Waiting patiently to hear the doctor tell me what is wrong with my baby, instead she (Dr. Bordotha, Medical College of Virginia, Genetics) handed a book to me and turn away only by saying “look through this and tell me what you think”; Oh my God those white kids look like my baby! I exclaimed, I was very distraught in my spirit, but I did not show it on my face as my little frail, pale, triangular
-faced, blue-veined baby lay there smiling at her mom she only knew for 3 months. She was diagnosed with Russell-Silver Syndrome~ a congenital condition characterized by significant asymmetry and short stature, her name is longer than she is, I accepted what God allowed, but in my spirit, I was thinking I had the wrong child, how could give me one child perfectly healthy and then give me one that will not live or be mentally re****ed or never walk, they didn’t tell me that she would be deaf too! Jaclyn her name is derived from her grandfather (Paw Paw Jake) known to his friends as Jake his birth name is Aaron (biblical) Aaron means TEACHING, SINGING, SHINING, or MOUNTAIN, from the Arabic, which means MESSENGER. If you can recall the story of Moses he was the one that did not speak well so God sent Aaron to be his mouthpiece and yes, Ja’Aryn has a mouthpiece she talks so much we get tired of hearing her speak but we cannot tell her to be quiet because my mother (Maw Maw) said to us back in 1998, when that baby talk, no one better not tell her to shut up or be quiet. When I researched the name Aaron and the definition gave me teaching, singing, shining, mountain, and messenger they all fit the description of my now 12-year-old, forty pounds uniquely made from God, she teaches without hesitation, she sings even if she cannot hear or understand the words to a song, she’s a bright child and everyone who sees her see the uniqueness in God’s handicraft, and mountain, she is just as strong even through all she goes through she is a happy child. When she goes to the doctor for anything, she never cries about getting a shot or having blood drawn, she keeps still for MRI’s she is a mountain, and God gave her a very tough exterior and a high tolerance for pain. I was 33 years old my kids were 6 years apart. Ja'Aryn has been sick for 10 years now and the doctors still do not know what to do with this thing known as FAISALABAD HISTIOCYTOSISa very rare syndrome which causes joint contractures, neurosensory deafness, chronic pain, swelling of the eyelids, elbows, hands, knees, feet, lesions on the skin, failure to thrive, enlargement of the spleen, liver, fevers, raised sedimentation rates, progressive deformities of the hands, feet, rare form immunodeficiency disease caused by a mutation in the Tumor Necrosis Factor, Seizure, severe inflammation, lupus in transit, decubitus ulcer on the sacrum, erosive bones, sores in her head, headaches, conjunctivitis in her eyes. My God, the pain she goes through daily sends chills up and down her spine. As a mother, I would not ask this unknown syndrome on my worst enemy. God is moving at his own pace. I am known as a "Train Wreck" because if you look at a severe train wreck nothing can be fixed. I can't be fixed by man. My mom goes through a lot with me and she still smiles and is joyful. She has lost her job her car, her home, husband all because they don't understand how sick I am and how much I depend on Jesus, mom, Jas & Maw maw. God Bless you all! Find an intervention, please.
