Most of you have heard about Maddie Spohr by now. I went back and forth yesterday, whether I was going to post about it, scared to feel exploitative of a really tender situation. But seeing as Declan was a 32 week preemie, I felt like I really had to. Just had to.
Declan was born on a Friday the 13th due to a placental abruption. We almost lost him. He stayed in the NICU for 6 weeks. During that time, he experienced many bouts of apnea and bradycardia – one night was so bad that I gave him mouth to mouth while alarms screamed around my head.
The first year was also hard. Bryan stayed home with Declan, but was a prisoner in his own house. Declan was especially susceptible to RSV, had to have shots to ward off RSV every month, shots that cost $1,000 a pop, shots that did get paid for by insurance – thank god – but all this fear of RSV made it impossible to live a normal life that winter. The first time Declan ever went to the grocery store was May 2003, when he was 9 months old.
He also had mild Retinopathy of Prematurity. We were lucky, he grew out of it at about 6 months, while most preemies with ROP need glasses or laser surgery. But I will never forget the tests, the poking, the prodding. Even after performing CPR with my own infant, I had to leave the Clockwork-Orange metal eye-positioner clamps to Bryan and the doctors. I sat on the other side of the room and hyperventilated.
As Declan grew, they watched. And checked. And we were lucky. He started to catch up and pass ahead his adjusted age for verbal skills. For the physical side, he stayed right on adjusted till around age 2, always lagging a bit in gross motor, never qualifying for services – but who really knows if that was prematurity or just my clumsy genes? Lucky. By age 3, you would never have known Declan had been born premature.
Now, at age 6, I barely even think about it anymore.
Heather will never be so lucky.
I can’t imagine the pain of losing a child. I know what it feels like to *almost* lose one. One that I never really knew, one that I never held, never laughed with, never read a book with, never watched the Today Show with. If I had lost Declan that day, there would have been a lot to wonder about. But Heather knows what she will be missing.
That has to be the hardest thing on earth to face.
Please consider a donation in Maddie’s honor to the March of Dimes, so other parents don’t have to go through what the Spohrs are experiencing now.