Chrystal's Story: Shortly after my husband and I celebrated our love by marrying, we got the wonderful news that we were going to become parents! We were blessed with the final piece of the puzzle that would bond our families together forever.
We immediately started preparing a nursery, creating a birthing plan, and shopping. I took great care of my health by eating properly and forming a great partnership with our doctor. We were excited to find out that we were having a boy. Because of my age, there were a lot of tests and fetal monitoring but had no difficulties throughout my pregnancy. It was wonderful.
My water broke and we immediately went to the hospital. It was a very smooth labor process, but then came the pushing. I immediately could tell something was wrong. There were a lot of nurses and doctors and I couldn’t hear or see anything. After a complicated birth, I noticed my baby was a greyish blue. I heard my husband saying “What’s that? What’s wrong?” I was confused and scared as hospital personnel rushed my baby away to intensive care. Here I was, a new mother, and I couldn’t even have my baby with me.
The next few days were all a blur as we got differing diagnoses; the doctors didn’t really know what was wrong with our son. Finally, we got an answer; he had a rare form of Spina Bifida called Myelocystocele.
TJ’s future was uncertain because every visit to the NICU revealed more unpleasant news: tethered spine, malformation of the lower legs, decreased sensitivity in the lower legs and feet. My baby was in the incubator hooked up to all sorts of machines and we were told that he will never be able to walk, crawl, or even go to the bathroom on his own.
I felt scared for my son. I only wanted what any parent wants for their child, a normal life. I didn’t know how I was supposed to care for and support a special needs person. This innocent little baby was 100% dependent on me knowing what to do, and I didn’t. My life was a dark tunnel of confusion and uncertainty with no light or end. Oh, the tears I shed!
Then one day, a nurse from Children’s Hospital of Wisconsin told me that our family had been referred to the Birth to Three program through Easterseals for physical therapy. Honestly, I wasn’t that excited because I felt like my son was a guinea pig or a sideshow -- every time we met a new health professional, they all wanted to see and touch his abnormality.
Judy from Easterseals showed up on my doorstep when TJ was three months old. I thought it was going to be like the many other people who came over and wanted to measure, weigh, poke and prod my son. But the interaction with Judy was instantly different. She was warm and understanding. She treated us like people, a loving family with real concerns about the wellbeing of our new baby. Additionally, she assured us there was a whole support group that would stand with us every step of the way and do everything necessary to get our family to that normalcy we so desired.
As the weeks and months progressed, she visited us weekly to assess TJ’s progress and give us a game plan of things we could do at home to encourage our son to meet his developmental milestones. We played games, went on outings, shared therapy sessions with friends and family so that everyone could take part in TJ’s development. She even modified her schedule according to our needs so she could accompany us to doctor’s appointments to stay abreast of his condition and ask the important questions we never thought to ask. She was a breath of fresh air, the light at the end of the tunnel that I never thought I’d see. She helped me see that together, we CAN do this.
Our son TJ is 2 years, 4 months old and has achieved so much. Even though it was thought that he would never crawl, walk, or go to the bathroom on his own, with Easterseals help and guidance he is crawling, walking and in the process of potty-training! If he falls, he can stand unassisted. If he wants to get away from the bath or bedtime, he will run! If there are stairs, he can ascend and descend with no problems. He can do all the things that we do every day without a second thought. With the help of speech therapy, he can effectively communicate and let us know his desires and thoughts.
Why am I telling you this? Because with the help of Judy, Natalie, Carrie, and the rest of the Easterseals team, Terron is a NORMAL KID! He’s terribly two, and I wouldn’t have it any other way.