talk or support another mother, daughter, father or child… I feel lighter and they do too. Every time I talk to my amazing soul friend who has lost her bubba… we connect even more and just get lighter. Don’t misunderstand- we.still.feel.all.of.the.feelings… but we feel them and connect and let go together. Grief is not a solitary sport.

Surrounded. God has kept my girls and I carried and supported. We are surrounded, even when we chose to be just us and go on adventures. We are surrounded. We are carried. When life throws curveball, He sends in a soldier or the whole dang troop to help… whether it is in prayer, distractions, love, hugs or needs. We are surrounded by amazing people who care for us and love us anyway. They love our crazy hectic schedules, my fear of commitment, my forgetful brain and lack of ability to cook a meal anymore. This weekend, Madeline’s Three Year Angelversary, was a snapshot of that. Sometime in the middle of the week I remembered/committed to send an email to do our traditional balloons at Madeline’s Spot… and it all came together perfectly. Those amazing people have been with us through thick and thin (life and my waistline)… they donned their snow pants and warm boots, put their cars in 4WD and headed up to meet at her spot and send love. Madeline knows they love her. This, though, is for all of us to see that she is still so loved. Piles of kiddos eat donuts and drink hot cocoa and play… then we send Madeline balloons and go our separate ways. Yesterday we even got a playdate and dinner with friends to keep us very busy. Imagine if your lovely angel were celebrated in two places… Madeline loved home. She LOVED the lake and her grandparent’s houses. So while we were loving her up down in Albany, they were sending her balloons and connecting back home, which is an ultra-special blessing in my heart. Then today, on her three year angelversary, we got to celebrate a set of twins who Madeline definitely kissed before they got to come here. We got to celebrate a year of life and growing and changing… in the cutest and happiest of ways. While everyone was together for that we met for balloons (at a VERY cold park) and then went out for a big crazy family dinner. It was exactly how today was supposed to happen. Come to think of it, most days are exactly how they are supposed to happen.

Today. I talked to and met mothers who are entering this journey. I got to hug one and meet her lovely. It was hard, it brought back pieces of the hospital and Madeline. I can take hard… and we each needed to connect. He is fighter, a strong and solid fighter. I needed to meet him and let his mama know I am here for the next part… for the grief journey… to carry and surround.

I know that sharing this and connecting will make each of feel more free, someday. I know that they will, most likely, experience some of the same feelings and hurt as I have. I know that they will sit in a chair one day soon and not be able to stand… I also know that one day they will stand quicker, one day the guy who sits on them and the weight on their heart won’t press so hard. I know that one day it will look different-ish, and feel different-ish. For that we are connected, we are surrounded and hopefully that will help us be more free… I know I feel lighter, I feel more free and I feel surrounded by love and strength and really awesome energy.

So three years down… I can’t believe we are here in this spot. I spend a lot of time thinking that I can not believe we are in this VERY spot though, a reminder that it’s a good thing I am not in charge of things. He got us to this VERY spot and He will get us to the next spot… and the million’s of spot beyond. Three years of life sans a physical Madeline… and we are here, always here, always getting somewhere… so on to the next spot. Thank you for the blessings and building of each of us… thank you for the love and guidance and sending in the troops… we always know You are behind it all. Take care of my Musto-butt… let her feel my kiss and nibble. Thank you always Big Guy.

 

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1000 plus days and a Groundhog…

So the brain has settled down some… and I am thinking about the coming days. Anniversaries always make us do that, good or bad. Today is Groundhog Day… and it really feels that way inside me. It repeats as the last day ever that I did not know my daughter would die, before she was a high schooler, a mom, an aunt… jeesh before she lost her first tooth. These days are a blur to me to think back and remember. I have to really focus and think of the order of time back then, three years ago. Sometimes I want to and sometimes I don’t want to delve into those thoughts and memories.

I think about the sitting and the fear in the hospital, the team that Matt and I were… and how I will share none of this with him again. We won’t talk about her, remember her together… we are no longer that. We are just people who parent our girls that are still here, not people who talk about the one who isn’t. I think back to those days and the solid person he was and how he made me feel safe. How only a tiny bit of time later there is nothing in the now that makes me feel safe… it makes me sad. It hurts. Groundhog Day replays and replays in my brain today.

I can remember the feeling of Madeline… holding her and sitting with her. Playing tick tack toe in the hallway at Albany Med and her drawing Arthur and making little notes. I remember during her MRI sliding down the wall telling my sister Molly she needed to come home. I remember all of the friends and family who sat with us there… and then my heart hurts for what some of them have done to our family since. I remember maybe drinking a coffee, but really holding it for hours and not drinking it. I remember walking into the recovery room while Madeline was sleeping and the priest who was visiting weirdly walked in and told us “She is going to save your marriage”… and being mad at him for wasting this moment to say that. Later looking back and thinking it was a sign… and this is what it all looks like now. I remember sleeping next to Madeline on the bed in the Nuero PICU room, very squashed and hearing beeps and noises all night. I remember waking up to a big group of doctors, who had most likely been up for a long time talking about this MRI… knowing that this is not what they wanted to have to tell us. It was the weirdest day of my life… at least for about 5 days… then the day we drove home from the hospital with an empty car seat came. I kept thinking how hard it was to be a mom and leave my daughter to someone else… it was supposed to be my job. I worried that they got her little pearl earrings in and hoped she got to her next destination safely… I left my lovely with someone else. I felt empty and cold and like a robot. I still can feel that when I go back to those moments. I remember coming home and plunking it down in the middle of my living room with Matthew knowing that there was no one else that should be right there next to me for this.

Some of the today and the Groundhogness and repeating is about seeing all that is different today from then… recognizing what I miss and how much I miss her and my family. It is also about reflecting on what has come into this life… good and bad. What else was lost, what else was gained…

How can it be three years have gone by? How though can that life that was then feel like a whole lifetime ago??? Time is different, or maybe I just feel it and see it differently. Who knows, I am sure minutes are still minutes and hours still hours… but they don’t pass and feel the same as they did. I can’t believe that it has been over a 1000 days since my skin has touched her skin, that I got kiss her or hear her heartbeat. 1000 days. I wonder what it will all look like in another 1000 days…

Who is it that said ‘Three words I have learned about life- it goes on’… maybe Frost… but it does. Life goes on and on and on. In a way Madeline’s life still goes on… I share her, I feel her, I think about her… I just don’t get to touch her or parent her the same anymore. I don’t get to see her grow into a tween or adult or get old and wise… but I know she was wise then. She knew what all of this was… I just never knew to ask her. I was told by a medium if I ever asked Madeline she would have told me she would not live to be old. She knew all along her job was short… some might think that is crazy. I know it is true. She was more ready for this than we were… she is good and well and happy. She shows me.

I wish for 1000 more days with her, but will get through the next 1000 without her hand to hold or cheeks to nibble. I will get through… sometimes I will even thrive. For today I will just chug and breathe, remember and think, cry some and laugh… I will live in my Groundhog Day.

New Places + New Adventures + New Experiences = New Erin

So… I worked in this amazing Special Education classroom (a couple actually). I loved it and learned a ton about all people and children. I loved this board she had made about trying new things. Imagine if in elementary school you rewarded children for attempting to try new things? Things as little as pumpkin pie (hard for me to understand sine I.LOVE.PIE)… but this board is a huge incentive for children maybe with special needs to try new things (green beans, carrots, milk…). Imagine if that included other things in life. My vacation was full of those things. I thought of that board every.single.time. I thought of the challenge of trying new foods, doing new things… just the importance of it all. Maybe I just want to feel brave when I get to New York again. I don’t know. I will go with that, I want to know I am brave. BAM. So I tried many new things…

What kind of new things????? Let’s get to that.

  1. I wore my first two piece bathing suit. I just wore it. No cover up… I wore my wedge flip flops and some rockin’ big earrings. I was told by the cutest chick here that I look great. She told me “You look beautiful.” She didn’t say “holy freakin’ cottage cheese…. Mama put some pants on”… which is what my brain was fighting with. She honestly told me I was beautiful. <3.   It made my heart super happy. I wore my first two piece and it wasn’t black, another newbie for Miss Erin. I wore it and a big, messy pony and decided to just do it anyway. I can not rock those amazing and hot bikinis, but I can rock me. I can rock all of me… even the part that is training for a polar bear dip…
  2. I ate alligator last night. BAM. I don’t even like olives and I tried (kind of liked alligator)… kudos bold chick, keep on trying new things.
  3. I tried Conch… not the shell but the guy that lives in it. The restaurant had amazing drinks and awesome Conch Fritters. I actually liked them… what? What? I did. The corn and spices and things they were tasty. I mean all of that “I don’t like seafood it’s a texture thing” must have been a lie- my friend’s lovely has introduced me and challenged me to just step outside the box and try it. He rocks. (PS I still hate salmon and duck. Don’t do it.)
  4. I ate some snails and they rocked. It might have been the butter… but snails are tasty and slow moving.   I mean there was a piece of it’s body that was weird and stringy but… honestly I can’t judge the snail for his body chewability right???
  5. Did I mention I wore a two piece??? I did??? Move on Erin.
  6. I went to a new country (not Canada) and enjoyed travelling and exploring. Nassau was so beautiful. The colors, the food, the environment… plus it is right smack dab next to freakin’ the water = paradise. I loved seeing people smile and enjoy the restaurants and locale. It was different than all of the other places I have been. It was slow. There were beautiful kids who were eating shrimp at their family’s little restaurants. I loved it. I loved the beaches right there, water and then awesome cool little shops and walk up places.
  7. I got spanked by a cool local woman… with a very good spank. It freakin’ hurt… but it was definitely an experience. She was very funny and island… we had a great time hanging out there until there were underfed Bohemian Dogs that came to hang out. Those poor dogs… some things just really stink in other places.
  8. I totally went on an airboat adventure. I was the only non-cold one (thank you NY genes and extra insulation I wasn’t super cold). I loved the whole experience. It was amazing. I had never ever gone on an airboat adventure. It was fast and cool and fun. I am very thankful. I got to see alligators. It was awesome. I saw real alligators, in their homes. Did you know how big they are??? They are much bigger than I thought.
  9. I am loving and rocking an awesome dress that requires no bra. I have not worn a dress sans bra since April… as then, it is liberating and scary. So… tonight I am going to rock ,my lovely halter dress sans bra. So this is a different to me, a little hippy (Proud Dania???)
  10. I played Black Jack, after watching and observing and thinking maybe I could try… I did. I managed to spend 20$ for about an hours worth of entertainment. I think it was totally worth to 20$ to sit and hang out for an hour. I also tried roulette- and that 20$ only lasted a couple of minutes…

So new Erin is coming home tomorrow (my flight was delayed)… she is lighter in spirits and life… she is darker in skin and she is ready to take on the month. I have heard and seen lots of little bits of Madeline and I know she is sending me home refreshed. I feel refreshed. I feel good. I like the new Erin… I like trying new things that I might be a little scared to do. I like to be a little uncomfortable… a little unsafe.