Mom and Dad sit in stunned silence in the family room, their hopes ravaged by the terrible news. Dad finds words: “His name will be Stanley,” after a person he knew who had shown great personal courage and strength. Mom says, “His middle name will be Richard” after a character in a series of novels she admires for similar reasons. We make the decision to treat him as fully human – not as a defective “it” – as ours, no matter how long or how short his life will be. We make the decision to claim him, to love him, and pray for him every day, just as we love our other children.
Morning sickness has always been part of the picture; with some of the kids it was worse, and others it was not as bad. However, pregnancy with Stanley is the hardest it has ever been, both physically and emotionally. Constant nausea is an ever-present companion, but not only that, Stanley’s VSD heart condition means that mom carries 50% more amniotic fluid in her uterus. Everything is more painful.
The world feels like a tunnel heading into darkness. Most parents at this stage are visiting the department store picking out clothes and making sure to bring home enough supplies of diapers, wipes, blankets, everything to prepare the perfect nursery. Instead, mom schedules a trusted photographer who can take memorial pictures at the hospital. Instead of looking for a new crib, dad comparison shops for an infant casket and purchases space in the cemetery. There is no baby shower. We’re surrounded by the hope for life tinged with the certainty of loss. People close to us check on us. “How are things going?” they ask. Friends don’t know what to say, we don’t know what to say, no one knows what else to do.
At first, we fight the temptation to pray that he will pass away peacefully inside of mom, where he is warm and safe, where he will not have to face the evils and cruelties of this life. We know it will be much harder to see him, hold him, and then inevitably lose him. But it’s hard, because we already love him. Mom feels his gentle kicking, we can see his movements through her belly. It’s impossible, but we begin to hope that we will actually get to meet him, even if the moments are fleeting. Is there any chance, albeit a slim one, that the medical diagnosis is a mistake? We pray together and separately for a miracle, for God to reveal His infinite power by reversing Stanley’s condition, that he would be born healthy. Our church and many friends also pray for God to intervene.
Mom keeps thinking of all the other moms who abort their children when they aren’t convenient or “perfect,” discarding their chance at life, while she is committed to do what is right for Stanley. Mom pleads with God to grant Stanley mercy because of our choice to accept him and love him. We aren’t ashamed to desperately “bargain” for Stanley; we want more and more for him to live.
Around the time of the ultrasound diagnosis, mom starts to notice less and less movement from inside the womb. This is consistent with what we have been told: that he will likely not make it to birth. But as we continue praying, Stanley’s activity level noticeably picks up and starts to strengthen. We both wonder what it could mean, but it is so odd and striking, that we have a sense that God is giving Stanley strength, and maybe – just maybe, more time. We, along with many others, continue to hope for the best and pray for Stanley.
Mom passes her days scared for Stanley, sad for what is likely to happen, and sheds many tears. Quite often, she cries herself to sleep, constantly praying for a miracle. Physically, she is constantly super tired, and in a lot of pain from the stretching brought on by the additional amniotic fluid caused by Stanley’s VSD heart condition. She isn’t able to be active – just walking across the house hurts. Even showering is hard.
Resolving to do something special, something homemade, for Stanley, mom decides to crochet a set of items to welcome him. She crochets a special hat, and sleep bundle for him – hurrying to get it done because all of the professionals have said we’ll lose him on his first day if he even makes it that far. At some point, we start to suspect that Stanley may make it to full term, so mom starts on a larger project, a beautiful afghan with a faded ripple pattern. We plan to have Stanley photographed wrapped in this set.
Even though we are encouraged by Stanley’s apparently increasing strength, we still don’t buy much baby stuff. Although no one makes us feel this way directly, there is a definite sense of isolation because of what everyone knows. People know the prognosis, and still no one knows how to react other than to give us space. Everyone tries to be positive, but the need to be realistic steals the joy out of so many conversations.
We are continually asked about Stanley’s condition and we have to go over the same painful words every time: that we hope and trust in God, but it doesn’t look good. We recount the details of what we had been told and how mom is feeling. So far so good, but “keep praying,” we essentially tell everyone, “especially for his heart, but dare to join us in praying for a complete healing.”
We attend another ultrasound in the 8th month. Stanley is now actively moving and having a great time inside mom, but there isn’t any change in his heart condition.
As Stanley’s due date approaches, we’re not noticing any signs of decline. In fact, he surprisingly seems to be going strong. Our obstetrician schedules the C-section for four days prior to the due date.
Our photographer gives us an update. She is a fellow Christian, is incredibly loving and supportive, and mom feels uplifted through her encouraging messages as mom’s pregnancy progresses. But as the due date approaches and the c-section is scheduled, the photographer explains that she will be out of town on that day, and refers us to another person. We confirm the new photographer knows exactly when and where to show up. We also alert the hospital to let her have immediate access to us.
When asked, mom usually says she’s “SUPER uncomfortable.” Either that or “SUPER tired.” Quite often though, mom is in excruciating pain. She experiences incredible uterine cramping, and even though the doctor doesn’t formally put her on bed rest, she is forced to stay in bed or in a comfortable chair for most of the third trimester. The battle with anxiety is constant. The kids’ home school features many more break times and household order takes a back seat. As kids do when they can, they get away with more – not too much, and we do our best to keep them on the right track. Mom prays the the time will pass quickly and that she can resume her usual activities. Especially as we move toward Stanley’s scheduled due date, completing a normal day’s routine feels all but impossible.
Dad’s works long hours in a demanding career and helps as much as possible to take over responsibilities that mom can’t do right now. Late night shopping trips at the 24-hour supermarket become regular practice. Home maintenance projects get postponed. We cut out as many non-essentials as we can. Lots of things just don’t get done. We do our best to hold everything together.
Not knowing how things might play out and having been told that Stanley’s time is short, we make a concerted effort to let people know when and where he will be born so that they can meet our special boy, perhaps for the first and last time. We tell people so they can make their plans, but don’t expect many to actually show up — it’s too difficult for many people to face. We’re both giving everything we have to make it across the finish line, but it’s starting to become increasingly obvious that whatever “normal” was, it will forever be in the rear-view mirror as we go forward.