“Come with me sissy,” my two year old son says as he takes my daughter’s hand. My heart melts when I hear my son, Elijah, talk to Jaycee with such love and care. There was a time before he was born when I wondered if a moment like this would happen.
Years before there was an Elijah or a Jaycee, my husband and I only imagined ourselves one day holding two or three children. A positive pregnancy test in 2005 meant a dream was becoming a reality. Jaycee was born and diagnoses were given. Down syndrome and a complete AV canal heart defect was something we were not prepared for. But, life demands that you adjust to the change of plans and so we did.
Over the next two years, days were clocked by timed medications and scheduled feedings. Weeks were measured with countdowns to her surgeries: open heart surgery at three months, strabismus correction and first set of tubes at fifteen months, a heart catherization at twenty months, and another open heart surgery at age two.
As Jaycee fought her way through these health issues and several other ones, we prayed she would overcome them all. She had a permanent place in our revised dream and we wanted to see her life lived out. When her health stabilized, it seemed like the right time to have another child.
I had mixed emotions about a second child. Jaycee’s therapy and doctor’s appointments were frequent and would be for some time. Her intellectual disability meant she would learn things at a slower pace and would need one-on-one support to learn even simple skills. It literally took months to teach her how to drink from a straw, for example. She needed more time and attention than the “average” child her age and I made changes to do that for her. But, could I handle all of that plus a new baby?
I thought about Jaycee’s future sibling because his life would be impacted by all of his sister’s requirements and challenges too. Would the sibling grow up to be resentful of her or us because she did require so much attention? How could we explain Jaycee’s problems to a sibling in a way that he could understand and appreciate her? Would Jaycee’s frequent illnesses make him fearful? And what if…we had another child with a disability? It was a question that I dared not utter aloud to anyone but my husband but it was often racing through my mind every time I considered another child.
A decision was made and a positive test started new dreams for our family. Several weeks later, a miscarriage abruptly ended that dream. So life demanded yet another adjustment from us.
But, when Jaycee was three years old, I gave birth to a perfectly, healthy eight pound, eleven ounce son. Elijah was welcomed home to wet kisses and a big hug from Jaycee. She was completely in love with him from their first encounter. Though, she didn’t always understand how to show that love appropriately to a newborn. I had to keep Elijah in view at all times because Jaycee might lie on top of him, attempt to pick him up, or hug him too aggressively. Every time she knocked him over or accidently hurt him, I wondered again how he would grow up to feel about her. On more than one occasion, Jaycee was hospitalized leaving Elijah to stay with family members, and I thought about how it was impacting him.
In all of my planning, worrying, and analyzing, there was one thing I didn’t take into consideration. Elijah has a unique perspective that I can’t fully appreciate. His life began with Jaycee and doesn’t know a different way. Elijah’s normal routine involves tagging along to appointments or trips to school, which he enjoys. He has grown up thinking hospitals are “so cool.” He wants to take medicine like his sister so he gets a vitamin every morning. Elijah isn’t scared when we are checking Jaycee’s breathing with a stethoscope and an oxygen saturation monitor. In fact, he says, “Bubby’s turn,” and holds out his finger for the monitor. Elijah has grown up thinking sign language and a speech generating device is normal.
Like his parents, Elijah loves Jaycee unconditionally and shares a bond with her that no one else will. Although other children (and adults) notice Jaycee is different and sometimes treat her poorly, Elijah respects his big sister. He has never stared at her in judgment or called her a terrible name. He hugs her, kisses her, and even looks out for her. When she wanders off from us, he’ll often yell, “Come back sissy! Wait!”
I’m sure there will be a time in the future when he will have questions and he will verbalize differences between him and his sister. For now, I smile when Elijah takes Jaycee by the hand to play a game of ring-around-the-rosy. When I see the two of them play their made up game of throwing blankets over their heads and laughing, I feel silly about some of the concerns I had a few years ago.
And my dreams of the future now? I dream that my kids will remain life-long friends. Maybe when Elijah is older, he will be able to affirm that his life is better and he’s a more compassionate person because of Jaycee. My husband and I often say that about Jaycee AND Elijah.
