Quincineara beat down

In this generation of #MeToo, I’m watching all the quincineara preparations of the young ladies around me (similar to the debutante ball my Nana tried to get me to desire and agree to have, just before I graduated high school), and it’s just exhausting.

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I am well beyond the age of getting married and having kids, but I’m at the other end of the age scale where an unmarried older woman has no one obliged to take care of her thru means or family or birth, so the focus on a woman’s day as a married princess or object of desire is beating me down and exhausting my psyche.

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My decision was made long ago, in terms of hope, my reality, and knowledge of what I would and would NOT tacitly agree to endure, in order to “hope” for security in my old age.

I say “hope” for security, because the reality that I’ve experienced is that the woman is sold a bill of goods about her value as an untainted virgin, and her family rushes her into marriage (either approving or disapproving of the male) in the hope that any pregnancies happen within the confines of marriage, so that the grand children are someone else’s responsibility to raise.

For all intents and purposes, they bless the union hoping 2 unfinished but physically mature children  will grow old together, learning to cleave to each other, despite life’s storms.

The family hopes for prosperity and joy for the young couple, and they pile on the pressure (with Mother Nature’s full backing and manipulation of the hormones) to hurry up and add kids into the mix.  All while raising the next generation of girls to desire a fantasy as they mature,

While I have no hands-on experience of the debutante ball or quincineara party, having chosen a solo path for myself, I do have opinions on the outcome.  But, there’s no surprise in that, is there ?!???!

We are programmed at a young age to think of things life and our corner of the village or society “owes” us.  Birthday parties.  Christmas presents.  Weddings.  Showers (bridal, birth, new home, etc.).  We are taught (at least in my culture) that life events are a series of routines and obligations.  That you show up for someone, and they show up for someone, and then a combination of friends and family show up for you, “when it’s your turn”.

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(See the people peeking out of the shack in the background?  That may be her reality for living conditions once the sweet 16 ceremony announcing her availability for marriage and motherhood is over).

For some of us, the rules have changed or evolved when we weren’t looking, and we never get “our turn”.  In my case, it was embracing Women’s Lib as a way to have it all and be beholden to none.  After all, I reasoned, my Mom did everything right and still ended up working all hours of the day and night (with the help of her wonderful girlfriends) to keep a roof over our heads, and the plumbing working, and the bills paid.  Mom broke the cycle of silence by opting for divorce vs. accepting disrespect and abuse from her spouse,  and it was her choice to walk away from the insanity of her marriage that was the saving of her and all of our lives.

In my case, the passing of my Mom and Brother informed me over time that my choice to move away from my family, to break with tradition, has left me without a home port.  I became an adult orphan when I moved 3,000 miles away from my home port, and I never knew it because I made a conscious choice to build a husband and child-free life, and I moved into a youth-oriented area full of single people who appeared to have made similar choices.  Plus, my ability to hide from my family’s censure or expectations (if ever necessary) was strengthened by weekly or as necessary phone calls between myself and family and friends, so the bonds stood firm.

It is only when the fabric of our support circle is ripped through the passing of another that we realize how truly connected we were to each other, and how important it is to mend the fabric of our bonds to ensure continuity.  It is only when we see who among our family or childhood friends refuse to meet us half way in rebuilding a bond that we realize what we’ve lost with the passing of a matriarch or sibling.

So, we build again and we hope again, and time passes.  Now, we are the older, single person in a space that appears to only value youth and malleability.

Married friends launch their kids into the world, building the next generation, and the topic of Sweet 16’s, Debutante Balls, or Quincinearas become important to the next generation of Grannies and Nanas and Moms, who see the changes in the world and want to pass on “protection” to the next generation of women by ensuring the girls go down a path of set expectations for “princesses” or “queens” about how a ‘real’ woman lives, the matriarchal center of her family through the ages.

As I get ready to welcome a long term guest into my home, a women with an ex husband, grown children, and few places to turn, I wonder at that mythical young woman making her quincineara.

She’s surrounded by family, friends, momentary party excitement, and a “village” trying to direct her choices.  Trying to ensure that she is married young, before she knows who she is and what she wants from life.  Trying to ensure that she gets pregnant quickly to continue her species, as well as plant the seeds with those much hoped for children for anticipating that they, in turn, will be the extra hands of caring and support that her parents and grandparents may need as the circle of life continues and those hoped-for babies grow to adulthood, and pick up the mantle of caregiving aspirations.

I, meanwhile, deal every day with how best to retain my independence, afford to age in place, and stay as healthy as I can despite my medical issues.  Child free, and without anyone emotionally and biologically programmed to care for me as my body continues to age and my birth defects continue to evolve and plague me.

As I visit “F”, who is coping with dementia, and try and share companionship and adventures, I reflect on her 3 marriages, divorces, and childless state.

As I visit “F”, whose affairs are supposed to be monitored long distance, from Canada, while her mind and personality slowly slips away, I wonder at all the thousands of choices that had to fail to bear fruit for her to be here, at this moment in time, independence gone, and depending on the kindness of strangers as caregivers in her assisted living facility.

I am thankful “F” made good choices that lucked out to her having financial independence until her money runs out (which will hopefully not happen until after her mind is fully gone), and I’m grateful that she has some connections to family in Canada who will handle her affairs to the best of their ability, even though they won’t get on a plane or drive down from Canada to see for themselves that she’s doing ok.

Meanwhile, I’m also opening my home to “CM” who did everything society and her family expected, but..

– who ended up divorced and raising her kids solo

– who had a husband who refused to pay child support

– who now has grown children struggling to build their own lives

– who is now 64, never really worked (beyond raising kids), struggling financially, and

– who has been couch surfing since at least 2009, trying to survive.

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”CM”, if the Park managers agree, will move in with me as we try and get her back on her feet, financially, by helping her qualify for subsidized housing so that her broken and no-longer-able-to-work body can have a place to call her own in order to age in place.

At some point, if she cannot get the help she needs any other way, we may have to force her into a woman’s shelter to allow her to jump the line for necessary housing assistance.  “CM” was supposed to get on various waiting lists way back in 2009, but I suspect that pride and hiding from her reality stopped her from following thru on those recommendations to get what she needed.  At any rate, I’ve agreed to give her 6 months or so in my spare room at Old People’s “Camp”, and we’ll see what’s possible for helping her avoid homelessness.

She’s a far cry from the unknown road ahead for that quincineara girl, but in the belief that it truly takes a village to help each other get thru each stage of their lives,    I’ll try my best to help her get on her feet and stay independent for as long as possible.

It what the village is supposed to do, when one of their own needs help.

 

 

Elder Abuse

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Today, I was supposed to go help my friend, F, reorganize her single large closet in her assisted living apartment.

We were going to sort through all the clothes she moved from her home, weeding out the ones she no longer wears or needs, and organizing her travel photo albums so that they would be on bookcases at floor level, instead of higher up on shelves in the closet where she can’t access their contents.

We were going to move the chest taking up space in her bedroom, blocking easy access to the closet, and we were going to find a way to store her granny cart and her vacuum so that they weren’t taking up valuable floor space outside her closet.

Instead, I’m going to be dealing with a panic attack over finances and trying to calm her down.

P, the controlling friend that has made all the decisions regarding F’s finances, is harping on the fact that F is spending “too much”, all while knowing she just sold her fully paid for home for $789k, and that the place F has chosen to live should run her about $70k to $80k per year.

Instead of treating F like an impaired but reasonable adult, P is refusing to answer F’s questions (regardless of how many times the questions are repeated), leaving F to play a tit-for-tat game of hiding her money (and pulling out a lot of cash so that she feels she has control of her money, since she’s no longer seeing monthly statements).

F’s determination to wrest control from the largely silent Canadian relatives who have all her money and power of attorney (now that she’s been declared in need of guardianship / conservatorship) is a drama that didn’t need to be.

But, I blame P as the instigator.

P is a control freak, in my humble opinion, and her unwillingness to answer F’s reasonable questions has lead directly to this crisis.

(Calling me last night about 8:30pm to cancel our get together today, and then calling me at 6:02am in a panic to discuss things, shows what stress F is being put under by receiving mixed messages and different answers from everyone in her life).

So, I’ll go see F later today as originally agreed.  We’ll work out a strategy for her to stay calm and – possibly? – get some answers.  And, I’ll give her some suggestions about how to stay calm and create a workable budget for weekly cash so that she has a negotiation strategy for dealing with the drama that I otherwise consider elder abuse.

Please, if you have an elderly friend whose elevator no longer goes consistently to the top floor…  just be kind.  Be patient.  Answer all their questions even if they’ve asked them 1,000 times.  Don’t bully them.  Don’t boss them.  Try to listen and be supportive without badmouthing anyone else trying to help them.  Just care enough to show up.

We’re all going to be in a vulnerable point at some stage of our life due to age, infirmity or financial vulnerability.  Just be patient.  Try your best to be kind and not make the situation worse.

 

 

The Buddy System

 

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Since I’ve been back from vacation, Herself has taking to cuddling more than ever with me.

While she was grooming me and patting my hair before I left, now she’s cuddling up with me and laying her paws along my neck, which turns out to be a very comforting gesture for both of us.

 

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My very good friend and former boss, F, lost her mind in the 3 weeks or so that we were out of contact.  I came home from vacation to find her phone disconnected, and a variety of packing boxes and kitty litter boxes on the patio when I stopped by to see what was happening.  Very disturbing.

Since then, I’ve found that she was conserved against her will and for her own safety due to increased dementia or Alzheimers issues.

While this is good in many ways, ending the whole, “How do you know?” debate over when to act and when someone is safe to leave alone, I’m really struggling with the fact that F, my former boss and mentor and friend since 1988 is being disrespected as part of being conserved.

Having tried unsuccessfully to get Las Vegas Auntie the help she needs while working through the system, I can’t say what’s being done to aid F is the best way to handle things, but I can also say that she does need assistance (and supervision, when she’s hit a dead zone in her brain and is speaking nonsense), but that I’m frustrated on her behalf because she’s not being included (no matter how frustrating it may be) on things which will impact her quality of life.

In my oh-so-humble opinion.

F picked the Memory Care / Senior Assisted Living Center where she’s been moved.  The problem is that she picked it across the street from her senior center so that she could continue to go to classes and events there, and she is now no longer able to go without company or supervision.  She’s been artificially restrained to the grounds of her care home unless someone signs her out, and that seems too harsh to me.

Don’t get me wrong – her private, 1 bedroom apartment is very spacious, and sunny, and they permitted her to bring her 3 cats, so her personal comfort has been given a great deal of thought:

 

 

So, things are not as dire as they could be, and she seems relatively happy.

F has always been a walker and a biker, and at 82 was still driving well despite her memory issues.

Now, all of that is gone.

So, I stopped by again yesterday to take her to breakfast – we were walking the .08 miles each way – both to give her an outlet, as well as give me some much needed exercise.

The day went well, and she asked me if I’d drive her to Costco to pick up her contact lenses after breakfast (she hasn’t had any in almost 2 weeks, making it hard for her to see in detail), and also asked if I’d stop by her home to see what’s happening since P, the friend who is handling most details, isn’t keeping her informed.

Not a problem, as long as my energy lasts.  NOTE:  I live in the boonies, so every day in life now involves counting my spoons of energy, and making sure that I stop before I’m tired so that I have enough energy left to make the 45 minutes (or longer) drive home.

Second side note:  F was an incredible boss and mentor.  Always polished.  Always organized.  We used to have an ongoing joke among her direct reports that we’d get “frantic-grams” during any involved project that wasn‘t moving fast enough for her sense of necessary timing for accomplishing or completing a task.

F was worried about her stuff – (even though she’d agreed that the stuff left behind was to be sold to help her raise some much needed money) – and she was frustrated about how slowly the workers were moving, dragging out the time involved in getting her home ready for sale.

So, I agreed to take her on both errands, knowing that I had signed her out until Noon and had to have her checked back in by that time, or I’d be getting a call.

Upon arrival, F was concerned her patio gate wasn’t locked.  She was upset that she found a box of Fenton  glass collectible shoes outside.  Ditto her doll chairs, where her teddy bears used to reside.

 

 

[P, the person stepping up to handle F’s affairs, is excluding Fran from progress updates, leading to F’s level of upset from not being kept in the loop].

So, we went through the house and she found all of her dirty laundry had been left behind, along with a few family pictures that would be of interest to no one else.

We also found 12 pair of contact lenses left behind, so that eliminated our need to go to Costco, as my energy was running down.

After packing F, the laundry and the family pictures up, we left her condo and returned to the care home.  No fuss.  No arguing.  Just very matter of fact.

Yes, F was using the wrong words to describe things (I’m in trouble and kept locked up because I “wander”, not because she is a champion “walker”).  Similar words, but with very different impact when used improperly.

Also:  Her doctor is an evil man who ordered her confined to her new care home.

Plus:  The police won’t let her leave her care home.

There is nothing keeping F in her new care home beyond the prison of her own mind, and her law-abiding personality for trusting those in authority.  She has a natural respect of those in charge.

F is confused, which is normal for people with dementia, but she’s also cowed (not her original personality), and not at all combative.

IMHO, F should be involved more in having her questions answered and her mind put at ease, but P does not appear to feel that’s reasonable to do.  P does not see the disrespect with which she’s treating F, making her frustration with the process worse.

I have no answers, as I know what happens when one can barely function (like Las Vegas Auntie), and is left alone to play in traffic without consistent adult supervision.

For now, I’m just concentrating on the buddy system for ensuring F gets out and about to enjoy life while leaving the heavier burdens in others hands to address.

Hopefully, things will level out given time.

 

 

Toxic Dynamics and Hope

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Talked to someone today, and found out that the baby’s situation is much worse than first disclosed.  I’m trying to wrap my head around the fact that she is absolutely confirmed as deaf, and that the jury is still out about being blind.

The powers-that-be are also trying to figure out if a calcification on her brain is cancer or part of her skull, and the hits keep on coming for this precious peanut struggling to survive.

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Getting my information all 2nd or third hand is also frustrating and distracting.  I so want to reach out to my Baby Sis, but being unable to get her to answer the phone for the last 3 years, I don’t want to be a stalker in her hour of need.  Either way I move – to reach out or to remain silent – I’m damned.

I realize that it’s not all about me, and I don’t want to be a distraction or cause anxiety in the breasts of my loved ones because I’m somehow labeled as “toxic” within my family.

Just a reminder – I don’t know why anyone isn’t talking to me.  I know I’m too cerebral for my Baby Sis, and that I talk too much due to our years of trying to get along and watching her roll her eyes at me.  So, I’m very much trying to be sensitive that this drama involves her son and her grandchild and stay out of it – all while knowing that patience will serve me best as I will be in town in the Fall, and can invite myself into the situation at that time.  Between now and then, though, my only goal is to not to anything to get anyone pissed off at me so that I can’t visit in person.

But, as I get new information about the baby and what may be going on with her health, I think about Helen Keller and all that she did to grow and prosper despite her disabilities.  While vulnerable, she made it to a healthy old age and appeared to be happy with her life despite its challenges.

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However, I’m stumped by the difference in their origins.  To quote Wikipedia: “Helen Keller was a normal child until about 19 months, when she contracted scarlet fever that left her deaf and blind”.  Since that won’t be the same start that Baby G has, it’s not helpful other than as a way to know that it’s possible for our warrior girl to be all that she can be if she has the will and the cognitive ability to overcome her challenges.

So, I keep on looking and come across someone, finally!, who was born deaf and blind and in current times who has been able to overcome her handicaps:  Haben Girma.

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However, even Haben’s story isn’t likely to have the same origins – Haben has some vision and hearing – and we know that the baby is likely to be profoundly deaf, and aren’t yet sure about her vision.

So, back to the drawing board.  More thoughts about Helen Keller, educating someone who cannot see or hear, and now positive info about Perkins School for the Blind – still in operation in Watertown, MA – and now offering expanded services to blind and deaf students in a very big way, as evidenced by the quick tour of their website with a birth to toddler age-focused program.

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We still don’t know the depth of her challenges as this peanut fights to be all that she can be in this world.  But, regardless of what the challenges may be, if she’s able to learn and she’s able to be helped, I am confident that my #1 Nephew and his wife will do everything in their power to give Baby G every opportunity to prosper.

Having a world-famous school in their back yard, too, doesn’t hurt for ensuring that their baby will be given every opportunity possible to thrive.

None of this solves the fact that my Baby Sis still isn’t talking to me.

None of this solves the fact that I want to reach out to her and try to offer comfort in her hour of need.

After 3 years of trying to reach out and being rebuffed, though, I have to accept that I am now stalking my own sister and need to stay away so that I don’t add to her stress when she’s already trying to cope with more immediate family concerns.  So, I send this old Irish blessing out into the world for her:

Bless you with gentle rains in Springtime, warm breezes in Summer, a cozy fire in Winter, and a good friend beside you – always.

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Baby Sis has some wonderful friends in her life, and I hope (since I can’t be with her), that she’s availing herself of their comfort and council during this difficult time in the lives of herself and everyone she loves.

 

 

 

 

 

Valganciclovir Risks and Costs

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As written in my prior post, Home Front – Medical Ethics, the new baby is on some type of anti-viral to help her fight off the effects of cCMV.

When one starts doing their research about potential costs and side effects, it gets pretty scary pretty quickly.  While the most publicized antiviral for cCMV is listed as Valganciclovir or Valcyte by Genentech (yet another company I have been honored to work for as a freelancer), the list of risks and side effects are overwhelming.

To quote:

The most common side effects of VALCYTE in children include:

  • diarrhea
  • vomiting
  • fever
  • low white blood cell counts in blood tests
  • upper respiratory tract infection
  • headache
  • urinary tract infection

That’s a lot for anyone to have to deal with, never mind a newborn with pre-existing health issues.

The average cost of the medication is outrageous:

Valcyte costs

I’m thankful that both my #1 Nephew and his wife have excellent jobs.  I’m also hopeful that both of them have excellent insurance that will help with the ongoing costs for dealing with their fragile baby girl.

I have to think about their first child, and how much the situation between these two children is echoing my brother and myself for birth order, for wellness issues, and for the next chapter – the financial burden of caring for their daughter while they figure out what she needs and how best to provide everything necessary to give her the best start in life.

Given my own struggle with pre-exisiting conditions, though, I have to hope that the future will be kinder to this defenseless child for enabling her to be able to afford to care for herself for the rest of her life, once grown.

I have to remember that time changes perspective, and that anything is possible given time.

Miracles Take Time

 

Home Front – Medical Ethics

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As I have written in many other posts, I am grateful for my life.  I am grateful for my Mother’s choice to fight for me when I was born seemingly healthy, and later appeared to have birth defects that needed significant attention.  That doesn’t change the fact that I wouldn’t willingly give birth to a child with a high likelihood of health issues.  And, it also doesn’t change the fact that I support parents of disabled children for having the courage to make the hard decisions for themselves and their children.

Now, as originally written about in Pariah II, there has been another generation born into the family with birth defect indicators, cCMV, and it’s now a wait and see period of time as G’s parents work to ensure that the baby has everything she needs to fight the virus she carries, and to have the resources she needs for the best life possible.

I’ve been doing a lot of reading since I learned the news about G, and the part that sticks with me the most is something that’s bringing back memories of my Mother, Betty.  Oh, how I wish she was still with us for her wise counsel in getting through the next five (5) years, minimum, as my #1 Nephew and his wife work to ensure their baby girl is as healthy as she can possibly be.

My Mom gifted me with a phobia about germs.  No kissing on the lips.  No sharing of food or drinks.  Careful attention to sanitation and details when hand washing dishes.  You name it, Mom was on top of it.

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Almost to the point where I had my own phobia about shared germs from kissing and such, putting the kibosh on a comfortable sex life in the age of HIV and AIDs until I could come to terms with sharing the simplest of germs with my partner.

Herpes contageon made me crazy with dating and trying to determine the honesty of my potential partners (yes, I was anal enough to demand a “clean” and recent STD test results, or there would be no getting nekkid together).  No way was I dealing with catching anything from a liar.

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Seeing all the information about how easy it is to catch CMV, I have to wonder if my Mom was aware of the risks (having raised me, lost a couple of pregnancies to miscarriage, and having lost a younger brother to SIDs).  It’s times like this where I wish the older generation was around to provide guidance to the great grandchildren’s parents about things that have been lost in the mist of time.

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There is so much positive information, along with so much scary information, that I have to keep my mind focused on the fact that they can treat much of this with anti-virals today, that she is not wearing a feeding tube in her baby picture, and that my #1 Nephew has said that he’s overwhelmed by the bad news but determined that his daughter will be all that she can be, regardless of whatever happens.  No disease or birth defects will determine her destiny.

Having read all that I have about things the mother coulda / shoulda done to prevent the contraction of CMV in the first place, I can now see why #1 Nephew was so quick to come to his wife’s defense and say that how the baby caught the disease was “water under the bridge”.  Absolutely right, and I never for a moment thought about blame – not just because I didn’t know the baby was here and was ill – but because blame doesn’t change reality.

I absolutely agree with his fighting stance on behalf of his wife and daughter, and I hope that the baby ends up healthy and defect-free.  I have to pray that her hearing and vision and cognitive abilities will not be effected, and that her anti-viral medications work wonders for her during the next five (5) years of her life as they wait and wonder and fight to give this child every opportunity to be everything she chooses to be in life.

cCMV positivity

As shown in the image above, the statistics look good for early intervention preventing many of the side effects, so now we wait and see what the Docs are concerned about, what impairments present themselves, and whether or not the intensive antiviral protocol helps her fight off the risks of her disease.

Interesting cCMV Blog:

Grace’s Story  of the journey through a cCMV baby’s life

When you look on Insta-gram, there is another little girl, Lilah, all over those pages as her Mom shares her ups and downs.  Ditto for all the other children fighting the effects of cCMV on their lives.  So many happy children, finding options for great quality of life.  I’m hopeful that my #1 Nephew and his wife will be able to field this challenge and find their marriage stronger than ever as they pull together to raise both their children to be all that they can be in this world.

 

 

Pariah II

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I think I’ve made it clear in prior blogs that I was somehow eased out of the family, and no one has had the courtesy to let me know why.  Background on this tale is somewhat covered in earlier blogs:

Pariah – December 23, 2017

You’re Missing – October 5, 2017

At any rate, Nephew #1 has been expecting his second child, and I have been thrilled that he and his wife are enjoying parenthood, and getting ready to welcome another child.  I only found out they were pregnant at New years, when they posted a family picture and my niece-in-law had her hand on her clearly pregnant belly.

Me being me, I saw the picture and immediately sent a private note, asking if they were expecting another child (yes).  They said the baby was due in mid-March, and I congratulated them on the upcoming blessing, as well as added a comment that I would look forward to finally meeting their first child and their newest child when I came home for my High School reunion in the Fall.

Fast forward to yesterday, and #1 Nephew publicizes a fundraiser for his upcoming birthday, noting that he’s raising money for cCMV.

* * * * * * * * * * *

Story:

For my birthday this year, I’m asking for donations to National CMV Foundation.  Our little Gxxxx was diagnosed with cCMV las week, and I’ve chosen this nonprofit because their mission means a lot to me and I hope you’ll consider contributing as a way to celebrate with me.  Every little bit will help me reach my goal.  I’ve included information about National CMV Foundation below.

Our mission is to educate women of childbearing age about congenital CMV.

* * * * * * * * * * *

So, knowing that I hadn’t seen any kind of birth announcement, the phrase, “Our little Gxxxx” went completely over my head.  I just thought it was a comment about someone he knew and not his own child !  Oblivious, I sent him the following private note asking about CMV and wondering if my #1 Nephew is also immune and doesn’t carry CMV in his blood.  I also ask if the fund raiser will be open until the end of the month as I don’t get paid again until then.  Harmless, if one doesn’t know that the baby has been born.

Background:  I am CMV-negative.  Years ago, I was told that CMV was a form of the common cold or flu, and that up to 50% of the population has this antibody in their bloodstream by age 40, and that 75% are infected by age 75. Someone without CMV in their blood (me) is highly desirable as a blood donor as my blood will not hurt immune-compromised individuals (babies, the elderly, people with HIV or AIDS).

Additionally, I’m an AB- blood donor, (very rare, and a universal donor), and when one adds in the fact that I am CMV-negative, the blood bank vampires love it when I come in to donate.

Having been courted to donate platelets and not just whole blood due to my CMV status, I also learned that a 2nd cousin on the Scot’s side of the gene pool was also CMV-negative and had been providing apheresis donations for years.  I have some skin in the game, but from a completely different context than the emergency that is occurring in my family, plus I’m once again excluded from knowing about a crisis or situation in advance, and too stupid to realize the nuances of the bigger issue in how he phrased his fund raising request.   FYI, my #1 Nephew is very generous, and gives to many causes throughout the year.

* * * * * * * * * * *

So, I send him a chatty private message and get back a very formal / cold reply:

“We have no idea where the virus was introduced.  Most likely it was transferred via saliva from (their eldest child) to (his wife) via another infected child at daycare.  I am likely not a carrier as (our older child) was fine.  Either way this is all just water under the bridge at this point and what’s done is done.  The fundraiser will be open through 3/13. Thanks.”

I realize that one cannot get accurate emotions off email and private messages, except… I spend most of my spare time writing and trying to convey emotions.  Lack of emotion IS emotional.

So, I’ve clearly put my foot in something and I’m working blindly.

My next reply (trying to keep it very brief is:

Ok, thanks.

I actually didn’t know (your wife) had it (never put 2+2 together).   just assumed you were a blood donor who didn’t carry the CMV virus.

Since you’re likely not a carrier, please keep that in mind when or if you donate blood as your specific non-CMV blood can do a lot of good in the world if you choose to donate.

(Silence.)

(Echoing silence).

– Clearly, I didn’t congratulate him on the birth of his child as I didn’t know he’d already had the baby !

TODAY,  the drama deepens as he finally publishes a birth announcement:

* * * * * * * * * * *

Gxxxxx __________ __________ was born 2/26 at 2:40 PM, weighing 4 lbs 5 oz, and 17 1/4 inches.

She spent 11 days in the NICU at W______ Hospital and was cared for by some of the kindest nurses and doctors I have ever had the pleasure to meet. She spent time in the NICU due to congenital cytomegalovirus (cCMV) which she likely contracted during her first trimester.

We are just at the beginning of a long road with many appointments, follow-ups, and information to be heard and accepted. I am confident we will “get by with a little help from our friends”, and feel fortunate to be located in the Boston area with access to world renowned hospitals and pediatric specialists.

Whatever the further testing reveals, my daughter will NEVER be defined by a piece of paper or medical opinion, and I strive to be an advocate and champion not only for my family and Gxxxx, but also for all the other children and families forever changed by this preventable disease.

I will update you all as the news comes in, and when I have the strength and courage to do so. Please keep us in your thoughts, and please join me in raising awareness for the National CMV Foundation.

* * * * * * * * * * *

WTF ! ! !  My instincts were right that I’d stepped into it with both feet given the coolness of his response.

Once again, I’m excluded from inside information, and am left looking over the palace walls, informed only when the rest of the non-family members of the world are informed via a general posting.

So, I send him an apology for yesterday’s message, and note that I didn’t know the baby was here.  I apologized for the poor timing of my questions regarding the fundraiser, and assure him that he and his family are in my prayers.

“Thanks”.  His one word answer, has a world of condemnation in it.  Or, I’m just cringing from putting my foot in it, yet again.

I know that this baby’s health issues are much more important that my hurt feelings.  While my #1 Nephew hasn’t said what’s going on with her, she was in the NICU for 11 days and she could end up with Downs-like complications, hearing and vision issues, etc., etc., etc.  I’m sorry to be a Debbie Downer to see it as more family genetic issues going on into the next generation, but that doesn’t mean that I don’t want this child to be all that she can be, and that I don’t hope and pray that she has no lasting harm long term.

I am still hoping to be able to visit with them when I go home for my High School reunion in the Fall, but this situation really emphasizes that I have to step away from my family and not push them as they clearly don’t consider me part of their family circle any more.

Why is it so hard to get that through my head???

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