Today’s submission comes from Melissa Harris. At just 24 weeks into her pregnancy, her son Sam was born. He entered this world way too small (just 1 pound 12 ounces) and way to early – but don’t tell him that! He has been a force to be reckoned with from day one. Now, Sam is a healthy and thriving toddler with very little to show for his micro-preemie status. As for her, Sam turned her world upside down. She went from being a career focused individual to a work-from-home mom. Her kids are her pride and joy – but don’t get her wrong – it is not all craft projects and kid perfection at her house. Far from it. Her blog is a place where she tell Sam’s story, how he impacts his big sister, and generally explore the perils of parenting. You can find her on Twitter, Pinterest, and Facebooksharing her stories.
The other shoe finally dropped.
Ever since we brought our 24-weeker home from his 95 day stay in the NICU, I felt like a giant shoe was hanging over my head, waiting for the right moment to come crashing down. I agonized over everything, sure that each little stumble or missed milestone was an indicator of something more sinister, lurking in the background.
At first, I fixated on his breathing. We had, after all, spent the last three plus months in a hospital with a monitor telling us how much oxygen he was getting and how well his heart was beating. The day before we were discharged, Sam’s heart rate and oxygen dropped so low he had to be bagged. The doctor’s assured me this was not a set back, but related to a feeding. I was pleased we were still going home, but on the inside I was screaming “But he eats at home too!”.
After a few months without Sam coding at home, I began to relax about his breathing and found something new to obsess over: his eating. We had gone from knowing exactly how much Sam was getting since he was being fed through a feeding tube or with a bottle to exclusively breastfeeding. Even though I could hear him swallowing, and he was gaining weight, I was sure that he was not getting enough nutrition. This fear lasted a few months until the doctor showed me that Sam had finally made the growth chart for his actual age – not just for his corrected age.
Around Sam’s first birthday, I found my newest obsession: Autism. I had heard all the statistics that preemies were more than five times more likely to get Autism than non-preemies. I started to see signs of Autism in everything Sam did. His smile wasn’t smiley enough. He didn’t make eye contact perfectly. He didn’t say “mama” every time he wanted me or saw me.
Of course, each time I started to convince myself of this diagnosis, someone with a lot more training and degrees would take one look at Sam and tell me to settle down. I would take their advice, until the fear would creep back in.
Life went on like this for almost a year, when one of my best friends, tired of my fear and obsession about the “other shoe” took matters into her own hands, and gave me my very own “other shoe” – to drop when I needed to.
Something about this gift just made me smile, and finally allowed me to relax. I was now in control of when that shoe would drop. I took a deep breath and decided to let go of all my fears and just enjoy my amazing little man.
That calm lasted a whole two months. Yes, they were two glorious and worry free months, but they were still only two months.
Everything changed after my husband and I took a six-day, much needed, kid free vacation. Something about the time away allowed me to see some things with Sam I hadn’t been able to see before. It was suddenly clear to me that Sam’s language development had pretty much stopped and, in some ways, gone backwards. He was no longer responsive to his own name. He had lost words he had previously mastered. Sam only spoke in mimicry, nothing spontaneous or reciprocal.
I consulted with our Occupational Therapist, and as opposed to calming my fears, she validated them. She too had concerns with Sam’s development.
Things started to move quickly after this. In no time, we had failed a speech evaluation and Sam was not only in occupational therapy but now in speech therapy. In just three short sessions, people started talking to me about the possibility that Sam was either on the Autism Spectrum or Autistic. We were sent to a developmental pediatrician and walked away with an official diagnosis of Autism Spectrum and severe developmental delays.
The other shoe finally dropped. And dropped hard.
All of my fears and anxieties are now reality. Sam is no longer just the Anti-Preemie. He is now the Anti-Preemie on the Autism Spectrum.
My world has been turned on its heels once more. I am no longer the preemie mom that has escaped hours of appointments and specialists. I am now the preemie mom who has up to twenty-two hours of therapy a week with her son. My beautiful little boy, who has faced so much in his short life, now has new and unknown challenges ahead.
I want to stamp my feet and scream and cry. I want to shake my fist at the universe and say ENOUGH. Of course, this temper tantrum will do nothing to change the situation. Instead, I have to put my faith in my boy. I have to will him to improve. I have to give him the support he needs to be the remarkable little man I know he will be. And along the way, I will stomp my feet and cry just a little. And when that fails, I will snuggle Sam close and let the world melt away.￼