Strong and fragile, we will be okay
Why we chose to tell the world about the health of our baby even while it was still yet to be known if he has Down Syndrome or not.
Walking into the specialist’s office we weren’t sure what to expect. Already we were convinced that whether or not this baby has Down Syndrome (or another anomaly) everything was going to be okay.
In saying that, we also accept the fact that we’re not afforded the luxury in life of always knowing exactly how “okay” will be defined.
If we’re honest, we’d all admit that we want “okay” to mean what we want it to mean – perfectly healthy (in our case), rich, successful, popular, beautiful, the deal going through, the trip not canceled, the relationship mended… and the list goes on.
And yet we all know that that’s not always the case.
Sometimes “okay” means that a peace comes despite the storm, despite job loss, despite the heartache, despite things falling through, despite sickness or disease, despite unfaithfulness, betrayal, or broken promises. Sometimes “okay” means that we find strength and comfort, joy and blessings in the little things and in the unexpected places that serve as a much-needed oasis in our desert.
With that in mind, we headed to our follow-up appointment knowing things would be okay.
We didn’t know what kind of news the doctor would deliver, but we did know that we’d be okay with whatever he said. We had to be.
The ultra sound technician took a long time re-doing all of our scans. She meticulously looked over every bone and every organ, paying special attention to the brain, heart, and kidneys – the areas identified as problem areas just four weeks before.
She talked us through it all pointing out things of note and explaining what she was looking at, taking special care when looking at the heart. She was incredibly professional – not indicating concern or relief or any sense of emotion that would sway us one direction or another.
Once her examination was finished she took the results to the specialist, Dr. Watson, who also looked them over before coming to see us.
When Dr. Watson arrived (who had in a mere four weeks become infamous to us after being so highly spoken of among his peers) he greeted us and asked if he could do more scans.
Again he camped out around baby’s heart.
Over and over he looked and prodded and studied every valve, every ventricle, every little “inch” of our baby boy’s thumbnail-sized heart. Ryan and I looked at each other not knowing what his attention may indicate.
He soon told us that the concerns about baby’s brain and kidneys had disappeared but the marker on the heart remained. Then he went on to explain that even despite the marker still being there, the heart structure itself looked perfect and healthy and the flow and blood to and from the baby was as normal as could be.
He was very happy with how everything looked and we all breathed a huge sigh of relief.
Over the next several minutes he explained to us what it all meant and the possibility that our baby may still have Down Syndrome… or that he may be perfectly “normal”, setting our chances at 1 in 50 for DS. He also encouraged us with the fact that he’s seen these markers on babies several times when they haven’t led to such an outcome.
Next he offered us the option of an amniocentesis and left Ryan and I to discuss our next step.
Having one now would enable us to have the complete reassurance that baby is perfectly healthy… or allow us to hear a DS diagnosis ahead of time giving us some time to adjust and prepare ourselves mentally and emotionally before he arrives. But in addition to that, having an amnio now would also mean a 1-2% of miscarriage. If the membrane was to rupture at this point in the pregnancy the baby could not survive outside the womb. (I am now only 23 weeks along.)
The decision to have an amnio or not is a very personal one. Every family is different and there is no blanket answer for these sorts of decisions. As much as we’d love to be prepared in every way possible if something was indeed abnormal, for us the risk of loss – albeit low – is not worth the knowledge gained. If we were looking at something more serious (such as one of the fatal chromosomal anomalies) then our decision may have been different. But with DS being our “worst case scenario” at this point… we decided we just can’t bring ourselves to take that sliver of a risk.
We left Dr. Watson’s office that day the same as we came in – knowing that everything would be okay.
In reality, we don’t know much more about this baby than we did when we first went in. We don’t know if he will be born with an extra chromosome or not. But we do know that two of the three reasons for concern (the brain and the kidneys) have now dissipated.
We probably won’t ever know this side of heaven if that was just the natural course of life and development for the baby or if it was a miracle fueled by the grace released through hundreds and hundreds of prayers of both loved ones and strangers alike.
Some things aren’t necessary to understand in order to appreciate them… and this is one of those instances.
We thank God for every bit of good news we receive… regardless of how it came about.
Although no one has specifically asked, I’m sure some have wondered: Why would we share such personal news and struggle with the world… especially when we still don’t know anything definitively?
The answer to that is a simple one for us: We believe in the power of community, love, and prayer.
Too many people go through life suffering in silence. Too many people feel alone in their struggles. Too many people cover up problems for fear of appearing weak. Too many people tell themselves that their problems are “no big deal” when in actuality they’re dying on the inside.
Ryan and I feel that’s a tragedy.
Life is meant to be lived and shared and experienced. If we are real and transparent with one another, it gives others permission to be real with us (and one another) in return.
This has been evidenced countless times over the last few weeks as emails have poured in from friends and strangers around the world, not only sharing their support and encouragement, but also sharing their deepest struggles and heartaches with me.
These emails – your struggles – are as precious to me as my own.
Because in my own weakness I’m made so much more aware of the reality of others’ pain… and because we’re all in this together.
That, my friends, is called life. We need each other.
Vulnerability and openness within your own life invites vulnerability and openness in others. Everyone wants to be known for who they are… it’s just that sometimes people need a little encouragement to come out of themselves. There’s just nothing like making yourself vulnerable that opens the door for others to follow suit.
I’m not saying we should all air our dirty laundry for the world to see, or spend our days rambling on about problem after problem. But I am saying that to take the risk of opening your heart and baring your soul when it’s appropriate may just be the road to healing for many… often reaching far beyond your own self.
Because life is bigger than what we can see around us.
Because the world is a tiny, tiny place… and much more friendly than we often recognize.
And because choosing the perspective that the glass is half full always leads to being hopeful. (Which is a very nice way to live.)
So my family and I will continue to be open with our joys and struggles to the degree that we believe is appropriate. We are not superhuman – we are strong and fragile all at once. We need encouragement and we offer encouragement.
Life is meant to be lived together in community – and in our perspective that can include both people near and far, both known and unknown.
Life is also meant to be celebrated. Ryan and I share our journey because we want our precious son to be celebrated… whether he’s born with an extra chromosome or not. We love him and accept him and cherish him… and we want the world to do the same. But we’re also aware that sometimes a little time to process and pray can help people to accept challenging situations and free them up to celebrate along with us.
Because celebrate we will.
And celebrate we already do.
Dear friends, how are you living your life? Do you allow less-than-ideal circumstances to drive you into hiding? Or do you let them propel you toward the much-needed support of others?
Unashamedly seeking support,