What I Want You to Know is a series of reader submissions. It is an attempt to allow people to tell their personal stories, in the hopes of bringing greater compassion to the unique issues each of us face. If you would like to submit a story to this series, click here. Today’s story is from Jill.
Hi, I’m Jill. I have 4 children. Two of my children are deaf.
A little background. I got married at 22, right after my husband and I graduated college. We were working 4-6 hours away from our family; we were with a great company. A couple of years after we got married we decided to try to get pregnant. It worked. Actually, it worked much sooner than expected. After I figured out that I was pregnant, I started with the guilt. What had I done when I didn't know I was pregnant? I had done many pregnancy no-no's. Little did I know what was waiting for me. On October 30, 2000, I went to the hospital with my pregnant self and at 2:43 p.m. a common miracle had occurred. My sweet baby, Ethan, was born. He filled my heart with a joy that I hadn't known. What a precious baby. On the day we were to be discharged, a nurse came to talk to me about Ethan not passing his newborn hearing screening. Honestly, I wasn't concerned. I'm pretty laid back, so when she told me that lots of kids don't pass the screening and it's usually due to an overabundance of skin cells, I didn't worry. When Ethan was two weeks old, I took him back to the hospital to get rescreened. He didn't pass; I didn't know what it meant. The word deaf hadn't entered my thoughts at that point. I took him straight to the pediatrician and asked that he be seen. He told me that if he had failed the screening twice; that it probably wasn't due to any sort of blockage and to prepare ourselves for the news. We waited forever (at least it seemed like forever! -) to have a full audiological examination. Long story short, my son was deaf. What? My son? What had I done? What did I do?
My son was deaf. We had no family history. We landed with a group (physician, audiologists, speech/language pathologists) that was fabulous and helped us navigate the road for Ethan. He was in speech/language therapy starting at 10 weeks and at 10 month (after a LONG.HARD. battle with insurance) he received his first cochlear implant. The cochlear implant is a device that provides electronic stimulation to the auditory nerve when the ear doesn't work...it's more like a prosthetic ear than a hearing aid. With his implant and therapy (2-3x/week for 3 years), Ethan was hearing at normal levels. His speech is perfect and he had progressed beautifully. He is currently in the 4th grade in our neighborhood school without any special services. He earns good grades and has friends.
Between February 2002 and October 2004, I had two more babies, both boys. Both passed their hearing screening. We had genetic testing done. Ethan was most likely a statistical fluke. Our odds of having another baby who was deaf was slim. Life continued on after the birth of each child. I quit my job to stay home with my three crazy boys. We could do this. We were doing this. We lived life. But my heart, oh my heart. I felt so guilty for giving birth to a baby with a defect. Mind you, I loved him. I just wondered what I had done to cause his deafness.
In July of 2008 I learned that I was expecting again. We were excited. I expected a fourth boy and thought of what he would do to our family. Then, fear struck. I started bleeding and I always bleed early in pregnancy. We found out the baby was fine. But, I kept bleeding. A lot. Every doctor appointment, my sweet doctor tried to prepare me for a less than ideal outcome (miscarriage and stillbirth), she was surprised that my pregnancy was holding on. It was a difficult pregnancy; Gestational Diabetes, check. Pre-term labor, check. Bedrest, check (from 20 weeks on..), all of my tests came back abnormal. When I found out at 16 weeks that I was expecting a girl I about fell off the table. I made them double check. She was definitely a girl; we would name her Annelise. I couldn't believe I was going to have a girl. I was scared out of my mind. I knew boys. I don't have a great relationship with my mother, how was I going to raise a girl?
Fast forward through 14 l.o.n.g. weeks of bedrest. I called the doctor one Tuesday morning because I felt like something was wrong. Annelise wasn't moving. A failed non-stress test and biophysical profile earned me a night in the hospital. While I was there, more contractions, but Annelise had bounced back. I was hospitalized for 9 days before I had her. I gave birth to my precious, sweet baby on March 5 2009. She was darling. I loved her from the moment her slick body was on my chest. I had tried to guard my heart since we had such a precarious pregnancy, but it was no use. She was mine. My precious girl. Annelise Marie. She was deaf. I was devastated. I hated how my husband told me. I hated the nurses for assuming she would pass the next time. I knew. I tried to convince myself otherwise. It was no use. She was deaf. Oh. the pain. It pierces my heart to this day.
Oh, but the gift that is Annelise. She is so special. Love has no boundaries. Everyone who meets her is charmed by her. Ethan was thrilled that she couldn't hear...she was just like him. And he loved it. No malice, only love. His brothers could hear, but he was special. Just like his sister. And, all of them are special. precious. adored. loved. hearing or no hearing.
Annelise got her implants at 6 and 8 months. She hears great and has a vocabulary of an average 2 year old. We do speech/language therapy 3x/week and a music class once a week.
Me? I didn't fare so well. I was in a deep depression. I was a mess. I honestly thought "who did I piss off in a past life?", was I such a bad person that my children needed to be punished? No. I wasn't. I wasn't punished. I was chosen. I am lucky enough to have given birth to four amazing children. I am a damn good advocate for my kids. My children are fabulous. Two hear differently...
What I want you to know is this...I grieve my childrens' hearing. I can't bear to tell my ten year old that he probably can't be a pilot or a police officer. I grieve to this day and Annelise is almost 2. I wouldn't trade them for the world. They are breaking stereotypes every way they turn. I have more compassion, kindness and love...and I can teach all my children better because of this.
What I want you to know is this...I'm grateful. I still struggle with my depression sometimes, but I see the beauty of my children and their hearing differences. I'm grateful. I'm so happy my children were screened at birth and we found out early so we could help them as much as possible. I'm grateful that we have a great program that has never watered-down any child's potential. I'm grateful for learning to listen with not just my ears, but with my other senses too. I'm grateful for them. All of them.