Hand to Hold's Official Blog: Written by Parents for Parents

Oh, The Things People Say

Big Brother Bryce and Baby Brother GageJust when I think I’ve heard it all, when I convince myself nothing and no one can deflate me – some unwitting stranger does.  And always at the moment I least expect it.

Maybe I’m having a particularly ambitious day and I’ve ventured to the grocery store with my 3-year-old who doesn’t walk or talk and my 2-month-old newborn.  Things are going swimmingly, i.e. nothing has been broken (my will included) and no one is screaming or crying.  I head to the check out feeling accomplished and extra proud of my two, sweet boys.  Then the cashier, taken with Bryce, feels the need to tell me what a good, quiet boy he is.

She couldn’t possibly know that I’d give me right leg to hear him say ‘mommy’.

Or maybe, okay actually, I took them both to my postpartum follow up appointment.  And even though I had the wrong stroller, forcing me to push the 10-pounder while carrying the 25-pounder, it was a success.  Crying was minimal, newborn manageable and Bryce sat independently in an adult chair for the whole visit, only nose diving off once in the waiting room while I was tending to momentarily screaming baby Gage.

But then as I plop Bryce down in the chair across from the nice appointments lady she says hi to him, as people often do.  Only when he doesn’t say anything back – because he can’t talk – she actually has the nerve to ask/demand he say hi back to her.

Sometimes I just smile and nod, keeping my feelings to myself.  Sometimes, like at the doctor’s office, I use the shortest, simplest explanation possible.  Most of the time people get the clue and give in to a moment of uncomfortable silence before I can be on my way.  And while I suspect that their encounter with us is short lived in their memory it can often take an unreasonable toll on me.

My natural instinct is to protect my young and while in today’s world the likelihood is that won’t mean fending off a lion attack it might now mean fending off the rude assumptions of strangers.  I can’t help but wonder how I’ll cope with this as Bryce gets older and both needs and wants to interact more with people.  While I still have high hopes that he’ll eventually talk, he’ll likely always need some special accommodations.

It’ll be my job to help him understand people’s best intentions, to cope with hurtful words and to navigate the slippery social slope of being a special needs child.

Katrina Moline About Katrina Moline

Katrina A. Moline (TX) is a special needs mom to her micropreemie, Bryce. He was born at 24 weeks at home, where she and her husband gave him CPR until medical responders arrived. He spent 150 days in the NICU at Dell Children's in Austin, TX. Bryce has hydrocephalus with a VP shunt, is legally blind with glasses, has mild cerebral palsy and severe, global developmental delays. In July of 2012 she gave birth to her second child only one day shy of 37 weeks and with no complications. She posts regularly on her personal blog about life with a micropreemie, her struggles, accomplishments and family.

Comments

  1. LUCIA MENDOZA says:

    I wish I could give you a hug and reasure you of what an amazing mother you are. We have an overwhelming amount of insensitive people that need to be educated. Your post made me teary eyed. My baby was born at 30 weeks, she is doing great but I’ve had it with the un-needed “advise” i get from people who dont understand what it is like to have a preemie. God bless you and your beautiful children. Keep up the amazing job you are doing in protecting your young 🙂

  2. Melanie Hygema says:

    What a wonderful story to remind us all to try to live with grace and courtesy because we may not know what’s really going on with others. My first thought when I saw his pic was that he was one of the cutest sweetest looking boys I had ever seen and that his glasses only make him look more charming. I do indeed hope that you are able to verbally the word “Mommy” one day but know that he’ll say that word to you in many other ways. Born at 24 wks at home, he is a miracle! – Another preemie Mom

  3. Candace macaluso says:

    Wow! What an amazing story. My prayers are with you and your beautiful boys. Yes, people are often ignorant, but their comments only make us stronger. I am a mother of a 29 weeker who is 6months old (4months adjusted). Stay strong.

  4. My son was also born at 24 weeks and later suffered extensive brain damage due to 15 minutes of cardiac arrest. He is also blind thanks to Cortical Visual Impairment and I get “Oh he’s so tired!” ALL the time. I just smile and nod rather than saying “Nope, just woke up from his nap. He’s just blind.” I don’t think most strangers deserve a long-winded explanation of my son’s medical issues. I would have turned into a crazy Mama Bear had someone insisted that my (also) non-verbal son respond. Surely working in an OB/GYN office she would know that things don’t work out perfectly 100% of the time. Regardless, she’s beneath you. And him. (Both your boys are super cuties pies, by the way)

  5. My daughter is mostly non verbal, she does have some sign (ASL) and last night trick or treating people were insisting on her saying trick or treat! I constantly had to explain that she is non verbal and then of coarse most people feel bad afterwards, but it does get annoying! At the same time I just have to remember that they have no idea! My daughter looks very “typical” so its understandable, just gets old quickly though!

Speak Your Mind

*