First of all I would like to express how happy and honored I am to share our learning experience and story about our Jace to all of you. I feel that I am an open book and the more that you know about Jace the better. I can’t help but to get tickled, be proud and also sad when I hear Jace telling other children about his disability. That is the #1 thing parents feel with a special needs child…an array of emotions happening all at once!!
Overall I had a great pregnancy. I had one incident where at a dr.’s visit I had high blood pressure and high protein in my urine. I was put on bed rest for 1 week and after that week all was well again. At 34 weeks I noticed Jace had not been moving. My mom, dad and I went to the doctor and after an hour we welcomed Jace to the world.
After 1 week in the NICU the dr. came in and told us Jace had suffered from a stroke while in utero. This is what caused Jace to stop moving. The dr. told us Jace would be paralyzed on the right side of his body. Everything at that point happened so fast we could not keep up with what has happened. I will have to admit that during the pregnancy I was so wrapped up with the sex of the baby. I wanted a girl and Nathan wanted a boy. The thought had NEVER crossed my mind of praying to have a healthy baby. At that point sitting in the hospital with a sick baby your mind is racing. Nathan and I thought “ Where did we go wrong...What are we gonna do…What have we done!!” Then I got angry. I got so angry!! I would see young girls coming in and out of the hospital having these healthy babies like it was nothing to it. But now I am the one that is lucky. We are the ones that are blessed! A dear friend pointed out to me that if it wasn’t for Jace I would not have met her and all the wonderful, amazing people along the way. She is right! Nathan and I knew nothing about life before our Jace.
So at this point we got connected with the services we needed for Jace. Jace started PT and OT services through TEIS (Tennessee Early Intervention Services) and TIPS (Tennessee Infant Parent Services). We were on the right track. We were accepting and adjusting to our new family.
When Jace was 2 years old he was battling with frequent ear infections. Our pediatrician referred us to see an ENT. Our ENT does a hearing screening on all her patients. And on February 2004 another nightmare slapped us in the face. Jace was diagnosed with auditory neuropathy. Auditory neuropathy is a hearing loss where sound enters the ear but the signals that travel to the brain is distorted. I was incomplete shock! Jace never showed any sign that he could not hear. He would respond to all environmental sounds.
This was huge!! What else could go wrong with my baby?
Jace was fitted with hearing aids and use of an FM system soon after being diagnosed. The FM system is his own personal microphone that helps magnifies the speaker talking to him over background noise. Now after learning about hearing loss it could have been so easy to just throw the towel in and say that’s it. But Nathan and I prayed and prayed and prayed. And through that we had the strength to handle anything. We have got this precious, sweet little wild child that depends on his parents to take care of him and his needs. So we had to learn!! We had to learn what all these letters and initials meant. TEIS, TIPS, OT, PT SLP, IFSP and IEP. That is so overwhelming!! But now we know. Our sweet little family has accomplished so much.
So now with the hearing loss and the stroke (cerebral palsy) we asked the professionals to guide us in the right direction we needed to be in. Jace started toddler group at Vanderbilt then followed to Mama Lere Hearing School till he was 6 years old. Now I am proud to say that my Jace is in 2nd grade in a mainstream classroom at Pegram Elementary school. What an accomplishment!! I am so thankful for every one that has been in his life and on this journey with us since he was born. My advice to parents with a “special” child is to ask the professionals and /or other parents for guidance and support. It is a roller coaster of emotion and probably always will be but with the right support from family, friends and professionals we all come out strong. My sweet, wild child Jace is as tough as they come and we adore and love him just how he is! Thank you for taking time to read this and learn about our journey. Take care!