Strength and perseverance

NOTE: this is an update to their original story HERE

Strength and perseverance are the two words I’ve used in describing any individual with Cystinuria…. and that means my 3 Bare Kids as well.

I have also been quoted in saying “to live your life to the fullest despite the physical and emotional burdens that this painful rare process can bring is one of the most inspirational outcomes that I’ve been able to witness in my own household”  It was hard to come to terms not being able to fix it or cure anything for them, but I’ve considered it all blessing, a life changing and inspirational gift that my kids taught me!

About ten years ago I was asked by Global Genes to share my experiences and thoughts on caring for 3 small children with this tough rare diagnosis, Cystinuria.  I remember crying the entire time I wrote it. I was then later asked to share our story, this time for our International Foundation, speaking along side my daughter at NYU in 2014 for our Biannual Cystinuria Conference in New York.  This time I got through my long speech, only to cry at the end, and then cry even more watching my 16 year old daughter give the most amazing and inspirational talk to a room full of important physicians, researchers, etc., but most importantly to ALL those attendees with Cystinuria who traveled from all over the country to attend.

I believe Ally got a standing ovation from a few of them as she pushed through pain, only a month out of being in between her renal auto kidney transplants….but just because we asked her to be there to speak. I still get many private messages remembering her speech and thanking her for inspiring some changes in many others. Heck, we would have been thrilled to have reached even just one!

I’m proud to say she fought a good fight these past 10 years since that first article and like I said before, my kids achieved more than what even some people have a tough time doing in a healthy physical state (that includes me).  So much has transpired since that 2012 article, all three kids have graduated high school to go on to college. They all individually got some unusual opportunities though, being academically offered a high school study abroad (each over their junior summer break).

So Ally went to France first in 2014 (the other two to follow)  but it was before her 1st renal auto transplant. Surprisingly she got to travel to Germany with a friend as well. It was the toughest decision for me to make and allow my ‘chronic kids’ that dealt with so much pain to travel alone without me, their caregiver. The trips certainly brought back some interesting stories and events,  yes, related to kidney stones. We have many stones stories passing in unusual places, even leaving some in other countries, but there’s more to other stories, like almost falling down off a steep hillside when hiking in Ambialet, France because the pain and medication made her dizzy. Then another story comes to mind is the call I received of her admission (for stones) to a German hospital. This one was a bit tougher for her as she still tells the story of being left to pass stones with a nurse who only spoke the German language.  I’ll mention one more…..on a 6 hour flight out west in a tiny bathroom 35,000 feet up in the air because honestly, my mind wasn’t too good back then and all I thought at the time was needing an emergency landing. Stones are not very forgiving to the time and places of your life’s circumstances and you will certainly be able to pick out someone with an obstructive stone. It could certainly be a surgical emergency disrupting even an aircraft in flight. Cystinuria is just a life disruptive process. Giving our kids the support and encouragement to say, “you can be anything you want to be in life’ made us question early on if that is something we really should be teaching them or preparing them for future disruptions. Even early on, while Brad doing a career assignment, I found myself ‘low key’ deterring him from probing Pilot as a career choice. The stone stories are just too many to share here and if we included ALL the painful episodes and unusual places that these kids’ stones were conceived, it would be a whole book.

Yes, this update is definitely a part of my book.

One even and phone call that sticks out in my mind though was hearing my eldest getting detained at the Paris airport. She was trying to catch a connecting flight. The call came in and we immediately thought “a stone attack” but needless to say, it was her eardrum near ruptured during the in flight descent and she and a chaperone had to stay in Paris for 3-4 days. Luckily, it wasn’t such a bad outcome and thinking back to all of the critique I experienced for sending her away, that episode could have happened to anyone!  Again, pulling from my previous 2012 article, normalcy and perseverance were what I’ve always fought for my kids. I was always teaching them to live the life given but, heaven forbid someone throw a wrench or an unwanted ‘controlled situation’ in my kids way … lets just say that I was and will always be a protective Mother Bear!

Anyway, most of the time we focused on all the good that comes into our children’s lives. Most recently, only sharing the good because what most people don’t see or do not understand is that under all our exterior smiles and their amazing accolades and achievements are still many constant days of daily pain and heart ache. I can’t count the number of missed events in their lives, the mental challenges that come with the physical ones as well. The interruptions and missed school or life time events, including the family and friends who just don’t understand, so we let them fade out of our lives because it’s easier to not have to explain why we can’t be the person or family they want us all to be.

Thinking back, I can’t even count the number of stones passed, hospital trips for middle of the night emergencies or surgeries.  One year I believe we counted (in just Ally’s hospital trips) wrist bands to be over 65 that year and then another year I had one in the Emergency Room and one in the Operating Room at Children’s Hospital in Pittsburgh at the same time. I know their Pediatric Urologist said it was the first he’s ever experienced taking care of two siblings emergently for stones “at the same time”. Oh the stories to tell!

I believe we’ve had a few other ER trips together after that one and we joked with the urologist saying “we were not killing two birds with one stone” but “killing two stones with one bird”.  He really got a kick out of that one.  Humor is always our go to, as well as other diversions, like music and art for therapy.

So to move past what we know from the earlier 2012 article, fast forwarding to today….sure, some things don’t change as they are still maximizing all their therapeutics to try and prevent the stones. Both Ally and Brad still compete weekly with stone burdens ranging from sand to boulders. The one good report, when speaking of stone production, is that Emily is still asymptomatic. The irony is that on paper she tends to have the higher Cystine levels but no stones. For that, she is very grateful and I’m certain her strong work ethic and passion for the medical and health field was a result from being side lined to her sibling’s challenges over the past years. This process, like any chronic illness certainly does effect the whole entire family unit and I believe it is why Emily took every opportunity placed in front of  her, even studying abroad for a college semester to travel to France, Spain, Amsterdam, Italy and even Columbia with a friend.

I’m very blessed that we are able to highlight some of the positives.

Recently I was able to watch both my girls walk together for their college graduation.  COVID got in the way for Ally’s college and Brads high school graduation last year ‘2020’ but as we are used to the many obstacles and disappointments, they pressed on to live day to day, in the moment,  as this year taught many, and now with one year of graduate school under her belt, Ally will come out with a Masters in Social Work next year…. the same time Emily comes out with a Masters in a Physician Assistant Program at 22 years old.

All the while Brad’s opportunity to defer his Penn State University scholarship (due to Covid restrictions) turned into a blessing since he needed some hospital trips and more kidney surgeries this past year. That’s always a tough decision, as we already knew, dumping tons of money in college to then be still held accountable when withdrawing for health (Ally had to do this her spring semester year). Trust me, college is not cheap! Focusing on the positive again, it was all meant for him to focus on his overall health and wellness before he begins his college career in the fall.

Reflecting on this past year some more, we know the overall pause for Covid threw some people over the edge, but for us it was just more of the normal obstacles. We’ve learned to consider any down time given as a huge opportunity to improve quality of life around here… and that goes for all of us! Again Cystinuria, like any other chronic rare disease, affecting the entire family!

We like to use lemons around here for our urinary health, so we are always trying to make some lemonade as well, if you know what I mean. Wink ! wink! 

With anything in life, there is good and bad. When it comes to Cystinuria and the constant pain of kidney stones, I know it is hard to find that good sometimes, especially in the midst of chronic or severe acute pain. I know it’s hard to keep your head above the water when it feels like someone is constantly pushing you down, but knowing there’s a community of cystinurics now and forever to lean on and understand means more than the world to me as I reflect from watching my mom suffer alone. We all need to continue sharing and comparing our stories whether you make sense of it all or not. It’s just comforting in numbers, speaking to someone who may feel the exact way you do will alway help.

For a very long time, I hung up my own professional a Registered Nurse to be there fully for my children. I wore many different hats to get by and fulfill myself and I wouldn’t change it for anything. One important hat I placed on my head was that of a Patient Advocate for the ICF. I designated and gave myself that voluntary role and I now know I worked for no one but the good Lord!

Being there to listen to those new coming to the diagnosis was so important, even those older experienced that deserved connection. The caregivers to the young children were sometimes reaching out in phone calls, texts, even once Face Timing a sweet young lady who reached out from another country because she was alone in the ER.  She was so anxious when they told her she shouldn’t have pain from the stone…because it wasn’t obstructing.

I learned very quick in my life, from a very early age that No Time is Ever Wasted When We Are Reaching Out to Help Another Human Being and although I didn’t hold any important titles or positions, I feel I was more valued as a genuine person just building connections through love and support.

So 32 years ago as I finished nursing school, I looked to the local practicing urologists and medical textbooks because my mother had the disease process, to find almost zero information or research on Cystinuria. At that time, I didn’t know my kids yet, but looking back I honestly knew I was going to make a difference someday for Cystinuria. I can’t help to think that our push to share our stories was a key factor in finding others, to then build a community, this community for validation that yes, more research needs done to prevent and better manage this awful debilitating rare disease process.

Thank you to all those using the Cystinuria platforms built here to share and care with love and support to make this disease a little more bearable.

Stay Strong !

-Dawn Michele Bare RN and Mother to the Most Incredible Cystinuric Children

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