Monday, June 17, 2013

4 Things My Mommy Imagination Ran Wild With

The boy had a sleepover at grandma’s last night and I almost feel like a new woman! For such a tiny person, he sure does take up a lot of space in the bed. Yes, he very often sleeps in our bed. When I was pregnant, and even after he was already here, I swore that I would not be one of those parents who would allow their child to crawl into bed with them, no matter what, but real-life has shown me that sometimes no matter how sure you are in your mind that you will be one way, your kid decides otherwise for you.

Here are 4 Big Ideas I had going into this baby thing that didn’t quite turn out how I imagined:

1.  He would have the most comprehensive & complete baby milestone book on the face of the planet – I imagined myself writing down the date and time, right down to the very second, that my boy hit every milestone. (I briefly considered using latitude and longitude coordinates to precisely identify the location the "first" took place but scrapped that idea when I remembered I have no clue how to figure that out.) His first smile, the first time he sit up on his own, the first projectile poop (That one was on daddy. Yes, on daddy. Twice. In the same day.) 

I envisioned this cutely decorated scrap book filled with snapshots and notes that we could look back on together when he was grown. Currently, he is 20 months old and I have one picture marked “first time drinking from a juice box” that I just tagged a few days ago in my pictures folder on my laptop. Don’t get me wrong, I have a bunch of photos and videos of him doing things – you know, important things like batting at a fluff on the carpet with his back to the camera – saved on my hard drive but they are in random order with no tags or captions. There’s a picture frame on his wall with a cutout for each month and a big one in the center for the 1st birthday picture. I managed to put in photos that I guessed were months 1-10 just before his 1st birthday but am still missing months 11 and 12. Maybe I can get around to it before his 2nd birthday.

2.  Each person would sleep in their own bed – I know there are some moms (and dads, too) who think the best place for the parents & children to sleep is in one big, comfy bed. I do not subscribe to that theory. Unfortunately, my son does. They call it a “family bed”; I call it “I’d rather sleep on the couch because it’s more comfortable than my own cramped bed”. Up until he was about 11 months old all we would have to do is lay him down in his crib for naps and bed time and he would happily soothe himself to sleep. Out of nowhere, the script was flipped. I can almost hear the sound of a record scratching in my head when I think of the 360 he made. It began with him crying to be picked up. Ok, we decided, we’ll let him ‘cry it out’. But he would cry until he threw up. Eventually, he would skip the whole crying part and stick his hand down his throat to induce vomiting. This kid cuts right to the chase. We moved his crib to the foot of our bed, hoping being close to us would be good enough but no, he’d rather be scrunched up in bed with mommy & daddy. Wait, who am I kidding? The only ones scrunched up are mommy & daddy – baby is sprawled out like a king while we try not to fall off the edge of the mattress he's relegated us to nightly!

3. He would sleep through the night after he turned 1 – 

I really figured that by 13 or 14 months old, he’d be sleeping through the night. My zombie eyes and foggy brain prove otherwise. Up until about 16 months he was still taking 3 bottles a night! I’d like to say that I trained him to not need any milk through the night but truthfully he just grew out of it himself. What he does still do is wake up and insist on climbing into bed with us. You see, we transfer him to his crib after he falls asleep on our bed. But when he wakes and realizes he’s been moved, he screams and cries until he can get back into our bed. We must have a magical mattress because there’ve been times where I’ve woken to find him asleep, upside down at my feet. He’d climbed out of his crib onto our bed but didn’t quite make it to the top! He’s so sleepy, all he needs is to be in our bed, even if it is by daddy’s stinky feet (my feet do not stink).

4. We would eat veggies and healthy food every day, all day – Yeah, right. When I was a kid, my
mom had to tell me that every meat I was presented with was chicken, I wouldn’t eat anything dark, all the crust had to be removed from my bread & no vegetables or fruit (aside from bananas) would pass my lips. As I got older, I was known as the “Chef Boyardee Girl” because that was practically all I would eat. Then I went through a mashed potatoes-only phase. You could say I was a slightly picky eater. Turns out the apple doesn’t fall too far from the tree. I’ve read articles that recommend camouflaging veggies in foods kids love naturally. So being the crafty mom I am, I try to give him mac & cheese with broccoli mixed into it. It’s kind of amusing to watch him take a bite, chew it up a bit then let it dribble out of his mouth, down his chin and onto his belly, all the while eyeballing me with that “Go ahead. Test me” look. I’ve occasionally managed to trick him if he’s really hungry but usually you’ll find me trudging back into the kitchen to get him real mac n’ cheese.

Yep, things rarely turn out as how we imagine them. Especially when there’s a kid with his own ideas involved!

What are some things that you expected that didn’t quite turn out the way you thought it would?

If you enjoyed reading this, show your love by clicking on the share icons below!

Tuesday, June 11, 2013

I Wanna Hold Your Hand

I’ve talked about some of my fantasies in “I’m Aware!
My son helped me to realize one of them recently.

Such a silly little thing, to be able to walk alongside my child, holding hands but it’s the silly little things that make each day special. Today is a good day.

Monday, June 10, 2013

Facing Your Fears - Do Disabilities Scare You Away From Enjoying Family Outings?

When we were kids, my Uncle Victor and Aunt Lina used to take me and my cousins to K.I.S.S. park every summer. At that time, there were about 6 – 8 of us, cousins and siblings, all elementary-school age. K.I.S.S. is an anagram that my uncle made up but back then, I really thought the park’s name was Kiss – only years later did I find out that it wasn’t! The adventure would begin with a mysterious letter we would get in the mail (what kid doesn’t love pulling a letter out of the mailbox with their name on it?) It would be in the form of a puzzle or note of some kind with clues. We would put the puzzle pieces together or figure out the riddles and discover that we were about to embark on another great day at the park. I honestly can’t remember if there were any other adults there besides the hosting couple or how we all even got there! I just have these wonderful memories of hot summer days, dusty games of soccer & freeze tag, canoe rides, horseback rides and fun, fun, fun! The entire time I wrote this section, I did so with a big smile on my face!

Many years later, when I was in my early 20’s, there was a thought to revive this old tradition. Several of us were excited when Uncle Victor suggested we hit the ol’ park again. My daughter was a toddler and I was having a (very) difficult time with adjusting and accepting life as we knew it but I was filled with nostalgia and excitedly looked forward to K.I.S.S. with my family. By this time, I was in a very deep depression over my daughter’s state of health. She couldn’t sit on her own, let alone walk; she was non-verbal so there were no first words or “mommy”; she was having seizures that were progressively getting worse. When I was pregnant, as all moms-to-be do, I had these visions and fantasies of how life was going to be. Her first steps, first words, going to the playground together, shopping for school supplies, sleepovers, giggle-fests…Everything crashed and burned the day she was born. I found myself constantly running through flames, trying not catch fire as I stumbled through the burning building that became our lives. Every milestone missed, every specialist appointment, every “normal” kid who walked by us was another spark, a new fire threatening to engulf me. I can tell you that practically nobody in my life had even an inkling that I was feeling this way. I’ve always had a hard edge to me and I’m sure I came off as angry or bitchy. But I felt tremendously lonely and terrified and sad. These are still feelings that stick with me today, thankfully not to the same degree, and I know that the majority of parents who have children with disabilities know what I’m talking about. I was having a tough span of days filled with these icky feelings when I wrote “Mom Missing Out On Her Milestones.

It was difficult for me to enjoy the day at K.I.S.S. park even though I had hoped that it would be a great day. There they all were, those walkers & talkers, flitting about, eating burgers at the picnic table we couldn’t get a wheelchair under no matter how we angled it, playing kickball, just doing what normal people do at a park. Enjoying the sun kissed summer afternoon, their laughter floating in the peaceful breeze as puffy clouds gently slid across a sapphire sky. That’s how my eyes saw their joy. Soft. Velvety. Melodic.

All I could think about was the uneven ground that I had to fight with the wheels of her chair. There were tree roots and branches littered about, hilly sections, small ditches and other barriers that come naturally in a park. We were supposed to walk over to the canoe area – a walk that we always enjoyed in the past – but I kept thinking about the struggle I would have pushing the chair over the grassy areas to keep up with the rest of the group. Not to mention the uncomfortable bumpy ride for my daughter who was sitting in the chair! And what about the canoe ride itself? How were we going to safely transfer her into the canoe when she can’t help at all? She can’t sit without full assistance – how can we get her to actually stay in there? And if we do manage all that and make it back, how will we get her out of it now that we’re IN the water and the canoe is bobbing about?

These of course were only (some of) the PHYSICAL worries that consumed me. I haven’t mentioned the bigger meaning behind the physicality involved in bringing along a person like my daughter to a fun day at a park! Seeing everyone else dashing about care-free made our reality (mine & my daughter’s), our differences, actually palpable. These differences weren’t just a notion. No, they were real; unquestionable; cold and hard. The toll this takes on a person’s psyche is sometimes unbearable. There are some days where I have to work at keeping my joy.

She is now 15 and looking back I wish I had done so many things differently. Isn’t that how it always is; 20-20 vision tends to be perfect. Why did I allow myself to focus on the negative parts of the trip? Thinking back on it, the only memories I have from that day is a sad game of kickball (for me; everyone else was having a great time, as I should’ve been) and the canoe ride. (Which, by the way, wasn’t at all terrible. She was still little so transferring is not the game of logistics it is today. But even today, I have Nick Vujicic to remind me that pretty much anybody can get in and out of water!) Because of my own personal issues, I didn’t allow myself to enjoy what she could do. She was having a beautiful time with her cousins even though she couldn’t run around bases or get a turn throwing the boomerang and wasn’t that the point of the day?

I find myself still paralyzed with fear to this day. I want to do things or go places and decide that I will take her no matter what but then I chicken out at the last minute. I start thinking about the things that can go wrong – maybe there won’t be an accessible area for us to sit/stand; maybe there will be steps we can’t get up; maybe it will be too crowded and she won’t be able to see anything except strangers’ butts; maybe we won’t be able to find parking. The list goes on and on. And yes, those things can happen. On our first family vacation in 2012 we found ourselves blocked out of a building that housed the resort’s pizzeria, arcade and ice cream parlor because it had steps, even to the first floor!

But what if things like that don’t happen?? What if we go and there is a spot waiting for us to park in, the venue has curb cut-outs and ramps leading to it so we can get there and there’s a wheelchair-accessible area so she doesn’t have to miss out on seeing what everyone else is seeing? What about that?

There are some things that we just can’t do, for logistical and emotional (on my part) reasons. We can’t go to certain people’s homes because they're just not accessible. Taking the train into the city for a day of sight-seeing and shopping – not gonna happen. Spending a Sunday at the beach from dusk till dawn with coolers filled with bagels, cold cuts and bottled water – a thing of my past. But why should that stop us from creating wonderful, loving, fun-filled memories doing things that we can do? It shouldn’t –  and it won’t!

Did you have fears or sadness surrounding family outings like me? Do you still? What do you do to try to get past these feelings?