A Spectrum of Emotions

Tonight my friend posted this on her wall:

Even though I still have a bazillion things to get done before our amazing virtual conference for bloggers and writers kicks off tomorrow, I saw her words and stopped. Danielle is more than just a Facebook friend, even though we’ve never actually met in person. She met my sister at a Kappa Alpha Theta grand convention one year when they were both presidents of their alumnae groups and my sister connected us because we had something serious in common. Like me, her third pregnancy was very unexpectedly twins.

[bctt tweet=”If you know me, you’ll understand I’m stronger than this. It’s just been a long day. #momlife #autism” username=”losethecape”]

When we found out my girls had Twin-to-twin Transfusion Syndrome (TTTS) – Danielle, who was four months ahead of me in pregnancy, was there for me. When one of my twin daughter’s passed away two days after they were born, She sent me a book about another mom who also lost one of her girls to TTTS. We’ve developed a real friendship in the last five years.

Both of her boys were born full term and healthy, but they are on the spectrum. And many days are just tough.

I love you Danielle. Thanks for letting me share your story.

A Spectrum of Emotions – Danielle McLean

Hey team. Life’s been crazy. Surprise surprise.

Everyday there are close to 12 stories I could share that would be entertaining, terrifying, or tragic. But then I get tired and it’s the end of the day and in a few short hours we start all over again. And by the time I think to type something up, 1,405 other stories have already come and gone, and without cataloging them, they’re erased from my mind. It’s probably for the better–if I shared all the yucky, horrible, beautiful, wonderful, terrible things that happen in our world daily, it’d be too much for most. For your sake it’s better that I forget almost instantaneously what happens in my life.

I’ll just start rambling and see what comes out.
(Warning: I’ve just read through it and it’s a bit of a pity-party. So if you’re having a rosy, lollipop-of-a-day, don’t keep reading and ruin it.)

There’s a storm brewing. School is out. Luke, my baby, turned 10. And I think I’ve gained about 5 pounds in 5 days.

I don’t know how that happened so quickly but here we are, fully swinging in the summer. It’s been 5 days since school’s been out and I’m SERIOUSLY struggling to find my groove with these munchkins. The twins have made great improvements in their communication with us over the last school year, but they remain the most demanding of my kids. They’re only really amused by a few things in life–their ipads, youtube, netflix, letters, numbers, shapes, goldfish, cheddar rice cakes, ice cream, etc. If those things aren’t in play, then there WILL be a meltdown, sooner than later.  So each day seems like a cacophony of grievances. Moans, groans, whines, screams, yells, shouts, cries–all of the above. And it’s really hard to cater to them all the time, to keep the peace, without doing them the disservice of not teaching them patience and self-control.

But if I let them scream out and freak out, I make Luke and Juliette suffer too as they are confined to a house of horror this summer.  (I don’t include Levi in the victims because he’s been contributing to the horror lately as well, hello awesome-2- year-old who loves to say no to everything.)

They were recently evaluated to enter speech therapy for the summer, and they did the preliminary screening to see where we want to start out.

Both boys scored on the same levels of a 2 year old for oral communication and demonstrating comprehension.

That was REALLY hard to type just now.

Because they’re 5 in September. But they can only express as much as a new 2 year old can.

Levi has already passed them in his ability to express and communicate.

And please don’t bother telling me “oh you just can’t compare siblings.”

Because the big fat secret of parenting is that we DO compare.  Sorry to let that out of the bag.

I know better, but it still happens.

The moments where their delays seem unimportant or cute are slipping away. When a stranger asks a 1 year old what his name is and he doesn’t answer, it’s cute and innocent. When a stranger asks my 4 year olds what their names are and they doesn’t answer, it seems rude, or worse, shows them to be dumb, which I KNOW they’re not.

Ryan likes to remind me that comparison is the thief of joy.

I know who comparison is, no need to remind me. He’s the jerk who makes me cry when I’ve convinced myself that 97% of my peers have nowhere near as hard of a day as I’ve had. (Yes, I’ve pulled that number out of my butt.)

He’s the punk that tells me I have THE most rundown house/car/fill in the blank out of anyone I know. He really sucks and I hate him. Nevertheless, he lets himself in, and is the WORST guest, trashes my mind and it takes A LOT of scripture and quiet time to get him out.

Just this week, he stomped all over me.

 

There’s been a little cute series of toddler questions floating around social media, you’re meant to ask your toddler/preschooler this series of questions, and write down their first responses, and post them on your facebook page so everyone can get a good chuckle.

Enter: Comparison.

My boys are almost 5 and after reading through the questions, I KNEW this would be an exercise I would just have to not participate in, because there was NO WAY my boys would get through these questions. Things like, “Who’s your best friend? What’s your favorite color? What’s your favorite food? How old is mommy?”

They barely answer when I ask them what their names are, so this little quiz was not meant for my boys on the spectrum. Actually, most of the time they do answer questions, but they answer incorrectly. Even though we’ve been working on it for years.

“What’s your name?”

“Mommy.” 🙂
“What’s MY name??”

“Mrs. Pinho.” (their teacher).

“No baby, what’s MY NAME?”

“4.”

So clearly, this little cute moment where I write down all their answers then share with everyone, was not going to be something we participated in.

But for some reason, (I don’t know if I was feeling particularly miserable or hopeful, I can’t remember) I decided to ask them the questions.

And as predicted, I got sad.

They either didn’t answer me at all, stared at me and smiled, or simply responded with whatever the last word was that I used. (“How old is daddy?” response: DADDY!)

This quiz was meant to be a cute little highlight of our children’s innocence.

And it is exactly that, for most… because most parents can laugh at their child’s incorrect answer, KNOWING that in just a short period of time, they’ll be able to answer them all correctly.

But for us, it’s just another mark in my life where I am left comparing. The boys will continue to improve, I know that. But at what rate?? If by 5 they respond as a 2 year old would, then by 10, will I be able to talk to them like they’re actually 4? Is that too hopeful?

But no one has those answers. No one can tell us that.

[perfectpullquote align=”full” cite=”” link=”” color=”” class=”” size=””]In the meantime we just move in and out of our day, celebrating the most UNDERVALUED moments in other parents’ lives, like when your 4 year old calls you by your name, or when he says hi and notices you walked into the house. [/perfectpullquote]

In the meantime we just avoid taking them to the grocery store, restaurants, the movie theater, the mall, the doctor, the dentist…really anywhere that will make them feel uncomfortable, or make other patrons feel uncomfortable.

In the meantime we eat chicken nuggets and corn dogs, we don’t eat oranges or bananas in front of Jackson because just the sight of us eating those will make him vomit.

In the meantime we make excuses when asked why we didn’t attend a big, family-friendly get together.

In the meantime we do not attend Luke’s award ceremonies together, one of us stays home with the twins.  In the meantime we both cannot go see Juliette perform in her ballet, or in her class play.

And that’s just life. Not everything can be kodak. Sometimes there’s wet poop smeared across the legs of the child who decided to stand in the toilet and slosh around for a bit.  Sometimes someone escapes, bottomless, and goes streaking up and down the sidewalk until the neighbor knocks on your door.

I mean, that’s not so bad. Not every day can be lollipops and roses.

Some people can look at their day and say, it was a GOOD day. But for me, I feel much more comfortable saying we had a good moment. A good run. To my recollection, we’ve never had a good, calm, cry/scream/freakout-free day. And that’s just what motherhood is of this size family, of these ages. I know.

I just hope and pray that someday, we can go sit down together at a restaurant, as a family, without ipads, and just look each other in the eyes and appreciate the company we’re with.

Right now that sounds just as realistic as the day we will all clean up after ourselves.

The ugliest confession of all, that I hate about myself, is that I wish they were different.

That is so so so awful.

As I type it, I can’t swallow, my face is beat red and hot tears are rolling down. I know how horrible it sounds. I am broken over those thoughts, I cry more over those thoughts than any other thoughts I’ve ever had.

[bctt tweet=”The ugliest confession of all, that I hate about myself, is that I wish they were different. #autism” username=”losethecape”]

Because what mom wishes her kids were not who they are? I keep a strong face around people but behind the laughs and carefree facade I’m heartbroken over the unknowns of their future and heartbroken that they may be feeling loneliness, fear, isolation, and confusion all day in their little worlds but they can’t tell me about it.

I wish they were normal. I wish they could talk to me and play games with me and enjoy my company as my other children do.

But they’re not my other children.
They’re Jackson, and Lincoln.
And here are the things that make me stop crying:
I know God has a plan to prosper them, to give them a hope and a future.
I know God chose ME of the entire world of women, in the entire span of human existence, He chose ME to be their mother.

That’s it. Those two things make me dry my tears and finish the dishes, and those two thoughts help me look past the crazy antics and fear of the unknown.

I know if you’ve read all the way to this paragraph you’re probably emotionally exhausted with me, but I want to share that one of the most helpful blogs or articles I’ve ever read about this relates having a child with special needs to receiving an orange for dessert.

Sounds strange until you read the blog. It’s honest, and it’s everything I feel about parenting and working with J & L. Please jump over and read it to understand why raising oranges is difficult.
When Life Gives You Oranges

[bctt tweet=”Pray with me that I can keep my eyes focused on the sun and not the black clouds. #momlife #autism” username=”losethecape”]

To wrap up, I’ll remind you all, I’m a dreamer. I’m a pray-er. Anything is possible. Right now we will just go day to day and trust that this is a season, and however stormy,  gray, and sometimes black the skies look, it will pass, and the sun will break through this.

Pray with me that I can keep my eyes focused on the sun and not the black clouds. I feel a dark summer brewing and ain’t nobody got time for that.

Danielle McLean is the mother of five young children. You can find her on her blog: Mediocre Mom.