Whenever someone implies my son is a burden, I cringe. I’ve said before, the only burdens we face are the hurdles society sets in front of us.

But there is one heavy, unspoken burden parents of children with disabilities do carry with them from the beginning.

Many of us will outlive our children.

That prospect has haunted me since I first discovered my son had Down syndrome.  This tiny, beautiful boy is fighting to breathe in the NICU and I am reading that he likely won’t live past his sixties.

Of course, Down syndrome is one of the better understood chromosomal conditions. Which means many of us have no idea what the future may bring or what to brace for.

This reality is so incredibly grim that we rarely talk about it. Perhaps this is why the bond between families affected by disability is so strong. We can be with one another and we just get it. That sadness that is always lingering or seems to wash over us for no reason – we don’t have to talk about it if we’re with our “people.” We don’t try to fix each other. We know there is no retreat or massage or meditation that will make this go away.

A dear friend of mine opened up about all of this recently. She announced that she NEEDS to outlive her daughter because the alternative is unthinkable. She said that’s part of why she’s taken on an intense fitness regime – she plans on being there for her girl when she believes it will matter most. Facing this head on – that is the epitome of brave.

As painful as it might be to watch our children take their last breath, it is a burden many of us want to take on. If we’re lucky, we can establish supports, finances, and find a network to love and look over our child if we do die first. But even with all of those boxes checked, we know our death could leave them confused, alone, and vulnerable.

Need help dealing with all of the emotions that come with raising and loving a child with a disability? We have people you can talk to. This is a free, ongoing service. Email: cfihelpline@vcu.edu or or call our helpline (877) 567-1122. Someone will get back to you within 48 hours.

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