Down Syndrome Parent To Parent: Good Friday

Blog Nancy Spiegel

Posted by Nancy Spiegel. Written by Kerry Ryerson.
A brand new world opened up to me that early spring day in Augusta, Georgia. It was Friday, March 28, 1986 – Good Friday and Sean’s actual due date!!! The dogwood trees were starting to bloom and it was a beautiful day! Sean had been born two weeks early on Friday, March 14. He had been home for one week after having spent his first week of life under the bilirubin lights in the hospital. Every morning of his first week at home I had taken Sean to the hospital to have his heel pricked to check his bilirubin count, followed by a quick trip to the pediatrician, Dr. Hansen. My mom and my 22 month-old daughter Ajda had accompanied me each time.

Today’s schedule was different. We had an appointment to see Dr. Hansen in the afternoon and then get Sean’s blood work done. I was ready to receive the test results that I was certain the Doctor would have by now. The results would verify whether or not Sean had Down syndrome. Being Good Friday, I was overly optimistic that maybe that was a “sign” that the Doctor would have good news!

Dr. Hansen was surprised to see me alone with Sean and he expressed concern that my mom was not with me for this visit. It didn’t take long for me to understand why. He had the results of the chromosome test. Yes, Sean definitely had Down syndrome – Trisomy 21. Dr. Hansen was very kind in his delivery, as much as anyone could have been. I left his office holding Sean tight against my body, wanting to protect him from this diagnosis. I went down the main hall to a short hallway where I dropped to my knees with my sweet, innocent baby and I sobbed with such intense pain that it vibrated throughout my body. I felt completely alone in the world, cradling my baby boy so gently yet so firmly in my arms.

Wow…..what happened to Good Friday? What a cruel turn of events. It didn’t turn out the way I had hoped! The way I had planned! I had no way of knowing it at the time, but the world that opened up to me that day, the one that I was so deathly afraid of, so terribly ignorant of, has given me more knowledge, more strength and more love than I ever knew existed! This beautiful world that my daughter, my son and I have lived in since Good Friday of 1986 has taken us in a direction that has only enhanced all of our lives in ways that can never be measured.

One of the most difficult things I had to do after Sean was born became one of the most healing processes I went through. Telling my friends and family about Sean having Down syndrome was horribly painful and I think that was because no matter who I told, it was upsetting to them too. It hurt me to pass along the pain that I was experiencing along with the realization that this was forever. Funny though, every time the words came out of my mouth, a weight lifted off of me, helping me with my own acceptance and healing.

When I visited Dr. Goldsmith (my OB/GYN) for my six week check-up, he asked how we were all doing. When he asked about my husband I shared my concerns with him that my husband had not told any of his family or friends about Sean having Down syndrome. I think Dr. Goldsmith had developed a very good sense of what our family dynamics were really like and was genuinely concerned about us. Dr. Goldsmith was a terrific doctor and a very sincere and caring person. I had been a patient of his from November 1983 through June 1986 and during those two and ½ years he saw me through three pregnancies which resulted in the birth of my beautiful daughter Ajda in June 1984, a miscarriage in April 1985 which also involved serious surgery, and then the birth of my handsome son Sean in March 1986!

After that visit to Dr. Goldsmith, I took it upon myself to contact my husbands’ family and tell them about Sean having Down syndrome. In speaking with my brother-in-laws wife, she said “We will love him no matter what!” Those words from my husband’s family meant the world to me! There was now just one more person that I felt needed to hear about Sean having Down syndrome from either me or my husband – my mother-in-law. She lived in Turkey and spoke very little English and I spoke very little Turkish so I would not have been able to call her to give her that kind of information. My husband chose not to tell her and waited for her to question him when she saw pictures of Sean as he grew. Oh well, my conscience was clear, my communication had been as complete as it could be and I was moving forward with my new family! I had accepted our new life and started adding positive energy to it!!!

When Sean was four months old and Ajda had just turned two, we moved to Huntsville, Alabama. Through our involvement in ARC’s occupational, physical and speech therapies we met several other families that had children with Down syndrome. Four of us banded together and started the Huntsville Down Syndrome Association. At least a dozen families were regularly involved and we would meet monthly in each others homes for fantastic potlucks and lively discussions about our wonderful families. We shared information about schools, services and health concerns. We even hosted a rather large and impressive Down Syndrome Conference with Patricia Oelwein (nationally renowned educator and author on Down syndrome) as our main presenter!

Ajda, Sean and I became our own happy family of three a few years after moving to Huntsville. Their dad and I divorced and he moved to Knoxville, Tennessee. Ajda started kindergarten and Sean started Special Education preschool, both of them at the same school. I had gone back to school and started a new major - Speech and Language Pathology. When it came time for my student teaching, I was assigned to the same school where Ajda and Sean were going! Life was good!!!

Sean has always been athletic so I started him in Challenger softball when he was 6 years old. When Sean was 8 we left Alabama and moved to California, my home state. Sean continued playing Challenger softball. He joined an AYSO VIP soccer team and started attending Special Olympics South Bay track (athletics) and tennis practices and began participating in competitions. Sean continued learning about sports by becoming regularly involved in athletics, basketball, flag football, power lifting, snowshoeing, soccer, softball and tennis. Through the years Sean has expanded his athletic ability by participating in these sports through the following organizations: Special Olympics South Bay, SPORTS For Exceptional Athletes (S4EA), the City of Torrance Special Needs Recreation program and most recently Valley Christian School in San Jose.

Involvement in all of these sports taught Sean not only the skills of the sports but how to: listen, be respectful on and off the field, take turns, be a team player, win and lose graciously. Sean has been able to maintain good physical health and strength because of the continual activity he engages in. Sean has acquired a real appreciation for watching professional and college teams play just about any sport! He loves to attend sporting events and he enjoys watching them on TV! An unexpected yet truly significant bonus is that Sean has developed several great friendships through these activities and has a wonderful group of very close friends.

Sean found his niche in the school system while in middle school and high school when he joined the JROTC program. He thrived on the marching, the drills and the machismo sounds of the commands that were constantly bellowed out! Through JROTC Sean also had the opportunity to learn how to repel down walls, stand with his platoon for what seemed like hours at Marine Birthday Celebrations, work community events, and get promoted through the JROTC until he graduated from high school. When Sean was a senior we attended the year-end JROTC Awards Banquet and with the encouragement from Retired Lieutenant Colonel Falasco, Sean gave an impromptu speech at the podium – thanking everyone so very eloquently. It was such a proud moment for Sean in front of hundreds of people. He absolutely shined while speaking into the microphone and I sat in awe of him, completely overcome with tears of joy and wonderment for my amazing son.

Ajda is now25 years old and Sean is 23. We have not always had the easiest life but overall I think we have had a fantastic life full of amazing friends, great fun and always interesting and new adventures! Both of my children are working in great jobs and have terrific lives!

Ajda is absolutely gorgeous! She is a very responsible and bright young woman with the most beautiful eyes and smile! She earned her B.S. Degree in Business Marketing from CSULB in 2007 and she has a great job working for Disney. Ajda and her boyfriend Cary (a super guy!) travel to exotic places every chance they get!

Sean is a very handsome young man! He has a great sense of humor, is incredibly compassionate, polite and well-mannered! When Sean completed his schooling at age 22 he continued working at the Red Lobster part-time and after being there for 14 months, he said that he wanted to work longer hours – he wanted a “real job”. The dynamic employment specialists at Harbor Regional Center found a new job for Sean and in May 2009 he moved into a 30 hour per week position at DirecTV complete with benefits!!! Sean is a very serious and hard worker. After being on the job for three weeks, he earned the title of “Best Performer”!

I can not imagine what my life would be like without my children and more specifically if Sean did not have Down syndrome.