Brotherly love (31 for 21)

The expansive love a new mother feels cannot be described.

Perhaps only one who has given birth can get what it’s like to have such tremendous affection for another being. Motherhood increases the capacity of one’s heart so deeply, so fully, so immediately.

Within hours of bringing my beautiful boy home from the hospital, I knew I wanted another baby.

By the time my firstborn was a talkative toddler – in perpetual motion and constant curiosity – I was pregnant with my second son.

brothers huggingI remembered a friend telling me she had had her second child as a gift for her young daughter. I could relate. I have three siblings who, aside from my own children, are the most important people in my world. I can’t imagine what my childhood would have been like or who I’d be today without my sisters’ influence.

I wanted Elijah to have a sibling. I wanted him to have a childhood playmate and later, a  confidante, and later still, someone to share life’s important moments with. I especially wanted him to have a brother or sister to go through the experience of having aging parents with – I suppose because that’s where I am in life and am I’m glad I don’t have to go it alone.

Shortly after Raphael joined our family, I felt I had betrayed his brother.

Raphael would not be quite the brother-in-arms I had envisioned. He had serious medical problems. He has physical and intellectual disabilities.

I don’t suspect he’ll be driving a car or partying on a college campus with Elijah some day. And even if he does, it’s not the brotherhood I had expected.

Nevertheless, the bond my two boys have is a thing of wonder.

smiling brothers

Sure they wrestle as brothers do, and sometimes I think the only game they know is “fight.” But they love each other so purely, it’s inspiring and heart soothing.

Eli and Rapha sharing a moment while eating ice creamRaphael follows Elijah from room to room and cries when his brother doesn’t want to play. When Raphael went down a playground slide on his own the other day, Elijah ran over with pride and excitement to tell me about the momentous development. When Raphael refuses to listen to his mama and falls to the ground in a boneless heap, Elijah will coax him along and lead him to the car.

Even though it’s not Elijah’s job to hang with his brother in a group, he just does it sometimes. When the school bell rang at the end of Raphael’s first day of kindergarten, Elijah walked from his second grade classroom to his little brother’s room to lead him to the bus. No one told my then-7-year-old to do that.

I think growing up with a sibling who has some differences compared to most people is a blessing for Elijah. Perhaps he’ll be a compassionate man and caring husband someday simply because he has grown up naturally internalizing the ideas that differences don’t matter, but being there for another does.

When Eli hears about the mistreatment of someone with a disability, or any human injustice for that matter, he takes it hard and wants to fix the situation. He gets pissed off when Raphael gets excluded.

I’m also aware that having a sibling with disabilities can create distinct concerns for a more typical child. Artism signThat’s why I enrolled Elijah in Artism, a free art therapy class for siblings of children with autism, Down syndrome or other disability. Elijah isn’t particularly into art, so I wasn’t sure whether he really wanted to spend Sunday afternoons with the art kids and miss his beloved Broncos on TV, but so far, he’s into it.

As I write this, Elijah is painting a shed with a bunch of kids who have something in common that most of his school friends just don’t get. Kids filling in the mural with paintWhile making art, the kids can talk about what it’s like to have a brother or sister who has endless therapy appointments, or who can’t talk well, or who doesn’t follow the rules of the games like others his or her age.

Or not. It’s not really therapy at all. No one leads the kids to talk about anything in particular.

But it is something that Elijah gets to do that his brother isn’t allowed to participate in, on purpose. It is just for Eli.

When his brother was younger, Eli used to cry that he wanted to go to Children’s Hospital, our virtual home away from home for Raphael. Raphael got so much attention in those early sick years, and Eli, like all siblings, especially first-born ones, wanted more for himself. When your parent is in constant triage mode from one crisis to the next, seemingly less needy kids can feel left behind no matter how much attention they demand and actually receive.

Elijah knows that we’ll never leave him in the shadows.

Eli smiling while painting“I am a pretty lucky boy,” he said to me a couple days ago for no apparent reason. “I have a mom who is there for me and who doesn’t yell at me like other kids’ parents. I get to do lots of fun stuff. I am free. And I get to have a brother with Down syndrome!”

Thanks to Eli, Raphael will get the attention he needs, too.



Artism kids mugging in front of their almost completed shed mural

Not quite 31 for 21. In honor of Down syndrome awareness month, I’d like to post to this blog every day for 31 days to increase awareness of Trisomy 21, the most common genetic condition that causes the syndrome.  #DSAM2015


About elizamom

Colorado mother of two small boys. One happens to have Down syndrome.
This entry was posted in Advocacy, Down syndrome, Family time, Motherhood, Parenting Special Needs and tagged , , , . Bookmark the permalink.

One Response to Brotherly love (31 for 21)

  1. Thanks for your story. My 3 year old son is now a big brother to Jax, who has Down syndrome and underwent heart surgery 2 months ago. It has opened our hearts and minds to a whole new world we never knew existed.

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