My journey of learning to accept and treasure the gems that Bethany Grace has given me is a story filled with joyful moments, grief, acceptance, denial, shattered faith, peace, anger, laughter, tears, severe depression & anxiety, recovery, and new purpose and meaning in life.
I knew from the very beginning of my pregnancy that something was not right. I experienced numerous near miscarriages and preterm labors. About four weeks before Bethany Grace made her extraordinary entrance into the world, I heard the four words that would forever change my life—Cri du Chat Syndrome. Cri du Chat, also known as 5p Minus, is a severe chromosomal deletion genetic disorder (the type that Bethany Grace developed). We were told that Bethany Grace would not survive to the delivery, and if by some miracle she did, she would come out blue and require major open-heart surgery across the state. Well, by a miracle, at 34 weeks she did survive the emergency C-section. Not only that, baffled doctors stood over my bed as I was groggily waking up from anesthesia. The severe heart defect seen on the fetal echocardiograms had mysteriously vanished. At 2lb. 13 oz. Bethany Grace came out pink and was resting comfortably in her incubator on room air! Bethany Grace is a survivor. Since her miraculous birth, she has gone into critical condition numerous times, and she and I have fought through every time.
I wish that I could say that from the moment I heard her diagnosis and medical and developmental prognosis that I joyfully accepted the news. The truth though, is that twelve years later, I feel like I am just now beginning to embrace my new life as a mother of a beautiful daughter with profound medical and developmental special needs. Maybe some parents can say that they have never struggled with this new and different life and that the moment they learned of their child’s unique needs they ecstatically embraced the news. But my journey that I share through this blog and website is not at all like this. I will strive to be as authentic as possible to honestly share my difficult and wonderfully-beautiful story. I hope that through sharing my journey, you will feel empowered to embrace yours.
~Kristin
Special Needs Moms Blog