Mother’s Day for this motherless daughter

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Mother’s Day is one of those days I want to brush off as simply a “Hallmark Card Holiday” but deep down I know it is more than that. I have such a (for lack of a better word) interesting relationship with this so called holiday that most years I simply I do not know how to process it all.  I find myself incredibly envious of those who have that mother/daughter relationship I never had the opportunity to develop and at the same time I am equally ambivalent and at a loss on this day dedicated to all that mom means to us.

My own mother died in the Summer of 1986 and this particular Mother’s day marks 30 years since I have had a mother..in some odd way I feel like a fraud because I had no business becoming a mother when I had very limited experience with being mothered let alone being a mom. I see so many posts today by people who love and genuinely miss their mothers..I honestly miss the thought of my mother more than I miss my actual mother. There I admitted it finally ..and I can’t say it feels good to get that off my chest but it does feel genuine.

Madeline got sick when I was 16 years old, our relationship was never one I would define as close. I think our distance is  because she built a wall between us very early on probably based on her own experiences with her mother (whom I never met) and some of the choices my mother made that resulted in my arrival. I often wonder if she lived, if things progressed beyond the angst of my teenaged years if things would be different, if I would feel different ..if I would feel a great loss for the person who was my mother? Unfortunately for me,  I will never have an answer to those questions only what ifs.  I am aware that loss and the what ifs that tag along are the ghosts that haunt my own motherhood. How I wish I had a picture that I could post and a true sentiment of missing my mother to share with the world..all I have is regret and a longing for what should have been. I know deep down inside every time my mother looked at me she saw her own bitterness and heartbreak reflecting back at her. My mother’s pain manifested in me through no fault of mine other than I existed.

I am blessed in my adult life with amazing human beings who call me mom. I fret and I worry every single day if they are happy, if they are living lives that bring them joy and satisfaction if they know just how genuinely loved they really are by me. I pray I did the right things by them..I know I messed up often but I relied upon life experiences with other women to be my northern star guiding me upon the motherhood journey. All I ever wanted was to be here for these beautiful souls who were sent my way to walk this path in life together.

Still there are days I long to be mothered. There are days I ache inside to know I was wanted and loved by the woman who gave me life..my mother. There are days I long to hear my mother say I am doing ok, that my babies..her grandchildren are going to be ok. I long to create a post with a picture and put it on Facebook to let the world know that I am part of a tribe of strong and loving women ..a branch on my mother’s strongly rooted tree…but I realize I have to be my own tree.

 

I can’t make this up

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I have been fretting about writing this post for a few days. The details are haunting me ..but actually putting the words out there almost feels like a betrayal of something that I can not put words to (oddly enough). The most appropriate way of explaining this is this post comes from the files of stuff I can’t make up..even if I tried the family edition. So if you are playing the home game..my family is “special” ..and knowing that explains a lot about me.

In this age of social media ..the etiquette rules of Emily Post are out the window..news is shared in the blink of an eye and put out for the world to see even if the people affected most are not ready for that news to be shared. It is rather difficult finding out a loved one is hurt or has passed away via a Facebook post or a tweet..I found out there was a death in the family on my mother’s side. Well let me clarify..my first cousin’s husband passed away rather suddenly and other than reading on facebook I would have been none the wiser.

I was raised a good Catholic girl in an inner city neighborhood in Boston ..we go to wakes, we go to funerals..we show respect not only to those in our family and close friend circle who have passed away but we also go to support our family no matter how we may feel about them. Family is family is how I was raised and how I hope I raised my children as well. Against my better judgement I looked up the obituary online ..bought a new pair of black pants and bribed my daughter with dinner out at Tasty Burger if she went with me ..reluctantly she agreed (great way to spend night #1 of her Easter Break…not)

When we finally got to our destination after sitting in traffic for more than an hour..we both decided we would try to get in and get out as quickly as possible..it was already 7PM and the wake was 4-8 so long term visiting was not an option. Saw a relative I really like right outside..said hello and reintroduced my daughter (have I mentioned that other than Facebook I do not interact much with these people? It is a LONG story) walked inside..got in line to pay respects..saw a few more relatives and said hello and again reintroduced my daughter..and there SHE was.

That SHE is my Aunt M (all of my aunt’s names except for 1 and my mother’s name begin/began with M), she is 87, the oldest sister and the only surviving sibling of the 6 in her family. My aunt was sitting there holding court and my daughter and I deviating from the line to say hello to her. I know better than to get into too deep of a conversation with anyone related to my mother..my motto with them is keep it superficial, keep the kid close to me and usually I can deflect the comments …well I was wrong this time..oh how I miscalculated this one.

Yes I started with small talk like telling M how good she looks ..and yes for 87 the bitch looks amazing, barely a wrinkle on her face. I have decided that her skin is so good because she feasts on the souls of the young children in our family that she sucks out and keeps in a jar in her bathroom..I ‘m not joking about this. She goes one to tell me she knows I did the Ancestry DNA test and I say yes and sadly thinking this is a safe topic say how shocked I am by what I managed to discover about the maternal side of my family (her side too) she goes on about how the DNA is wrong and that her mother/my grandmother was pretty close to full blooded Native American and born in Arizona and then brought to Eastern Canada..ah no. I said that is interesting because I had the MtDNA test done that traces your maternal ancestors back to EVE..we are Acadians with a Strong Irish background and a trace amount of Native Blood that is M’qMaq native to eastern Canada..apparently DNA lies or so M says. I also tell her how I confirmed my paternity and she was having none of that ..told me I have 3 siblings..I have 1, a half sister via my father. So seeing this conversation is going to turn ugly rather fast I switch the subject and that’s when M struck with lightning speed…

For those of you who are not familiar..I have been sick for the past 3+ years with the effects of Lupus ..mine has been pericarditis, pericardial effusions, pleurisy and pleural effusions. Have been on and off prednisone the past 6 months..but I am on the mend (again not a pity me post) M looks at me and says what happened to you? I said excuse me? She said I saw you 2 years ago at M’s funeral (my other aunt M) and you had lost so much weight and looked good..looks like you gained most of it back and got fat again. WHAT THE ACTUAL? I look at her and said 2 years ago I was very very sick..she says maybe you should get sick again it was great for your waist line. My daughter is sitting next to M trying to pick her jaw up off the floor..but wait it gets better…maybe better is not the right choice of words here…the story takes another sick turn..

Aunt M looks at my daughter and says ..my word M (yes I had a child whose name begins with M as well) you look just like my sister Madeline (my mother) I hated my sister Madeline. Aunt M goes on to say ..Madeline was one ugly child ..did not get much better looking as she got older..looks at my daughter and says well at least you are a little better looking than your grandmother. She says your mother posts pictures of you on Facebook from your Irish step dancing ..the make up and the dresses look good on you I have your pictures all over my wall..you should wear make up more often…if you could see the look on my child’s face at that moment your heart would break.

If that is not tipping the scales of insanity ..my aunt M then goes on to say as I walked away briefly to give my condolences to my cousin who was the widow..you know your mother never liked her mother ..your mother was ashamed of Madeline because Madeline was poor. Your mother was always about money, that is why she always wanted to be with her aunt H (my grandmother got off the M track to have a child whose name began with H..but got back to her regularly scheduled Ms when my mother was born) Your Aunt H had money and spoiled your mother. Your mother thought she was better than all of us ..that is why she went to that high school in Brighton..that is why she does not associate with us ..we don;t have any money. She continued insulting the way I look..where I live..all of my choices that she knows of in my life to my poor child (she is not a child but still my baby)My daughter is sitting there trying to get away and she finally texted me “SAVE ME” which prompted me to walk over and say are you ready. I managed to be respectful enough to say my goodbyes, to give my condolences and get out the door with no fake promises of we will get together soon ..just a take care.

We get to the parking lot ..and as we drive away my poor daughter says I NEVER want to see those people again. I said what happened ..she conveys what aunt M has said to her and looks at me and says basically mom she told me I am a less ugly version of my grandmother especially when I wear make up and and am dancing at a competition ..and you are a fat, ugly gold digger ..that lady is a (and she went there and used the dirty C word that I refuse to say and could not reprimand her for using because if the title fits…..) It was a good thing we were already on our way to the bridge to get to Tasty burger..it was a good thing by the time I turned around it would have been too late to say anything…it is a good thing I was raised by my aunt H to be a respectful Catholic girl from Dot..most 87year olds are cute…many have totally mellowed out …my aunt M is the witch from Hansel and Gretel what looks good in the outside harbors a nasty secret on the inside. Note to self..the next time there is a family wake I need to be out of town …I wish I could say i punked you all with this but sadly I did not.. unfortunately it is all true and I sucked my poor kiddo down the rabbit hole with me…the only thing is she totally gets why I keep my distance from those people

Thoughts on National Sibling Day(needs editing)

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All over my Facebook I am seeing posts for National Sibling Day. Ah National Sibling Day, what can  say about it? Well I can say a lot and the one thing I say is damn it I am unbelievably jealous of all of you.I look at your posts and wonder what it would be like on one hand..and know what it is like on the other hand. I was raised with my cousin John like we were siblings ..and he well he was a big brother in so many ways, right down to being a massive pain in the backside. However he was not my brother and we have not had much contact in the years since both of our mothers passed. I have my cousin Karen who is John’s big sister and with whom I was raised as well but she was a bit older than both of us and let’s be real here..John and I were not the easiest pair of shoes to break in and Karen had better things to do than deal with the likes of us. Still she was good to us and took us to movies and to play mini golf and bossed around like only Karen can. Thankfully we are reconnected..family is everything and I realize I loved her dearly when I was little..and I love her dearly now.

As for this sibling day business…This is the day  that usually I like to be snarky and post something from National Only Child Day about how we only children are bright and so perfect our parents decided why tempt fate when you’ve got a good thing going. Well …while it may be true that those of us raised as only children are actually amazing..for me there is a lot of reading between the lines..and my mother really did not need to have any more children.

Truth is….I am not exactly an only child even though I was raised as such. I am my mother’s only child, that is true . My father kind of sorta was married to someone other than my mother when I came to be so I also have a half sibling (a side note here..I don’t believe in half or whole..family is family is family in my eyes) a sister to be exact, she is 8 years older than I am and she is my father’s daughter. My sister’s name is Kate and she too was raised as an only child. I used to wonder if Kate knew that I exist and one day I took a chance and began looking for her and my father..the answer is if she did not know before..she knew at last. Neither Kate nor my father ever reached out to me and I spent the next 20+ years doing all the things I did like raising my family and in the process becoming a rabid Irish Dance Mom (another story for another year) But then things happened..my kids grew up and did not need me quite so much and worse I got sick (this is not a pity post) and suddenly everything in my life that was go go go became slow slow slow. So I wanted to find out what Ancestry could do for me…

Well through Ancestry I discovered ..I am 68% Irish and British with Iberian and Scandinavian as well…basically I am a Black Irish Viking ..kind of badass if you ask me but badass is not the first word one thinks of when they think of me (If I am being honest here) I also found my father’s college yearbook and loads of information about his family like my grandparents names and my great grandparents names and where it is they come from..really amazing stuff for someone stuck at home on bedrest and in the middle of a pity party to discover. So I decided to take this a step further..I found a cousin via ancestry and then I found said cousin on Facebook and I reached out ..he responded but not as well as I hoped. This cousin was rather shocked to discover I am a relative and said he would talk to my sister and get back to me..yeah that did not happen.

I discovered in the meantime that my newfound cousin’s sister (also my cousin) is friends with my neighbor down the street and that they used to work together when my cousin was one of the managers at the supermarket I shop at in my town (she no longer is at my local store) I also discovered she is at least Facebook friends with one of the Walpole dance moms whose daughter attends the same middle/high school as my daughter..small world isn’t it..gets a little smaller too. My sister has a child who attended an agricultural high school that is regional ..the same school the neighbor’s child attends now. My sister and I walk the perimeters of the same circles even if by association.

Thanks to Ancestry DNA I was able to prove my paternity..a task made completely possible when Karen’s son also tested along with another first cousin. I was able to see I am matched rather strongly with my grandfather and great grandmother’s family the Bombards of upstate NY as well as discovered I have Duffy family members and King and Conneely from the Connemara Region of Galway ..I have a strong DNA match with people who are related to my father’s paternal side of his family..I have a whole new world opened up..but I still do not have my father or my sister. My father passed away in 2010 and I am going to guess from Alzheimer’s or something like it based on the obituary I found..my sister it seems (according to my cousin via facebook) is “Not interested in having anything to do” with me. Door shut..message received stay in your lane girl.

447 Days Looming

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I have a birthday looming on the horizon.  Between you and me…I am really praying it is a  better day than last year when I was plagued with a nasty attack of vertigo which necessitated an ambulance ride to the ER, a CT scan of my brain and a cocktail of drugs that left me for lack of a better word wasted. I mean let’s be serious that episode not only took being “wasted” on your birthday to a whole different level but it also meant no birthday cake..let’s not get me started on the depths of that tragedy (shudders just thinking about it..) However..vertigo and lack of birthday cake are not what this post is about..

I am turning 48 in 21 days. 48 ..the same age my mother was in 1986 when her cancer diagnosis turned the world upside down. In 1986 I was 16 and 48 looked like a million miles away  ..today 48 is merely a breath away and I am quite frankly terrified.

My mother was never really one to take care of herself, she smoked like a chimney, ate very little in the way of healthy/nutritious food, barely went to the doctor or the dentist (if you saw her teeth you would know what I mean) and pretty much existed on unsweetened tea or coffee , the occasional sugar raised doughnut and the infrequent meal out courtesy of one of her sisters (IHOP was a favorite). I have inherited her disdain for seeing the doctor and the dentist, however I drag my backside for cleanings every 6 months and for dental work when need be..the doctor I do not have much of choice to avoid..but let me tell you just like my mother I will ignore whatever is going on with me until I can’t let it go any longer. I am a prime example.. some apples do not fall far from their trees. Thankfully I have never smoked..not that I did not try to be like some of my neighborhood friends or the girls on the bus to school ..I just never liked anything to do with it and that has turned out to be in my favor. I often remind myself..I am not my mother..but then I am reminded while that may be true..she lives inside me, we are forever connected.

31 years is a long time to be without one’s mother. I realized how profound the impact of my mother’s loss was to me  when I had my first child and was alone thinking how am I ever going to do this? How can I be a mother when I don’t have one to show me the way? Worse still…my mother got sick and died during that awful time of my adolescent angst. Still in that I know it all, you are too old and too out of touch to know anything phase..too stupid to realize she could leave at any moment ..too self absorbed and ego centric to acknowledge  I was scared about what was happening and  honestly no one cared. I did not think in those days that I needed her or any of her baggage, I saw someone through the lens of a child who failed on many levels ..She died before I got to know her. My adult self has this fantasy inhabiting my imagination that given the chance I would rewind the clock and spend a day with my mother and get to know her, find out what brought her joy..discover why she felt so much pain. I know that would never happen because I am her daughter and opening up is not easy for me and was not easy for her. More likely than not..a well planned out conversation in my head would come out all wrong when it took place and she would tell me like she often did that the answers to my questions were none of my business. Such was the nature of our relationship.

I want to say  I am sad that my mother is gone ..however  I am back in the point of the grief cycle where I am angry at her for leaving me.  I admit my anger is  purely selfish ..she left me before I got to know her. My mother left before I got to know me ..and whether I  like it or not she is part of the reason I am this person I have grown into and I needed her for longer than the time I had. I am looking for answers… I search into her eyes in the 2 pictures I have of her looking for a bit of myself to reflect back and I can not see it. I am searching for a connection,  I am searching for closure, I am searching for her to tell me it is all going to be ok.

My mother died on July 15 1986. From the time she was diagnosed with end stage lung cancer in April 1986 until the day she died  about 90 odd days passed. During those days we lost our home and had to move in with family, she started aggressive chemotherapy and radiation therapy..she celebrated a birthday on May 17, her hair fell out, tensions were high with the family..despite having lung cancer and being treated with poisonous drugs she still could not put down the cigarettes..This is what I remember. I cannot remember what she looked like or what her voice sounded like, I don’t remember the good conversations..I have lost it all and I want it back.  My mother was 49 years, 1 month and 28 days old when she passed away..I have this bargain with myself that I must live to see 49 years,1 month and 29 days. I have 447 days from today to reach my morbid goal.

There is a book called Motherless Daughters: The Legacy of Loss by Hope Edelman that I read many years ago when I was in my late 20s/early 30s and it talked about how anniversaries and becoming the age at which your mother left be it by death or by choice (in some cases leaving is not a choice) is profound and will affect you in ways you can not imagine. I will be honest ..my thoughts then were ..yeah right. Flash forward 20 years…I am 21 days..3 weeks to be exact before my 48th birthday and this is what dawned on me…I have never imagined myself growing old. I have never seen myself beyond where my mother left. I am stuck in this terrifying limbo of will I make it to June 11, 2018. The book sits on my book shelf calling my name to read it again ..and I know I need to but just not now ..maybe after my birthday or maybe after June 11 of next year or who knows when..but I know I need to read this book again. This is affecting me in ways I did not imagine.

I see the next 447 days as a journey towards a symbolic ending…an ending of what I have known and held on to. I am moving towards  what I am fearing most which is dying before I get the chance to live. Dying before my children are ready to lose me or worse dying before I finally get some peace with my mother. I have spent the past 30 years trying to cram every experience possible into my life..to do it sooner before it is gone..I got married very young… I had my babies young, I went places and made sure I could say I owned a home, I went to college, I saw my children graduate from high school (an experience my mother missed out on), I drive a car ..all those things my mother never did. Along the way somehow I lost the joy in all that I have and that I have achieved in this life because I was trying to check off the list and get it done and prove to myself I am not my mother. I have 447 days and I pray that I make it. Like my mother I got a diagnosis in March ..mine was March of 2014 ..I was 44 years old at the time..mine was initially pericarditis, I have learned since it is still pericarditis but the cause is not a virus but rather SLE or as we all call it Lupus. My diagnosis came in march of my daughter’s junior year…my mother was diagnosed in my junior year ..totally a coincidence but I have to admit it scared and still scares me..

So my birthday is 21 days from now. I declare  there will be no vertigo (I hope) and there damn well better be a cake ..either a chocolate cake with white frosting or a lovely white cake with strawberries and cream in the center and whipped cream frosting ..447 days from now there will be champagne and a celebration of life and the world will turn right side up.

I need to add that yes I had to edit a few things here..I suffer from terrible bouts of insomnia ..thinking straight at 1:30 AM is not always possible..but let’s get real ..thinking straight is not one of my stronger traits …I have hopefully cleaned up this post and gotten my math straight ..and I checked the birthday is still 21 days away (as of this writing)

When Hello also means saying Goodbye

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A few minutes ago my head was filled with the words intended for this post. As I am sitting here, I have discovered actually translating from thought to action has proven to be a monumental failure to say the least. I tasked myself with trying to formulate the perfect words to honor my daughter who many years ago on this day we brought into the world only to say hello and goodbye way too soon.  To my utter despair, I can’t seem to capture with words all the feelings and emotions swelling inside. Please someone tell me just how one honors a moment in time that cannot be defined by words alone.

I fear some years that I forget the important details..the times we heard a heartbeat, the times the doctor said everything looked  great..but there was always a feeling of  fear lurking in me. I knew something was wrong, it was a feeling in my bones, the feeling haunted me and yet I blew it off. I heard a heartbeat, I saw her growing, ..the doctor told me everything was great what could go wrong? In my head I kept thinking I am young, I have done this before, it is just the hormones messing with my emotions. The words I never expected to hear haunt me to this day..There is no life. Those words ..those 4 words changed everything ..those four words changed me. I had baby clothes in the drawer..I felt the baby move …I was filled with life ..only to hear ..there is no life. Suddenly I was no longer filled with life and hope and left with heaviness of crippling grief. Mothers should not have to bury their babies. I cannot describe the despair I felt knowing my delivery would mean my baby would no longer be a part of me..that once she was outside of me, that was really the end. Labor was induced, it was relatively short and it was lonely. My child’s birth was traumatic and happened in the elevator on a gurney as I was transported from my room on the high risk maternity floor to labor and delivery. My daughter came into the world in the same hospital that saw me arrive 20 odd years before her another reminder that we are connected even though she is no longer here.

We  (my husband and I ) decided to honor our daughter and give her the name we intended for her..Molly Clare. Our daughter named after my husband’s grandmother Mary Claire  who was a beautiful woman in every way you can imagine. I like to imagine Molly has her great grandmother’s spirit and had she lived she would have lived up to her namesake. I like to imagine she looks like her beautiful sisters. I like to imagine she is kind, smart and sassy just like her sisters ..I like to imagine so much about her on the day she came into the world. I know  I see her forever as a baby, my imagery is frozen in a moment so very long ago. I know that a tiny set of footprints and a headstone are all I have that prove she was here for even just a moment.

The days leading up to today have been filled with angst and grief..tears do not come easy but this morning they are spilling out. I find some years this day passes not exactly with ease but with quiet reflection and other years (unfortunately this is one of those years) I miss my child and ache with the feeling of loss deep down in my heart and soul. Tomorrow will be better..it always is ..but for today I will remember my daughter and hope one day, one year I will find the right words ..but for now my sweet Molly Clare wherever you are..I hope you know just how very much I miss you and pray your grandmothers keep you safe until we are together again.

 

 

 

Heirlooms

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It’s just a table, and currently it is sitting in my dining room flanked by chairs that belonged once upon a time to my husband’s grandparents. This table, this object however is more than just a table, it is part of history, made in days gone by in a style that is no longer made or seen, it is an heirloom, it’s my history…it is suddenly my reality.

My grandparents purchased this table in the late 1920s probably not thinking that 80+ years later one of their granddaughters would have possession of  it pondering the meaning behind its presence in her life. My grandparents are  2 people who I never met and whose pictures I might have seen once or twice..not enough to feel a connection to them and yet it is their purchase, their possession that enthralls me and challenges me at the moment. The table resided in the the kitchens of the homes my aunt Helen owned and most recently belonged to my cousin, her daughter and now it sits in my dining room..covered in stuff I might add and it makes me cringe to see it with the junk from my life on it because my aunt always kept the table clean.

You can almost smell the Sunday dinners served at this table, feel the warmth of the many cups of tea poured..hear the conversations that took place while drinking, eating and just gathering. The kitchen in my aunt Helen’s home was the heart of the family and for someone like me without much family to cling to, this table being here..this portal to my past has stirred up thoughts and emotions I either forgot existed or simply kept hidden away.

In reality, it is just a table…but in my reality it is not. This is where I admit, the past has caught me off guard and as a result I had somewhat of a break down/episode/or some other word I can not construe at this very moment. The day after it is was delivered, my loving husband set it up in my dining room for me to enjoy. What i was not expecting was the gut wrenching emotion that ensued.  Tears are not something that come easily to me, yet here I was sitting at my table with tears pouring down my cheeks, stinging my eyes, their saltiness burning my dry/chapped lips but over what? I was trying to figure out why I was suddenly flooded with emotions over an inanimate object and here is what I realized…

This table is more than just an object..I have so many memories of my life around this table. I was fed at this table when I was baby when it resided at the Vesey Rd house in Randolph, seated in the metal high chair with a gold quilted fabric seat that would be the bane of my existence until I was about 12 years old (tell you about that a little later), I shared meals with my family at this table, ate really amazing food to be honest…and I wonder is that where my love of cooking transpired? Was it sitting at this table watching, learning by osmosis that I developed a patience to cook and create, a desire to feed my own family I created? This table is where I sat on rainy days and colored in books filled with blank pages of clowns, of Scooby Doo etc..I learned to do connect the dots, and to stay inside the lines. I sat at this table and learned to play games such as monopoly and checkers..but more importantly I learned the nuances of winning and losing and my rather spoiled cousin John always changed the rules in his favor to get the advantage (winners go first after 11:00…losers go first after 11:15) he rarely beat me at anything strategic. This table is where I often sat on a chair and had my knees bandaged, my temperature taken ..my boo boos kissed by a loving aunt. I sat at this table and had wonderful heart to heart talks with my aunt who was more a mother and as I got to be older a friendship began developing (cut short when she passed away when I was 20) The kitchen and the table is where auntie confined the relatives when they came by to visit, but it also hosted those who stopped in just to say hello. The table always seemed to have room for one more and that is where we get back to that high chair..the metal one with the tray removed and the gold quilted seat. You see when we needed room for one more..they either got one of the chairs that went with the table or a chair from the dining room..as for me I was the tiny one and I had to sit in the high chair until about 12 years old. I hated having to sit in the high chair, I was already the baby (well until Meg came along) oh the indignity! Most days the high chair housed Auntie’s purse but when company came over..that was my throne.

So here in my home is this piece of furniture with history and memories attached that run deep. Still why the tears? Why the sense of overwhelming emotion that I simply can not put words to? It dawned on me..this is the first thing in my home that is mine. Yes there are many things I call mine in my home but none are like this. This is the first thing, the first memory, the first piece of me that represents who I am ..who I was before I became his Mrs., before I became their mother..this is me, my past, my present and even my future. Crazy that something that we take for granted while growing up that will just be there..that just exists can have such an impact on us later in life. I cherish my turn with this table..I cherish the memories and the feelings it is bringing to life..I cherish having my “mom” here with me again. This year marks 30 years since my mother died and 27 since aunt Helen passed and I am officially around the same age they were when they passed ..this table is building a bridge long thought blown up one memory brick at time.

 

 

Just another day…

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Rattled, that about sums up how I am feeling at the moment. Somehow, some way I managed to piss off the karma gods this week because they have placed a massive “KICK ME” sign on my back this past week. Where to begin ..I just don’t know.

Last Monday was my birthday..no real big deal it was not a milestone event..but it is my one special day out of the year and I look forward to the cake. Have I ever mentioned that birthday cake is probably my most favorite food ..even though I really can only eat a little bit of it at a time? Well back to last Monday..before I even opened my eyes I knew something was wrong because I just felt off. I was wondering if it was the increase in the dosage of the Imuran the rheumatologist has me on or the fact that the weekend before my ears felt blocked like I was on a plane..but I could not pop them. I sat on the side of the bed and the room was spinning. Thankfully, my husband was home for the day to be with me on what was supposed to be my special day..and he got up to help me to the bathroom. I thought a drink of water and and lying back down with my feet elevated would help..but things progressed rapidly and within minutes I was sick to my stomach and unable to open my eyes due to the room spinning as if I was on an out of control carnival ride. I told him take me to the doctor..then I I realized I would never make it to the car..so he called 911. You know, at this point I was getting scared. I could barely talk, I was feeling weak and unable to move..the world was spinning out of control..was I having a stroke? Turns out I had a nasty attack of vertigo that warranted a stay in the hospital, an IV instead of a birthday cake, a CT scan instead of a mani/pedi (which I really need desperately) and a vertigo cocktail of meds with an ativan chaser to calm everything down and make the dizzy go away.  The sucky thing was..3 days later I was still dizzy and not able to drive.

We move on to Friday..I call my OB/GYN ..no I am not pregnant that ship has sadly sailed off into the horizon….because I realize my appointment with her is quickly approaching and I have yet to have my mammogram done AND I have a lymph node that looks funky show up on both a chest CT scan and cardiac MRI  and I wanted to know do I go for the regular mammogram or do I go to the breast center? The answer was come in to the office. Well she found a suspicious lump at six o’clock and a lymph on the other side. Probably nothing…but WTF?? I don;t need this shit..I am just wrapping my head around the damn Lupus diagnosis. Made the appointment for the breast center..texted one of my best friends to remind me I am 47 and welcome to the lumpy boob club..B, as usual talked me down off the ledge (just like I did for her a few months ago when she went through the same thing)

Then over the weekend..I had a stupid melt down over a table. It is not just any old table thought it is the table that belonged to my grandparents, it was in my aunt’s kitchen all the years I was growing up..my cousin took good care of it for the past 26 years and now I have it. I realize it is the first thing in my home that is MINE. the first thing that I brought in that represents me and I am overwhelmed..damn hormones.

Now we move on to today..oh what can I say about today? Today I was all anxious because tomorrow is the day I go for my diagnostic mammogram and ultrasound. Tomorrow they will tell me if I have to deal with more on plate than I can already handle. I planned to take it easy, I planned to do a few things that were going to keep my mind active and prevent it from perseverating on the appointment tomorrow..that got blown to shit. Enter neighborhood drama..

We are in the middle of a bathroom renovation. I am on my second contractor because the first one flaked out on me and took a lot of money. This new guy is in a nutshell..AWESOME. Contractor was here today installing board and batten to my walls ..all was good until I looked outside and saw a police car at my neighbor’s house. Her husband has multiple health problems including at least 3/4 heart attacks and heart surgeries. I did not see his car in the driveway..but I saw the wife’s and she was talking to the police officer. The first thought that ran through my head was ..I hope everything is ok with the husband. I have not spoken to this neighbor in close to 3 years..I don;t know why exactly except that the past 3 years have been awful. The last time I did talk to her was around the time that our beloved Uncle Jack passed away. I took his death really hard, and I did not talk to many people in the months  that followed. Grief does that to you at times. Anyhow …so I see the officer walking towards my house and my thought was are there break ins in the neighborhood? There is an opioid crisis in my state and maybe the officer was coming to talk about that. She walks over and asks if she can speak to me. She then asks if I am having issues with my neighbors across the street. I said no. She proceeds to tell me that the neighbor called the police to tell them that I was going into her yard and I was either throwing rocks or kicking rocks and destroying her plants…huh???? Apparently the neighbor says this has been happening in the middle of the night, she has not seen anyone but she knows it is me…oooooKAYYYYY.  I said to the officer..first of all I just got out of the hospital after a crappy vertigo attack..my town’s EMS took me there so I have not been out of the house  much in a little more than a week..next I have Lupus which has attacked my heart and lungs..I don;t have the flipping energy or lung capacity to walk across the street let alone pull those kinds of shenanigans..and lastly speaking of shenanigans…I just turned 47 years old the days of pulling crap have long passed by, and even when I was in prime shenanigans age I really was not that kind of girl. The cop was like ok. The officer says just avoid her and don;t engage..I said I don’t I have not spoken to her in almost 3 years.

Today was  also trash day, delayed a day thanks to a Monday Holiday here in my state..I went outside to put my trash out and all of a sudden the neighbor comes out and starts screaming at me “stay out of my yard you miserable bitch”. I said “OK” and she kept going on and on. UGH. My head knows it is more likely than not dementia or some kind of mental break on her behalf..the other side of me is rattled. Out of the blue she invaded my sanctuary..she invaded my home, my safe place. I could not shake this off..maybe in a couple of years I will laugh about it..but not today. Today I am triggered and totally on edge about what happened. I have never done anything to this woman..my husband and son shovel them out in the winter if need be ..my husband has moved heavy objects for her..she freaking stole my cats. No I am not exaggerating, she put out cream and meat scraps and took the cats in to her house and neither one would come back home..why would they? I offered dry food with an occasional can of Fancy Feast as a treat..my house has 2 dogs, tons of kids coming in and out and no one to dote on them. She renamed my cat and then screamed at me because she had to take him to the vet. My husband gave her money to cover the costs..but after a while why would we keep paying? We just ignored the cat issue after a while, I never called the police to say she stole my cats or when she was taking snow from her house and piling it at the end of my driveway..I just figured that is who she is and let it go. I am perseverating on the fact that I did nothing wrong to this woman and why would she single me out?

Today, this woman managed to make me feel unsafe in my own home, to feel accused even though I did nothing wrong ..problem is I let that happen. maybe if I was not recovering still from the damn vertigo or if I was not already a tad upset about tomorrow I would have blown it off..but I can’t and no one gets it. Maybe I am the one who needs to get it..but I am in the weeds of this and my home..my space..my security has been breeched and this is not a good feeling.

P.S…have I mentioned yet that this woman who probably has some dementia going on is still driving?

The Key word here is YES

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I am back kids…hope you missed me while my body and brain were on extended sabbatical attempting to get better. Last time I had the notion to write about the life and times of my family’s adventures I mentioned I was diagnosed with pericarditis and pericardial effusions ..leaving me all but bed ridden. To be honest….not much has changed except the plot thickens.

My last post was around the time I was feeling that it was time to take a break from the constant doctor’s appointments, wallowing in what was wrong and time to start focussing on the good stuff. The good stuff being my family, the fact that I did not have a fatal disease and I truly believed I did not need to pay the doctor to tell me to continue taking NSAID medication and to rest. So I cancelled my appointments, started focussing on my then high school senior’s college adventure and rested while taking loads and loads of Motrin. Can I just say that was not my most brilliant plan ever conceived?

Well Fast Forward to Summer of 2015..my high school senior has done all the senior year things…SATs, flipped out every time the mailman drove up the street, checked in online on the college admission sites..did her senior capstone projects, Her Irish dance team came in fourth place in the world at the world championships (yeah I went to this one..nothing was keeping me from being there with her)…  checked out/developed senioritis right after winter break..prom…graduation .. Her Irish dance team WON that’s right first place at the North American Nationals..she became a massive pain in the ass right on schedule. Life was moving along well enough..I could manage.

I am, still not better and at this point it is 18 months since my diagnosis and of all people, the OB/GYN is the one who forces me to go into one of the teaching hospitals in the city to see just what the heck is going on. While this is happening..I am starting to develop an ulcer from the high doses of NSAID medication I am eating like candy to ease some of the symptoms. Time to go back to the doctor..

Thanks to my amazing OB/GYN I get an appointment with one of the top cardiologists at one of the world’s leading hospitals and thankfully he gets it …but he throws a wrench into what has been happening. You see if this was truly just a virus he says, at almost 2 years post diagnosis..the virus would have run its course by now. What I have he believes is pericarditis brought on by something else, possibly a mixed connective tissue disorder and he is honest and says he thinks I have an autoimmune disease.He also tells me that my pain is real, that people with smaller pericardial effusions are often in the most pain and the previous doctor’s office was wrong to make me feel as if I should not be in so much pain. He orders blood work and a referral to a rheumatologist. His round of blood work comes back in a few days… my inflammation markers are off the charts high, no wonder why I can’t breathe and I am not getting much better. He wants to do a cardiac MRI but wants to consult with the rheumatologist so that I do not have to undergo multiple tests and whatever they do..they get it all done at once. I really like this doctor.

Rheumatology is quite a different story. I go to the appointment mainly because I see it as something I have to do and to rule out autoimmune diseases. The doctor I see is foreign, has zero bedside manner, intimidates the crap out of me and is actually quite brilliant. We talk about me..my miscarriages, how I avoid citrus juice and too many acidic foods because I get those nasty canker sores on my tongue, on the roof of my mouth or on my gums. We talk about how it sucks that I have been inactive because my joints are stiff and sore..worse since I kicked the NSAID medication to the curb to heal my gut. Then we talk about how I am always tired..well I am a mom it makes sense right? We talk about how I got a rash from the crazy sunburn I seem to still have form my trip to California In September and how I think I have rosacea but the dermatologist just thinks I have sensitive skin on my face and how I always have a red rash on my chest. We talk about how the chest pain and lung pain is stubborn and just will not go away ..more so about how I am over it and have tried diet, yoga, Reikki and psychotherapy to get over this. I tell him I don’t want anything to be wrong I just want whatever is making my heart and lungs hurt to just go away. He makes me feel at the end of the appointment as if I am a head case and once again I start thinking this is all in my head..just have to get positive. He orders a round of blood work and I go off on my way. 2 days before Thanksgiving my rheumatologist (to be known going forward as Dr. Personality) calls to inform me that my blood work all came back abnormal, he believes I have Lupus, he was putting me on a medication called Plaquenil to help with the symptoms, that Plaquenil can build up in your eyes and I will need to follow up with my eye doctor since it can cause some people to go blind..”any questions” he asked? Stunned into silence I said no (at least I think I said no..in my head I said no, the words were escaping me) so he says “OK Happy Thanksgiving” and hangs up. WTF just happened there????? Lupus? Wait…I am crazy, I don;t have Lupus. People with Lupus are sick ..I am not sick am I??? That was when the tears just flowed..and flowed…and flowed.

Lupus is manageable with medication and supervision..but this was happening to me and I had a bit of a pity party. the next thing that crossed my mind was..to tell people or not to tell. I simply did not and do not want to be the “sick” friend. I want to have the life I had before pericarditis, before my lungs were compromised, before..dare I say it Lupus. Lupus…this I was not expecting. I was expecting..you are nuts not you are sick. Thanksgiving came and went..I kind of have a love/hate relationship with that holiday,but all the  kids home with me is enough to make me count my blessings and realize this is not that bad. I did have to tell the kids what was going on and what the plan was. I decided not to share just yet with my friends or most of my family what was going on. I have a cousin, she is the sister I never had and she was the one I told. Lately she is one of my rocks..family is everything. It took a while to process both on my own and in therapy but I finally let the friends know and not many people can say this..but my friends are the most amazing people on this planet..like I said family is everything..my friends are my family too.

What also amazed me was Dr Personality called back..he said he connected the dots of my symptoms and thinks I have had Lupus for over 20 years and no one ever picked up on it..that is scary to be quite frank. The wrench in all of this is when I develop a rash..a nasty rash that blisters about 2 weeks after starting PLaquenil. I am it turns out VERY allergic to placquenil and because I was taking motrin with it and have a relative who developed Stevens Johnson Syndrome from ibuprofen..I am no longer able to take either medication. I looked like a freaking leper for almost a month..my legs still have scars from where the rash blistered..plan B is immunosuppressant medication..scary shit.

SO now the adventure is to live healthy and to live positively despite all this nonsense. Yeah I am still in my bed more often than not…yes I still have compromised lungs (did I mention I flunked the pulmonary function test? I offered the tech $50 to pass me..he did not find me funny) Yes this is not what I wanted to hear or have happen..but you know what? I have a diagnosis, I have some of the best doctors in the world on my team, I have a treatment plan..I have a wonderful husband and great kids (ok they are massive pains in my ass at times..but no one is perfect) I have 2 adorable dogs..I have amazing friends who lift me up and support me through everything..I have some wonderful family members who remind me that I was me before I was a wife and mother..that I have a tribe where I belong. I have so much ..and I do have lupus..and lupus is only a chapter in my story..Yes I have to rest and not overdo things but there is NO WAY I am allowing Lupus to run the show.

 

A New Chapter

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It has been a while since I have possessed the capability to string a decent sentence together and hence the result is a neglected site here. There is a valid reason for my lax in posting, you see six months ago (almost to the day) I went into the emergency room at my local hospital thinking I slept on my side the wrong way, and walked away with a diagnosis of pericarditis and pericardial effusion most likely caused by a virus. The easiest way to describe what is pericarditis is to simply tell people I caught a virus and it went to my heart…but it is a little more complicated than that. The best description I obtained is the following  from the Mayo Clinic http://www.mayoclinic.org/diseases-conditions/pericarditis/basics/definition/con-20035562.

In the six months months following my diagnosis (seven months almost since the symptoms started) I have been lucky to find not one but  two support groups on Facebook and have been able to build a decent team to help me through this ordeal. Pericarditis is an unfortunate illness in that there is not much that doctors can actually do for you except give high doses of anti inflammatory medications, prescribe rest and limited activities. If I had a heart attack there is a solid treatment plan and recovery timetable to know when I would be better..with pericarditis you get to hope it does not become chronic…personally I feel like I passed chronic 5 months and 3 weeks ago.

For me, this ordeal has been taxing physically, emotionally and spiritually. I find myself often asking why did this happen to me? How did this happen to me? Is this how I am going to feel for the remainder of my life? It is not easy to find yourself all but bed ridden, unable to walk to the kitchen from your bed, unable to sleep because no position is comfortable, to see your old, busy life become a fading memory. The days that are hardest are the ones when it hits that I am no longer the same mom or wife I was a few months ago. One of my children is a senior this year, it is college touring time..yet while she tours the campuses (alone with a tour group) I am forced to sit in the admissions office feeling guilty. When my child(ren) attended North American National Championships in Montreal for dance this summer I was home supporting from the sidelines..something I never did before. I celebrated my twenty fifth wedding anniversary this summer with little fanfare since we were grounded from traveling extensively (or any place that requires even some waking). While this looks like a pity party, and I admit to some degree yes this is as I mourn the loss of moments and experiences in my life and life of my family …I am also grateful that while painful and somewhat debilitating at times..Pericarditis is not life threatening just annoying. I am grateful that I am forced to slow down and participate in my own life, take care of me for a change…an even more difficult task was learning how to ask for help and to accept the help offered.

Normally, I am the mother who piles 7 kids into my seven seat SUV (yes I know illegal)  making mine sit on the floor. I always have room for one more, because I never mind helping out another person, thinking well if I ever need help they will be there for me. The insane part of my logic is I never asked for help, I always thought oh I do not want to burden anyone else by asking them to drive my kids. When I found myself so ill that things like closing the car door were beyond painful, staying awake for longer than 2 hours impossible because the fatigue was so intense, breathing in the cold air felt like a knife slicing into my lungs ..I knew it was time to ask for help. Much to my surprise I reached out and multiple people offered to help ..the hard part was saying yes I need you, but my husband was in California on a business trip and I was the only licensed driver in the household and I knew all I could say was thank you. We actually moved into a hotel closer to school and dance so I did not have to cook (can we say YAY room service) or clean for a few days. I learned that help is not a sign of weakness but allowing those who love me in and I am not a burden.

So if I can say anything..I am grateful to have a life altering experience that has forced me to slow down and write a new chapter in my life. I mourn deeply the loss of experiences these past few months, the burden my kids have felt watching their mother who once was super woman able to do whatever they needed..now was the one who needed..but I am alive and I am slowly getting better..look I can string together enough coherent (I hope) words to make this post..take some time this week to slow down even for a few minutes..you will never regret spending more time with those you love.