Today is day 9 of National Down Syndrome Awareness month. I have topics surrounding Down syndrome for every day in October, but sometimes they ebb and flow and when it comes time to sit down and write I sometimes find my mind wandering to other ideas.
On this particular day, very late into the evening (it's going to be Monday soon if I don't finish this post) I have had the incredible medical team that has been a part of our lives for the past two years on my mind. Today I want to write a prescription for thanks. A note to acknowledge and thank all of the incredible, therapists, nurses, doctors and every health care worker who has helped us bring Joey along his journey.
To the doctor in Columbus who performed the chorionic villus sampling when I was 13 weeks pregnant and carefully studied Joey's septated cystic hygroma, I thank you for your kind words. As we finished our appointment you said, "I will pray for you." At the time it was not what I wanted to hear. I didn't want to need to have a doctor pray for me or my baby. In reality, it was so incredibly kind and I have never forgotten those words. My goal this week is to send you a letter and some photos of the baby you said you were going to pray for. Thank you Doctor, for your prayers and your medical expertise in safely performing the CVS test with no damage to baby Joey.
To my OBGYN who delivered both Thomas Henry via c-section (2 weeks late- only weighing 9lbs, 4oz) and Joseph David via c-section (3 weeks early - weighing in at 7 lbs, 11oz). You first saw the hygroma on the early ultrasound. You sat me down in your office and told me that it didn't look good. You didn't leave me alone. You stayed there while I called my husband so he could come pick me up. You walked me out the back door so I could maintain some privacy during that scary, scary time. You hugged me so tight at every single appointment thereafter. When the heart defect showed up you got us to the cardiologist. When I tested positive for gestational diabetes you laughed with me about how insane this pregnancy had been. When the ascites showed up you listened and took all of my hysterical phone calls. When I was angry and hurt by the suggestions of another doctor you comforted me. When it finally came time for the c-section I asked you to make sure every single person in the operating room knew that Joey had Down syndrome and that there would be no derogatory comments. You promised me that and you kept your promise. For your care and your expertise-- I cannot thank you enough.
To the kind nurses who helped us during the days following Joey's birth. You gave me a copy of the book Gifts: Mothers Reflect on How Children With Down Syndrome Enrich Their Lives.
You brought Joey into our room every chance he was allowed a break from the bilirubin lights. You helped us celebrate his birth and get our feet under us before we left the hospital.
To Kris the RN who helped us maneuver the mysteries of getting Synagis for six months so Joey could be protected against RSV. To our wonderful Pediatrician and the incredible office we take the boys too. You have been there for us with such patience and professionalism. Your office is a joy to call and a joy to visit. You make it easy to be a parent. We cannot thank your office enough for your care. For calling us the morning after every ER visit. For always finding an appointment slot for emergencies. For how kind you are to the boys during every single visit. Your office sets an incredibly high standard of care. We thank you so very, very much.
To our amazing pediatric cardiologist who diagnosed Joey's heart defects when he was only 24 weeks in utero. How you said to us, "I truly hope that I am wrong." How you walked us through every single appointment and through every chamber of the heart with such patience and such clarity. How you helped us plan for his surgery and his care. Your expertise and your kindness at every echocardiogram will forever be remembered.
To the wonderful pediatric plastic surgeon who helped us get Joey into his helmet well before his heart surgery so that we could make as much progress as possible in a short amount of time.
The the experts at Hanger prosthetics who taught us how to clean and adjust the helmet. Who saw Joey weekly to shave out little spots of the helmet and help round out his flat spot.
To Jane and Jane and all the amazing speech, occupational and physical therapists at Akron Children's Hospital-- we thank you so very much for your support. Your encouragement. Your experience and expertise. Your words of advice and wisdom that you so gently give out on a weekly basis. You provide us with guidance and structure. You give us hope.
To the nurses and doctors at the University of Michigan who made heart surgery a mountain that we were able to climb with as little difficulty as possible. To the social worker who sat with us at 1am while Joey was still under a medically induced coma and told us stories about her older brother who has Down syndrome.
For making us Ohio Buckeyes completely feel at home and safe in an incredible hospital and heart center. For healing Joey's broken heart-- we thank you U of M.
Help Me Joe
That is our family's nickname for the Help Me Grow services Joey receives through the county. Help Me Joe has literally been a lifeline for us since right after Joey's birth. From Tina and Kelly our Coordinators to Denise and Kelly our Physical and Occupational Therapists, Help Me Joe has been a cornerstone to us during this past year.
They come to our home, they help us use our own toys and surroundings to help Joey become his best self. We love to see you arrive and we hate to see you go. Your visits give us so much encouragement. You help us see and understand progress that we sometimes don't even realize is happening. You help us take care of not only Joey's needs, but our entire family Before Joey's surgery, you helped us get a book to make for his big brother Tommy while Tommy had to stay in Ohio.
After Joey's surgery you have helped us get right on the therapy train and your words of advice and wisdom feed our progress in such incredible ways. You not only help us meet milestones, but you celebrate every little milestone with us. You help us make sure Joey's reflux is being addressed. You note every single doctor's appointment. You lend an ear when we are frustrated or unsure.
We are so grateful that Summit County Developmental Disabilities Board makes your visits possible. You have been our anchor and you have steadied our ship when we needed it the most. Thank you for your love and care for Joey and for our entire family. Thank you for all you do for all of your families. We will be voting TO RENEW ISSUE 25 in November because we would not be where were now with Joey's progress without you.
To all of these amazing women and men, we thank you for your medical care and expertise. For your compassion and passion. For helping us shed light where there is darkness and showing the world that there is nothing to fear about having a child with Down syndrome.
|Hershey is our Havanese who has become Joey's self-appointed therapy dog.|