"Be the change you want to see in the world." Gandhi
September 11th has a great deal of emotion attached to it, nationally and internationally. For me, it was the day my beloved sister, Aimee, was born, September 11th, 1956. Aimee didn't have an easy life, but she never lost her sense of humor, her love of music, anything chocolate, and her SMILE could light up a room. Aimee taught me how to LOVE unconditionally, and through Aimee's suffering, Aimee left a huge legacy, statewide in Pennyslvania. Aimee's Bulletin, was signed January 15, 2011. May Aimee's memory continue to be a blessing to all those who knew and loved her, along with the Special Needs individuals and their families that Aimee's Bulletin supported.
On this, the 6th anniversary of my beloved sister Aimee's death, I'm reminded of Aimee's fabulous sense of humor, incredible ability to remember entire TV commercials and skits from "I Love Lucy," like Lucy's famous "Vitameatavegamin" episode. Aimee's love of music, reciting of her all time favorite songs, chocolate chip cookies, teasing, her beautifully embroidered items, all the things that remind me of the famous song, Once in Love with Aimee, Always in Love with Aimee.
Back in the day, Aimee could recite the Pythagorean theorem, word for word. I couldn't even spell Pythagorean, I had to just Google it, but Aimee had this uncanny ability to remember certain things that just tickled her fancy, and she loved repeating those things that astounded others, as the words rolled off her tongue with ease. Regardless of Aimee's cognitive and physical abilities, she could light up a room and make anyone smile and giggle. If she couldn't make you laugh with her words, she would literally tickle you, and then say, "I'm just kidding."
I was blessed to have my younger sister Aimee in my life. Aimee clearly taught me how to love, and if there's one thing I know for sure, it's that I am who I am today because of what I learned about love, compassion, generosity of spirit and sheer perseverance from my beloved Aimee.
May your memory continue to be a blessing.
As Aimee affectionately called me, Flabby-Abby, with love,
From: "Lokuta, Fred"Subject: Re: Chad Orlowski: UpdateDate: November 18, 2013 at 9:23:51 AM ESTTo: "'firstname.lastname@example.org'
This is a note addressed to Chad's parents, Renee and Lawrence, who reached out to me this evening, in desperation, in an attempt to have their son Chad, discharged from Pittsburgh's Children Hospital and returned to Allegheny Valley School, a private, non-profit organization established in 1960 to care for children with intellectual and developmental disabilities.
Today, we traveled to Harrisburg, PA, our state's capital, to continue advocating for those who are unable to advocate for themselves. Going forward, Aimee's Team will become part of a larger team consisting of the state's finest professionals, under the direction of Fred Lokuta, Deputy Secretary for Developmental Programs, and Vicki Stillman-Toomey, Regional Program Manager for Developmental Programs.
As a results, we hope to be better able to communicate Aimee's Bulletin (Procedures for Surrogate Health Care Decision Making Bulletin #6000-11-01/January 2011) to our special needs families and their providers.
Left to right: Gail Inderwies, President and Executive Director, Keystone Care, Sue Badeau, Speaker, Writer, Consultant & Parent, and Abigail Sandler, Aimee's Sister and Aimee's Team Leader.
Today is a bittersweet day, it's the 4th anniversary of my beloved sister Aimee's death, and tomorrow my mother will be buried next to Aimee. I find myself wandering from room to room, preparing my home for friends and family who will be there to support me and my family tomorrow.
Aimee's Team Meeting Update: Department of Public Welfare, Health & Welfare Bldg., Harrisburg, PA
Left to right: Vicki Stillman-Toomey, Southeast Regional Program Manager,
Patricia McCool, Director, Division of Community Services, Bureau of Community Programs,
Sue Badeau, Aimee's Team, Family Advocate,
Abigail Sandler, Aimee's Team, Family Advocate,
David Kauffman, Executive Administrative Assistant, Office of Developmental Programs,
Kevin Friel, Deputy Secretary, Office of Developmental Programs, Department of Public Welfare,
Dr. Jill Morrow-Gorton, M.D., Medical Director
Just wanted to let you know that as of today, in Harrisburg, Aimee's Team initiated plans for Phase Two of Aimee's Bulletin, and will be moving forward, in partnership with Kevin Friel, Deputy Secretary, Office of Developmental Programs, Department of Public Welfare, and his excellent, devote and compassionate professional staff.
We're very grateful to have such a wonderful, dedicated team in Harrisburg, committed to truly making a difference and helping those who can't help themselves.
Pennsylvania Governor Tom Corbett and Abigail Sandler of Aimee's Bulletin(www.aimeesbulletin.com) at the recent signing of The Sudden Cardiac Arrest Prevention Act (HB1610) inspired by Darren and Phyllis Sudman, in memory of their beloved son, Simon (Simon's Fund: www.simonsfund.org)
It is the intention of Aimee's Team that through meeting Governor Corbett, action will be taken to complete Phase Two of Aimee's Bulletin, the Education and Training of our Special Needs families.
At the moment, if similar circumstances were to occur to any Special Needs Individual and their family within the Great State of Pennsylvania today, as occurred to my beloved sister Aimee, their family would have no idea as to what they were entitled to, as defined in Aimee's Bulletin. They would be at the complete mercy of their Group Home Provider.
Aimee's Bulletin strengthens and clarifies the roles of families and other parties in making healthcare choices for adults with special needs. Pennsylvania has numerous laws addressing surrogate healthcare decision-making for adults with special needs, and this has, at times, led to inconsistent practices that limited the voice of families when it came to making critical decisions about the care of their loved ones. Families and other caregivers deserve clarity when making such decisions, and Aimee's Bulletin is intended to provide that clarity. It affirms that the family of an adult with special needs can make medical decisions on that person's behalf, without having to seek authorization from the courts.
Aimee's Team remains optimistic that we will be able to successfully complete our mission with the timely assistance of the Governor Corbett's Office
Thanking you for your ongoing support,
My sister Aimee was a survivor.
Her life was Olympic in scope~ for all of the competitions she faced throughout her life, with no professional training, no skills, no professional team behind her, and few cheerleaders.
When my sister Aimee passed away three years ago, as in The Olympics, she passed the torch with the glowing eternal flame from her hand to mine. To get to the Finish Line and help others who have similar challenges that Aimee faced in her lifetime. If there is a version of “L’Dor V’Dor, From generation to generation”, which could be “From sister to sister”, this was it.
Aimee carried the torch of inspiration to many during her lifetime of challenges. Unlike trained athletes in The Olympics with the ultimate goal of winning, Aimee’s quest would be to simply live, and have a much deserved quality of life. This was winning. As Aimee’s big sister, I dedicated myself to helping make her feel like her race was well run, up until her dying day.
When Aimee passed away, it felt like the Closing Ceremonies of her Olympic and colossal quest~ for truth, compassion, peace, happiness and most importantly, survival.
I ran the race with her during her life, and now with torch in hand, I stand proud and continue in her beautiful spirit and memory. There is still much to accomplish.
Aimee truly will always live within my heart as a symbolic warm and eternal flame, and I promise to continue to carry the torch in her memory forever.
As I reflect on “What’s next?” I think of all the Special Needs individuals in the Great State of Pennsylvania, and their loved ones ~ who within a brief, few moments could be in the identical situation we found ourselves in almost six years ago, when Aimee became so critically ill.
Sure, we now have Aimee’s Bulletin. But what good is a signed legal document if families throughout the State of Pennsylvania don’t know it even exists, have access to helpful information or if they are familiar with Aimee’s Bulletin, can even comprehend its technical legalese.
There was to have been a Patient’s Bill of Rights, a simple, one-page, two- sided document, bringing clarity of our families about the End-of-Life Decision Making Process. It was to include a toll-free telephone number to call in case of an emergency, a contact name and a very user-friendly explanation of what Aimee’s Bulletin actually means.
As of today, if another family was to encounter a Group Home Provider who was attempting to bully the family into “their way of thinking” vs. the wishes of the family for their family member, that family would have no more information than we did six years ago when Aimee became even more medically fragile, and we didn’t know where to turn.
It was always the intention of Aimee’s Team and understanding while advocating with Harrisburg, that there would be “training” for our families, statewide. The training would be geared at educating our families prior to a medical crisis, so they would not only know how to better negotiate “the system”, but they wouldn’t be forced to react in crisis mode, at such a critical time in their loved one’s life. They would be able to “respond” with intention, which is very different than reacting.
On the First Anniversary of the signing of Aimee’s Bulletin, we must regain Harrisburg partnership in order to insure that our families have the training, knowledge and clarity around Aimee’s Bulletin, along with a Patient’s Bill of Rights explaining the End-of-Life Decision Making Process in simple, user-friendly language.
We must capture Harrisburg’s attention once again~ as we must do everything within our power to help those who cannot help themselves.
Aimee, you made one heck of a difference in my life and the lives of all of those that you touched, I love you and I miss you.
On September 11, 1956, my baby sister, Aimee Golda was born. We shared our childhood room, our hearts, and our extraordinary bond for 53 years, until she lost her final battle on February 9, 2009. As we approach my 9-11, my heart is heavy, as I reflect on my beloved sister Aimee's lifetime, her many challenges, her smile, sense of humor, love of anything chocolate, and deep connection that we shared. Aimee taught me how to love, and every challenge she endured, ultimately contributed to the woman that I am today.
Aimee, I remember you, I miss you, I love you.
January 26, 2011
I am completely and totally moved, to the point of tears, by the emotional outpouring of love, support and compassion that I’ve experienced during the last few weeks.
The comments that have been posted in our Guestbook, by those who witnessed, partook in our journey, or simply heard about Aimee’s Story, have been some of the most beautifully shared, and inspiring expressions of love that I have ever received.
Deciding to create a website in memory of my beloved sister Aimee was an idea, but not something I had been able to bring myself to do, until Saturday, January 8, 2011 in the midst of yet another snowstorm. I had already written, literally hundreds of e-mails, over almost five years, documenting and sharing details surrounding Aimee’s life, care and legacy. Somehow, sitting down to write a cohesive vignette, the Cliff Notes, so to speak, was something up till now I hadn’t been able to emotionally bring myself to do. In my heart, I knew that one day, it would just pour out of me, from my heart to my keyboard, which something would inspire me, and I would just do it.
Well, I received final word from Harrisburg that Aimee’s Bulletin would indeed be published, in the Pennsylvania Bulletin, January 15th, 2011. In my mind, I knew we somehow had to magically create a working website, complete with Aimee’s Story.
So many people knew bits and pieces, of Aimee’s Story, but few, if any, knew it all, so there I sat, with snow falling outside my window, as Aimee’s Story began to pour out of me.
While I sat writing, pausing to reflect, standing, sitting, moving about, Chelsea Badeau, our Award Winning Webmaster, sister to her beloved brothers Dylan and Adam, and vital member of Aimee’s Team, started building Aimee’s website, from scratch. I only had a few requests of Chelsea, that the site’s color theme be primary red, Aimee’s favorite color, that it be energetically HAPPY, playful, clean and contemporary looking, no clutter, easy to use, with a sprinkling of my favorite, Happy Faces, and "No black," please, Aimee didn’t like the color black.
I completed Aimee’s Story by the time the snow stopped falling, and Chelsea built the perfect website in about four days. We never met to discuss or design Aimee’s website in person, it was all done over e-mail, not a single phone call, and it was if Chelsea was able to read my mind. Chelsea got everything I envisioned, with ease.
Truth be told, we kinda felt that our beloved Aimee, Dylan, and Adam, were somehow energetically connected, and our little Angel Guides throughout our process. It was clear that we were doing God’s work, and we were in-action, consistent with having Aimee’s website ready to launch, January 14, 2011.
While the snow plows were cleaning the streets that evening, Sue Badeau, Chelsea’s Mom, and Mom to her beloved Dylan and Adam, took editing to a whole new level. I had been absent the day they taught spelling and punctuation, so I tend to write the way I speak, in one very long run-on sentence. Sue segmented my thoughts, added some punctuation, and presto, before I knew it, Aimee’s Story was edited, and ready to drop into Aimee’s website.
Then Chelsea spent the rest of the week tweaking our website, preparing to drop in the Press Release that Harrisburg was in the midst of preparing, and the actual published copy of Aimee’s Bulletin, which became available on-line, Friday, Jan. 14th, and we were actually ready, one day in advance. We decided that it should be light, fun and joyful, a celebration of Aimee’s life, so we added happy art, embedded throughout Aimee’s Story. When we spoke of how much Aimee loved chocolate, we dropped in a Hershey bar, or a couple of scoops of chocolate ice cream. When we mentioned Aimee’s ability to remember skits from the I Love Lucy Show, word for word, we added the logo from the show, along with a photo of Lucy. When we shared Aimee’s love of music, we added musical notes, and before you knew it, there was a certain aliveness to Aimee’s Story.
We even decided to add music to Aimee’s Story, Alleluia, a very special and inspiring song, one that sends chills up and down your spine, sung by Laura Thomae, Musical Therapist, at Keystone Hospice. Laura had sung Alleluia at Aimee’s funeral, February 9, 2009, again at Aimee’s bench dedication at Keystone Hospice, May 27, 2010, and also to our beloved Dylan during his last hours. Laura had sung to Aimee, during both of Aimee’s stays at Keystone Hospice, so she knew Aimee well, and I was honored that Laura readily agreed to allow us to play Alleluia while our guests viewed Aimee’s Story.
Fast forward, the signing of Aimee’s Bulletin was only the beginning. Aimee’s Team now needs to ensure that families of Special Needs Individuals, throughout the Great State of Pennsylvania will be provided with training, and educated as to their rights.
We have the support of Kevin Casey, Deputy Secretary of Developmental Programs, Commonwealth of Pennsylvania Department of Public Welfare that a Family Training Program will be developed, and a Group will be organized to implement Aimee’s Bulletin. When I met Kevin, Oct. 26, 2006, at the first official meeting of Aimee’s Team, at Keystone Hospice, I shared with Kevin that we need to handle this on a state wide level, and if we couldn’t I would go on Larry King Live to share Aimee’s Story. Kevin responded, “If we go on Larry King, it will be together as partners.” Kevin has proven to be a wonderful committed partner, friend, public servant, and my life line, time and time, again. I remain grateful to Kevin, and the members of Aimee’s Team, who listen, heard and supported me through my darkest of days, and stood by me, until we reached this moment in time.