You may have read one of my previous posts, which pertains to my older sister but also to sisterhood in general. With all three of my sisters in the same state this past year, the gift of having sisters has been on my mind much these days. Just like marriage or having children, you can see the beauty of a God-given thing like family when all involved are striving to walk with Jesus. Oh, what a difference does that make! Sin easy entangles, but when sin is rejected consistently, relationships on this Earth can be so wonderful. Such has been the case in the relationships I have with my sisters.
Which brings me to my second youngest sister — my sister who will never read this, who will never understand exactly what the words on this page mean, because she was born with an extremely rare genetic disorder, Trisomy 14.
Many people often ask me, “So what does a disorder like Trisomy 14 actually look like?”
If I could sum it up briefly, I would say that cognitively she ranges anywhere from a 2 year old to a first grader. She is extremely sensitive to light and sound. Physically, most babies born with Trisomy 14 have numerous cardiac problems but she was thankfully spared from this, although whenever she has let me listen to her heart rhythm with my stethoscope I have always noticed that her heart rate was a little too high (borderline tachycardic). Stature wise, she’s pretty short and one half of her body is longer/bigger than the other side. The difference in leg length (which was about 3 inches) caused a major problem until she had surgery on the knee of her longer side to stop the growth on that side. If you have the time or inclination, you can read a little bit more about my sister’s genetic disorder here.
My sister is incredibly unique — and a lot of people, even people who have known her for many years, are often baffled by her. On the outside she appears to be capable of acting somewhat mature: She may ask you how you’re feeling, or why you look tired. She may notice that you got new shoes, or that you got a haircut. She might tell you that her bus broke down on the way home from her adult day program. She’ll notice if you sound like you’re sick. She can keep up a semi-coherent conversation with you. But then she may suddenly turn into a demanding two year old when she sees that you’re touching her ipod or if she thinks you’re being mean to her (which is something that she frequently misinterprets). She might very well scream at you, and if you’re thinking she’s much more mature than that, it can be quite shocking. Lastly, if you interfere with her schedule, watch out! She is a lover of routine, and thrives in knowing exactly what to expect. Change is hard for her.
My relationship with my sister is pretty one-sided much of the time. And yet I love her so much. I give the Lord credit for the deep love I have for this sister of mine. She is who she is– wonderful, difficult, unpredictable, gregarious, loving, easily upset… and I accept her as such. I don’t let her get her way all the time if I can help it. She and I have always been close, since we were really little. She was easier-going back then and we always had a great time playing together (which translates to me constantly picking her up and swinging her around!)
That being said, I’m not her primary caretaker. My parents are. I am not the one to help her shower, or to make her meals, or to tell her for the millionth time to stop hugging strangers. As beautiful and as unique as she is, I also see the constant need for correction and instruction wearing my parents down. They’ve been at it for 28 years with her. It’s a battle knowing which things to just completely avoid (such as taking her to a really busy or loud event that might overstimulate her). And… if you can imagine parenting your two year old– year after year, with little improvement or growth, you can just imagine the weariness my parents experience. And yet I see them continue to pursue what is best for her, even though they are often exhausted. My parents’ perseverance impresses me. Their task is not easy, and it is not short. But they press on.
There are incredibly hard days which turn into hard weeks and even months. Weariness aside, my mom has often told me that my little sister has been very, very good for our family. She’s absolutely right. My sister is an extraordinary, most wonderful gem. Her unique situation has caused all of us family members to grow in unexpected ways. We are often pushed to our limits by her. We are brought more quickly to joy and laughter by her. And lastly, we are hugged and loved more by her than anyone else! She will make us want to cry in frustration and simultaneously shake our heads in amusement, and we love her for it.
Lastly, if you have a disabled child, you probably understand and face many of the same challenges that my family faces. You know what it’s like to not be able to always go to church or to take a family vacation. You get it when I say that one little change in your child’s routine wrecks the entire day. But it is for those of you who have never known what’s it’s like to live with or parent a disabled child that I write this blog post. To shed some light and to facilitate understanding. We are occasionally met with disapproving glances from others who know nothing of the situation, and it’s hard given the daily grind of parenting a child who will never fly from the nest. Please, I beg of you, give grace to those families you know with disabled children– to the mother who’s disabled son just ran up to you in the grocery store and invaded your personal space, or to the girl who looks like she’s twenty-something but is throwing a temper tantrum at Disneyland for no apparent reason. It is more challenging and wearying than what often meets the eye.