i will never forget the exact words our specialist told us after the first visit with him in which the ultrasound showed indications of a trisomy. “I’m sorry. I know this is not the news you had hoped for.”
no, of course not. our hope was that our son would be found completely normal, or with just an isolated defect at the very most. i had actually built myself up to believe that this would be the case.
after that appointment, i went home and researched all the things the specialist had found on the ultrasound. i knew before anyone told me that jonathan had trisomy 13. the next day, we received the phone call from the geneticist: the amniocentesis confirmed the diagnosis. we wanted to be assured, of course, that the amnio was absolutely accurate, that there was no margin for error. while ultrasounds can be misread, “the amnio results are 99-100% accurate.” they actually take cells from the amniotic fluid and grow them in a culture to study the individual chromosomes. in every cell they studied from jonathan, there was an extra 13. it was the worst case scenario.
what did i have to hope for? i have already mentioned in a previous blog post that a diagnosis of trisomy 13 is accompanied with years of research and statistics that all point to the same end result: a certain death.
“don’t give up hope!” and “doctors can be wrong!” we hear this a lot from well-meaning people. perhaps it appears that because of our acceptance and submission to jonathan’s eventual death shortly after birth, that we have given up hope. it’s been a complex issue to address for us. everyone knows a story of a child who turned out OK after being diagnosed with a disabling or fatal condition. additionally, it absolutely doesn’t seem fair that this should happen to a baby. what kind of God would allow it? it’s not easy to accept that this would be part of a divine plan.
i recently discussed this issue with a couple of friends, brainstorming the appropriate response while still being appreciative of everyone's encouragement. what we came up with was: while we absolutely believe that God could heal jonathan if He so desired and if it was part of His will, we still have to realize that for whatever reason or purpose God may have, trisomy 13 is one of those things defined by a common outcome. it’s the reality we must face, in order to be prepared for the months ahead.
so what, then, is our hope?
before i knew of jonathan’s condition, i had been slowly working my way through the old testament. it had been a hard read at times, trying to understand who God was and the purpose He had for a violent and rebellious people throughout ancient times. there were horrific stories of slavery, of war, of slaughter. my understanding of “who God is” was tested again and again in these stories. while i will never, ever claim to be a bible scholar…not even close…what i personally learned from these stories is that they are still relevant today. we are still a violent, rebellious people who commit the same horrific offenses. a people who desperately need forgiveness from a holy God. but i have also learned that God is much bigger than i sometimes give Him credit for, much bigger than the worst of humanity.
while i can never claim to even fathom what He is up to when He “allows” certain things to happen, i do know that God can still use our bad choices and awful circumstances, big and small, for His purposes, which are many times unbeknownst to us. He proves it over and over again throughout history. He also promises, for those who know Him and love Him, that all things work for good. (Romans 8:28.)
my circumstance is very, very minute on a scale of all the things going wrong in the world today. but i can see every day that God is involved in the very details of my life and jonathan’s life. He is not a God that suddenly becomes aware of circumstances and then reacts. He is as involved in the details of every grand-scale historical event as He is in our typical daily routines. He doesn’t make everything right in our lives all the time or promise us an easy journey, but He does give us everything we need, physically, emotionally, and spiritually, through His son Jesus. He gives us Hope when it looks like things can’t get any worse.
May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit. ~ Romans 15:13
of course, we hope and pray for a miracle for jonathan. but if God lived in the box we tend to place Him in, then the miracle of complete healing for jonathan would be the one and only way we would hope or expect God to work, or that i could accept in order to for me to have joy ever again. yet we believe our God is able to do so much more than we are expecting, through our journey, through jonathan’s life, and perhaps in years to come. it would still be a miracle. it just might not be neatly wrapped up in the same package you might expect a miracle to be wrapped in.
Now to him that is able to do exceeding abundantly above all that we ask or think, according to the power that works in us. ~ Ephesians 3:20