Parents of baby with terminal diagnosis: All Lives have "quality" because they come from God


October is Down Syndrome Awareness Month.  At Texas Right to Life, individuals with Down syndrome have a special place in our hearts.  We work tirelessly to ensure that all Lives – regardless of the conditions or prognoses that accompany them – are respected.  We fight for them every day.  So we were touched when we read one heroic couple’s story of unconditional love for their precious daughter, born with Down syndrome and a tumor doctors believe may claim her life much too soon.

Erika and Stephen Jones’ daughter, Abigail, was born just two months ago, on August 6, 2015.  Prior to her birth, doctors found indications that Abigail had Down syndrome, and then discovered that she has a brain tumor.  The tumor appears similar to other aggressive, deadly tumors, but Abigail has defied her prognosis and doctors remain unsure whether or not the tumor will ultimately claim her life.  The journey for the Jones family has been emotionally taxing, but the family’s strong faith in God is palpable when reading their family blog.  That’s where we found the following remarkable account from Erika.

[…]Abigail has no nursery, no cute, themed room especially designed for her. In fact, I have no idea where she’ll sleep when she has outgrown the bassinet. We haven’t planned that far ahead.  In an effort to guard my heart, I’ve made every attempt to prepare for Abigail’s impending death.

But what if she lives?

An idea I haven’t even let cross into my head until recently.  I didn’t plan, didn’t dream, didn’t hope past tomorrow.  Then a couple weeks ago, as Abigail is thriving and growing, a thought popped into my head – but what if she lives? And after this week, and all the new information, new hope, after her seemingly somewhat improved MRI.  What if she lives?  We are prepared for her death but are we prepared for her life?

Erika admits in another post that, “There are many times during the day when I feel like I can’t live thru it.  The sorrow is too dense, too suffocating, too paralyzing,” she says.  “But something pushes me along.  Something forces me to put one foot in front of another.  Something forces me to believe that something good will come out of this pain.  Something forces me to believe there is some unknown reason why I have to sacrifice my daughter.  And that reason is good.”

Abigail carries the trademark quality of children with Down syndrome: the element of surprise.  So often, the negatives that accompany a Down syndrome diagnosis are emphasized – and these traits can be taxing.  But their ability to surprise is unparalleled by any “typical” human being.  Loved ones and strangers alike are often caught off-guard by the affection and spunk of individuals with Down syndrome.  In a world that sees Down syndrome as a severe disability, we often overlook the almost super-human abilities of individuals with Down syndrome to see the good in the world.  Their sense of humor and fascination with things the rest of us take for granted facilitate a pause in our routine to appreciate the gift that is Life.

And precisely because Life is a gift, Erika and Stephen refuse to live by the rhetoric of “quality of Life” – the dangerous and discriminatory three words that have been a death sentence to many children like Abigail, and a sentence to hopelessness for those who love them.  Erika recounts grappling with her daughter’s prognosis and the strength she gleans from knowing that all Life has quality because all Life comes from God:

Her brain has had so much trauma.  She may have significant special needs. Stephen and I have talked about what her “quality of life” might look like and would it be worth it to put her through all of it to be severely disabled.  But who are we to say what “quality of life” someone has?  God gives us life, it’s all high quality!  So we’ll take it one day at a time.  She hasn’t given up and we will not give up on her.

Read more about Erika and Stephen’s remarkable journey parenting Abigail at their blog, Team Jones 4.


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