What Most People Don't Think About

When you have a child with any sort of special needs, there are things you have to think about that would never even cross your mind otherwise. Since becoming mommy to Charlie, I've found that I now think in a different way. The things I think about are different than other people.

For example, the other day we were driving down the road after dark. We were stopped at a light, and Charlie started pointing out the window and yelling excitedly, "Mom! A pumpkin!! Mom! Pumpkin!". I looked out the window to where he was pointing, and I searched for the pumpkin. But it's December, and there were no pumpkins in sight. Then I decided to try and see things from his point of view, so I squinted my eyes to blurr my vision and I looked around again. This time I noticed a building with three downward facing lights with orange-tinted bulbs in them. The orangey light that was cast down on the side of the building formed a sort of round ball. With my eyes squinted, I could see how that ball of orange light could look like a pumpkin. So I explained to him that it looked like a pumpkin from a distance, but it was actually just a light. If we had been able to get up close to the building, I would have taken him right up to it to look closely at it so that he could see what was making that shape.
Every single time he thinks he sees something from the car or out our window or on the TV, I have to try really hard to figure out what it is that he's looking at and what about it makes him think that he's seeing what he tells me he's seeing. Sometimes, like with the orange light and the pumpkin, I can figure it out. But I'm still learning to try and see things the way he does.

 

Other things that I think about on an almost daily basis:
Every day I try to come up with a new sensory experience for Charlie. Children with vision impairments generally have other heightened senses like hearing, touch, and taste. Because of that, Charlie has some sensory aversions. Playing in the corn-boxes during the fall, for example, is a nightmare for him. Also, if he falls down in grass, he won't use his hands to help himself up again because he refuses to touch the grass. Same with snow. He loves play-doh as long as I use it to form a road, and then he can drive his car on top of a road. But he won't actually touch the play-doh.
Everywhere I go I take an extra pair of sunglasses for him, a hat, and sunscreen.
Every time we get in the car I think about where we are driving and which direction the sun will be coming from. Then I try to position Charlie as far away from the sun as possible.
At every meal I pick out a bowl or plate for his food. And then I pick out a utensil. But I can't pick just any utensil, I pick out one in a color that contrasts the color of his plate or bowl. For example, if he has a green plate, I try to pick out a red spoon. I think this is more me being crazy than Charlie actually needing it, but if I pick a green spoon for his green bowl, I worry that he won't be able to see it. One day we were playing outside and I threw a green ball to him and it landed behind him on the green grass. He turned around and scanned the ground for a minute, and then he actually found the green ball! I know it's a really small thing, but that was a very proud mommy moment for me.
When we walk into a restaurant, or go to any new place, I check the lighting to see if I need to put darker sunglasses on Charlie or if there's a better location for him to sit or play.
Whenever we go on walks or to a new place, I try to remember to grab his cane.
While walking outside, I have to remind Charlie when we are approaching a curb, a bump, a drop off etc. Even changes in color or texture can throw him off in unfamiliar environments.
When Charlie asks where something is, I am having to retrain myself to not just point and say "over there". I need to say "it's by the toy box" or "under the chair". That also poses some more difficulties, since he doesn't understand most directional words yet. We are trying to teach him "under" "behind" "inside of" etc.
We have so many therapies, toddler groups, doctors appointments etc. to keep up with. I've had to resort to a much larger and more visible calendar to keep track of it all. He has therapy 3x a month; toddler group (with other visually impaired children his age) once a week; visits with the Geneticist every year, Ophthalmologist every 6 months, and the Dermatologist (for cancer screenings and eczema) every year.
I also have to think about not favoring him. Not that I love him any more than I love his sisters, because I don't, but I find myself wanting to go easier on him. Wanting to help him more than I help them. It takes a conscious effort on my part not to do that.
Then there's trying to figure out how to respond when people comment on his hair. Sometimes I just laugh and say, "He is very unique." Other times I mention that he has Albinism, which I nearly always have to follow up with "albino" for others to understand what I mean. Sometimes I just ignore the comments altogether. It depends on my mood and the situation.
Forrest and I also have regular conversations about how we can teach him everything we want him to know. Forrest wants him to learn karate or some sort of martial art, in addition to the basics of fighting so that he can be confident that he can defend himself if he needs to. I'm on board with that. We've also started a collection of books and movies about people who have overcome challenges to be successful. Some of the movies we've started with are Finding Nemo, Frozen (mostly because Elsa has white hair), Mulan, Meet the Robinsons, and Monsters University. Being a mom is a lot of work and a lot of pressure, but I feel some added pressure to teach Charlie that he can do anything he wants to do. He needs to know that there are ways to work around his impairment, and I am trying my hardest to give him all the tools he needs to be able to do that.
Additionally I think a lot about his future. Will he want to learn brail? What sports will he want to play? What if he chooses baseball? (I'm terrified that he will choose baseball, actually.) Will he be able to drive a car? (At his most recent eye appointment, his doctor said he thinks Charlie will be able to drive. YAY!!!)
I also think about ways we can develop his current talents and interests. Music in particular. I hope he will want to play an instrument, or sing, or do something musical.

I have learned so much since becoming Charlie's mom, and I'm so thankful for him and that my mind is expanding and growing in ways that I didn't even know it could. But as much as my mind grows for him, my heart grows infinitely more. There's something so special about Charlie, and I'm so grateful that he's mine.

Things I Want to Remember

Charlie and Caroline refer to themselves as "me me"

They call all other children and toys "friends"

They are obsessed with the Magic School Bus

Charlie calls Juliet "Ju-et" or "JuJuJee"
Every morning we eat oatmeal with blueberries in it. Charlie and Caroline have this little battle that they do constantly throughout the day where one of them yells "Oatmeal blueys a night!" and the other one yells back "Oatmeal blueys a breakwast!" over and over again. I don't fully understand it but they think it's hilarious.

When care bear is cold she says "colder colder!"

When Charlie is cold he covers his eyes with his hands

Every time I pick up Juliet, she pats me twice on the back

Charlie's favorite food is macaroni and cheese. When I ask him what he wants to eat, regardless of what meal it is, he responds excitedly "Mac and cheese!"

Caroline was playing with a little M&M statue at her grandma's house. The M&M was in a recliner watching tv with a remote stuck in his hand. Care bear tried for at least 5 minutes to get that remote out of his hand, when finally she got so exasperated and she said to him in her most concerned voice "friend, me me need that remote!"
Charlie loves to tell me what color things are, and he loves to name things around our house. If he doesn't know the name for something he calls it "this" or "that" until I teach him what it's called. He is such an eager learner.

Juliet still sucks on those two middle fingers constantly

One day I took Caroline to the bathroom and left her in there to go potty while I was feeding Jules. She yelled in to me "mommy, all done, eee wipe!" (She prefaces lots of words with eee). I told her to wait because I was feeding her sister. Then she yelled to Charlie "Jawj, eee wipe!" (She calls him Jawj). I immediately jumped up and ran into the bathroom to see Care Bear leaning forward on the potty, Charlie standing next to her with a wad of toilet paper in his hand and trying to wipe her bum. 

Charlie calls me "momeem"
Every morning when Caroline sees Juliet she yells "Hi Sweet Pea!"

Juliet LOVES food in any form. When she sees food she grunts and won't take her eyes off of it until she gets some
Charlie had brought two remotes to the Wii upstairs. Caroline found them and said they needed to go back downstairs. I asked her if she would take them and she looked up at me and said, as serious as could be, "No mom, can't. Too heavy."
Char loves music. He's been able to sing the ABC's from start to finish for almost a year. He sings to himself constantly. His current favorite songs are "Jingle Bells," "Wheels on the Bus," "Jesus Wants Me For a Sunbeam" and the Fire truck song.
Anytime Caroline sees a wrapped gift, she gets so excited and yells "Happy birthday to Care Bear!"

My favorite things about each of my children:
Charlie - he just LOVES. He dotes on Juliet, he adores Caroline, and he smothers Forrest and I with hugs and kisses constantly. He always wants to be holding my hand, and he's always my little pal. And my very most favorite thing about him is how much he loves to laugh. He always has! Rough-housing and being tickled are his all time favorite pass times. He has the most contagious laugh and people around him can't help but love him. He draws attention everywhere he goes, and I'm absolutely certain his face is in photographs in homes all over the world (foreigners seem to especially love him and beg to take his picture).
Caroline - She is just so happy. All of the time. When she wakes up from her naps and in the morning, she wraps her arms so tight around my neck and yells "Hi mom!" (She doesn't ever just say anything - it's always a yell.) She is so full of energy and just bursting with excitement about life. When she does something she likes, she yells "That so fun!" Even when she gets scared she giggles and says "That scare me!". She loves everyone and she loves life.
Juliet - My little Jules is the most content baby ever. She never makes a peep, she just crawls around and eats anything she can find on the floor. She is the easiest baby ever to get to sleep. She never cries when I lay her down and she just sticks her fingers in her mouth, rolls over onto her belly and falls right to sleep.
 

Oh how I love these little people of mine.

Bad Mom Days

Yesterday was one of those days. I spent way too much time on my phone, I didn't do any dishes or clean up after any meal. I let the TV babysit my children (or at least my one child who will actually sit and watch it.. but still, taking care of 2 kids is infinitely easier than taking care of 3). We all stayed in our pajamas and didn't even brush our teeth. I took a nap while my children were awake and playing near me, despite Charlie's best efforts to get me to play blocks with him. I attempted to make dinner but burned it to a crisp. When Forrest finally walked through the door at 7 PM and asked me how my day was, I felt ashamed. "I was a bad mom today," I told him. He assured me that I wasn't a bad mom and that I was doing the best that I could.

That night after the kids were in bed, I sat there thinking about that. About my bad mom day, and about how I was doing the best that I could. But that started bugging me. Was I really? Because seriously, if what I just described was "doing the best that I can" then my children are doomed. I do think that sometimes I (and maybe moms in general) hold myself to unreal expectations that my kids will be fully dressed and hair done by 9 AM, we will eat healthy and delicious meals 3 times a day (all prepared by me), our house will remain clean and our laundry will always be clean and put away, we watch minimal TV and we spend our day reading books, experiencing new sensory play, and learning our shapes, numbers, colors, and alphabet. Some days that happens, and it is usually my goal. But then there are just those days.

I feel like social media has influenced parenting, and particularly motherhood, immensely. So much sharing of so much good is wonderful, but it definitely plays a role in making mothers feel inadequate. It's not right, but it's only human to compare ourselves to others. When I have a bad mom day, I start comparing myself to Penny down the street who has 8 kids under the age of 5 and has a clean house and children who are dressed with hair done and who seem absolutely perfect. But then there's the other side to social media and it's influence on parenting. There's the side that says that "this is real life" in reference my bad mom day activities. It's the side that is trying to make us all feel better by telling us that it's unrealistic to have a clean house and happy children and healthy meals. And that it's ok to spend all day watching TV and scrolling through Facebook because motherhood is hard, and we all deserve a break. But it's not ok for me.

Me "doing the best that I can" means that I'm at least giving an effort. I know that I won't always live up to my perfect expectations, but I'm not ok with lowering my expectations so that I can meet them every day with minimal effort. My kids deserve better than that.

I know I'll still have bad mom days. And probably a lot more of them than I would like. But the important part is that that's not the norm. "Real life" to me is laughing with my kids, reading them stories and giving them kisses. It's watching them grow and learn and amaze me every single day. Bad mom days are a part of that life, but only a very small part.