Garrett was born on December 5th, 2011.
All throughout labor his heart rate kept dipping to the point where they finally prepped me for a C-section. They did not go through with the procedure since he was born a few hours later.
Garrett was perfectly healthy until he was about four months old. When he would fall asleep, his left arm would shake. We took him to the ER where they told us they were regular baby movements. These progressed and within two weeks, he was in for an EEG. That very night he had his first EEG, he had his first grand-mal seizure in his sleep.
That day, we were told to go to a better hospital that was farther away, they immediately started bloodwork and a CT. The doctor walked in and told us that his CT was abnormal and he had too many spots to count in his brain that should not be there.
We were then transferred to Children’s in DC. He was hooked up to a VEEG for almost four days, and they did more tests including an MRI. When the doctor came in with the MRI results, we still were not sure what was wrong. They suggested that he may have TSC (Tuberous sclerosis complex), but not to look it up because it would just scare us. So, of course, I immediately researched it.
Garrett has had multiple VEEGS, MRI’s and EEGS and so much more done in his first year of life. We spent almost a week in the hospital the first time. I never thought that I would have a child that would have something so scary wrong with him, how could this be?
He goes for regular tests, and takes several meds a day to keep the seizures at bay- and what’s scary is that he is not severely affected by this disease! My son is my miracle, my hope, and my joy! He has made me such a better person and brought my family much closer together. It breaks my heart to see him go through what he does on a daily basis.
He is such a fighter and so strong. Never have I met anybody in my entire life who could deal with so much and still be so happy. Garrett is now two years old and has come so far. He has major speech delays but is learning to sign and is so amazing! I wouldn’t change him for the world, but I would take the tsc away! I’ve been at my lowest of lows with my son and this disease but also had the highest of highs because, let me tell you, when you’ve been waiting to hear your baby’s voice, and you tell him you love him, and he says it back for the first time- IT ALL MAKES IT WORTH IT. All the therapies, and doctors and work put in– everything is worth it to get to hear your son’s voice for the very first time.
It’s been such a long journey thus far, and I know there’s so much more to come, but through my son being diagnosed with this disease, I’ve met some amazing people in support groups who have given me so much hope for my son and his future!