A Few months ago, Children’s Grief Awareness Day November 19, 2015 posted this Yoda photo highlighting death as a natural part of life and got my wheels spinning again, particularly with all the hype of the upcoming new Star Wars movie, … Continue reading
Seven weeks has now passed since the day of my brother’s death in May of 2015. The sequence of events on that final Friday and sense of loss continues to be very fresh and replayed each week in my mind. Viewing a beautiful sunrise reflecting through a … Continue reading
Reflections on May 30, 2015 My older brother, by 25 months, was truly a celebrity of sorts. Greg was a boy with a zest for life, living in the moment, and creating opportunities to learn and grow along with his … Continue reading
Family is the heart of life. Grateful for the 45 years these amazing and resilient members have been part of my life. Through the years, we all traveled a lot of ground, water, and air and maintained connections and added … Continue reading
Day #1 February 26, 2015: Reflecting on my family growing up and appreciate their efforts modeling behaviors of empathy, compassion, and strength no matter what challenges present at the table. Their teachings have transcended into many hearts and hands among patients and families in the US and internationally.
Staring out the window now, a vision of the bright sunshine glows on the newly fallen snow. The bright colors radiate from at a colorful hand made stained glass cherished gift from a dear family residing in New England. I am also thinking of my little dear nephew who was born 1 day ago in England and hoping the sun is shining bright on this little neonate and his first time parents.
After a brief visit helping at my son’s school late morning and light lunch with plenty of water, I am truly grateful for being present at this moment to sit down and have the opportunity to collaborate with a local publicist to share the untold stories growing up with congenital heart disease (CHD) from the perspective of a sister and pediatric nurse practitioner. A champion strong heart family from Boston will also be highlighted. Hopeful to complete this by the end of the year’s end.
Day #2 February 27, 2015: Reconnected with a dear friend and colleague from years past over brunch. We have tried to reconnect for months, but life kept getting in the way. She recently returned from a conference where she presented some data on a project that we are both so passionate about, HMP or home surveillance monitoring program. Grateful that we could have the time together to remember how important life truly is and the value of the role of a nurse practitioner.
After some time, we got around to opening gifts. The pictured item below provided great laughter and says a lot about how well we know and care for each other. Funny thing is that I was not cognitively aware she liked this lotion before today. The little things in life, positive energy, and collaborative team efforts make the most priceless memories.
Day #4 March 1, 2015: The power of partnering with patients and families is priceless, particularly when we reside thousands of miles from loved ones. Thankful for the strength of a church community, strong hospice team, and my mother-in-law’s favorite nurse is able to be present during the final moments of my father-in-law’s battle with Parkinson’s Disease and Lewy Body Dementia.
Day #5 March 2, 2015: Wonderful view of freezing Lake Michigan today on a mid 20 degree day with bright sunshine. The frozen sheets of ice and ice dams along the shoreline paired with bright sunrise highlight wonderful colors along the water, snow, and blue skies.
Day #6 March 3, 2015: Snow returns and snow boots are brought out for the kids to trek to school. Lack of this white substance and cold temps have not been a concern this year. Despite folks irritations with the weather interruptions in the day, it is beautiful falling and enjoy seeing it cling to trees, houses, and bare sidewalks.
Day #7 March 4, 2015: Received a text from my husband that he will be returning after several days of travel as expected. Grateful to have him home to share a healthy protein filled dinner with my son and reconnect at the table to discuss the family events that have transpired over the past 72 hours.
Day #8 March 5, 2015: As I ventured out this morning for a scheduled ACS meeting in the frigid cold, I am grateful for the collaborative team effort of strong women in Milwaukee raising awareness, supporting, and ultimately focusing on curing cancer. This year’s 40th annual ruby event hopes to surpass donations of years past and impact more patients and family’s cope with this devastating disease.
Day # 9 March 6, 2015: This picture to the right is from February 26th of this year. The Amaryllis was just showing signs of growth. This morning, I woke to find the first signs of color from the highest bloom. It nearly reached the overhanging light fixtures above the breakfast bar. A wonderful surprise this morning to view over breakfast and truly a sign of the spring season showing face despite the chilly winter day today.
Day #10 March 7, 2015 Grateful for the wisdom of my parents and oldest brother Jeff. They are so grounded and help keep perspective and the faith.
Day #11 March 8, 2015
Loving the spring melting happening outside.
Day #12 March 9, 2015
Grateful for 45 years on earth and counting…
Day #14 March 10, 2015
Grateful to have a first draft of a book trailer ready to go and a photo shoot scheduled for tomorrow during the bright sunshine of the day with a cardiac nurse and local photographer living in Whitefish Bay.
Day #15 March 11, 2015
Challenges await my dear family member who is battling a new diagnosis of AML and needing to transfer to a hospital specializing in managing this diagnosis and bone marrow transplant. Just returned from my photo shoot along the lake and you never know what gifts you will be given. Today’s gift was the sunshine, sharing a beautiful treasure of stained glass with others, and those passers by on a walk.
I met a new friend who is 78 years old with amazing healing properties in her hands. She reached out with the same hands she shared with a friend struggling with rheumatoid arthritis and many others with chronic illness and brought warmth to the stained glass as it was hanging in the sunshine and shimmering light. While she touched it and brought warmth, we also shared stories about provider empathy and the lack of it during times of critical stressful moments and diagnosis. Who knows what tomorrow will bring for my dear siblings family struggling with chronic health issues. One thing I am sure about is that together with healing hands it will be done in the most positive energy and light.
Day #15 March 12, 2015
Day #16 March 13, 2015
Wonderful day of beach hopping along the cape seeing the amazing strength the weather brings to the bay and ocean shorelines. Skaket Beach was a view similar to pictures of Antarctica. Beach walking with family took on a whole new level today. Ended with a lovely everything “Lobstah” dinner at Orlean’s Inn with cousin Charles and aunt Peggy.
Day #17 March 14, 2015
Grandpa Bob, you will be missed here on earth. Beautiful service of celebrating your life at St. Peters in Harwich today.
Day #18 March 15, 2015
Wonderful to see my favorite beach, Crosby Landing in Brewster.
Day #19 March 16, 2015
Pleased to see the growth in my son. Shoveling dirt as Grandpa Bob is placed in his final resting place. The power of a 13 year old to dig deep and find compassion in his heart on his own and demonstrate it was a priceless moment. I am grateful to be his mother.
Day #20 March 17, 2015
Final beach stop was Linnell Landing before heading back to Wisconsin. It was Grandpa Bob and Grandma Nancy’s favorite beach. The treasures on low tide at sunset that were washed up on the sand were priceless. The icebergs were like a jungle gym all over the beach. Paired with that treasure was a glorious sunset and cold front passing through. The colors in the sky were like Bob was properly being raised up into heaven on his favorite beach. Good night Cape Cod and Grandpa Bob!
Day #21 March 18, 2015
Arrived home to find the 50-70 degree weather of the last week caused incredible snow melt in my home state. Pleased to see ever so small signs of life and green growth popping up in the ground by our neighbor’s garden as I drove up the driveway and took out the bags from the car.
Day # 22 March 19, 2015
The ability to teach music to a 13 and 45 year old is a challenge (on bass and piano accompanist) is quite a task. Thankful for John who truly has a wonderful peace and ease to teaching collaboration and actually playing good music together today. Feeling more confident for the ensemble on March 28. Together, we can do this thing and well!
Day #23 March 20, 2015
First day of spring and near 60 degree temperatures. Enough said.
Day #24 March 21, 2015
Reminded of signs of spring 2014, growth of the lily showing promise. Patiently waiting with excitement to see the blooms this year from last year’s Ladies Spring Cancer Luncheon.
Day #25 March 22, 2015
Chilly morning. Getting some good use of the fireplace on a slow Sunday morning of reading, music, and coffee.
Day #26 March 23, 2015
Thankful for a family with health stability, at least at this moment in time.
Day #27 March 24, 2015
Wonderful to have the book trailer complete after three efforts!
Day #28 March 25, 2015
A great piece of meat cooked on the grill and glass of red wine is so fine!
Day #29 March 26, 2015
Appreciate the strength of amazing practical and resilient women (past and future) striving to improve our local community supports for those impacted by cancer. Together the Ladies Spring Luncheon at the Wisconsin Women’s Club on May 5th will be a 40th annual “ruby” event.
Day #30 March 27, 2015
Wonderful day spent reconnecting and bringing my daughter home for break from college. A lot has happened since our last connect on March 15th and pleased to see her recovering health wise from a virus that really knocked her down while away from home.
Day #31 March 28, 2015
Day #32 March 29, 2015
Day #33 March 30, 2015
Amaryllis has bloomed and shown it’s beauty and color. Glad to see the weather is providing warmer temperatures are warming up to get outside and good conditions for flying to London today.
Day #34 March 31, 2015
With the time change and travel, I am getting to this a little late. Wonderful to have the opportunity to meet my new nephew in London at 5 weeks of age. What a truly beautiful celebration of life’s gifts that family shares.
Day #35 April 1, 2015
Grateful for patience, perseverance, and teamwork working together to meet my nephew’s (and her mum’s) needs for breastfeeding, awake periods, sleeping, and mommy time.
Day #36 April 2, 2015
Wonderful to be able to visit in the park the Steltzer family visited just 1 year ago. The view overlooking London, sunshine, blooming gardens, friends, and family provided hours of reconnection, sharing of childrearing experiences, and laughter.
Day #37 April 3, 2015
Simple yet meaningful pleasures of the day are priceless. Assisting a first time father and his son with a new bottle feeding exercise showing signs of fulfillment and absence of protesting cues is a rewarding experience.
Day #38 April 4, 2015
Day #39 April 5, 2015
Thankful for holidays and ability to spend time painting eggs, blowing out eggs, sharing dinner, and playing in the park together under the sunshine.
Day #40 April 6, 2015
Grateful for the Badgers men’s basketball team playing in the final game tonight in Indiana. Hopeful for a win but will have to check in the wee hours of the day since the game starts shortly after 3am UK time.
Day #41 April 7, 2015
Grateful for my immediate family. It’s been a good trip, but time to start the journey home. I miss my boys!:)
Day #42 April 8, 2015
Ahhh….safe travels, a bit longer than expected but home.
Day #43 April 9, 2015
Luggage lost somewhere between London, Toronto, and Milwaukee. Impressed with how resourceful I can be within a 38 minute window on the parking meter shopping for the essential items housed within the suitcase that has no ETA before I leave for Madison tomorrow.
Day #44 April 10, 2015
Truly a day of multiple blessings!!! Wonderful connect with amazing nursing colleagues at the UW Madison Nursing program to support Dr. Karen Pridham and her international award. In addition, on this siblings day received the call from my brother at the end of the ceremony in Madison that Greg received a call that a donor heart was finally found after 197 days waiting inpatient and 5 years on the list. Tears immediately present along with goosebumps followed by chills and then the jitters all within 1-2 minutes of time. Cannot express completely the feelings of joy, excitement, sadness, hope, fear, and anxiety all wrapped up into one as the next chapter of my brother’s life begins with a team of experts, generous gift donated by a family in times of grief, and cheering section all over the world rooting for him and family every hurdle along the way one day at a time. GO GREG GO!!! You got this! 🙂
Day #45 April 11, 2015
Grateful for my younger brother sharing a ride to the hospital to talk with Greg one last time preoperatively and spend time with him before traveling to the operating room at 4:55am. One big last hug and high 5 to Greg, lots of well wishes by the nursing team on Domitilla Building, and watched Greg wheel off with his mother by his side. Finally, Greg said to her that she needed to stop and turn back because you will get lost getting back to the Domitilla waiting room. That’s the pragmatic brother of mine, always thinking practically and sensibly with a kind and gentle heart.
Day #46 April 12, 2015
Early this am that I was finally able to see my brother postoperatively at 4:30am. I expected the worst case scenario when I first entered the bedspace and was quickly pleased. Among all the medical paraparaphernalia scattered arround his bedspace from ventilators, nitric oxide, pumps, chest tubes, catheters, computers, lines, pacers, SCD’s, and the like, there was my brother laying safely in bed slightly on his right pink, warm, and with a stable blood pressure. I know the journey will be long and there will be peaks and valleys to navigate. Life is good.
Day #47 April 13, 2015
No repeat trips to navigate to the OR is a blessing.
Day #48 April 14, 2015
Wonderful to finally have clean clothes!
Day #49 April 15, 2015
Refreshed this am. Starting the day with a homemade waffle, beautiful sunshine, and finished with a safe OR trip today. Positive energy is high. Life is good.
Day #50 April 16, 2015
Beautiful first tree and flower blooms found at Plummer House on a warm and sunny day.
Day #51 April 17, 2015
Grateful for the family supports to help keep the family going back at home. Wonderful loving and supportive husband and music director taking Nate to orchestra auditions this afternoon.
Day #52 April 18, 2015
Day #53 April 19, 2015
Will be wonderful to see my husband and son again after 9 days unexpectedly away from home.
Day #54 April 20, 2015
Chilly day with wind and rain didn’t stop Greg from progressing and slowly becoming more aware. A dear friend from completing her first Boston Marathon. Congrats to a couple of huge milestones of the day!
Day #55 April 21, 2015
Hearing the nurse share on the phone with Greg today that his “crazy sister” with the cheesehead is coming back to Mayo wearing the headgear and his nodding of the head processing the statement is a wonderful gift.
Day #56 April 22, 2015
Enjoying the banter of four 13 year olds in the car traveling to soccer practice. Boys…boys…boys…boys! It’s been far too long since I took my turn shepherding these turkeys.
Day #57 April 23, 2015
Enjoying the bright sunrise and reconnecting with nursing colleagues about a manuscript long overdue to be in the final draft. Promises to be on the final read internally in Boston before sending off to a journal to review for publication!:) Hurray!!!!
Day #58 April 24, 2015
Happy Birthday to my bro~47 years old today! Sunshine is powerful!
Day #59 April 25, 2015
Lunch with a friend at the Chancery is so powerful and rejuvenating.
Day #60 April 26, 2015
Grateful for communication transfer that is positive and thoughtful of my brother’s care
Day #61 April 27, 2015
Spring clean up and snowblower put away~DONE by 3:30pm. Small property size is wonderful!
Day #62 April 28, 2015
Monday morning sunshine gorgeous! Abstract sent off to American Heart Association, 2015 meeting and NAPNAP 2016 meeting.
Day #63 April 29, 2015
Wonderful to see the PJM’s first bloom outside the house today
Day #64 April 30, 2015
Wealth of knowledge gained during a conversation with Dr. Marvin Glickglich on the history of pediatric cardiovascular surgery in MKE.
Day #65 May 1, 2015
Grateful for my daughter sharing a ride to Rochester and godson meeting us for lunch on a busy prom weekend.
Grateful for my my brother’s team at Mayo within the Mary Brigh building for treating him with strong medical supports, kind hands, hearts, and endless support as a person and healing patient.
Day #67 May 3, 2015
Beautiful Sunday morning viewing a team of 13 year old boys play a solid and strong game of soccer and winning despite anticipated fear based on the teams recent statistics.
Day #68 May 4, 2015
Annuals plantings done. Refreshing and inspirational to see the start of growth in the yard.
Day#69 May 5, 2015
Successful 40th annual ACS luncheon raising hopes, research dollars, and supports to those within Wisconsin.
Grateful for this day, albeit quite grey and cold. There are times when we cannot get everything that we want in life and this is one of those days. Praying for the strength in my sister-in-law to keep the faith and persevere through her newly diagnosed remission of AML. Her name is included as one of those lovely flowers hanging in the entrance door. Hopeful that she will go through her next round of therapy and receive a successful remission and able to move onto progression including an outcome trajectory consistent with survival from cancer, bone marrow transplant, and return to normalcy able to witness another spring’s blooms.
Day #71 May 7, 2015
Wonderful to see the 70 degree temperatures again, just in time for an afternoon soccer game in Port Washington, WI. Go NATE GO! Go BAY GO!
Day #72 May 8, 2015
Gorgeous day for a bike ride. Took a 10 mile ride and saw my first oriole fly at the Schlitz Autubon Center.
Day #73 May 9, 2015
Fun seeing my son attend his first bar mitzvah ceremony and dance. He’s growing up and had a wonderful time. Didn’t understand much of the ceremony in Hebrew, but learned the process.
Day #74 May 10, 2015
Lovely homemade spinach frittata, coffee, and fire to start the Mother’s Day. The afternoon followed by gelato at the mall, attending the middle school musical Joseph and the Amazing Technicolor Dreamcoat, and finally. a day watching a classic movie, Airplane.
Day #75 May 11, 2015
Getting back on track with the writing process feels good. Lots of good connects and progress done today.
Day #76 May 12, 2015
Progressing nicely on the history chapter of Champion Strong Hearts. Amazing progress has been made in just a few decades in nursing and medicine. We have come a long way and have so much farther to go to find the answers to better quality of life in CHD. Happy International Nurse’s Day and celebration of Florence Nightingale’s date of birth. A quote the famous Florence Nightingale, “I attribute my success to this~I never gave or took any excuses.”
Day #77 May 13, 2015
Attended a lovely meditation class lead by a pediatric nurse who worked on CHW HOT unit in a new local yoga studio called Yoga Loft in Milwaukee.
Day #78 May 14, 2015
Champion Strong Hearts Book Trailer
Today is January 14, 2015 and am preparing for another visit to see my brother. Ten days ago, he spent his 100th day hospitalized awaiting cardiac transplant for his CHD. Interestingly, thirty years ago on this exact day, he underwent his Fontan operation … Continue reading
Music: Healing the Mind, Body, and Soul My most recent post highlighted the puzzle called life, began to shed some light on some of our family’s beliefs, spirit, importance of moderation in a healthy lifestyle-“Keep calm and carry on” and motivational ways that peace, … Continue reading
Reflecting on the recent holiday season and transition to the new year in 2015, I am struck by the fact that the next blog needn’t automatically be about the relationship to early toddler years as anticipated. Stories and tales of my younger years will be shared … Continue reading
Present Day: Univentricular congenital heart disease awaiting cardiac transplantation hospitalized at the Mayo Hospital It is December 14, 2014 and the eve before I am preparing for another journey by car with my oldest brother Jeffery, who lives in Appleton, … Continue reading