Tuesday, April 23, 2013


Have you ever sat on the side of a lake and looked at the reflections? How the water ripples and changes your reflection morphing it into another shape, seeming to change you? If you look at your reflection in a mirror that is 200 years old, how it bends and changes your reflection all while you yourself haven't changed at all? Or have you changed?

Sitting here reflecting on my blog, I am struck by how much our lives have changed since Peanut came into our lives. Change is not a bad thing, with it comes growth, and recognition that change is not a negative. Change is not something to fear, rather something one needs to embrace and allow themselves to surrender to the flow of the changes. We are afraid of change because we are afraid of the unknown. While we may not appear to have changed in our reflections, deep down inside we have changed. We have grown, physically as we age and spiritually as we realize that in the end while we like to think we are in charge, we are just pawns following the master plan of our Creator.

It is said that the eyes are the windows to the soul, I believe that. When Peanut was born I remember looking into her eyes seeing my reflection and telling my husband how it was amazing it was as if you could see my reflection in the clouds in the sky - as if I was looking into heaven. From that moment I knew my daughter was going to teach my things I could never dream of learning.

Now, as we approach her ninth birthday, when I look in my daughters eyes and I still see my reflection. The reflection without the clouds now, I still see myself - but a wiser self. One who has appreciated things in life that others my age have yet to understand.  One who realizes what truly is important in life as opposed to things that just seem important now. I see how far my daughter has come so far, and the endless possibilities - the sky is the limit.

What has Peanut, my Daughter with Down syndrome taught me you ask, well let me tell you: Perseverance pays, never judge a book by its cover, never say never, if at first you don't succeed try try again, and of course be yourself because everyone else is taken.

How exactly does perseverance pay? Well, the old adage of "If at first you don't succeed try, try again" is so true. I remember laying on the floor next to Peanut positioning and repositioning her hands under her so that she could lift up her chest and head from the floor. I developed a tendon problem in my wrist because I spent so much time working with her, but you know what? I will never forget the day that I laid her on the floor on her belly and was getting down onto the floor when she put her hands under her and pushed herself up to look at me. She smiled the most amazing smile at me as she was telling me - look I did it! The other old adage of "if you fall off a horse get back up in the saddle again" is also so accurate. When Peanut was learning to walk, she fell all the time. Partly because she had a hard time seeing and partly because she was low tone. She would cry and cry, she hated physical therapy so much that she would hear the therapist come through the door she'd start crying. I remember on her first steps - after all those tears after many months wondering if my child would spend the rest of her life butt scooting around everywhere - she took a step and fell. That first step, also accompanied by the biggest smile ever - I DID IT MOM!.

Really, never say never? When Peanut was little we were told that she may not be able to do many things - all kinds of things....from walking, to running to bike riding, to learning. Well, never say never. She walks, bikes, runs and is learning a whole new language in a new country! Yes, a new country. We always thought we would never be able to move anywhere because of services we were getting, doctors we had aligned ourselves with. Peanut taught us never say never. We moved to the Mediterranean and are learning new languages, new culture and even though we were worried that she would have trouble learning a new language - she proved us wrong. She is learning the language and understands it pretty well.

Never judge a book by its cover, yeah right! I will never forget that day that the highly recommended physician while accompanied by his team of residents and medical students referred to my daughter as having "Downs disease". That statement changed my life forever. Right then, in that moment I decided that if they allow doctors to practice medicine using inaccurate medical terms to describe medical conditions, that I was going to get into medicine and show them a thing or two. I remember applying to the Physician assistant Program 9 months pregnant with child number 4, they wanted to know what I was thinking applying with a child with special needs and very pregnant. I was told after I completed my program that they couldn't believe i had made it through. I told them I learned from my daughter - never give up and don't judge a book by its cover.

Seriously, be yourself because everyone else is taken? Having a child with special needs is not easy, whether they look typical or not. I have found that there are quite a bit of people in this world who are not comfortable with others who may be different. This has been my motto for most of my adult life, I am finding through my Peanut that so many people are not true to themselves. They are what others want them to be - but in reality when we are just ourselves the world is such a better place. Besides, if you remove the pressure of keeping up with the Jones it allows you the time to realize that everything we have is a gift.

Reflections...change...I never dreamed in a million years that I would be sitting here in the land I now call my Home, reflecting on my personal gift, my Peanut. My child who taught me what is important in life. Who touches everyone she meets - not physically but spiritually, she manages to make them feel special. She knows when you are sad, she can sense things we can't. She is in touch with her true self. She doesn't care about what brands you're wearing, how much money you make or how fancy your jewelry is.  She doesn't care how religious you are or aren't. She likes you for who you are. She doesn't care what others think. She is who she is, whether you like it or not. She is brave, amazing, beautiful, caring, sensitive, and will tell you exactly what she is thinking. She is not afraid of the unknown - she embraces it - trusting that something good will come. My Peanut has taught me the meaning of life.

What is the meaning of life? The meaning of life is simple.....Every breath, every minute is a gift. You have been given the very precious gift of life, use it wisely. Choose carefully what your words, actions and decisions will be. Long after you are gone you will be remembered for your words, actions and reactions. We only have one life. Be thankful.

So, have you looked at your reflection lately? When you look at your reflection, what do you see? Have you found the meaning of life yet?

Happy Birthday Peanut, you are truly one amazing gift that I am so grateful to have been the recipient of.  I hope that I can one day be as amazing as you are.

Monday, November 28, 2011

Overthought or Afterthought?

My children LOVE Max and Ruby, the animated television program based on books by Rosemary Wells. aThis is about tweo little bunnies that live together in this nice big house, and all the things they do. The storyline usually goes along the line of Max getting into mischief and Ruby rescuing him or preventing him from incurring bodily harm to himself or others. It has a very catchy theme song, and is filled with bright colors and basic animation that is still appealing even to young children who are getting used to complicated computer animations. Yesterday, my children were watching Max during one of his escapades in which he was trying to go outside in the rain , but Ruby kept making him put on his galoshes, when they finally made it outside it stopped raining. My oldest daughter looks at me and asks me “where are Max and Ruby’s parents? How come Mrs Huffington is there and Ruby’s friends all say they can’t be late because their mothers will be worried? Why don’t the parents ever appear in the show?” OK, so what do you say? Well I thought about it and ended up with my traditional “I have no idea, it’s a show for 3 year olds, but good observation”.
In reality, the more I thought about it, and yes I admit I did think about it, there are many different scenarios. Perhaps the parents are incarcerated since they apparently are absent and never are around. Perhaps the house that Max and Ruby live in is really one of those cute little Lilliput play homes that is in the backyard of Grandmother’s house, where the two really live under close supervision. Then I thought about it more, perhaps Ruby is the mother of Max, she seems very mature for her age after all. Maybe she is just making the most of her circumstances and is raising Max responsibly. Maybe Ruby’s mom or dad are single parents and they spend all their time, including at night during sleepovers, working to make money to pay for all the nice furnishings and house that Max and Ruby live in, which means Ruby is the mother and father and caregiver to her little brother Max. Maybe they are really orphans living as a family, but really they are just two kids stuck in odd circumstances. Then it finally occurred to me, I am over thinking the television show for 3 year olds and I really need to get a life.
So, what do you think the story is behind Max and Ruby, where are Mum and dad?

Sunday, November 27, 2011

To B or not to B...or maybe its a D?

Being the mother of six children, I found that it is difficult as you get into the higher order births to have time to bond with the newest bundle while still maintaining household chores. dinners, shopping and life in general. Breastfeeding I found to be the way to force myself to take time to hold my baby, and bond. I found ways to organize my life in a way that would allow me to perform multiple tasks at the same time. I became the juggling genius.
In general, breastfeeding has been important in my life, even being the driving force behind my current occupation. My quest to becoming a medical provider began after child number 2 was born and I was faced with the possibilty of not being able to breastfeed due to a potential surgical intervention. I remember thinking it was absurd that ther was a possibility that I might not be able to breastfeed my baby. To make a long story short (and not medically involved and to spare you the TMI effect as my 11 year old tells me), I was able to continue breastfeeding and even was spared the said medical intervention, perhaps because I spent so much time pumping and nursing that it resolved my underlying issue. Following this close call, I began to look into lactation counseling as a job. I took the opportunity to call my all time favorite obstetrician, Dr K to ask about what his thoughts were about my becoming a Lactation Counselor. I remember him chuckling and telling me if anyone could do it and be good at it it would be me. He then proceeded to tell me to call his partner Dr B and talk to him because he was much more in tune with these things and was the up and coming MD in my area. To this day I remember exactly where I was when I go the phone call from said Dr B and discussing my new found opportunity. I recall how supportive he was, encouraging me to take this on. I did go on to complete my training and worked as lactation counselor for a year before my Peanut came along. After I had my Peanut I found there was a huge hole in lactation services in my area, that there were not many counselor's or consultants specializing in babies with hypotonia (low tone) and related medical problems that can be associated with Down's. I quickly worked to specialize myself in the area learning about what it takes to help mom and baby with special needs - DS specifically- become a successfull breasfeeding duo. I even had the opportunity to appreciate perhaps why I had become an CLC when I did. My first patient was a lovely mother, who interestingly called me not long after I had my Peanut, as she too had had a child with down's and was looking for lactation help and was given my name - for a second time. She was so relieved that I was the referral and also felt that G-d had shown us if just for a split second his plans in action. Over time, with my experiances as a Lactation counselor and my own personal interactions with medical professionals, my friends starting to put the bug in my ear - medical school vs PA school. The rest as they say is water under the bridge. Basically breastfeeding is an important aspect of my life in many ways.
The idea of breastfeeding is not foreign to my kids either. They will tellme when the baby is crying he wants nursed, and they have each at one point in time tried to 'nurse' their baby dolls, and are body conscious to note who has "nursies" and who doesn't. For example my 4 year old told me last week that he has nursies and it was "funny cuz boys don't nurse babies mommy!" This awareness and the fact that I do tend to nurse my children longer then most women do, can potentially lead to awkward situations, even hysterical ones. Thank goodness my kids have never attempted to lift my shirt or help themselves in public, usually becuase I wean by the time that are 18-22 months. I can now say that I have had the experiance however, of taking my 14 month old baby with me to the fine lingerie store to purchase stockings for my work week. He did a great job in the store with me while I found exactly what I needed, but put me on the spot when I put him down for 30 seconds so that I could sign the charge slip. My little cute innocent boy toddles over to the store window display where there are mannequins that are mere torsos set on the floor. They are scantily clad showing the most fashionable undergarments available. It is the storefront that many males can be found inspecting at any given time during the week. My little boy goes over to the one with the lovely periwinkle colored brazier, looks at it for a second inspecting the lacework, then lifts it up and yes, he tried to suckle from the mannequin. I was slightly embaressed, but grabbed him away and apologized to the store owner. The owner subsequently looks at me and at the mannequin and asks me "isn't that the one you purchased last month?" for lack of a better response I glanced back at the mannequin and said, "no, mine was a D, not a B". I quickly left the store, but was a bit red in the face. I am not sure I will be shopping there for a litle while, at least not with my baby in tow. Although I have to give him credit, he recognized the similatiry and connected the color and style with nursy - a comforting loving moment. I think it mught be time to pack the girls up and call it a day....or maybe I'll give it another couple months.

Friday, November 25, 2011

I understand....

I took some time to read my old postings and to reflect yesterday about how my life has changed since I started this Blog. Even just since that last time I posted (admittedly almost 2 years ago), life has taught me more lessons. Since the last time I blogged, I have had another baby – yes, number six , call me crazy – I have spent time working as physician assistant in neurosurgery and now am working in women’s health. Just to reflect about life, based on my personal life and my new professional experiences:

One thing that I have thought about more is the phrase “I understand what you are going through”. Such a small phrase, I say this to my patients every day to express concern and legitimize what they are feeling or dealing with . Of all the sayings in the English language this is a sticky wicket, because it can reflect multiple expressions. It can be a courteous PC response when the individual is trying to be nice when they are at a loss for words. It can be a genuine expression of concern with an underlying lack of better words to say, or without real legitimate understanding. Finally it can be the genuine response of concern by someone who may not have experienced the EXACT same situation, but who themselves have been through a life altering experience that can relate on some level to how challenging and life altering the others current situation is. The most difficult thing is not to be on the consoling end of that conversation i.e. being the one to say “I understand” but actually be on the receiving end. Having been on the receiving end of such a conversation I recall many times that my reaction was one of disbelief. “who are YOU to tell ME that you understand what I am going through? How could YOU possibly know what I am thinking/feeling? You have never been in my shoes, or dealt with what I am dealing with, so how dare YOU tell ME that you understand! Just go your own way and leave me alone.” Rational though obviously is not existent in this situation. Over the years I have trained myself to reverse this negative thought process into realizing that one of two things may be occurring: (1) they are at a loss for what to say, so they are nice, polite, but really they don’t have any clue or (2) they really do understand. I have learned over time that I actually prefer that “I understand” response much more than the other alternative of “oh that’s too bad” or “what a shame” to which I switch to a questionably more warped thought process, being that I pretend that people are mentally ill. On the other side of the table are those people who genuinely understand what it is like to experience a life altering event, albeit the experiences may not be EXACTLY the same.

After I had my Peanut, the most difficult thing for me was to let my emotions go. I was embarrassed. I didn’t want my friends, loved ones or medical professionals to think that I was weak, or that I couldn’t handle the new situation that I had been placed in . I held those emotions in for as long as I could, until at one point when Peanut was about 6 months old, it was suggested to me to allow myself to feel. I remember thinking that was crazy, why do I want to feel those emotions? How do I allow myself to feel something that I have chosen for this long to repress that I know is going to hurt? The ultimate question that I was afraid of was what was I going to feel once I let my guard down. I was so afraid of this, that I kept my feelings locked away for as long as I could. It got to the point that I was just not myself and having trouble sleeping and would prefer to stay home away from people. So what was the suggestion? The suggestion was to write my birth story. Put my pregnancy thoughts and feelings on paper with pencil. To write down exactly what I remember thinking, feeling at every point during the pregnancy, labor, delivery and even postpartum. I have to say in all the things I have done in my life this was the most difficult task I could have undertaken. I remember locking myself in my bedroom after my kids went to sleep and hand writing the story, erasing as I saw fit. Crying, feeling that heart wrenching sensation all over again. The fear of not knowing what the future was going to hold, the pain of the loss of my ideal future plans and loss of friendships that I had held dear, and the consolation of new found friendships and a couple existing friendships that were strengthened by my new situation. Even now, when I read what I wrote, I cry, it brings all those emotions right back and I still feel that heart wrenching sensation, as much as I would like to repress it, I can’t anymore. The best thing I did after writing it down and copying it, was to take my hours of hard work and rip it to shreds. I was so good to be in control for that set amount for 2 seconds. To be the one deciding what to do and when to do it. The poem Welcome to Holland by Emily Pearl Kingsley (http://www.our-kids.org/Archives/Holland.html) truly applies to how I was feeling. I had in my mind all these plans for my perfect life with my picket fenced house and college and marriage and grandchildren, and all that changed in a flash. All my dreams and hopes dashed to the wayside, all because I apparently caught the wrong flight and landed in Holland instead of Paris.

Now, seven years later, I am still repressing some of my emotions. Yes, I admit it, I am human. I try not to think about the future to much because it makes me very anxious, and can evoke panic attacks. Not knowing who will care for Peanut to make sure she has her financial and medical care, to make certain decisions are made appropriately. Making sure she is not alone in a personal care home because no one wants to care for her or cannot afford to take care of her. It is difficult in social situations where there are other children who are my daughters age whose mothers I was pregnant with at the same time, when their daughters stare at my Peanut and do not include her in play dates or parties. Thankfully, until recently Peanut has seemed to be oblivious to much of this, but now she is starting to try to be social herself. She will approach the girls and say hi, but they giggle and walk away or turn to ignore her, while the parents just watch and do not help them to interact. Recently Peanut lost her best friend from school, who died suddenly, she notices that he is not here anymore. She is becoming more outwardly expressive of her surroundings and will soon notice and ask why she is not being included. I know that part of this is my being sensitive and that I will have to continue to be the ‘bigger person” but it is still not easy. Over the years I have come to appreciate how much my life has changed for the better because of the new situation I found myself in. I have a new career, my friendship with a few friends has been strengthened, and has survived the ultimate test and I know who my “true blue friends” really are.

For myself, I have come to realize that there is also a component to the medical professional side of emotional reactions. Having worked in a level one trauma center where you see lives change in the blionk of an eye. As medical professionals we often deal with life altering situations, as in neurosurgery I dealt with death on a daily basis. We are taught to bury our true feelings, as you do not have time to react and become emotional when dealing with the patients and their families. You as the medical professional need to be the Rock, the anchoring person, giving support both emotionally and sometimes physically helping to aid a family member to stand up or sit down so as not to fall as you bombard them with bad news. it is then difficult as medical professionals to then allow ourselves when we need to let our emotions go because we feel that we are failures. Reality is that we are just human. IF we keep these feelings bottled up we become wounded inside, that people cannot see, but that can have devastating effects on our lives, relationships and can potentially affect our jobs as well. What would I tell you to do about this? Talk to someone about what you are feeling. If you are not so brave to do so in person, send them a letter, email, or do like I did, blog. There is great comfort in anonymity that allows one to express their true feelings without repercussions or embarrassment. Whatever you do, do not keep it bottled up inside, as it is not going to help you to heal, rather keep you weighed down. Remember that there is a positive outcome to every situation, even if we don’t see it at that time. Not that I am perfect at all, but look at me, I have become a medical provider. I have used my personal experiences to ensure that when I provide care to my patients that are getting grade A top of the line good quality medical care, the way I would want myself or my family member to be treated. I have also come to truly genuinely appreciate the fragility of life as we know it, as Alexander Dumas said “on what slender threads life and fortune hang”.

So when I say “I understand what you are going through” I REALLY understand. My life was flipped, turned upside down seven years ago. I lost friends, strengthened other friendships, we took a financial hit that we still deal with now as medical coverage is not adequate to care for all Peanuts needs. I found a new career as the result of all my experiences with my Peanut, but lost some of my freedom – freedom to be without constant worry in the back of my mind. Worry that I still repress even today, for fear of feeling and for fear of appearing as weak. I am not the same person I was before she was born, lost my ability to have the future set in stone. I still have open wounds that occasionally have salt rubbed into them just enough to remind me that I am human. I take the time to express my thought to people I care about, because you never know what tomorrow brings. Now, I am a neurotic obsessive compulsive planner of the here and now, since I cannot control the future. I control what I can to help keep my true feelings repressed – the feelings of overwhelming smallness that comes with being completely and totally out of control of one’s destiny. Even though the experience is not exactly the same, I am genuine when I say I understand.

Sunday, June 14, 2009

Home stretch...

Well, it has been a long road, but I am in the homestretch now with school. The road to becoming a Phycisian assistant has not been easy, by any means, but it has definitly been rewarding. I have five weeks of class left, then I graduate! Thank HEavens! I have my white coat ceremony and all that is left after that is taking my boards!

THe job huntis on right now, I have a couple of things cooking, but I wont share until I know what is final...don' twant to jinx myself.

Will keep everyone up to date, hoepfully!

THe kids are doing great everyone is growoing up so fast.

Baby Megan is 5 months old already! where does the time go?

Sunday, January 04, 2009

Here She is....

On Sunday December 28, 2008 we welcomed our newest addition to the family.
Megan Reilly weighed in at 7 lbs 2 oz, and 20 inches long.
She is doing great adjusting to family life and fitting right in. All the kids fight over who will hold her next. She is a real blessing and wonderful addition to our family.
I am off of my rotation this week to return next week (boy my two weeks sure is flying by!)
I am enjoyng every minute with little Megan.
Happy new year everyone!

(I am having trouble uploading images..will try again later)

Monday, December 22, 2008

'Tis the Season

With cold weather nipping at our heels, snow, ice and frigid temperatures are all one needs to be reminded that the holiday season is upon us. It is also a reminder that flu, bronchitis and sickness season is here. Just one look at my schedule at the office will confirm this...
8 am sore throat
815 cough
830fever, chills
845 possible flu?
9 am pneumonia...does this not sound like fun being with all the sick people all day?! Dont get me wrong I love being a PA and doing what I do, but much prefer OB/GYN where the likihood of contracting the flu or pneumonia is significantly decreased.
We are keeping it low key this year for the holidays that is, with the impending event we are trying to stay close to home. I am just trying to get a little rest between busy days working and home with all the activities.
Of course my idea of rest is very different from others...as I demonstrated this morning when the contractor arrived at 730 am, I was in the kitchen standing over my deep fryer making homemade doughnuts. Yes, I am that crazy-pregnant-ready-to-be-done-get-the-insane-idea-into-my-head-just-do-it-because-I-can pregnant lady who is tired, but can't sit down becuase I don't know how to slow down. This is me on slow. Hey it could be worse...I could be scrubbing my house from top to bottom, re-arranging furniture and cooking up a storm.
Perhaps I will do that tomorrow? Hmmmm....
Happy Holidays everyone!