Over the past years, I have learned through various conferences or seminars that one of the most important relationships you will ever have is the relationship with your sister or brother. When our parents are gone, the ones left behind are usually your siblings. This holds true for children with special health care needs and their relationships with their siblings.
We have been extremely blessed to have two beautiful boys, Zachary (Zac) and Jackson (Jac). Currently, Zac is 19 and in college studying to be a lawyer. Jac is 14 and has a diagnosis of autism and epilepsy. Zac always wanted a brother or sister, especially around the age of 5.
I will never forget one night he said to my husband and I, “You two have each other to sleep with and I have nobody." Lucky for Zac, we helped him out and gave him his wish about a year later.
Over the years, it has been interesting to see this relationship evolve. Sometimes, it has been heart-wrenching when Zac wasn't sure if he wanted to bring new friends to the house to witness his brother's epic meltdowns. Other times, he has been okay with having his friends over after he educated them about Jackson.
My boys are total opposites. Our oldest graduated at the top of his high school class with many honors and was involved in every activity imaginable. My husband and I made a promise to Zac that if at all possible, one of us would always be at his events. I am happy to say we about killed ourselves to be at every band concert, baseball game, etc. We were blessed enough to switch out to make this promise work as we know the siblings are often the ones overlooked in a family with a child with disabilities.
What I wasn't prepared for, however, was the terrible transition from high school to college for not only us, but for Jackson. We took him to see his brother's college, but it is such a hard concept of "Bubba" not being here. "Bubba” comes home for Christmas and they wrestle, they cuddle, they play light sabers (because Jac has an awesome big brother) and then the college boy goes back to school.
Then the trouble begins. "Where's Bubba? I want to talk to my Bubba! When is Bubba coming back? I want to go see Bubba's house!" It is enough to rip your heart out.
One day, during the first week of Christmas break, Jac was having a terrible time and I had to call Zac to convince his Jac on the phone that we would fix the Hot Wheels™ track when he/Bubba got home. Sure enough, our oldest assured him he would fix it and that was all it took!
We forget that our children with disabilities are much like us. They know who is important in their lives and they know who they can depend on. Jac’s go-to person is clearly his big brother.
When it was time to submit letters to various colleges for our oldest, many of the essays wanted him to write about his biggest obstacle he had to overcome or the most inspirational person in his life. Zac's essay brought me to my knees. His essay was about his brother and how Jac's zest for life was his inspiration and also, not our family's biggest obstacle, but our family's biggest BLESSING!!
For more information on siblings, go to the Family Support page.
We have all found ourselves, at one point or another, comparing our child or our situation to another. The grass is always greener and you want what you can’t have—all phrases we have heard. Sometimes we must remind ourselves that we are all doing the best we can and we need to support one another and focus on the similarities, not the differences.
With every passing year in the world of being a parent of a child with special health care needs, you have the day to day struggles, the fun holidays, and some surprises. Good and bad.