Dr. Linda Rozell-Shannon, PhD President and Founder
What we Know & Remember – Cole’s Story
Because of you, vascular birthmarks, we know and remember:
The feeling of seeing our newborn baby boy, Cole, with red/purple marks all over his body in the nursery, and not understanding why his skin looked so different from the other newborns;
The worry you have when the pediatrician tells you there is something going on with your baby, but they are not quite sure what it is;
The overwhelming feeling of anxiety after you google all the possible diagnoses, although the doctor told you not too;
The “is this a bad dream I’m stuck in” moment when the dermatologist tells you about a diagnosis of Port Wine Stains when our Cole was only 2 weeks old, and the possibility that he may have seizures, due to the birthmarks on his scalp that can cause “Sturge Weber Syndrome” in some children and the possibility of developmental disabilities;
The feelings of fear and ignorance due to a diagnosis you have never heard of;
The millions of racing thoughts that fill your mind with all of the “What if’s” that life may hold for Cole each day forward;
The lonely, quiet, and dark nights that you cannot sleep because you are afraid he will have his first seizure;
The feeling of being alone, while having all your family and friends around you, supporting you;
The feeling of when you have lost your happiness and feel the sunshine has been replaced by a big dark cloud;
The anxiety/sadness that overcomes you when you do not have many answers and are struggling to know where to find them;
The moment we noticed Cole’s left leg seemed to be a little shorter than his right, a tough moment to accept (another unique characteristic of Cole that we didn’t understand, or what it meant for his future);
The stress of having to act as though you are okay in front of your older children, even though your mind is stuck in a fog;
The stress it has caused our immediate family, although they have always done their best to stay strong for us (& a special thanks to our wonderful parents and extra awesome grandparents to our kiddos for helping us through each step of the way!);
The stares and questions that come from strangers, although many folks are sincere, there are always the few that say unnecessary comments or have a look of disgust on their face when looking at our adorable Cole(some of those looks and comments still make my heart hurt);
Saying out loud often, that in this lifetime, we didn’t ever think we would know this much about vascular birthmarks or how many polka-dots he would have after a laser treatment;
All the visits to doctor offices and hospitals over the past 2 ½ years for 10+ laser treatments, 3 MRIs, CT scans, vascular anomalies clinic visits, multiple office visits with a neurologist, orthopedist, geneticist, ophthalmologist, and hematologist, referrals for speech and physical therapy evaluations, and normal check-up visits with Pediatrician.
… after 2 ½ years on this journey with Cole and learning about his Vascular Birthmarks, we can say…
Because of you, Vascular Birthmarks Foundation, we now know….
Cole was born in this world with a few “extra” unique marks, however, we no longer look at him and try to picture what he would look like without his marbled-red skin, but we see Cole…for Cole.
A more humble life because we have been reminded to be thankful for all the blessings God has given us and to not focus on all the “What ifs”, but to instead focus on the positives that come out of stressful life events.
A lot more about capillary malformations and the many different type of birthmarks and syndromes that children and adults are coping with each day.
All the support and education we have received through the Vascular Birthmarks Foundation ( https://birthmark.org ) and we have had the pleasure of attending two of their Vascular Birthmark Conferences over the past two years.
We are not alone, and that many “wonderfully made individuals” in this world are living with vascular birthmarks and other syndromes.
Some answers about Cole’s birthmarks, but we are still working with the wonderful Vascular Anomalies team at The Children’s Hospital of San Antonio – CHRISTUS HEALTH and an awesome geneticists in hopes of figuring out even more.
Just how great of a big brother and big sister that Jake and Ella could be! They love Cole just the way he is, and he is so incredibly funny, smart, and loveable, because of them.
How blessed we feel that Cole has not had a seizure to date and his MRIs have not shown evidence of Sturge Weber Syndrome.
The feeling of relief after the ophthalmologist at Cole’s last 5 check-ups has seen no signs of Glaucoma;
With time, support, and education, you will get through those life events that forever leave “a mark” on your life.
Once you come out of the fog of grief you are in from having a child with a few unexpected “extras”, you will soon be able to see the sunshine days the way you used to and will be able to smile and laugh genuinely again.
How to handle the many looks that Cole gets, especially after a laser treatment, and how to use those moments to educate others.
All the many wonderful doctors, nurses and other staff, who are in the field of helping folks with vascular birthmarks and their families – Thank you!
We are going to be okay, even if we do not know what tomorrow holds, as we continue to trust God to guide us and bless us in his way.
The importance of being empathetic and mindful of all the different diseases, syndromes, cancers, and other conditions that children and adults are battling with each day, that are much more challenging than what Cole and our family has dealt with thus far.
As many have said before, it is truly our sense of humor and kind ways in which people see us as beautiful/handsome! Cole is unique not only because of his birthmarks and leg length discrepancy, but because of his ability to do just about anything he puts his mind to. Despite his leg length discrepancy, he runs, rides his toddler bike, and even kicks a soccer ball from time to time. He is all you would hope a 2-year-old boy would be – loveable, cuddly, rough and tough at times, fearless, adorable and strong-minded. We are beyond blessed to have Cole, Jake and Ella in our lives, for each of them bring such spunk, creativity, kindness, laughter and love to our lives!!
Our Birthmark Story is one among many and we just hope that people remember to look at one-another and appreciate why God has made us the way he did, and to find the courage and strength to be comfortable in our own skin.
We are truly grateful to Cole’s mother Jill for sharing their personal story with our VBF families.
This list in no way is to be construed as containing the ONLY physicians who treat vascular birthmarks. There are many other physicians who are qualified and have great expertise in this area. This list contains some physicians who have become a part of our resource list. We briefly mention what some of these physicians treat if we have that information under their name and address. If you are a physician or if you know of a physician who should be added to our resource list, please use our Physician Enrollment Form.