I really didn’t want to write this post. I’ve sat here, for the past 24 hours, trying to find the right words. I don’t think words can possibly convey what I’m feeling, but I will do my best.
I am a mom of two preemies. My daughter was born during an emergency c-section ten weeks early and weighed just over two pounds. My son was taken from me seven weeks too soon because his congenital heart defect was worsening in utero. He tipped the scales at three pounds, eight ounces.
Needless to say, I have spent a lot of time in hospitals. My daughter stayed in intensive care for her first five weeks of life and my son has had nine surgeries and has been hospitalized numerous times. When he was an infant, if he so much as got a cold they admitted him, partly because of his underlying health problems, but also because he was premature and very, very small. On his first birthday, he weighed just thirteen pounds.
When you have a child who is premature, small and sick you seek out other parents who are in the same boat. Especially those who can still manage to have a sense of humor about the awful situation into which they have been thrust; the kind of people who understand the lingo, and the acronyms and what it’s like to have therapists practically coming out of your rear end.
We know our children’s medical history as well as we know our own phone number…probably better. We know the ins and outs of the health insurance industry, our doctors consider us family and pharmacists become our good friends. Parents of preemies know what it’s like to feed your kid every three hours, round the clock, for their first year just so they can maybe gain a few ounces.
We watch our children fight and claw their way to milestones like little soldiers. We can commiserate and we understand each other, and every now and then we have to help pick each other up…because sometimes all the hard work and struggles of raising a preemie don’t pay off. Sometimes the soldiers just can’t fight anymore.
This is Maddie. She was 17 months old and was still fighting up until the very end, which came day before yesterday. My heart breaks for her parents. Parents who were just like me and my husband up until Maddie died.
We are not in the same boat anymore. My family is sailing along on occasionally choppy waters, while their vessel has been completely overturned.
I am giving thanks that we have been very fortunate and I will hug my kids a whole lot tighter tonight. In Maddie’s memory we will continue our fight. Rest easy, child. Struggle no more. You have fought hard enough.