Author: Amy O’Donnell
Jacob is a medical miracle.
I was on bedrest for six months with Jacob with contractions. In 2005 Jacob was induced at 37 weeks due to slow heart rate. After he was born, he had an irregular heartbeat and a fast heart rate. Doctors noticed he was not thriving, and found out that his liver was destroying his red blood cells. This is called hemolytic anemia. He was given three blood transfusions.
It seemed that after each specialist came into our room at the hospital, we had another diagnosis. I was scared and confused and overwhelmed. All in all over the next few years he has these following diagnoses:
Autism, Supraventricular Tachycardia (SVT), Atrial Septal Defect (ASD) , seizures, Hemolytic Anemia, Hyperbilirubinaemia, Hypospadias, Alpha-1 Antitrypsin Deficiency, Early Fontanel Closure, Abnormal Brain Development, Micrognathia, Hypotonia, Childhood Apraxia of Speech (CAS) and Asthma.
Jacob has always been happy, social, and very flirtatious, but he never spoke. He has always needed constant supervision and still does. He does not understand danger and has no safety awareness. He is a runner, and we use a harness and a push chair to keep him safe. He has fractured his foot and did not know until hours later when I noticed him limping. He has had severe reactions to medications, and has had a movement disorder (tardive dyskinesia).
In 2011 when Jacob was six years old we finally received the diagnosis of PHELAN-MCDERMID SYNDROME. This was indeed the puzzle piece that was missing. This explained many but not all things.
Last year I started to paint as a form of relaxation and therapy for me. Jacob would stand right next to me watching and smiling. I offered him the paintbrush and asked him, “do you want to paint?” He replied “DA DA” (that’s how he says yes). Once I handed him the brush he sat, painting, smiling and he was very content.
We try to paint every weekend. I have to “Jacob-proof” the house by laying blankets and cardboard down so not to get paint everywhere.
And now, anytime I ask him “Jacob, do you want to paint?” he always says “DA DA.”
It brings us so much joy to watch him paint. It almost makes me speechless. Since then, I make sure to keep canvases and paint at home for the weekends.
Yes, his attention span is short; yes, sometimes he decides to paint the carpet or his toys– or me. But it’s okay. Watching Jacob paint is worth it.