here’s a nice letter dara wrote for ian’s pre-school class about emmett:::
Pride in Identity as a Special Needs Mom
Having children is quite the life-changing experience, as you know. I am proud of my kids. Who they are, what they need, and how I provide for them have contributed to my identity.
My oldest son, age seven, is profoundly brain-injured due to lack of oxygen at birth (he was stuck with the cord around his neck while I pushed for over 4.5 hours). Because the part of his brain that controls his muscles was damaged, he cannot walk, sit up, roll, crawl, speak, or even point. He cannot successfully grab or play with toys. He struggles regularly throughout each day to clear his throat. He is fed through a tube in his belly. He has seizures that vary from mild to severe. His legs are extremely stiff and difficult to open to change his diaper. His body has become deformed because of how his abnormal muscle tone has built the shape of his bones over time. He uses a wheelchair. A simple head cold is an unbearable experience. I have learned a lot about brain injuries.
I have also learned to appreciate what he can do, and can read his cues well. He can look at what he wants. He can hear. He can understand. He can smile. He can cry. He can frown. I love his face. His face is his voice. I can see what mood he’s in, even when I’m behind him, by studying the shape of his cheeks. The tops of his cheeks fill up like little balls when he smiles. The bottom of his cheek will thicken when he’s sad. A growing bottom lip tells me to hurry up and make him feel better or else those dreaded tears will be diving out of the corners of his sad eyes very soon. His eyebrows signal a concern, and his eyes point to it. Those eyes fill up with sparkles when he’s happy and staring into them is intoxicating. I have learned to relish those moments.
After he was born, I was in a state of shock for some time. I didn’t understand what having a brain injury really meant. The doctors said it was possible that he could be fine. So that’s what I held onto. But in the months that followed his birth, I could see that he was not doing the same things that other babies his age were doing. I was scared. I was so afraid. I prayed. I researched. I did everything I could to help him be “normal” every minute of every day because that’s what I thought my role was. And it was really, really hard because all the intensive therapy in the world wasn’t enough. I felt like I had failed him. Once, I went for a walk by myself. I saw a little boy playing ball with his dad. I remember starting to cry and asking God if everything was going to be OK. Just then, I looked down on the street and saw the letters “OK” spray painted on the pavement.
Seven years later, life is still difficult sometimes, but we are OK. We are more than OK. My husband and I have learned that the small things we used to fight about are inconsequential, and what really matters is something very different. We have two more amazing children that bring us more joy than I can even begin to share here. While our home is stuffed with medical equipment, constantly visited by nurses and therapists, barraged with phone calls, and tugged at by endless appointments, it is also filled with love. We have fun in whatever ways we can as a family. My identity as a mother of a special needs child is something that I am proud of. Like any practice, my spiritual growth has been molded by challenges, and I am proud of what I have learned along the way. I hope that the challenges my younger children face as siblings of a special needs child will eventually provide them with a strong, lifelong sense of pride as well.
Dara O’Loughlin, mother of Ian – Mrs. Unger’s 4 Year Olds
