It's February ~ Happy "sweet" sixteenth birthday my beloved daughter!

Not only is this month (6th) my deceased daughters birthday, but it is also the anniversary (14th) of the renal failure/stroke (2014). Time flies and often I wonder, "am I a quality/worthy person? Am I Teflon ~ stronger, wiser, calmer; more tenacious and forgiving? Do I thoroughly comprehend the nature of life? Do people actually 'see' me? Has my struggles been in vain?"

This month remains the month that I dread the most - emotionally. Intellectually, dual[ly], I've come to embrace more for it's regular delivery of added "enlightenment". And I don't use that term religiously (honestly, I avoid religious or political vernacular purposely - those are the thoughts too personal to share in such a forum  as it is never my will, my intent to convert or deconvert anyone from anything of  needed comfort or  traditional ideology. And I always appreciate courteous reciprocation ). As I was sharing...

For it is THIS month where I experience the most growth -- due to premature loses - in an offspring (a future) and in health vitality (present). It is in my quiet melancholy (I believe most parents will always long for a child they've lost). Pain, it is accurate, not only can build physical muscle, but the mental muscle develops as well. It is now, through over a decade of silent mourning have I come to terms with what is and what isn't. My child had life. And a healthy, loving one. She came knowing and "feeling" loved.  With this knowing[ness] is how she gracefully exited this world - suddenly and unexpectedly while in my arms, asleep from nursing at my breast. Publicly in front of her dad and brother. An enormous, a hauntingly devastating and unforgettable tragedy.

Health wise, my condition has taught me, really it has reminded me how precious life is. It can end in an instant. And the time that you have NOW, is the only time guaranteed (regardless of personal ideas or beliefs. Goodness or not. Pink or purple). No one is privileged exemption.

So having survived the worst loss imaginable, I was fully prepared to endure what awaited me down the line - renal failure, stroke. Yet on rare occasion, honestly, I do cry out, "that's enough!". Human...

Sighing! On this particular day (the 6th), we continue to celebrate in spite of. Friends and family quickly faded so it's just us and that's all who'll really understand the surreal journey. The courage required to keep going through adversity. Staying peaceful and positive and productive.

Yeah, we honor her date of birth similar to how most of the world may honor great leaders or messiahs. On this day (I'll be in the dialysis chair - not my normal day of treatment. Just have too much fluid buildup - which is a potential danger), we purchase or try to bake a cake (yeah, right). Purchase balloons and flowers. For gifts, we usually give our living kids something special on this day. Random acts of kindness is encouraged in her memory. Meditate or whatever you do to go deeply inward - quietly to self reflect, evaluate, cleanse, to heal.

When I see other sixteen year old girls, silently I may watch. Catch myself staring.  Hoping they are loved, they are supported, they are cherished; their overall existence, appreciated. I'm grateful for the ability to observe them for it privileges me something of a gauge on how my daughter would/could have been had she lived. The music and books she'd enjoy. The way she may have smiled, smelled, laughed; dressed, styled her hair. Her successes, challenges. Her quirks, peeves; her interest. The substance in friendships she'd acquire; the relationship she'd have with her older brother, younger sister; her dad.

The wondering continues, while the agonizing intensity of aches and breathlessness; difficulty swallowing, performing lessens, but never completely vanishes. The void, is always there. The longing remains. She'll never ever go to high school, finish college; get married, experience motherhood. A mothers arms remain empty, a fathers heart remains torn.

Amazing siblings left with confusion, lack of understanding the enormity of such a loss, but have lived with the observation of what love can do when life permanently rips something so priceless without warning.  Without justifiable fairness or reason. May they and others come near'r to human consciousness and authentic compassion. Contribute positively to the planet partially in her name.

Into my cocoon of solitude and gratitude and lamentations I go. May I emerge as a beautiful butterfly. May I wisely evolve. May I rise like a Phoenix!

I was recently thinking while in a mindset of frustration, "I wish a respected and trusted medical professional could/would explain fully to my husband and child (one still living at home, in particular) in detail  how I am [mommy] is quietly challenged in some capacity every second of the day either  physically, mentally or occasionally, emotionally.

Sometimes it seems like, my "no excuses, no complaining/whining" demeanor means I'm fine when in actuality, I'm not. Oftentimes there is complete chaos in my brain as I try arduously to navigate through my day competently. I disdain "needing" help, yet with current health issues, I need help.

Truthfully this illness taught me how to allow help without feeling awkward, embarrassed or dependent. After all, I can no longer do all that I use to do, and how I use to do it.

This day, I lashed out angrily at my daughter, then my husband. I lamented how it seemed they were not giving me the mental spaced I needed  while I was going through some "thought" difficulties in my head. My daughter was behaving extra needy. Her needs and wants are typically met as my husband and I try to cultivate a freely loving and giving environment and welcoming space for our kids. However some days I simply have nothing to give. I'm the need[er] the want[er]. Not privileged the type of caring and giving or nurturing, loving parents myself, I've learned early on, my own sort of coping skills for emotional survival. I go inward for comfort. I get quieter. Stillness.

In the very moment filled with frustrated irritability, when I was thinking more about self. Miraculously and instantaneously I was overcome with a grand feeling of natural compassion. It is not atypical for me to feel compassion for others, rarely do I feel any compassion for myself. But I felt a sense of extra compassion for my husband and daughter. After all, they are watching me now. And they have seen me then. They are definitely knowledgeable that mommy is "different". Perhaps they too have found their personal way to cope. And me still being here may give them comfort even though I am not the same, yet they love me completely and unconditionally nonetheless.

I've always worried about the emotional, physical, financial burden I must be putting on them. Especially my husband, I worry about his well being continuously. And with my kids, I worry about "appearances" when I publicly stumble, struggle in speech or in movement. I don't want to cause any shame or other feelings of discomfort. But today I felt something deeper in sense that, they can't imagine what I must be going through - internally. Rarely do I show or speak about what I am really feeling if it's not a feeling of my usual upbeat personality with genuine gratitude and optimism.

But they will never "really" know unless they were inside my body.

Yet they too are learning and growing and evolving in some form or fashion. Who am I to try to control their perceptions or perspectives. Not that I do, but any expressed anger is only fear revealing itself. So in wisdom, I immediately go inward. What is it about "me" can I learn from whatever this is. Somehow I may have slightly digressed.

This awareness was profound and necessary. The day is still early and there is still time to be the mom/wife they needed, wanted earlier. I have no problems giving. Especially to them, people who reciprocate and appreciate that unconditional love expressed 24/7 through thought, word or action.

Daily I have to remember, they are still adjusting too. The me they had was stoic yet gentle and loving. Keenly observant, sincere. Understanding and nurturing. Strong, courageous  despite daily chronic, debilitating migraines and an empty heart due to parental bereavement - child loss. They've seen a sharp mind and wit. An intellect coupled with a child-like curiosity to learn more about people, places, things, ideas and beliefs. Thankfully, I remain in total awe with life. When you think you figured out one thing, something seems to humble you as a reminder, it's impossible to be all knowing.

With reason, it is apparent they still have all those things in me, just different. Impressively they have managed to live with the change. And I guess, my strength and perseverance, has made this adaptation easier. So I must work harder at learning to forgive myself for those times I am not at my best. Life has proven, I'm just a flawed person trying to do the best I can with the cards I've been dealt, just like other humans I share this beautiful planet with.

After an unplanned, lengthy delay in posting, bare with me as I regain my bravery. My ability and knowledge to type - plus, operate a PC. To blog; plus, formulate sensible sentences and paragraphs...

A host of reasons explains my hiatus. Too numerous, some too trivial to mention. Initially I was unwell (not dead, thankfully), then uninspired (thoughts became too dark, at one point), then too exhausted (from dialysis treatments, to daily physical/mental obligations) and unfortunately my PC won't connect to internet from my bed. Time and life just got away from my joy and commitment to document, sharing my journey through dialysis, motherhood/wife, homeschooling, and more.

At this point and time, my health is of quality status. I can't believe its already been nearly two years since date of diagnosis - February 14, 2014. I feel so alive and grateful everyday. Luckily surviving a frontal lobe stroke helps challenges my memory in a beneficial way, which I've come to appreciate. Fortunately my brain can't hold on to much. I say fortunately because many things in my life I'd rather forget. So current painful moments don't last. Eventually pain is replaced with a more pleasant memory. Just looking on the brighter side of things ~

Some good news, months ago I was officially listed on transplant list. I remain very optimistic about my future. Plans were to learn one or more new languages while on dialysis. But lately, I've been passed out sound asleep through each treatment. Arrgh!

Each morning (my treatment days are for three full hours every M/W/F, rain or shine, holiday or not starting promptly at 4:45 a.m, My dear, sweet and loving, even tempered husband patiently logs all my meticulously packed necessities into the unit  -- huge bag (I'll list what's in my dialysis bag in future post), my language CD's (and CD/DVD player). My bedding for comfy blue dialysis chair: sheet, blanket, U shaped pillow, blanket, cowl, socks. His comfy lawn chair as he sets right next to me for full treatment watching and monitoring EVERYTHING. He also lugs in several books - because, you know, I plan to read them all that morning.

That's all for now. Happy to be back. And, happy belated New Year!

Still experiencing extreme hair loss. Arrgh!

Hair began to rapidly shed around six or so months after 2014 health crisis. That December, prior to 2015, I abruptly shaved my head - completely bald.

It was almost comically showing up at my 4:45 am brightly lit dialysis center with absolutely no hair. The stunned look on everyone's faces... I should have gotten permission to YouTube the moment. Of course no one wants to be offensive or stare. Yet I welcomed any dialogue or inquisitive questions. There were a few compliments regarding how attractive I still looked with no hair. I didn't/don't care too much about physical aesthetics. I've drastically shaved my head like this before - 2000, after my first daughter's death. Grief was too overwhelming to keep my long, thick, healthy locks then. And now they are gone because of illness in body not in heart.

Being a licensed hairstylist makes this loss frustrating. During my tenure as a successful, self-employed hairstylist, I had a reputation of restoring or rejuvenating hair to a natural, luxurious beauty. As usual, the benefits of who I am as a person typically better serves others, which is the story of my life. I'm okay with this phenomenon.

My nephrologist prescribed vitamins for the hair loss. It stopped the rapidness of the shedding, even though my hair length now is under two inches, I can still feel the wiry shedding left in my hands occasionally when I shampoo. *Sometimes this makes me what to shave it all off again.

As a precautionary measure, I use coconut oil on my hair (and my body) immediately following shampooing or bathing. Dialysis patients tend to have regular issues with dry, chafed skin "probably" due to fluid restrictions and the overall nature of kidney disease.

Honestly, the health (sometimes the thickness & length) of my hair is one of the qualities of the loss of health I kinda miss most. Being a hair artist and a creative person, my hair use to give me something extra to do creatively. Like I tell my kids (whose hair I tend to transform in its natural state frequently), our hair is like "magic hair". People want to touch it because it is unique and amazing, a quality to adorn, to be proud of. So like me, their mommy, they see the gift in be different. I guess without my hair now, there are other things that make me stand out (aside from previous female baldness), even though I'm not trying. Usually, I'd rather just simply fit in. Seems easier that way.

Good News! Test, labs came back normal. Thankful.

Had a precautionary D&C after some alarming post-menopausal bleeding. Last menstrual cycle December 2013. Initially sad, anguished at the seemingly abrupt finality of my cherished conception days (maternal. I longed to have more children. Enjoyed being pregnant/nursing & now rearing), nonetheless, I was slowly but surely becoming accustomed to life without pads or tampons. In my late forties and already dealing with situations commonly seen in the elderly -- usually I'm the youngest one in medical waiting rooms for the type of specialist I'm required to see. Following hospitalization(s), during doctor's appointments I was moving about slowly (with my husband's assistance) on my walker or being wheeled in on my wheelchair alongside the other aged patients. *Grateful those days of frustrating dependence are fewer and far between. So thankful to be gaining better mobility and longer lasting strength. *My kids were/are raised hearing me say, "whine & complain less & be thankful for the quality of your health more". Remembering back, once I became cognizant, the reality of my circumstances were troubling. Therapy. Dialysis. Renal Diet. Fluid Restriction. No more contact sports. Exhaustion from poor/non-functioning kidneys. Can't control or fix the situation. Have to rely on others. Disfigurements (AV fistula/Hemodialysis catheter). Aneurysm on my aorta (monitored). Medical cost & bills. Altered lifestyle. Test after test. Surgery after surgery. Pain, discomforts, anxiety/fears with each. Currently I'm un-phased by it all, majority of the time.

I use my son's old baby food jar (from the late 90's; yes, I still have them) to monitor my liquids. Fearful to go over limit, I drink only to take medications now. Hold back from water fountain at the gym. Slowly suck on water iced cubs (limit four) throughout the day.

When out, I take sips from my husband's beverage. Or I plan ahead by not having any other liquids for the day. This is an experiment. I just hope this possibly ridiculously rigorous idea works. 

It's the end of the weekend. I'm hot. I'm uncomfortable. I'm thirsty. Too afraid, too cautious to consume any more liquids. *Need to invest in a home scale to better monitor any fluid gain.

Hubby and I were fortunate enough to finally be able to go on a spontaneous date night. Thankfully our eighteen year old son is home to supervise our eleven year old daughter.

Went to Black Angus for dinner. I had rib eye steak and salad. Ate half and boxed the rest. Sipped on my husbands Arnold Palmer, divulged in the pleasure of a swallow or two of an adult fruity beverage; and didn't drink any of my requested water w/ lemon.

Regardless of my mindful regulations, I'm still panicked to drink anything today (even these two ice cubes) as my regular weekly (Monday, Wednesday, Friday) resumes tomorrow. I don't want to risk showing up too heavy after the required before/after dialysis weighing.

After dinner we went to a movie, saw The Gift, staring Jason Bateman (quality actor to watch on screen) and Rebecca Hall (cute haircut I was fantasizing throughout about - wondering how would it look on certain people). *There was this female adjacent to me with  one of those huge, cold, pricey movie drinks (I could hear the clashing of the ice) which I secretly craved. Being a frugal person, the enormous cost prevented me from asking my husband for one. Cost, size disciplined me for sure.

The Gift reminds me of the psychological and physical power a bully or mean spirited person has over their target/victim. The long lasting damage negative actions does on the victim. The journey of both parties being [wounded people] through denial, remorse, anger vengeance, forgiveness.

Once the movie was over, I noticed the longer lines, the diverse crowds, police presence over the movie, Straight Outta Compton (starting at 11:15pm). Of course this energy provoked more curiosity in me, so I asked my husband if it was okay if we stayed later to experience it.

We joined the line of mostly young people. While there, I stood nerdily awkward, [holding the yellow basket I keep all my fun activities and necessities in; wearing my peacock blue knitted triangle shawl around my shoulders] knitting a burgundy Ascot hat in the round to pass the time.

This movie was probably better than most expected. I enjoyed the quality of the actors {a former inspiring thespian myself}, the pacing of the film and the throwback beats - old-school rap, favorite. Being a native of Compton myself, a peer (age wise) of the characters depicted in film, growing up in the era of the infancy of such sounds, I could remember most of the locations and situations depicted.

It was so cool having modern times gadgets while in a movie theater. Not only did I have in my basket a yarn project, I had my tablet (Samsung) and my cellular ( Iphone). During our date, I periodically texted my son inquiring how everything was going. My daughter has a very strong, determined personality; while my son, more laid back and chill, yet assertive.

I felt young, rejuvenated arriving home in the 2 a.m. darkness & stillness of the night. Certainly we must cease every opportunity with our son being home to supervise (aside from once or twice, we have never allowed [risked] anyone to watch our kids, not even relatives). This way they'll have their time, being close despite age difference. And we'll have some much needed and earned adult time.