Dream Shard Blog: The Scintillating Adventures of Our Household

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Dec '14

Down Syndrome in Our Family

One night last week while we were on vacation I listened to Carissa (age 4) say her bedtime prayer. She talks about lots of random stuff in her prayers, and includes some things that I think she must hear at church, but her prayers usually give me some idea of what’s happening in her life and head.

This night she said something like, “Please help Wes to not have Down syndrome anymore.”

When she finished I told her that while her prayer was very thoughtful and kind, Down syndrome isn’t like being sick, and Wes would have Down syndrome for as long as he lived.

She asked, “Even when he’s 20?”

I explained again and thought about where this prayer may have come from. Occasionally when Wes is having a hard time with something, like with behavior or understanding, Carissa will ask about it and sometimes we tell her that Wes has a hard time with this or that because he has Down syndrome. We want her to know he has Down syndrome. She seems to understand it in its most basic form, which is that Wes does things sometimes that seem different or wrong because of Down syndrome. I think she maybe was thinking that this would be something he’d outgrow, like age-related behaviors, the way we tell her that her little sister won’t be a baby forever and do those baby-type things that make her mad.

We haven’t talked much in our family about death and what happens after that, but I tried to tell her that after Wes dies and is resurrected (which I’m pretty sure she doesn’t have any clue about, but I threw it out there anyway) his body would be perfect and then he wouldn’t have Down syndrome anymore.

I know she didn’t get it. I told her we’ll have a Family Home Evening lesson about it sometime.

The next night, John’s mom was babysitting and heard Carissa pray at bedtime. She told us later that she got concerned when she heard Carissa say, “Please don’t let Wes die.”

Clearly we have more to teach and more to learn together about Wesley and about Down syndrome in our family.

The thing is, I believe Down syndrome is temporary and a part of the mortal testing-ground only. It lasts as long as his body does, and then when his spirit and body are reunited in resurrection he’ll be “restored to [his] proper and perfect frame.” (Alma 40:23)


Wes is WES–more than his body, and more than the limitations placed on his body and mind that come from one pesky, extra chromosome. I wonder sometimes and try to imagine what it will be like to live with him in the eternities, when he is freed from these limitations and gets to understand things fully, express himself fully, and experience the fullness of joy that comes from having a family of his own.


Talk about perspective. If only I could remember all this when Wes is flopped on the ground in a store and refuses to get up and I can’t lift him. Or when he runs away in a public place and I’m yelling for him to stop and chasing him at top speed while everyone watches. Or when I’m talking yet again to his teacher/speech therapist/behavior therapist/resource teacher/school psychologist/principal/etc about ways to help him do better at school. Or when we tell him something for the umpteenth time and he still doesn’t do it or get it. Talk about frustrating.

The honest truth is that I often feel weary. It is a tiring and heavy and difficult job in a way that is impossible to explain or justify in words. Should I even admit that helping my son makes me weary? Can I do that and still be a good mom? Should I do that when I know other parents deal with so much more?

Some days it is a struggle to find balance between 1) handling the challenges that are daily and ongoing and in some cases getting harder, and 2) recognizing and collecting and savoring and then remembering the very precious elements that make up this very precious person who is (I am so lucky) my son.




I have heard several theories from others about why Wes and others like him may have Down syndrome, or a myriad of other types of disabilities or challenges. The only one that I really believe in is this one: He gives me opportunity to learn. To learn patience, to learn love, to learn compassion, to learn acceptance, to learn joy, to learn sorrow, to learn faith. I have so much to learn and I hope I have so many more days with Wes to help me continue to do so. I have much to learn. Today I work on perspective.


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