The National Advocate for People with Down Syndrome Since 1979

National Down Syndrome Society
666 Broadway, 8th Floor
New York New York 10012
800-221-4602
info@ndss.org 

Thanksgiving Bouquet
Iris Thanksgiving Bouquet
Iris Thanksgiving Bouquet
Thanksgiving Bouquet

Iris is my daughter, and the Tennessee state flower. She bloomed May 16th, 5 weeks early, and opened her eyes; two brown buds I never tire to gaze into. She had neonatal chylothorax caused by Down syndrome and on top of that, a train of other illnesses. After being wheeled away she was illuminated in a green neon light reflected from the medicines and tangled in plastic including vacuums in her sides to release the chyle (lymphatic) build-up in her lungs. It is a very rare and challenging lung disease to handle, but the nurses and doctors gripped it as horns on a bull. The doctor said, it could be two weeks or three months, we just dont know.' She was breathing with a high frequency oscillator barely holding on with major pulmonary hypertension. Iris was remarkably delivered naturally. I felt strong and fine, I guess I felt like I had to be, for her. While I was in the hospital still after delivering on the second morning around Iris's 39 hours of life, they called me into the NICU. For some reason they wanted me to go in a wheelchair. I chose to walk. Upon arrival I sensed something was wrong. Indeed, Iris's heart had stopped and they had just resuscitated her. I was advised to stay close to the hospital and be with her, for she could die any time that day. She made it through it. I'd say luckily but I heard luck doesnt exist; only blessings. When I drove to and from the hospital in May, while driving I noticed the wild Iris blossoms in my neighbor's yards were wilted and dead. One remained living in the hospital, ever so close to death. Iris was in the hospital for only two months. I say 'only' because that's better than three months. I currently find myself reading all I can, taking in all the information I can from people, filtering through and experimenting advice, and above all listening to my own heart about her needs. I have learned a few things about myself after all this. I have 'a thing' for babies and baby showers. I love and am compassionate towards doctors, nurses, or anyone who works in a hospital and now gladly pay hospital parking. I am now an advocate for children with special needs. Lastly, I am my child's first physical therapist and doctor; its called, 'mom.' Other children pass away, as do the wild Iris flowers in the spring. Only with the very fact that she is living is a giant lesson from her, so petite and frail. It is a lesson of strength and gratefulness suffice for me to be able to properly love, nurture, and take care of her. Overall, the most important issue is not about Down syndrome, it is about family. Iris is alive and well. This is true Thanksgiving for my family thanks to modern medicine, support surrounding, and the especially the omnipotent Father above.




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