A Special Life: The Other Child
A boy born with a purpose.
When my firstborn was diagnosed with an unknown leukodystrophy at six months old my world was shattered. At the time, my husband and I were told she may live days or years. All I could think about was how much I loved this little girl. The thought of losing her made me sick with fear. I could not imagine living in my home without her. How do you even fathom going from having a child, and her being everything in your life to having an empty crib and silence? Brinley came home and we were challenged with raising a special needs child. She cried and struggled to live and every single day — no, every single minute was hard.
One curious tidbit of information about leukodystrophies is that most are inherited — passed from parent to child. My husband and I knew that having another child was special needs Russian Roulette. We had no idea if we carried the genes for our daughter’s disease, or if she had a spontaneous mutation. We had to be prepared for the possibility of a second disabled child.
I didn’t know how long Brinley’s life would be, and I wanted her to have a sibling. I am very close to my siblings and even though I knew her relationship would be different, I wanted her to have that opportunity. Although, this is hard to admit I also wanted another child so that if I lost Brinley, I would have another child to love. I also hoped to experience raising a child who would sit up, eat, crawl, and walk. Little did I know, Briggs would bring so much more than movement into our home. He has brought joy and loads of laughter.
“Mom, I don’t care if I die. Because if I die and Brinley dies we can finally play together in heaven.” Briggs told me this as we were driving back from his cousin’s house. From the driver’s seat I stuttered and stammered out a reply that probably made zero sense. A little boy that just wants to play with his sister. This is the life of a special needs sibling.
A special sibling has to experience a lot of intense situations. Things that most adults couldn’t handle, he has to go through on a regular basis. He has seen me trying to help Brinley breathe while calling 911 in hysterics. He has witnessed ambulances, fire trucks, and policemen in our driveway, along with EMTs surrounding his sister. He has been in the hospital when she has a breathing tube, IV in her arm, bruises cascading her arms and feet, and countless wires and tubes. He has heard her screaming in agony from broken bones. Everyday he hears her crying, sees her struggle to breathe, and throwing up. He sees her frustration with not being able to communicate. Then he witness what I do and say. Here’s a mom truth: we think we hide our stress and emotion like Clark Kent hides Superman. We don’t, they feel the emotion and stress even if we hide it under a big mom smile and an “everything’s okay dear!”
The daily life for a special needs child is a constant stress because it’s up and down, ALL DAY LONG. It’s a full day of puzzles to solve. The stress is palpable to anyone — even a young child. Briggs will sit with Brinley when she’s crying, pat her, and try to calm her down by saying things like, “it’s okay Brinley… Mom is just cooking dinner… I love you… What’s wrong Brinley?” He does this nearly every time she cries — this can mean several times a day he is taking this upon himself. No matter how many times I tell him he does not have the job of keeping her calm he still takes the responsibility.
Before writing this I asked him what was the best part, and the worst part of having Brinley as his sister. He answered right away, “the worst part is she cries all the time and I have to help her feel better and sometimes I can’t. The best part is (*big cheesy grin*) I love to snuggle and play with her!” As you can see from the pictures he does a lot of snuggling.
The sibling who isn’t sick is often overlooked. I hate it, but I can’t ignore the child who can’t verbalize what’s wrong. When Briggs was two or three years old, Brinley was having a moment of aspiration and she was struggling to breathe. I was supposed to be making Briggs his lunch, but I had to run upstairs and turn the oxygen concentrator up and then try to clear her airway. Briggs was not happy about this — no kid his age would be — so he followed me to the bottom of the stairs and began yelling, “the Briggs want peanut butter, jelly, bread!” over and over and over. Even as he’s gotten older, he will try to show me his latest “trick” as I’m working on a not-really-breathing Brinley. I wish I could say I kindly asked him to wait until later, but it’s more of a yell, “Dad’s sitting in the other room. I’ve got to help Brinley right now.” Ughh. That’s embarrassing to admit.
Since his birth, I have been terrified of the day I have to explain to him how sick his sister is. As much as I hurt for my daughter’s life, I also ache for his. He will always have a sister who is sick. His schedule will have to adapt to her needs. Brinley has terrible anxiety when we go out, so he is usually only with one parent while the other stays home with Brinley. In his seven years of life, he can probably count on one hand the number of times he has been to church with both of us. His summer days are filled with finding things in the house to do with Brinley rather than pool days, lake trips, and carnivals. His memories of hospications will outnumber vacations. He won’t look back one day and remember his big sister’s stop and go screeches of the car as she learns to drive — his memories will be filled with the echoes of sirens from another ambulance taking her away. Instead of sibling rivalry, he will have a sibling who can never speak to him.
Recognizing the struggle of the siblings is important. Everyone sees the pain of the special child, and the parents raising her, but I’m not sure we understand what a sibling goes through. I hurt for the pain he experiences as a small child with a special needs sister, but what his future holds will be even more difficult. As an adult, I understand that I will have to bury my special needs child one day. This is something he may not be able to understand before the day comes. I dread the pain my son will go through when he has to wake up day after day, and not see his sister. It’s like this big secret we’re keeping from him — she will be gone one day, but you will have to keep on living through the grief.
He came into this world with a purpose — to love and be loved. He has brought laughter and joy amidst pain and tears. He not only gave Brinley a little brother to experience life with but also a best friend. In turn, she gave him the same. He gave me more love than I could have ever hoped for.
I know Briggs’ life will be a story different from most — it will consist of challenges but be molded by empathy.
