I’m sort of productive, sometimes.

Yesterday I:

– went through all of Noah’s clothes and put away all of the stuff he is too big for. It filled up a large Rubbermaid and half of a diaper box. This kid has TOO many clothes.

– finally emptied his hamper of clean clothes, thereby filling up his drawers yet again. Although it’s significantly less frustrating because I HAVE A SYSTEM and I don’t have to try and dig for something for him to wear.

– went through all of MY clothes and got rid of….. TWO. GINORMOUS. GARBAGE BAGS’ WORTH. The amount of clothing that I was holding onto for no reason (see: shirts that have my high school team on them) and/or didn’t fit me anymore and will probably never fit me again (see: skinny jeans in a size NINE that I wore before I was pregnant, that I could barely squeeze into anyway) OR just truly juvenile clothing that I’ve had since I was 16….was INSANE. I couldn’t believe it.

– finally emptied all of MY laundry baskets and put away my clean clothes. I basically never put my clean laundry away, so this was a GOLD STAR day for me.

– gave away the two giant bags of clothes and some body wash I am never going to use. Facebook groups are freaking amazing for giving away or selling things.

– went to a Tupperware party. It made me feel very…..mom-ish. Lol.

Today I:

– sold all of the shoes that I no longer fit. I had ELEVEN pairs of size 10 shoes chilling out in my closet for 2.5 years now, during pregnancy my feet grew to an 11 and never went back. So handing over a giant bag of shoes that have been taking up so much room was AWESOME.

– sold a pair of snowpants that have been hanging out in my closet for 3 years (that no longer fit me), the tags were still attached, for pete’s sake.

– took Noah to his Early Intervention playgroup, where he proceeded to cry for most of the 1.5 hours we were there. Trying to keep him entertained (i.e. bouncing him in the air, bouncing him on my knee, etc) left me ready for a nap by the time we came home. Oy.

– did some much needed grocery shopping while Noah was at his grandparents’. Where he proceeded to cry and cut our shopping trip short.

– finally bought Noah a new snowsuit, boots, and mitties. Today was SO COLD and I felt bad taking him outside in just a fleece jacket and a toque!

– realized that I can’t help who I’m related to but I have to come to terms with the fact that some of them are batshit crazy.

___________________________________________

To end on that RANDOM note, here’s a video of Noah!

This is from Monday, while traveling home from his pediatrician appointment in Edmonton:

Fiction is my reality?

On Parks and Recreation this week, one of the main characters (Tom) was required to go a week without any screens after hitting a mailbox with his car while Tweeting.

Hijinks ensue, and at the end of the episode this exchange happens:

Ron Swanson: “Why do you need to be constantly distracted?”
Tom Haverford: “The truth is, I spend a lot of time looking at screens because recently a lot of the stuff in my real life isn’t going that great. So I’d rather play DoodleJump than think about that.”

Now, I like Parks and Rec and I have been watching it for awhile now. But this was the first time that it actually made me really relate to a character. I easily could have written that exchange myself.

Because that’s what I do. I hide online, in front of screens.

My real life is depressing. I am severely depressed.

I don’t know what to do with my days…..I often wonder what it was like 10 years ago, before Facebook. Or 20 years ago, before the internet was in every home, before a cell phone was in every hand. I think of my own mother and I can only guess that the reason her house was always neat when we were little was because all she had was her soap operas and trashy celebrity gossip magazines to distract her and not much else.

I also wonder what it was like for the parents who had special needs children, before the internet. I mean, I feel lonely enough NOW and that’s with several groups I am active in on Facebook, including a few mom groups and a couple specially for HIE/CP kids.

I DO find camaraderie online…….although I spend waaaaaaa(^100)y too much time on Facebook.

Sometimes I wish that I had never gotten Facebook. Sometimes it freaks me out how many people know where I live, what my cell phone number is (by buying/selling stuff online) or just random factoids about my life by searching online. It’s creepy that you can Google my name and find the Bebo account that I haven’t used for 5 years….my MySpace…this blog….my Facebook….etc. Just recently I finally removed my middle name on Facebook after having it there since 2007. I even feel weird about having my full name in my email address sometimes. Sometimes I just want to be anonymous.

But I (majorly) digress.

I think that I am going to TRY to limit my “screen” time. Maybe check Facebook only every 3 hours instead of every few minutes. I need to wean myself for when I’m going to school in January anyway. I hope to be working full time by September….I can’t be going on Facebook at work like I do normally!

My addiction started when I was working before I went on mat leave….the bar/restaurant that I was employed at was almost always slow. I would sit and read the newspaper, I had nothing else to do. Then when the newspaper (or newspaperS, as I would catch up on ones that I had missed) was finished, I would move on to reading FML and TFLN on my phone. Then Facebook. Eventually I could barely put my phone down at work, and by the time I was leaving to go on mat leave I was beyond caring. I was done. Then I had nothing to do but wait for the baby….as a result, the house didn’t get cleaned and decorated for Christmas until 4 days before he was born, when I was 40 weeks. Then after he was born, I actually was off Facebook for almost 3 whole days while we were at the Stollery. All I had was my birth club at that point, so it was just too hard for me to be around them when we were waiting for Noah to pass away. Once we got home, I was feeding him every 3 hours. At first I would just be on my phone for the middle of the night feedings, then I started falling asleep all the time so I would have the TV on quietly. After Noah dropped those feedings, that habit continued….so even now I am on my phone and watching TV while I am feeding him. The kid gets a disturbingly high amount of TV time because it is literally on all day….the quiet is deafening if I turn it off.

The TV is my background noise, my phone is my outside interaction. And I truly think that both Noah and I are suffering for it.

I fail so hard, daily. I don’t do half of the things I should with him. I’m ashamed to admit it, but it’s true.

I’m mentally exhausted from all of this. Every day is almost exactly the same. Nothing ever changes. I feel like maybe if I would have done more when he was wee, he would be better now. I keep seeing all of these kids in his HIE group who started off way worse than him, and yet can sit up at least. People talk about doing 2 hours+ of therapy and exercises every day. I feel guilty, because he gets maybe that much a week from me.

I removed myself from him emotionally when we took him off life support. I truly don’t know if that was ever fixed. It feels like we have a disconnect. And that makes me feel like the biggest Mom Fail ever. I just don’t know what to do with him. There’s only so much tummy time he can do. And it’s not helping anything. Sure, his head control keeps getting better but the differences are so slight that I wonder if he will EVER hold his head up properly. Is it my fault?

Every. Single. Day. I go to bed and wish that this was all some overly detailed nightmare. How can this be my reality? All of his baby friends are light years ahead of him. They are little people, he is a “newborn”. The Winter Baby 2.0s are doing more than he is, forget his peer group of 1.0s.

I wish that I didn’t have to worry about the future so much. Do you know what I learned the other day? That children with cerebral palsy are prone to premature aging and have a much more difficult time recovering from illness and injury. I mean, it makes sense since the severely affected ones like Noah don’t have much muscle mass or fat stores to see them through illness. They haven’t stuck germs in their mouth via toys to pump up their immune systems. They have an adapted diet, which may not allow for a wide range of foods that would offer the nutrition to stave off illness and infection. That is terrifying. What the hell is going to happen when he is in school?! People’s little disease vectors are going to be coughing in his air, or perhaps touching his wheelchair. Especially because where we live apparently has the highest number of unvaccinated children in Canada (read that somewhere, not sure if it’s true)…..eek! God forbid if he catches something serious like measles, mumps, pertussis, etc. I’m kicking myself for not getting him the RSV vax.

But yet again, I digress.

I’m going to try to wean myself off TV and phone. Maybe having just music on in the morning. Working on giving him more tummy time. Reading (or gasp! cleaning) during his nap instead of watching TV. Going on my phone only during bottle time and/or after he is asleep at night. Going to bed at the decent hour of midnight instead of…..the crack of dawn.

It really needs to change, it is embarrassing.

My name is Olivia, and I am addicted to screens. 

P.S. Here’s some Noah for your weekend 🙂 ❤

Happy Halloween! 🙂

“Welcome To Holland”

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

“Thoughts of a Mom”

Thoughts of a Mom

By Maureen K. Higgins

Many of you I have never even met face to face, but I’ve searched you out every day. I’ve looked for you on the Internet, on playgrounds and in grocery stores. I’ve become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my “sisters.”

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.

We were initiated in neurologist’s offices and NICU units, in obstetrician’ s offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn’t quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children’s special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world.

We do not discriminate against those mothers whose children’s needs are not as “special” as our child’s. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know “the” specialists in the field. We know “the” neurologists, “the” hospitals, “the” wonder drugs, “the” treatments. We know “the” tests that need to be done, we know “the” degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychiatry.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it.

We have tolerated scorn in supermarkets during “tantrums” and gritted our teeth while discipline was advocated by the person behind us on line.

We have tolerated inane suggestions and home remedies from well-meaning strangers.

We have tolerated mothers of children without special needs complaining about chicken pox and ear infections.

We have learned that many of our closest friends can’t understand what it’s like to be in our sorority, and don’t even want to try.

We have our own personal copies of Emily Perl Kingsley’s “A Trip To Holland” and Erma Bombeck’s “The Special Mother.” We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors’ front doors on Halloween, and we have found ways to help our deaf children form the words, “trick or treat.” We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We’ve gotten up every morning since our journey began wondering how we’d make it through another day, and gone to bed every evening not sure how we did it.

We’ve mourned the fact that we never got to relax and sip red wine in Italy. We’ve mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we’ve mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

Musical Fridays

“Young Blood”

We’re only young and naive still
We require certain skills
The mood it changes like the wind
Hard to control when it begins

The bittersweet between my teeth
Trying to find the in-betweens
Fall back in love eventually
Yeah yeah yeah yeah

Can’t help myself but count the flaws
Claw my way out through these walls
One temporary escape
Feel it start to permeate

We lie beneath the stars at night
Our hands gripping each other tight
You keep my secrets hope to die
Promises, swear them to the sky

The bittersweet between my teeth
Trying to find the in-betweens
Fall back in love eventually
Yeah yeah yeah yeah

As it withers
Brittle it shakes
Can you whisper
As it crumbles and breaks
As you shiver
Count up all your mistakes
Pair of forgivers
Let go before it’s too late
Can you whisper
Can you whisper
Can you whisper
Can you whisper

The bittersweet between my teeth
Trying to find the in-betweens
Fall back in love eventually
Yeah yeah yeah yeah
The bittersweet between my teeth
Trying to find the in-betweens
Fall back in love eventually
Yeah yeah yeah yeah