Delight Despite Delays

September 5, 2016
Boy splashing special needs prematurity, hand to hold, preemie babies 101, NICU, Life after NICU

copyright Laura Maikata

Sometimes you don’t need to fight for your child. Sometimes they can just play, just be. Sometimes, for parents preemies or special needs kids, it’s hard to know when it is one of those “sometimes.”

When my son was born at 23 weeks gestation, I knew he probably wouldn’t be typical, but I kept fighting to get him as close to normal as possible. I hoped that he’d outgrow his prematurity. And in either case, I hoped he’d thrive. He’s done very well, but we’ve had to struggle more than I expected. And sometimes the struggle is exhausting.

I remember his body, intubated and tiny, eyes closed shut because the lids were too heavy from excessive water weight. He lay nearly motionless but wouldn’t let my hand go. If I shifted my weight, his knuckles turned white to keep my pinky in his fist. He was recovering from a perforated bowel, closed heart surgery, and failed kidneys – all at once. And he wasn’t feeling so great. I told him I’d stay next to him as long as he needed. I told him I wasn’t going anywhere. I told him that if he made it, he’d get to see the world outside the NICU. And that world was SO GOOD.

The NICU doctors and nurses did a great job preparing us for that world. They told us we were part of his team, that we could give input to his care and voice our concerns. They told us we were the experts, because we were his parents. It didn’t feel like that some days, we’d rarely been able to hold him and he’d only ever known the hospital. But their words grew on us and became so important.

Over the next three years we saw a lot of specialists, and being the expert in our son became paramount to parenting him. To keep it short, it turns out my son wasn’t JUST born four months early, he was born with two rare genetic conditions. One, an unnamed renal disorder, caused him to be a “failure to thrive” child for over two years until medicine finally balanced his body chemistry. Another, Usher Syndrome, caused him to be hard of hearing.

So at four years old we have a small, skinny child who is hard of hearing, behind on speech, and medically complex. He’s had ten surgeries, countless other sedated procedures, and is better at telling a phlebotomist how to draw blood than he is at identifying colors. Some days we’re not sure he’ll ever catch up to his peers. As kindergarten looms, our hearts sink. “Normal” is elusive for this child.

At the same time, this same four year old is also energetic, funny, and affectionate. He loves racing his sisters and trying to dig to China. He enjoys cuddling on the couch with a book and throwing a ball.

We oscillate between delight at all he’s become and fear about his future. He’s over a year behind on almost all benchmarks. We’ve spent countless hours driving him to therapies (SLP, OT, PT), having home visits, talking to teachers, sitting through meetings with teachers, and seeing specialists. We have fought so hard for this child. He is so worth it, but we are exhausted.

I heard a story about a gardener. She’d written to a gardening magazine about all the things she’d done for her garden, all the hours she spent weeding and cultivating and pruning. She sent detailed pictures and descriptions about her garden and asked what more she could do to help it grow and thrive, to keep the weeds at bay. What else did she need to do to be a great gardener? Their answer was simple.

Sit. Put a bench in your garden, and sit. Stop seeing the weeds for a moment. There will always be more weeds, and you can pull them later. Look instead at the flowers. Enjoy the color, the scent, the texture. You have helped create a work of art. Enjoy it.

special needs, delays, prematurity, hand to hold, preemie babies 101, NICU family voices, preemie, NICUI spend TOO MUCH time worrying about what more I could do for him and not enough time down on the floor with him, exploring the world as he sees it.

When you start to feel overwhelmed, like your child will never catch up or the next developmental benchmark will never be reached, learn from the story of the gardener. Set down your shovel, stop tilling the ground. Instead, sit next to your child, breathe, enjoy the good that surrounds them.

I promised my son on that swollen day that if he made it out of the NICU, I’d show him just how good the world could be. I told him I’d fight for him. I’ve learned now that in those moments when I stop fighting, when I sit next to him and see HIS world – the waving flags or pretty flowers that are his obsession for the moment — it isn’t me making the world good for HIM, it’s HIM showing ME just how wonderful this world already is. And we don’t have to fight for that.