The Love of a Special Sibling

You can’t choose your family — They are God’s gift to you, as you are to them. ~ original version of the English proverb

Linda’s Story

As the parent of two children medically classified as rare and complex due to their specific genetic happenstance, and who are wonderful individuals in their own right, I have never really cared for using the word “special” about them or any other person who happens to have a disability. I am not a fan of one being so set aside that they are considered “special” over another because of a condition or circumstance.

But that semantics conversation takes a turn when viewing my children through the lens of sister and brother — for their sibling relationship is special.

When our first born, Emily, arrived, we delighted in this gift from God after having had two miscarriages. And she was a delight…along with her differences that doctors began to point out from her first day and throughout her childhood.

As we prepared for her younger brother, Mac, to join our family, my thoughts often drifted to how I would help him understand his unique older sibling, and be the best brother one could be for a sister with disabilities. However, God bestowed an even more singular gift to our family. Emily gained a sweet brother of unconnected disability circumstance to hers, yet he was bound with her through the singularity of their complex start to life.

Both Emily and Mac hung out in the NICU before coming home. Both required multiple medical interventions in the early going, as well as over the course of their childhoods. Both participated in ongoing occupational, physical, and speech therapies, as well as social skills classes. Both wore matching DAFO foot and leg braces that helped them gain the skills necessary for walking and running. And both missed developmental milestones right and left, but they quickly and easily met the most important milestone — that of being loving siblings.

Emily adored her baby brother from the start, and for Mac, his big sister hung the moon. My concerns over how to help bridge the differences melted away with each moment they played together and grew as close as siblings could be. This includes the closeness that comes with childhood fusses and making up; sharing toys and time with parents when they’d rather not; or, going to doctor appointments or therapy sessions with their sibling when they could have gone to play in the backyard.

The interesting part is that all the advice one hears for parenting through the “special” sibling issues fit for both our children. We found that we naturally gravitated towards those now typical recommendations, such as supporting each child to understand the other’s specific and individual difficulties. For example, we had to navigate Emily being frightened by loud noises, while Mac needed trach suctioning with a loud machine.

We also did our best to give each child as much individual support and attention as possible given our doubly impacted family. We endeavored even more so to find fun and joy in each day and in all things as a family. Hopefully our children felt we accomplished these goals and have happy childhood memories.

But we also know their uncommon life impacted them in ways that siblings from more typical families miss. A significant realization of this came when Emily was nearing eight years old, and Mac was five. We had just orchestrated Mac’s first IEP meeting to set the stage of his departure from inclusive pre-school to move on to Kindergarten at Emily’s elementary school.

Because of Mac’s extraordinary and complex circumstance, his IEP meeting welcomed 35 people to the planning team, including Emily. This was the first time our large county public school system had encountered the situation of including a child like Mac who used sign language and augmentative supports for expressive communication, assistive technologies for many other parts of his daily life, and who had a trach, feeding tube, a wagon filled with accompanying medical equipment, and 24-hour nursing care.

Emily skipped and played around the classroom while we met — we felt everyone there needed to fully understand how she was an integral part of our family equation. Little did I realize how much this young daughter of mine was taking in while we processed through all the planning for a safe, inclusive, and rigorous learning environment for her brother. Clearly she was mulling it over when she asked just a short time after, “Mom, what does it mean when you talk about me and Mac having some challenges? Am I disabled like Mac is disabled?”

I’ll let Emily answer that question for herself now, and share her sibling side of the story.

The greatest gift our parents ever gave us was each other. ~ Unknown

Emily’s Turn

Siblings are the people we practice on, the people who teach us about fairness and cooperation and kindness and caring – quite often the hard way. ~ Pamela Dugdale

I can say with 110% certainty that living without James McNiel “Mac” Livingston Starnes would be extremely dull. Plus, I know for a fact my life would have never been the same. The bond between siblings is stronger than super glue. The bond between siblings who BOTH have disabilities is stronger than super glue reinforced by duct tape (if that’s even possible)! We are each other’s best friends, even when we drive each other crazy. Come what may, we have each other’s backs — no matter the gaps in time or distance.

As my mother alluded to above, I have always had an inquisitive mind, and even when I was busy and seemingly inattentive, I usually took in more than people realized. This was evident even from a young age, just as when I asked if I was disabled like Mac. It was at that point that I learned an invaluable lesson. Not all disabilities are created equal, and EVERYONE needs love no matter their diagnoses or other challenges in life. Looking back on that conversation, I think it was the start of my journey of understanding what it means to be a self-advocate and sibling advocate. That talk also sparked my interest enough that it eventually led to broader disability advocacy and studies in public health and disability issues.

Having a sibling with a disability is much the same as in any typical family — they can still test your patience, particularly when it comes to that good old sibling rivalry. It is also important to remember to love them like best friends and to respect them for who they are as a person, who also happens to have a disability. Here are some other tips that worked for me and Mac…perhaps some may be of help for you:

1. Be a friend and role model…NOT another parent.
2. Give help to your sibling when they need it, but also give proper boundaries and allow them to do for themselves.
3. When you feel a bit jealous because it seems like your sibling is getting more attention…relax and breathe! You’re still just as loved and irreplaceable in your family.
4. Sibling spats are common — but remember to make the love and happy times MORE common!

Living with a disability can have its challenges. Those challenges multiply with having a sibling who also has their own disability or medical issues. However, the rewards of the sibling relationship outweigh the issues — one gains unique perspectives on life, a strong family bond, and the ability to share these insights with other self-advocates and siblings! To those struggling to reach this level of relationship, it gets better. Just take the days one at a time, smile, and LEAD ON!

A Close from Linda

Almost all the challenges of parenting siblings when disability is in the midst of the family have fallen to the wayside for us. Both our children are now young adults and college graduates. In fact, Emily is completing her final semester of graduate school, as she also prepares to marry by year’s end and move to California. And her brother, Mac, is developing a photography and videography business, and will serve as one of her wedding photographers. He will also read I Corinthians 13 during her ceremony, the words of which apply not only to marriage, but also to the “special” bond of siblings.

Love is patient and kind; it is not jealous or conceited or proud;
Love is not rude or selfish or irritable; love does not keep a record of wrongs;
Love is not happy with wrong-doing, but is happy with the truth.
Love never gives up; and its faith, hope, and patience never fail.
. . .
Meanwhile these three remain: faith, hope, and love; and the greatest of these is love. ~ excerpt from I Cor. 13, GNT

Emily Starnes completes her Master’s in Public Health in December 2019, at the University of Georgia, along with a graduate certification in Disability Studies. Much of her research has focused on health care literacy and transition for those with ID/DD and special health care needs. As a self-advocate, Emily served as a delegate and facilitator leader with Florida’s Youth Leadership Forum, and is a graduate of Florida’s Partners in Policymaking. As well, Emily’s lived experience as an older sibling to one with complex care needs provides further authentic perspectives. Since high school, she has also enjoyed co-presenting with her Mom (and sometime her brother) at conferences across the country on a variety of disability and health care related topics.

Linda Hampton Starnes (aka “Emily and Mac’s Mom”) has spent her life actively involved in the disability community — as a special educator, parent, speaker, and advocate. After teaching, then working at the U.S. Departments of Justice and Education, she became the mother of two children with varying abilities. Due to their significant health care needs, she managed 24-hour home nursing care, worked with physicians and therapists in fifteen medical specialties, and has overseen approximately 40 hospitalizations, surgeries, or procedures under anesthesia for her children. Linda has served on many local, state, and national boards of disability and healthcare organizations and educational institutions, and presents at conferences across the country.