Being Special in a Typical World: Joy, Grief and Struggle

1 in 10,000 to 15,000. That sounds like impossible odds. It isn’t. No one expects to find themselves as a member of the few. As rare as special is, it actually occurs everyday in some way. Still, special can feel so different.

This typical world has a hard time with special. I encounter a lot of fear and ignorance around disability. Many times when people hear a label for a child, like autistic, all they know are some stereotypical behaviors- flapping hands, averted eye contact, rocking back and forth, covering ears or licking objects. Instead of seeing the behaviors as a way to learn about the child and how to help her become her best self, they choose to see the behaviors as the child herself.

For as much as some people have the intention to accept everyone, there is a comfort in typical, in having the child who sits and does what is expected. When a child is outside of the comfort of typical, when she is special, it is more difficult to see her, to relate to her, and to build a relationship with her. It takes far more patience, time and dedication.

For Coral and our family, we spend everyday in this special space, due to Coral’s diagnosis of Dup15q. Special can isolate in certain situations, while it unifies people with shared challenges. It is a place where life can feel totally unsettled, yet simultaneously perfect. It is the worst heartache and grief coupled with the purest joy. It is one of life’s juxtapositions- being special in a typical world.

I have learned that getting to know special is an incredible and exhausting experience.   It brings us outside of typical. It joins challenge and grief to joy, a reminder that life is a mixture of both of these. It teaches that inner strength can be a bridge from heartache to happiness.

Some of those joyous moments are in the inchstones and milestones. Of course, it is a thrilling moment when Coral reaches a milestone. But no less amazing than the milestones are the inchstones Coral reaches. Inchstones are the stepping stones to the larger milestones. They are not promised to Coral. They are the result of her hard work and persistence in learning something that does not come easily to her. I can vividly recall the where, the when and the how of these seemingly small accomplishments that are so huge for Coral. When Coral does make these strides and reach these goals, I am fully present in the moment. Purely, completely, and joyfully.

I remember Coral’s first smile as an infant; her eyes did not meet mine, but her smile was big and full of happiness. Many weeks after, I remember the first time she looked deeply into my eyes to connect with me. I remember the first time she engaged in joint attention; she was so excited about playing with a new toy, she looked over at me while smiling to share her joy with me. I remember the first time she imitated Tate; he banged on her high chair table, and she banged back. I remember the first time she played with a toy (other than a cause-effect music toy) functionally and with purpose- dropping the ball down the chimney, so it would come out the door of the house. I remember the first time she saw me from across the room and reached her arms out towards me. I remember the first time she walked to the front door to “greet” Mimi and Dziadziu. I remember the first time she took my hand to help her move a “slider” in a book. I remember the first time she imitated my vocal play. I said, “Mamama”. I waited and waited. Her little lips started to move without any sound and then, “Mamama.” I remember the first time someone called her “smart.”

These moments of amazing accomplishment would not create such joy, if they were not countered by moments of grief, anger and sadness. It is this other side that brings perspective to Coral’s special development. Some of these moments are challenging medical situations. I remember when Coral was lying on the couch next to me at 3 days old, blue and not breathing. Home alone with her, I called 911. I remember how every test in her first couple of weeks of life (except her EEGs) came back “normal,” and how I felt hope with each returned test. And then I remember the moment when Coral was 3 weeks old and two doctors walked in and said, “We found something in the genetics.” I remember the worst apneic event Coral had at home. I can see Tom holding the oxygen bag, repetitively pumping the bag to supply her with oxygen. I thought she was going to die; I can see her blue-gray face, her not breathing, and then her labored breathing. I see myself, kneeling on the floor between my sister and Tom, over come with primal emotion, yelling and sobbing, “No! My baby girl!” I remember nursing her before bed when she had her first cluster of infantile spasms; her body tightened and her eyes averted up and to the side, while my heart dropped to my stomach.

Beyond these times of medical issues, there are moments everyday when life bumps into me. During these times, I am humbly reminded how special and different Coral’s life and our family’s life is. These are often the moments when special can feel lonely. I remember being at a birthday party when a group of moms started to talk about the “next generation” (the little sisters of Tate’s group of preschool friends) who would attend the same preschool. I remember wondering what I should explain about why Coral would not be attending that school, or if I should even explain. I remember the first look of pity I received after sharing Coral’s diagnosis. I more clearly recall the first look of fear I saw in someone’s face after talking about Coral’s challenges. I remember the first time someone made a thoughtless and hurtful comment about special needs kids in front of me. I remember when Tate asked Tom and me, “Will Coral talk when she is older?”

I will never forget any of these moments. They have come together to create the fabric of our family’s very different and special life. They also are the teeter-totter of this life. Those moments of incredible joy would never be so full if it weren’t for the moments of grief and sadness. The challenges are what have made the highs so high. It is the daily struggle that brings a new perspective. It is the struggle that allows me to see each person through new eyes- to wonder what their own struggle may be. It is the struggle that reminds me to give thanks.

This is a world full of hate and fear, but with a larger potential for love and faith.  As Coral begins to spend less time with me at home and more time out in the world at other activities, I wonder which world she will find. As her differences become more evident with age, how will people treat her?

I have to hope that the world will want to accept Coral’s special exactly as it is- not as something to fear but rather as something to embrace. I have to hope that adults will see the value to both themselves and their typically developing kids in including children and adults with disabilities in every part of society. I have to hope that in some way special will have its place next to typical.

Special is where life’s wonder resides. Through Coral, I have found my special in this typical world. I’m holding on tight because this is destined to be a wild ride.