Category Archives: Special Needs Children

There’s a new smallest baby in the world.

And my heart goes out to her family. She was born in Germany weighing in at a scant 8 ounces. There are some who will ask me how I feel as Kenna is bumped again. She started as fourth smallest surviving and is now…sixth? Those who know me will laugh and shake their heads. I’m not competitive in the least. I didn’t care about Kenna’s ranking, ever. I just wanted her to live.

This new baby was brought to my attention by another preemie mom. Did I see it? What did I think? I knew what she meant.

My thoughts, because when I can’t stop thinking about something, it’s usually I sign I have to write it out in order to get on with my day. I’ve learned to stop fighting it and simply give in to the purge.

First, I’m so happy for that family. There are few things that cause more heartbreak than losing a child. I should know. I have one buried in Burlington, Vermont who was stillborn at 27 weeks. Ironically, she was bigger than Kenna. Oh, but that was 23 years ago. Sam and I have lost two other babies to miscarriage, one a boy, the other a mystery. When Kenna was in the hospital, all I wanted was for her to live. I was convinced we could give her a quality life no matter what. Mostly, I think we are, but there are always new challenges.

Here’s what I mostly think about for this family, how they have no idea what lies ahead. We didn’t. We thought getting out of the hospital was it, our golden ticket. Life would be so much easier once we could be with Kenna all day every day. It’s not. Not even close. Since she made it to the magical place called home, we’ve discovered the hospital was actually the easy part. There we had a team of doctors and trained professionals to help us every step of the way in ensuring our sweet girl’s needs were met.

Once we came home, that was mostly on me. I never knew I was eligible for nursing care at home. It was never offered. No one mentioned it. So I wore myself out taking care of her. I became Doctor Mom, nurse Nicki, and all her therapists. Six months a year for the first few years of her life were spent in isolation at the house, keeping germs at bay. Still we were in the hospital more than I care to remember. To this day, Kenna prefers to stack her illnesses. Why get one when she can have two or three…even four at a time?

It’s exhausting. Not taking care of her. That’s the part I love the most. Being her mother is such an honor and privilege. My heart swells at her accomplishments. Of course, our accomplishments look much different than the usually milestones. Breathing, eating, speaking, walking…nothing is taken for granted. We weren’t sure she’d ever be able to do all those things. This is also why my heart aches when others don’t understand how far she has come. They don’t see her like we do.

The exhaustion comes from the fight. Everything is a fight. Getting her therapy services, getting her the right medical services, insurance coverage, schooling, and the like. Every. Little. Thing. A fight. I get tired. Part of it is lack of sleep, the rest is purely mental. You know how much energy it takes to raise kids who are considered normal. Multiply it by sixty-seven when you have a special needs child. I’m not asking for pity. I chose this. Even knowing then what I know now, I’d choose it still.

Know what I would like? Understanding. Compassion.

I’d like to be able to take Kenna out in public without the constant threat of judgey eyes or people muttering under their breath. Like this past weekend, the couple staring at us while we tried to teach Kenna how to play putt putt at Mount Atlanticus. I saw you. I heard your whispers. You saw a cute little blonde girl who was rushing about, not listening well, who actually tossed her putter over her shoulder and nearly hit me. I didn’t say anything then. I didn’t want to ruin our outing. You thought she was spoiled and disobedient. She is in some ways. All kids are. What you didn’t understand…Kenna was wildly overstimulated. New place. Tons of noise. Loads of people. She was a bit spastic. I’ll take that any day over the shutting down she did at breakfast.

Oh, yeah. I saw you, too, the group of older women at the hotel restaurant. I know what you think you were witnessing. The little girl who had to sit in my lap to eat wasn’t being difficult. I wasn’t simply letting her run me instead of sitting in her own chair, where she started. We watched her morph from eating and doing well, to being overwhelmed from the noise of the buffet. She had said, “Tired.” Kenna always says that when the stress starts getting to her. Then she put her head down. I could see tears forming. I didn’t know whether she was going to freak out in rage, or what. So I pulled her onto my lap and covered her ears. “Better,” Kenna whispered as she relaxed into my arms relieved.

Kenna’s teacher tells me she’s incredibly bright. She looks completely normal. Unfortunately, the sensory issues have knocked all of us for a loop. We never saw it coming. Sure, she had the preemie freak outs from loud noises, the startle reflex. Now, however, it’s nearly debilitating. I deal with stares every day as I carry her into school. She’s too incapacitated from the noise and kids rushing around to walk. Over the weekend, we suffered through an hour of tears because we put her in sneakers instead of her sandals, which were too wet from the beach to wear. Finally, we gave in and let her wear them just so we could leave the hotel room.

You have no idea how hard I work, plot, and plan to keep our life mostly normal. She freaks out at all doctor offices. (The PTSD is strong in this one. 183 days in the NICU will do that to a child.) It doesn’t matter if it’s hers or mine. No, I don’t make a habit of bringing her to the doctor, but it was the week before school started, I was sick, Sam was working, Rachel has two kids now, our baby sitter couldn’t be with her, and there was no one to watch her. The phone was charged for her entertainment. I carried lollipops and stickers in my purse. (All of her doctors have one or the other.) She was fine in the waiting room. She slowly began to panic when we were called back. By the time I was having my blood pressure taken, which was normal despite it all, she was in full blown panic. Tears and screams. I held her and tried to comfort her. Then my doctor listened to my heart. It was over. Fastest appointment ever. She couldn’t stop wailing. You’d have thought there was a needle involved. (We’re going back for her well check on Wednesday. Can’t wait.)

So I rushed to exit the building. As we left, a woman stared me down. Kenna was screaming, “Sticker!” I know what the stranger thought. She didn’t exactly try to hide it. Must be Kenna thinks she needs to get something everywhere she goes. I could see her shaking her head. I ignored it even as Kenna started trying to throw herself back out of my arms. Full blown tantrum. She’s getting too big for me to handle when she does this.

Our child thrives on routine. Doing anything outside of the norm rocks her little world. Kenna hadn’t been to my doctor before, by design. She didn’t know they don’t have stickers. She didn’t care that I had stickers for her. All of her doctors have stickers and my stickers wouldn’t do. Sometimes there’s no reasoning with special needs kids. Sometimes you have to let them cry it out, settle down, and simply love them through it. I don’t mind. I wouldn’t have it any other way. I love being there for her.

My problem is I’m at a breaking point with the uninformed public. The insensitive, selfish, inconsiderate individuals who would rather stand in judgement than offer assistance. Maybe that’s why I loved this story so much. This guy, this stranger, walked a crying infant so the pregnant mom traveling alone could rest. We need to be more like this guy. We need more people like this guy. Be this guy.

We all have bad days. It’s not an excuse to make other people have bad days. Stop with the assholery. Honestly, anyone can be a jerk. It’s so easy. It no longer surprises me. You want to shock me. Be nice. Be kind. Care about others, everyone, strangers. The world needs more love. I’m just as guilty. See, I forget how big my life is. I forget the breadth of experiences I have that made me who I am. In the past, I probably would’ve made similar mistakes in judgement, but now I’m part of a secret society of parents with special needs children. It’s so secret we don’t even meet. Our hazing is one trial by fire after another.

Ah, but I digress.

To the family in Germany who’s reveling in their little miracle, I send you so much love. Hang onto it. There will be dark times. Have hope and truly believe you can overcome anything because you can. Face these challenges with your face upturned to the sun and arms wide open to embrace the impossible. You’ve got this. We’ve all got this.