Disabled

I missed our ward’s sacrament meeting today, as I do approximately every third week because that’s how often our turn comes up to spend the weekend with my husband’s severely disabled sister, who was born with Down Syndrome. She is not one of those high-functioning Down’s kids who can get on a bus and have a little job and participate at least somewhat in real life. She understands a little, talks even less, and basically eats, sleeps, and enjoys car rides and going to the swings. Her mother, sole caregiver, died a year ago February, and my husband’s magnificent sister-in-law stepped in, quitting her job and taking the weekday shift to care for this girl in the mother’s home every single week. The rest of us trade off on weekends. This was to be our temporary solution until a suitable group home could be found, but with funding for such things pretty much dried up in today’s economy, we’re realizing that may never happen. So we do the best we can and carry on.

Because I teach Gospel Doctrine, when it’s our weekend, I take the early morning shift and then my husband rushes over right after sacrament meeting so I can dash out and teach Sunday School. Then I generally attend a later ward’s sacrament meeting long enough to partake of the ordinance.

And that’s how it went today. Except today I got a little verbose in Sunday School and we didn’t get out in time for me to get to the 11:00 ward’s sacrament meeting, so I went back over at 1:00, to a ward I hadn’t attended before. It’s one of those wards in which the youth program is small, and there was only one Aaronic Priesthood kid helping; the rest were elders and high priests. I realized from watching him that he too was suffering from some sort of disability. But not until they said the prayer on the water did I get the severity of it. An older man (I’m assuming it was his dad) knelt beside him and whispered the words in his ear, and he repeated them in that kind of blunt voice that is characteristic of kids with Down’s or other similar problems. I wouldn’t have understood his words, but as he said them I knew that Heavenly Father did.

It was a sweet experience. I thought, “This is a young man who probably didn’t even need to be baptized, much less ordained, but someone recognized the worth of what he could give, limited though it might be, and gave him the chance to give it.” All our lives were blessed by that decision, by what that boy brought to the table with him in a pure and undefiled spirit.

THAT thought took me back about 15 years to the one year I went to girls’ camp as a leader. We had a disabled girl in our group who suffered with both physical and mental challenges, but her mom was coming to camp and they decided she could come too. It was so precious to have her there. No one could be catty or mad at each other; the usual squabbles disappeared in the innocence of her concerned, “Don’t be sad. I love you.” I was especially moved when one of the girls, seeing that we might not be able to take this girl on our “flashlight hike” devotional, hoisted her onto her back and carried her the whole way. Our entire camp was blessed that year because of the girl who might have been seen as a “bother.”

And that brings me full circle to my husband’s sister. Is she a “bother,” or is she the catalyst that has allowed her brothers and sisters to continue to work together, to sacrifice together, to unite in a common goal? She is nearly 40 years old–a long life for one with her condition. Could her lingering here in mortality actually be a sacrifice she was willing to make for us, to help us learn things and gain experiences we could not have gotten any other way? I don’t know how that works, exactly, but I DO know this: Her life counts.

And our responses to her life count. The willingness of her siblings to defer their own inheritance (they will not sell her mother’s house until their sister no longer needs it) and a significant portion of their own lives to see her safely through–it may end up counting more than they know. It’s about as close to doing it “unto the least of these” as it gets, and the Lord is pretty clear on how He feels about that.

I look forward to meeting my little sister-in-law someday on the other side of the veil. I expect her spirit is quite magnificent. I hope I’ll be worthy to look her in the eye, unashamed of how I treated her here, and thank her for what she brought to our family. Her burden was our blessing, I’ll tell her. A sweet young priest reminded me of that today. I hope I’ll remember it always.

18 Responses to “Disabled”
  1. Thora says:

    Thanks for this post. I don’t have anything to add but Amen.

  2. Kristy says:

    “Her life counts.” LOVE that. Loved all of it, actually.

  3. grannybabs says:

    I work with disabled children. I am learning that not everyone believes that lives count. The gospel seems to give us that perspective. As society learns more and more how to prevent those with some disabilities from even being able to be born, I am wondering who will teach us that lesson.

    Yours is indeed a cautionary tale.


  4. In our ward, we have three children in Primary with Down’s Syndrome and two with severe autism. I have the privilege of serving as the Primary pianist and interacting with these children on a weekly basis. I can’t explain what I feel when I am around them better than you already have: their spirits are magnificent. I am very proud of the other children as I watch them help their “disabled” friends participate in Primary activities. They are learning at tender ages that we all have talents and gifts to contribute.

  5. Kristy2 says:

    Thank you! I love the way your posts make me feel and think! I really appreciate your perspective!!!

  6. janet rife says:

    Thank you for a beautiful post.

  7. ABH says:

    A thoughtful and tender perspective. Thank you.

  8. BYU Women.s Services says:

    It’s so good to remember that the things that we contribute to the world that aren’t measurable are often the most valuable, especially when there is so much focus on acheivement in tangible forms.
    The people I have known with disabilities have taught me so many deep, important lessons about living, through the simplest things. It’s so essential to be reminded of the most basic things that make life worthwhile.

  9. bek says:

    I am the mamma of a low functions daughter with Down Syndrome. My greatest fear is that her siblings will not be willing to take on the the burden/blessing of her care when we are gone (and these days, you can expect your child with DS to outlive you…). I love that you all take turns and keep her in the home she knows and loves.

    I know when we found about about her third chromosome, I worried that she would live a partial life b/c she would not be doing the things that my other “typical” kids would do. I quickly realized that she will have the same kind of life and get the same things that I want all my kids to have, she will have friends and relationships, she will learn to contribute (how ever small) to society and have joy in her family and daily life–just in a more simple way than my other kids. That is not half a life, it is a full life with different decorations and goals.

    Thank you for this. Thank you for your love of this sister. Thank you for making you mother in law (who I am sure is watching closely) feel peace that her little girl is being loved and cared for. THat is what keeps me up at night. What great family.

  10. Carlimac says:

    S0 tender and beautiful. Thank you for reminding me what’s most important in this world.

  11. aubrey says:

    This was beautiful and brought tears to my eyes. What a wonderful reminder of what being Christ-like really means and looks like. Thank you.

  12. Lisa says:

    What a great reminder of the sacredness of family ties. I agree that it is important for us to remind each other that being “productive” and “successful” are not easily-definable, measurable values and what is most important are our relationships with each other.


  13. Awesome post Emily, thanks!!!

  14. reenie703 says:

    What a lovely post. Thank you for sharing.

  15. Kerri says:

    This brought tears to my eyes. Loved, loved this post, Emily. Thank you.

  16. artigas says:

    Thank you. I needed to “hear” that.


  17. This was fantastic. I can’t say how much I admire the families who love and nurture ALL their children, despite the challenges that individuals can present. I’ve noticed they’re blessed with great gifts to accomplish what’s been asked of them, as we all are.

  18. cbouwhuis says:

    Emily…as always, you touch my heart with your simply eloquent way. Thank you!

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