Meet Josie. A little girl who is changing the face of beauty.
Words from Josie’s Mom-
Our daughter Josie was one of our rainbow babies. “Rainbow Baby” is a baby that is born following a miscarriage, stillbirth, neonatal death or infant loss. In life, a beautiful and bright rainbow follows a storm and gives hope of things getting better. The rainbow is more appreciated having just experienced the storm in comparison. Prior to Josie’s birth we had two beautiful girls, yet suffered 5 devastating losses prior to her joining our family. We were diagnosed with secondary infertility due to unknown causes despite seeking help from top specialists in the field. Several of our losses were due to extremely rare occurrences such as Trisomy 9 and Trisomy 2. I can remember one specialist calling me in New Hampshire where we lived after we lost the baby prior to Josie while visiting family in NY and telling me that the likelihood of these disorders striking one family was like being struck by lightening. When I was pregnant with Josie, every appointment brought a flood of fear of losing her. At the time I was an Assistant Principal in an Elementary School in New Hampshire and was also the Special Education Coordinator. I remember looking to the sky and asking God to just let my baby live, and that I would even love a baby who was disabled….please let her live. I remember my cell phone ringing and it was the genetic counselor who was calling to let me know that my blood work was elevated for Trisomy 21. This was prior to the more sophisticated blood tests being available. She indicated that her nuchal fold, although in the average range, was at the “upper extreme” of average. She also had an echogenic focus within her heart. All of these things really mean nothing, and yet mean something, as they are considered “soft markers” because they can occur in the general population without incident. She encouraged me to move forward with an amniocentesis which I declined. I wanted nothing to jeopardize her safety, and I remember saying to her, “If it is Trisomy 21- Down Syndrome and that’s it…..leave her be….I just want her to be safe.” My OB/GYN was phenomenal as was my Maternal Fetal Medicine specialist. They all knew that we were just fine if our daughter did indeed have Trisomy 21. Based on my blood results…our chances were actually only 2%! My gut was that we were that 2% based on prior losses from Trisomy 9 and Trisomy 2. I spent 9 months preparing for the “what if” so that we would be prepared. I had been communicating with a group of women from an online community via a secret facebook group who had also suffered multiple losses. They were my light in my darkest time. These complete strangers provided the courage I needed. I still keep in touch with these phenomenal souls today. Through another online community, I met local families who had children with down syndrome as well. The day that Josie was born, the nurses didn’t even realize that she had Trisomy 21….I had prepared myself as we had regular ultrasounds and I was watching her long bones fall off the growth chart….another soft marker. I was the one who brought it to the nurses attention. The seemed surprised (although I had warned them of the risk), and fumbled around a bit. They eventually had her evaluated and determined that yes, she did appear to have Down Syndrome. I remember promising her in the hospital that I would make sure she had everything she ever needed. Surprisingly, she did have 4 heart defects and pulmonary hypertension which shocked the staff as she appeared healthy. The social worker tip toed around as though she was waiting for me to come out of some sort of shock….except I wasn’t in shock. My husband looked at me the next day and even said, “I guess I didn’t know what to really expect….” He was surprised at how much she was just like her other sisters. She did end up hospitalized within the next week from severe jaundice as a result of her polycythemia. She recovered quickly though. Her heart defects also managed to correct themselves….we were one of the lucky ones. She is still monitored by cardiology though due to another connective tissue disorder (Ehlers-Danlos Syndrome) she inherited (just like her sisters). I met the local Mom’s I had met online (yes, I dragged my husband and children to some strangers house to meet the group I met online!). The continue to be my “Go To” people. Josie received early intervention services from the age of 4 weeks. She also ended up being significantly hearing impaired for the first 2 years of her life and had teacher of the deaf services and wore bilateral hearing aides. In addition, she has since been diagnosed with apraxia which is a neurological muscle coordination/motor disorder of speech. This makes it extremely difficult for her to speak. She utilizes an Alternative Augmentative Communication Device (AAC) for when she has breakdowns in communication. Her physical therapist warned us in the beginning that “Downs kids may never jump”…..I plan on sending her a video soon…..of her launching off of the coffee table with her younger sister onto the couch. NEVER underestimate a child’s determination. Since moving to NY, she entered PK at CP Rochester and had the most awesome teacher- Erin Davis. Her belief in Josie’s abilities helped her to get to where she is today. She is now in Kindergarten and in a general education classroom with typical peers and supports in place. She is happy to be at the same school as her sisters. She is welcomed into her classroom community and has friends. She has recently joined Girl Scouts as well. We have been blessed with a school district, staff, and classmates who believe in her, and are willing to think outside of the box….and that makes all the difference. My outlook for her is to prevent people from building a ceiling….the sky is the limit. As for her sisters both older and younger, Josie has had nothing but a positive impact on them. Their compassion and understanding for others has flourished. They served as her personal physical therapist (came downstairs one day to see they had strapped her up into her gait trainer and were encouraging her to chase something), and speech pathologist in encouraging her to speak her mind. She clearly wants to impress them, and she and her younger sister are partners in crime and best friends as well.
It was a pleasure to do a special photo session with some local kids who have Down syndrome. I am hoping to spread awareness locally in addition to adding my own flair to the campaign, Changing the Face of Beauty.