Lashay: Age 16
Diagnosis: Undiagnosed (POTS, Chronic Illness)
After being exposed to all sorts of variables(even being bitten by a raccoon) in Costa Rica, Lashay returned home from our fabulous family vacation in early Dec of 2015 and two days later she began vomiting, head and neck pain, light sensitivity, abdominal pain, etc. So the Odyssey began.
We started learning about the medical community; we began to realize the dissatisfaction with miscommunication, egotistic behavior, and poor communication with no follow up of natural occurrences. This last year with hospital stays invasive procedures and finding no real direction, we were left to our own resources. The best the medical community could do was sending her to a psychiatrist who told her to just breathe through her diaphragm and she would be living with this the rest of her life.
As a mother, I was not willing to let them write her off, over medicate her with the appearance of helping, and misdiagnose just to find her still writhing in pain. Fortunately, we have continued to fight, finding other like minded sufferers and finding those doctors in the medical profession that can look beyond to her future in the undiagnosed community! Building a team of Doctors that care and tell you they might not know the known cause yet, but are willing to help find relief and keep searching. The support with the rare community has been instrumental in not giving up. Finding others in the undiagnosed community and their stories of fortitude and strength has given us Hope and Courage. We feel like we can do this, the pain, the baby steps, the reality that you can do hard things and it’s nice to know that we don’t have to fight alone anymore.
With this fight, Lashay has been through prognosis of Rabies, Parasites, certain infectious diseases, Rumination, GERD, and more but recently we just got the diagnosis that she does have POTS. We are also looking into the formation of her neck and skull, since there shows an in-congruent formation. Chronic illness is more than pills, doctor’s visits, and medical bills. It means a total life change. Giving up beloved hobbies and falling behind in school. Losing friends because they don’t understand what it means to have a chronic illness, hearing third-hand rumors about their perception of what’s going on with you. Even rumors that Lashay had passed away!
This journey started with a healthy energetic child that always had a smile on her face, a kind word for others, would fall and jump up with the explanation,”I’m OK.” Lashay’s life that she knew changed from soccer games, skiing, hanging out with her friends and saying that she’s OK to an Odyssey that is still to be decided – This journey called life. Lashay asked an eighty year old psychiatrist who accepted us as a patient,” I just don’t know how to get back to the way I used to be?” with her wisdom she answered,” Oh honey, you are becoming so much more. Few children your age experience this type of life changing events. You are becoming More Loving, More Patient, More Kind, and More Compassionate.” None of us can stay in a life where we are not challenged, pushed, or had to overcome obstacles. She has a beautiful attitude and hopefulness that is contagious. We will have answers to this Odyssey, when and how they come we don’t know.
She is my warrior who gets up, despite the enemy trying to destroy her.
My warrior who declares victory before seeing it.
My Lashay who believes she will receive her Miracle and her broken wings will learn to Fly again.