In 1992, our second daughter, Jordan Lee was born 10 days late and weighed only 6.8 pounds. A sleepy (but beautiful) baby, she was difficult to feed and almost immediately was diagnosed with bilateral hip dysplasia, club feet and several other disabilities. She spent most of her first two years in casts followed by several surgeries to correct her orthopedic deformities. We also immediately noticed her inability to track objects with her eyes. She had her first seizure at 4 months old. Diagnosed with microcephaly and several other health issues, we really felt paralyzed and overwhelmed with the challenges of raising a child with such severe challenges. At one point, I remember saying to my husband, Peter “how are we going to raise her (Jordan)” and he said “we will raise her together.” And we did…
Jordan has provided us with extraordinary gifts and guided us through this incredible journey called life.
Jordan’s older sister, Justine is a Neo-Natal Intensive Care Unit Nurse. She has wanted to be a nurse since she was a child. She grew up witnessing the amazing care provided to Jordan by four wonderful nurses who took care of Jordan through the Care At Home Medicaid Waiver program for 11 years in our home. These women were a part of our family and helped Jordan thrive at home for many years. We are forever grateful to them.
Justine has loved and cared for her sister for as long as I can remember. Justine waited with me while Jordan had a 10 hour surgery to correct a curvature of her spine and stayed by her sister’s side during her recovery. However, if you ask Justine if Jordan was given any “special” treatment, she will swear that everyone was “treated exactly the same in our house.”
After 6 years of caring for Jordan’s needs and two very difficult miscarriages, we were blessed with a third daughter, Jenna Elizabeth. Jenna learned to walk by pushing Jordan’s wheelchair. She constantly asked if she could bring Jordan to school for “show and tell.” She was so proud of her sister and I am not really sure she understood (or cared) that Jordan was different. Jenna loves her sister and is devoted to both her siblings in every way possible.
After Jenna was born, we realized that our family was complete (although there is always room for a dog or two). Hence, two rescue dogs-Heidi and Hunter have joined our family. At the time Jenna was born, I was working part time as a service coordinator for Family Connection and realized that I wanted to continue to help families with disabilities in some way. After lobbying for better insurance coverage for medical equipment for children with disabilities and arguing with a few school districts for better special education services, a dear friend suggested that perhaps I should go to law school. I responded that I would be 43 when I graduated and her answer was “you will be 43 anyway!”
I mentioned the proposition to my husband and instead of saying this was a crazy idea (which I was sure he was going to say), he said “go and be a lawyer.” So, at age 39, with three children, one in a wheelchair, I started law school at PACE University School of Law in White Plains, NY. I still look back and wonder how my family survived those 4 years. Once again “we did it together.”
After graduating from law school and practicing for several firms, I was fortunate a few years ago to join the Cuddy Law Firm where I am Vice President and Managing Attorney of our White Plains office. I practice in the area of special education law, special needs planning and guardianship. I work with families every day who face the challenges that we all face. I appreciate their challenge and I hope they feel confidence in the fact that I will zealously advocate for the needs of their families. I am blessed to have incredible work colleagues who are just as committed to the work we do to assist families. None of this would have happened without Jordan.
Now for the most important part, Jordan lived home until she was 16 when we were so fortunate to find the Center For Discovery. Jordan who is now 23, lives at the Center. She has a full, happy life. We feel so blessed that her future is secure and the Center will care for her for the rest of her life. We explore the Catskills together and love spending time with her in her second home. She comes home also but we are positive that she likes the Center better.
It has not been an easy journey. There have been some very sad and stressful times given the huge amount of care that Jordan needed. Early on, I thought about the life she would have led and what our lives would have been like if she was “typical.” At some point, I realized that Jordan is perfect just the way she is. She has an extraordinary and very full life. We have met the most incredible people (including the Pope). We have loved and laughed and our family has grown closer because of Jordan. Our children have learned the meaning of unconditional love and the gift of compassion.
I speak to many organizations throughout the United States on issues facing families of loved ones with disabilities. When I tell this story, attendees frequently ask “how did you do it?” I provide the same answer my husband gave me many years ago- “We did it together.”
Thank you for listening to our story. I hope that anyone who is reading this will be comforted by the fact that even though there are many challenges to raising a child with special needs, life can be full and wonderful and crazy (in a good way). The impact can be far reaching. Jordan has touched so many lives and we are incredibly thankful for her gifts.
The Arkontaky Family