Monday, October 21, 2013

My Shell Story

I have never put this story in writing though I have shared it verbally many times as the "look how crazy I was"  funny antidote.  It took me years of self-realization to actually appreciate the awesome significance of it.  

Preparing to share brings back some very unsettling feelings about that time in my life.  I take a few deep breaths as I begin to write.  First, allow me to paint a picture for you of what my situation looked like back 2005. 

By 2005, I had moved twice in the same town, renting always, maintaining 3-4 bedrooms in order to give my children some sense of stability.   Not to mention a place for all their stuff!   My children were 23, 21,19 years old at the time..  College, college, college.  One living home and going to college and working.  I was divorced - out 5 years by that time.  Since I was self-employed and my ex-husband was.....( you can fill in the blank) I received no alimony and no child support after my children turned 18.   Just so you know, all three of my children worked and supported themselves while in school.  They knew I couldn't afford extras and never asked me for money even though if I had any extra it went to them.

I had my same business, the lactation center which I was struggling to keep open.  I was working an additional job
 (30 hrs/wk) in an emergency center in order to get health benefits for me & my kids.  So my typical week would look like this: work  at my lactation center 9-5 M-Sat.  After close at 5pm, go directly to my second job the ER and work until 11 or 12.  Then I worked all day in ER on Sunday.  Yes, I was exhausted!
I was involved in a 3 yr. relationship with someone who was separated, not yet divorced, he had 2 children, one of whom lived with him.  When I first started dating him, my sister said, "He's basically interviewing for a wife and a mother for his kids." At the time this seemed OK since I was looking for someone to take care of me and my kids as well.

He took me to Paris & Germany the prior fall because he had a business trip.  During our stay in Paris, he surprised me with an engagement ring.  (mind you he wasn't divorced yet)  Very romantically done, we were on a boat ride at night on the Seine. The boat stopped to drop us off right at the Eiffel Tower, everyone gets off and he asked me to marry him  alone on the boat.  I shoved it on my finger ( it was too small) while I was thinking I didn't like the setting much and would never have picked out this ring.  So when I got home from the trip, people said, "What that on your finger?'  I would say, " Oh yeah, I guess I'm engaged."  - Ha!

I know I sound like a bitch but this guy was constantly buying stuff (big dollar store guy)) and planning things and doing stuff without my input at all. Being a saleman and CEO, he was tenacious to say the least. He was a non-stop, busy person, hyperactive, constantly wanting to eat and do things.  He always wanting of my time which of course I had little time to spare.  It was like having another teenager!  But his very needy, very smothering and controlling ways looked like wonderful love to everyone else.  His son who was a freshman in high school at the time, never saw his mother so I was his "replacement" mother (just what i needed another child) His son was with us all the time.  Again, I know that sounds harsh but frankly I feel no emotion now as I write just the truth.

So the picture: a stressed out, broke, exhausted mother of three, engaged to the wrong person.  And then what happens?  I get breast cancer.  That's right, at 46 years old, I was staring at a pathology report that read, ductal carcinoma.  This time the diagnosis was about me ,not a family member, not a friend, not a patient..

My first thought was for my children.  At least, they were grown and not dependent on me for their day-to-day care anymore- they would be OK without me.  My poor parents. Surely, was lucky to be in a dedicated relationship - some people are alone.  I know it sounds morbid but for me My fiance (wow, that's is scary) jumped into this new situation like he was tackling a quarterback.  Me, being the quarterback.  He was all over it and all his anxiety came with it.  His father had just died the year before and he was still reeling from that.  Lots of baggage from his marriage and family dysfunction all around.  

I got through the surgery just fine, physically.  Emotionally, I plowed through my life of responsibility and dedication like nothing happened.  I checked off the breast cancer like it was a chore on the list of things to do.  Never looking back, not once. 

As the months go by, my fiance slowly starts to fall apart and our relationship begins disintegrating.  On the outside, he appeared like a concerned lover, the best fiance ever.  He came to all my doctor appointments and was around me constantly.  Which I know took the slack off my children and parents.  But why did I feel like I couldn't breath, like i was being smothered.  I wanted to feel lucky, here I escaped a serious illness in time and people who loved me surrounded me but I was smothering.  I felt like he wouldn't let me "own" my cancer - like it was almost his and not mine.  I was the one with the surgical scars but did I really take the time to process, to feel the impact of those sutures on my life - was I allowed to? or did I not allow myself to.

Well, looking back I can't blame anyone but myself.....I told myself for many years that "he wouldn't let me own it - that's not fair"  when in fact it was me who wouldn't let me own it.  This is where we get to the shell story....

So that summer, 5 months after my bi-lateral mastectomy, my fiance and I rented a house on the beach in Florida for both our families.  This was my first vacation and I looked so forward to it.  

The beach was loaded with the most beautiful shells so I started picking them up.  And I kept picking them up and picking them up.  Before you know it, the entire beach house was full of shells.  The kitchen counter and tables, chairs and such.  I proceeded to sort the hundreds of shells by shape, size and color.  No one was allowed to move or touch the shells.  Then I decide I will make shell crafts for everyone I know.  So I went to Michael's and bought frames, boxes, crosses- anything I can fix a shell onto with a glue gun.

In the moment, I perceived this as being perfectly normal behavior for someone on vacation.  After all, one should be able to do anything they desire and making crafts is creative and healthy.  Maybe I admired them because they were so beautiful and perfect and I felt far from beautiful and perfect at the time.   Maybe it was because they had traveled a rough and tumble journey just like I had.  Maybe it was because I could save them from getting crushed and damaged because I felt crushed and damaged.  Who knows but they attracted me like precious jewels from the Nile.

Everyone there was quite tolerant simply because they loved me.  Several attempts were made to change my mind or curtail my efforts but they were just met with indignation and total resistance.  This was my thing so just let me do it and be grateful for you homemade shell gift!  

I made a ridiculous amount of crafts which I boxed and shipped home to give away.  I was quite proud and excited about my crafty accomplishment.  Then, like with most things I never thought about it again.

It wasn't until years later that I realized how "over-the-top" my behavior really was.  That  if I had done my emotional work, it wouldn't have been necessary to collect practically every shell on the beach, obsessively sort them and make enough crafts to put Michael's out of business!  If I had faced the fear and embraced the vulnerability instead of run from it, I could have enjoyed my vacation like a "normal' person and feeling more at peace with myself others 

 Clear as a bell to me now, I  inconvenience everyone on vacation, neglected them all because I desperately needed to control something.  Why? Because I felt so out of control.  Six months prior to that vacation, things were said to me, written to me, done to me that were very scary and that I had no control over.  My body was sick and damaged as well as my soul.  I had not processed any of it emotionally and so I took it out on the shells.  Those magnificent little shells had no idea they washed up just for me to use as an outlet for my trapped feelings.   These shells were where my grief, fear, anxiety and sadness were glued to.  Like a mosaic, some of my  hopes and dreams as well.

Nope, I never married, we broke up within months of that vacation and thankfully I am cancer free.  I share my story to show off my authenticity and imperfection.  Something I would have hid before and been ashamed of - not anymore I wear those like a badge of courage.  And now when I see shells at the beach I don't pick them up - I just admire their beauty and secretly thank them for the lesson they taught me.   

I have to admit though whenever I see a craft made out of shells I can't help but think- 'I could make that!"

Surrender Box

Julie presented this great idea after reading a recent blog about making a Surrender Box. 
 Divine inspiration was responsible for our box design.  It was very important to me that it be representative and mindfully done.  So I  went to Home Goods and searched for the right box to use- made sure I checked every nook and cranny.  Low and behold, one box left in the  perfect size with the words "Believe in Yourself" on it!  Seriously!

I texted my BFF, Monica, who is an artist and wrote " I've got a fun project for us!"  So in her craft room, we collaborated and created the following:

Top of the lid-

- the words " I choose to let go..."

in a pretty, flowing font.

-print it on lined tablet note paper

- burn the edges as we plan to ceremonially burn our "surrenders"

-affix a butterfly as a metaphor for releasing it to God, the universe as well as our "metamorphosis" to  inner beauty and spiritual growth. 

- affix the word "surrender" to flank the sides of the lid - bolstering and framing our message on top, representing our commitment and fortitude. 

- then we put clear coat in it to stick and seal it together for strength and durability .....just like we, as a tribe derive our strength from being cohesive and sealed in our love for each other. 

That's what went into making this box.  So let's fill it up!

Thursday, October 3, 2013

Pumping For Charlotte

 Pumping for Charlotte
THEN 12/12
NOW 9/13
Some of you may be familiar with this story as it claimed some national attention. 


My grandniece, Charlotte Rose suffered a traumatic brain injury at 11 months old.  Her miraculous recovery involved the use of pasteurized, banked breastmilk for 6 months.
We started a non-profit and raised 20,000 dollars to buy banked milk.

Since June, Charlotte has been fed with donated milk from the mothers in my lactation center. To date these selfless mothers have donated 2,500 oz of their miracle milk – our goal is 4,000 as we plan to feed her until she is at least 2 years old.  Charlotte received the milk via cup and GT tube during the night and for naps- 22 oz/day. 
Charlotte & her PEG for feeding

CMM Donor
My CMM freezer!
Fed Ex Tom picking up our CMM delivery!

Below is the email I sent to our milk donors when I shipped our first box of CMM!

Dear CMM Pumping Brigade!
 I was overwhelmed with gratitude this morning when I looked at my large freezer full of breastmilk for Charlotte. Brought to tears by your generosity and kindness, I packed our first box of miracle milk - 155 oz!  So far we have collected 836 oz!!!

 There are no words to "express" what this will mean to the life of our little girl, Charlotte Rose.  I have attached a recent picture of her (now 16 mo) exactly 6 months from the date of her injury-
Her astonishing recovery could never have happened without human breastmilk.

 I so appreciate that there is much more than milk in the bags and bottles that you drop off- its liquid love, dedication, commitment.......that's what makes it and you so special <3
Thanks for helping to heal Charlotte as well as me:)

Tuesday, October 1, 2013

Self-Compassion Comes Full Circle

Dearest Tribe,
Julie’s post about compassion struck a chord with me.  Many of you have heard me say- "Life comes full circle - the patience you need now with your little ones is the patience you will need later when caring for your elderly parents"

Well I am living those words, People!  I am knee deep in that place now- caring for my Dad who is terminally ill with cancer.  As you love your children and only want the best for them, I love my dad but I find my “emotional thermostat” is near bursting at times. 

My dad needs all the help a small child does- bathing, dressing and nutrition. Safety, security, shelter & love. There are some things he requires that can only be done by a nurse (me) so we are now "attached at the hip".  He prefers only me as well- sound familiar?!

You know how your baby has a huge "blow out" right before you are getting in the car? When we go out, (no, he doesn’t have a “blow out”-Lol, at least not yet- yikes!) but my dad inevitably has to “pee” right as we are leaving and/or have to stop frequently to prevent embarrassing accidents.

 Older folks are messy, picky eaters.  They can’t help it just like your child can’t help it but none the less- it can be annoying and unsightly.   Frequently, his clothes are permanently stained but he would wear them just the same, no different from your little ones. But what am I supposed to do, never take him out?

How about all the paraphernalia you have to lug around? Well, it is necessary I have all his stuff with me as well: glasses (reading, distance & sun) hearing aids (otherwise we scream at each other in public) dentures with accessories (or else he can't eat),cane (we walk very slow- I help him up & down stairs, buckle him in & out of the car) jacket or sweater ( he's always cold) medications & various medical stuff.  Velcro sneakers, soft, cushy clothing (sweat suits- easy to put on & off) - sounds familiar, I reckon :)

Seniors have issues with sleep similar to your little ones.  Unable to fall asleep, stay asleep or sleep at night but at least old people nap during the day.  I mean, how many drugs can you give someone before anyone becomes suspicious?!   Let me add, “elder-proofing” the house is a must, as trips and falls can be dangerous and deadly.   Who enjoys going to the ER?  Anyone?!

Like children, one of the hardest things is dealing with their changing emotional state.  Children are exploring, pushing, testing and constantly challenging their environment and the people around them. Seniors lose their ability to effect change, leaving them feeling dependent, burdensome, inept and melancholy.  Creativity, distraction and humor are tools I pulled out of my parent repertoire to help combat much of his negative self-imagery.

So I imagine that I painted quite the picture for you.  Can i tell you, it is truly uncanny that my range of emotions are so similar to when I was a young mother? I am not talking about the pleasant emotions – I am talking about the crazy, scary ones.  I bet most of you can relate. Here goes:
Prior to my dad being sick I had my own “little life”.  I came and went as I pleased, didn’t have to answer anyone. I am not solely responsible for anyone as my children are all grown and on their own.   So where do I suddenly myself?  In a sea of irrational thoughts that sweep me away more frequently than I care to admit.  Trapped! Cheated! Resentful! Angry! Vulnerable! Anxious! Sad! "How long can I keep this up?" I ask myself. "Why me?" I ask.  Sometimes I wish I could just run away - keep driving and not come back!
My life as I know it is -disrupted - gone - possibly over. I have "no life now and never will!"  Not to mention, the awful guilt that goes along feeling that way.   This is my crazy self-talk.   

But guess what?  I did recognized it.  It was unexpected and took me by surprise but none the less, I recognize it and know what to do to help myself.   Which is,  I need to "check in" with myself and with those around me who love & support me.  Take advantage of the hospice services offered to me as well as my dad.  Stay present in the moment, take it one day at a time knowing “this too shall pass” (no pun intended). But most of all, I need to have great compassion not only for a sweet man facing death but for the devoted daughter caring for him.
Hugs to you & me,

Dad & Me, St Patricks Day 2013
My dear friend, Carol replied to this post with a very powerful story:
"I think I told you that the social worker at my mom's assisted living facility encouraged me to ignore her phone calls ( sometimes 4-6 times an evening). Her exact words "just treat it like you would your crying baby". And that's when the penny dropped. Ignoring a crying baby is the beginning of a lifetime of thinking it's ok to ignore a loved one in need.  
I can't always take my Mom's calls but why wouldn't I when I can ?  And I never told the social worker that I NEVER left my babies to cry. It was chilling that she assumed that everyone does that."

Monday, August 12, 2013

A Major Let-Down: Forced to Abruptly Wean

Most mothers have set a goal as to how long they intend to breastfeed.  Some will extend well beyond their goals and some may fall short. Health authorities have written guidelines suggesting length of time as well including the phrase “until mutually desired”.  The fact is our decision involves the luxury of choice.  But what happens when that choice is taken away?

This is the story of two mothers, in two different situations, facing two different realities.  Yet there is a common thread. Both were faced with life-threatening medical issues.  One, dealing with severe uterine hemorrhaging and the other was blind sighted by a malignant inoperable brain tumor.  To their shock and dismay, they had no choice but to abruptly wean their nurslings.     
I will introduce you to each mother separately and share excerpts from their emails posted to our community.   

First, there’s Dorana with daughter Joy who is 18 months old.  Not only did Dorana have breast reduction surgery at age 15, but her baby was tongue-tied as well which made for a challenging start.  Yet, Dorana breastfed Joy exclusively for 6 months and their nursing relationship continued to thrive well beyond.  It wasn’t until Dorana hemorrhaged several times over the last two weeks that everything changed.  After transfusions and uterine fibroid surgery, she was placed on hormonal therapy and is facing a likely hysterectomy. 
The following is part of her emotional post:

Dorana & Joy
“Joy came to visit tonight and for the first time since being admitted she started fidgeting with my gown and realized that she could pull on it and the snaps would pop open to expose my breasts...  I've developed a couple of blood clots in my leg and they've discontinued the Provera and are considering Lupron to freeze my system in hopes it will recover - but I can't breastfeed on the treatment.
It's so different being forced to wean.
It's been five days since I breastfed and I didn't know whether I would produce anything and whether it was a good idea to even allow it since as soon as I get this shot, it really would be over - would it be fair to allow it today?
But as she curled up next to me on the hospital bed and put her tiny hand in mine, she nuzzled against my breast and mumbled, "Mama, mama," softly while ever so gently patting her booby and began to nurse, I held her closely as I wrapped myself around her and quietly began sobbing as my husband hovered over us wiping away my tears...
I remembered the first time she struggled suckling in a room just like the one we're in today just down the hall after realizing she wasn't eating much with the bottle, not knowing if she was getting anything at all and whether I was producing anything since I had had a breast reduction at age 15.
I was brought back, those first few days I think I was terrified of touching her, maneuvering her like a fragile china doll instead of the assured lioness caring for her young.  
There were the all night feedings that ended in blood raw nipples and countless restaurants that gave wait staff and patrons a front row seat to view all the booby Joy could eat and how if things get bad, I can always run away with the circus as a contortionist having mastered the art of hovering over the back seat of the car whilst dangling my monster bobbies over her car seat mid epic meltdowns to quiet a hysterical baby...
They say you never know when it will be the last time - the last time you give a loved one a kiss goodbye, hear someone's voice, nurse your child...
I don't know if tonight in my hospital bed was the last time I'll be able to breastfeed my daughter.   There were more tears as I encouraged, "Okay, mama, say "Thank you booby!  Goodbye!" the way I had done a million times before...
I do know what a gift, a miracle really a true blessing it has been to have breastfed my daughter for 18 months.   I am proud of my body for the nourishment it provided my child. I will never forget her big eyes and endless lashes gazing into mine or the hours she slept atop my naked breast.”

Nancy & Hunter

Second, meet Nancy with baby, Hunter.  I had the pleasure of assisting Nancy early on as well.  Breastfeeding got off to a fabulous start.  Sadly, Nancy was diagnosed with a brain tumor.  I share with you her heartfelt account:
“I am a first time mom and my son is only 5 weeks old. When he was 3 weeks old I went to the ER with unbearable headaches. I didn't leave for 4 days. I left after surgery to put a shunt into my brain and also with a follow up with a neuro-oncologist to figure out the next steps to address the inoperable, malignant brain tumor they identified in the MRI.
I also found out last week that my treatment will now necessitate me being on chemotherapy, which is a change from their previous assessment that radiation alone would be sufficient. This change is important to my prognosis in a lot of ways, but the biggest impact to me mentally and emotionally thus far has been the fact that taking chemotherapy will preclude me from continuing to breastfeed my son.
I know many of my friends and family think I am silly for being so upset about losing my ability to breastfeed in the midst of all the other challenges my family and I are facing. But it truly breaks my heart. Breastfeeding helped me regain my bond with my newborn after being in the hospital and away from him for a third of his life, it made me smile every day, it helped me believe again for a little while in this body of mine which is failing both me and my son.
To Dorana: I just wanted to say that your e-mail hit very close to home for me, and while I hate to hear of someone else going through such difficult times, it helped me to hear that someone else understands how I am feeling, to be reminded of the gift I was given, and the beautiful memories I will have with him for those first few weeks of his life.”

We can take away many things from these two women, but what resonates most with me is their gratitude and willingness to embrace and share their vulnerability. For however long or short, breastfeeding meant much more than just a way to feed their child.  It was instrumental in fostering a relationship that knows no bounds, time or limits; one which transcends the physical.  Even though they were forced to stop nursing, these mothers will continue to nurture their souls with sweet imagery of breastfeeding…..lifting them up, lighting their way, eternally bonding them to their children.

In a world with so much uncertainly, there is one thing I am sure of.  The benefits of breastfeeding far surpass the milk itself.  The magic lays in the relationship that we so tenderly cultivate, leaving us feeling empowered and able to face and endure the hardest of times with honesty and authenticity, dignity and strength. 

What a gift we have created in this community of women!  I am awestruck by the power of maternal kinship, love and energy.  Each mother extends their hand and heart to hold and support each other, simply saying “You are part of our tribe and our tribe takes care of one another.”  

Friday, April 12, 2013

Miracle Milk Continues to Heal Charlotte's Brain! Needs a Boost for Upcoming Cranial Reconstruction

Dec 2012

            Then & Now

After suffering a severe traumatic brain injury in December and deemed fatal, Charlotte Rose continues to defy all odds!  Not only is she alive but she is thriving, much in part, to her daily infusions of mothers milk.  

Charlotte was the very first  formula-fed child to receive banked breastmilk at St. Mary's Hospital in Florida.   Since her "awakening' she has received pasteurized banked breastmilk which we purchase from the Mothers' Milk Bank of Austin. Charlotte is a living testament of the tremendous nutritional and healing powers of breastmilk. As you may already know, pasteurized banked breastmilk is commonly used in neonatal units all over the country but basically unheard of in a Pediatric ICU.  Until Charlotte- that is!

Since her homecoming on February 15th, Charlotte has made tremendous strides!  She is holding her head up now and almost sitting up on her own.  Her strength and will to play and perform, even the simplest tasks, is so inspiring.   Physical therapy, occupational therapy and speech therapy have been scheduled with great consideration taken, to ensure her much needed rest.   

In June, Charlotte will be undergoing a very delicate surgery-Cranial Reconstruction.  The neurosurgeon will close her skull with the pieces of bone he removed in December. When she was injured, the right side of her skull was opened as a life- saving measure to allow her brain adequate room for swelling.  Because of that, great care must be taken and she has to wear a heavy protective helmet.  Also, since Charlotte is only able to eat and drink small amounts. So the banked breastmilk remains the staple of her diet via her gastric tube. (a tube that was surgically inserted through her abdomen into her stomach) She gets a total of 21 oz per day. We are doubly blessed that as a bonus, breastmilk naturally contains the mega doses of Omega 3's  which are vitally important for her brain. 

The practitioners involved with Charlotte's care have confessed at being shocked by her mere survival let alone, her rapid pace of progress. They now admit and accept that this amazing feat is heavily due to the miracle of breastmilk.  Her doctors profess that this regime is critical to her recovery. Unfortunately, the insurance company refuses to pay for the milk.  So Charlotte thrives today because of the many generous contributions to her milk fund. Our hope is to continue to provide this miracle milk through her upcoming surgery & recovery.  

Unfortunately,we are almost out of "milk" money and she has about 10 weeks until her surgery. We have exhausted all of our own sources so we are reaching out to you.  I imagine you may be thinking "Why not use regular donor milk?" But the hospital and surgeons are adement that we used pasteurized banked milk until after her recovery from surgery.  
If you can help us meet our goal by contributing to Charlotte's Miracle Milk Fund- it would be greatly appreciated and surely blessed.

Only $5 buys her an ounce of the Best BOOST she can get to prepare for surgery! 

Donation site:    

Please continue to keep this precious child in your thoughts and prayers.  

Thank you so much!

GrAuntie Maria

Tuesday, April 2, 2013

Our Child of Light

 This Easter, I was absolutely and certifiably a blubbering mess!   Mind you, each holiday brings some tears because I miss my mom and my eldest daughter usually can't come home from CA for Easter.  But this year was different.  My mind was flooded with the thought that Baby Charlotte's miracle was like the miracle of Christ's resurrection.  
(background post

Was it arrogant of me to go there?  I felt almost guilty (Catholic guilt w/ a little Italian guilt smeared on top-Lol) equating Charlotte's awakening to Jesus rising from the dead. But to me it was uncanny and made the story of Christ's suffering, death and ascension so tangible I could feet it down to my bones.  After all, Charlotte suffered, was brain dead and awoke in a miraculous style. My faith tells me, Charlotte is alive because I believe that Jesus is alive! One could not happen without the other.  

My feelings were so strong I could not contain nor hide them.  I cried all night and throughout the morning church service- couldn't help it! Overwhelmed with gratitude I raised my heart in silent prayer, "I called Your Name, You heard my cry, Thank you, Lord for saving Charlotte, Thank you, Lord for saving me."  I continued to cry on & off throughout the day to my poor relatives who came to celebrate Easter!  Over & over I recounted the agony of Charlottes near death and the inexplicable joy when she miraculously woke up.   I thought, "OMG- now I "get" the true meaning of Easter!"

Charlotte, Our Child of Light

As many of you know, I spent last weekend with Charlotte. I tell you there is nothing more life- affirming than being in the presence of this blessed child. I would like to share the most poignant moment.  It wasn't when she squealed at Elmo or fed herself for the first time or fell asleep in my arms. It was when I carried her outside into the yard. I fully expecting her to shield her face from the bright sun by burying her head in my shoulder.  But instead, Charlotte intuitively stretched upward and boldly lifted her face to the sun. She closed her eyes and just let the warm rays stream across her face.  She was very still and peaceful as the beams of light kissed her ivory skin.  

I was awestruck!   It was so surreal like she knew exactly what she was doing.  Charlotte stayed like that for a minute or so, clearly experiencing what I can only describe as a sacred, intimate connection.  I thought, "What a heavenly creature! She knows where she came from. This baby is truly filled with the Light of God!"

At Easter, my SIL, Lynnie confided in me that when she visited Charlotte, she whispered to her, "You saw Him, didn't you?" She said suddenly Charlotte lifted her head and eyes upward and paused there quietly.   

Many people ask me, "What's the extent of Charlotte's brain damage? Her deficits? The long-term predictions?

I do not care nor dare to know the answers to those questions.  Oh sure, I can spew the medical lingo as well as anyone.  I can profess to know about the complexities of the brain and what's to be expected. Normally, I am pretty smart and savvy -don't  pull any punches. I am a "shoot from the hip", reality-based type of person when it comes to medical issues.  But I confess to you now that I am none of those things when it comes to this baby. Charlotte Rose cleaned my clock, flipped my lid and rocked my world!  She simply tossed aside any logic or intelligence I thought I had and replaced in with sheer faith. 

So my friends, just like the other followers of Jesus, I stand before you a person transformed by God's grace and mercy - disarmed and vulnerable, a mere mortal in the midst of a divine plan. 


- the book & website below is a vivid account of another child who had a near death experience.  Heaven Is for Real is the true story of a four-year old son of a small town Nebraska pastor who experienced heaven during emergency surgery.  

*This song came to mind as well- Laura Izibor "Shine" Let The Sun Shine On Your Face

Wednesday, March 13, 2013

The Gift of Nighttime Parenting

I frequently share this story, often teary eyed, when parents ask me if it's OK to sleep with their babies.  Not only is it OK, it's a natural assumption for human infants that they sleep with the mother especially breastfed humans.  I had the pleasure of my children sleeping in my bed as nursing infants and toddlers.  It wasn't until they were ready that I transfered them into their own bed in their own room.  So yes, I was an avid co-sleeper!  Bedtime was not stressful or scary - just my warm, loving  embrace that said,  "NO fear - you are worthy & deserving of  my presence, day & night."   As my children grew, the bed was a common meeting place for fun and conversation, whether it were morning or night.  My door was always open for any joys, fears or concerns.

When I was 47, I was faced with a serious health issue which required surgery. I had a huge mass in my pelvis which led my doctors to believe I possibly had ovarian cancer. The prior year, I underwent bi-lateral mastectomies for breast cancer. Once you have cancer that's pretty much where people go with it :(

Anyway, I decided to go to Johns Hopkins Cancer Center in Baltimore for a full evaluation since they were considered one of the best for this sort of thing.  I'll admit I was really scared, more scared than when I had breast cancer.  From the lay person side of my brain, I felt because it was inside my body and not hanging outside my body like my breast, it was more serious.   Totally irrational, I know.  From the nurse side of my brain, I knew ovarian cancer was one of the most fatal and that since there was a palpable mass, it was probably too late anyway.  That's why I went to John's Hopkins, I figured at least I deserved the best surgery I could get since one surgery is usually all you get.

Johns Hopkins is about 4 hours from my home.  I went down for my evaluation and its was recommended that I have a complete hysterectomy. "Looks suspicious but only until the surgery is  done will we (the doctors) know for sure if you have cancer and what type."   Ugh!  So I scheduled my surgery and informed my family.  Thinking it is unlikely that I could dodge a bullet twice, I expected and prepared for the worst.  Prompted to get my affairs in order, I  redid my will including an attachment letter with my funeral wishes and my "gifted"  belongings.   Listen, I know this sounds morbid but I felt compelled to do it all.   My children were grown by then- 25, 23, and 21 years old respectively. I had been divorced for 6 years by then as well.  So funny thing, when I asked my children what they wanted of mine (jokingly but secretly serious), they couldn't think of anything!  My next thought was, "why am I keeping all this crap?!"- Lol.    I didn't know what the outcome would be but it made me feel much better not leaving confusion and chaos for my children.  Of course, I didn't expect to die during the surgery or shortly thereafter.   But I did know that I would not choose conventional treatment such as chemotherapy and radiation so who knew how long I would live?

To bring her up to speed,  I called my eldest daughter, Nicole who was living and working in NYC.  The main purpose of this call was to let her know that her brother and sister were going to come down to Baltimore to stay overnight the day of my surgery.  Did she want to come down, too?   Well, I could tell by her voice she was anxious and scared (moms know these things) and she responded quickly that she was sure she could not get off work.  Obviously, a knee- jerk reaction due to fear and uncertainty.  I got that.  So, I told her not to worry, that I understood and I would see her when I got home.


I am happy to tell you that I did not have cancer just tons of endometriosis- who knew?   I was exhilarated by the great news and felt fantastic (as fantastic as someone who had 4.5 hrs of major surgery could feel).  My parents, two children and sister-in-law were present rejoicing with me. But then guess what happened? To my surprise, my daughter Nicole showed up at the door of my hospital room.  Without a word she proceeded to walk up to my bed and climb in right next to me, laying her head on my chest- right in front of everyone<3.

It was truly one of the most tender moments of my life!  I will never forget it.  No words needed.  Just a gesture of pure love and devotion.  Our relationship was right back where we first started, snuggled together in bed. But this time it was,  "NO fear momma, you are worthy and deserving of my presence."  Now, that's the power of nighttime parenting - building bonds that stand the test of time!

Me & my girls, Andrea & Nicole
One year after my surgery

Sunday, February 10, 2013

Benefits of Breastmilk for the Baby/Child with Traumatic Brain Injury

The Benefit of Omega 3's - Fats for brain development.

*Breastmilk also contains some very beneficial fats. Mainly, Omega 3 fats such as DHA and AA. These fats are there to help the baby's brain work, ensure that his immune system is functioning, and helps him take in fat-soluble vitamins. The fats that are found in formula are not digested completely by the infant, and formulas also don't contain DHA.  The fat level in mature breastmilk is approximately 4% and is independent of what mom eats.

*Brain injured patients need Omega 3s, not high doses of Omega 6s which is what the Hormel pudding is loaded with! The ratio of 6:3 is what's key and most American diets are overboard on 6's and have zero to limited 3s.

"Omega 3 fatty acids are important for the baby's developing eyes and brain," says Dr. Sheila Innis, the study's principal investigator, head of the nutrition and metabolism program at the Child & Family Research Institute at BC Children's Hospital, and professor, department of pediatrics, University of British Columbia. 

*Composition of Breastmilk (to combat the argument that Charlotte needed hydration)
Water 88.1%, Fat 3.8% Protein 0.9%
Lactose 7.0% Other 0.2%
Source: Lawrence R. Breastfeeding: A guide for the medical profession. 4th ed. St.Louis: Mosby-YearBook, Inc.1994

*Breastfeeding is best for brain growth and neuromotor development of the babies. Nearly two-third of the brain weight is due to phospholipids and long chain fatty acids. Docosahexaenoic acid (DHA) and arachi-donic acid (AA) are key fatty acids for growth of the brain. Human milk contains 30 times more DHA than cow’s milk. According to WHO, infants should get 20 mg DHA/kg every day. Human milk is rich in choline, taurine and zinc which are required for brain growth. Human milk contains almost double the quantity of lactose compared with milk of other mammals. Lactose is credited to facilitate the synthesis of cerebrosides and myelination of central nervous system (CNS). Breast fed babies have at least 8 points higher intelligence quotient in later life as compared to formula fed babies (6, 7).
There is enough evidence to suggest that the food we eat influence our memory, concentration, comprehension, judgment, intellect, mood and emotions. There are at least 50 brain chemicals or neurotransmitters that are affected by the intake of food and micronutrients (8).

Physiological effects of nutrients on brain growth
A number of amino acids are recognized as precursors of neurotransmitters. Tryptophan is required for production of serotonin which improves the mood and sense of wellbeing. Choline is required for production of acetylcholine which is critical for our memory. Tyrosine helps in motor coordination by elaboration of dopamine. Taurine is required for maturation of retina.

Micronutrients are required for production of several enzymes and co-factors for a number of metabolic pathways. It is known since ages that pellagra (niacin deficiency) leads to reduced cognition and dementia. A number of other B-complex vitamins especially B1, B2, B6, B12, niacin and folic acid are needed for synthesis of several neuro-transmitters. Thiamin deficiency hampers the ability of the brain to utilize glucose. Deficiency of folate, B6, B12 and choline are associated with elevation of plasma homocysteine level which may lead to thromboembolic complications and stroke (9). Iodine is required for synthesis of tri-iodothyronine and thyroxine. Iron deficiency is associated with reduced physical activity, neuromotor incoordination and reduced cognition (10). Cytochrome oxidase in the mitochondria is an iron-dependent enzyme. Oligodendrocytes require iron to synthesize fatty acids and cholesterol for myelin production and its integrity. Iron is also required for functioning of neurotransmission system such as dopamine, serotonin and GABA. Iron deficiency has been shown to adversely affect brain stem auditory activity and visual evoked potentials which may persist even after correction of iron deficiency anemia. There is some evidence to suggest that excessive tissue concentration of iron may lead to Parkinson’s disease in adults. Zinc is an important component of over 200 metalloenzymes and there is high concentration of zinc in the brain (11). Copper is an important component of cytochrome oxidase and superoxide dismutase in the brain. Copper deficiency is associated with Menke’s disease while copper excess is a recognized marker of Wilson’s disease, familial amyotrophic lateral sclerosis and Alzheimer’s disease.

Sea food is eminently brain-friendly food. Fish and fish oils are important sources of omega-3 fatty acids and DHA. Omega-3 fatty acids are credited to reduce cellular and vascular inflammation in the brain, promote vasodilatation and ensure integrity of brain cell membranes to keep them soft and pliable(12,13). DHA constitutes almost one-half of the total fat in the brain cell membranes. DHA is the building material for fabrication of synaptic communication centers in the brain. It increases the level of "feel good" neurotransmitter serotonin and the "memory boosting" chemical acetylcholine.
Unlike adults, infants cannot convert a short chain fatty acid alpha- linoleic acid into DHA and they must be provided with this essential nutrient de novo in the diet. Table I lists the essential nutrients required for the development of CNS (1). Fish is a good source of omega-3 fatty acids, taurine, iodine and zinc. Incidentally, junk food is rich in omega-6 Trans fatty acids which compromise the integrity of the CNS by making cell membranes less pliable and more rigid.

Smart Nutrients for the Brain
• Omega-3 fatty acids, dcosahexaenoic acid (DHA) and arachidonic acid
• Vitamin B complex, folic acid, vitamin C, vitamin E
• Iodine, iron, zinc, selenium
• Essential amino acids including taurine
• Choline
• Antioxidants

Apart from direct adverse effects of nutritional deficiencies on the brain, there are indirect consequences of under nutrition on brain development. Children with under-nutrition are apathetic and listless with poor interest to explore their environment. Because they are small in size, they are treated as "too young" and given inappropriate stimulation by their parents. The altered behavior and mood of the undernourished children often leads to the altered attitude of the caretakers towards them with poor level of interaction and play activity.