Tag Archives: family

A House Full Of Love

14 May

I am participating in the 2012 Wordcount Blogathon, which means one post every day for the month of May.

Today is Guest Post Exchange Day! I am honoured to introduce you to a fellow special needs mom, who is not only an awesome blogger, but also an awesome friend. Mimi has not one, not two, but five children with special needs. That would sound daunting to anyone, but Mimi wouldn’t change her life for anything.

Hi!  I’m Mimi, mom to 5 great kids, all with special needs, but we don’t focus on that.  We focus on their achievements, their triumphs and the love that they have for each other.  Sure, they fight just like any other siblings would fight but at the end of the day the love is still there for each other.  My oldest daughter is 24 and diagnosed with PDD-NOS (a form of autism) and is an unmedicated bipolar by her choice.  My next daughter is 22 and was born with Down Syndrome, hydrocephalus, PDD-NOS and acanthosis nigricans, she’s my spit-fire child.  Next is my soon to be 16 year old daughter who was born with spastic diaparesis cerebral palsy, she also has Asperger’s Syndrome, bipolar with psychosis, anxiety disorder and an eating disorder.  Next are my two boys, my first son is 10 (11 in June) and for some unknown reason he is cognitively impaired, he too has PDD-NOS and a mood disorder.  My youngest son is 9 (10 in June) and he was born with Fetal Valproate Syndrome, static encephalopathy (due to a traumatic birth), he has PDD-NOS and a mood disorder.

Raising special needs children has its ups and downs, but I wouldn’t trade my life for anything the world has to offer me.  My children are the reason my world rotates on its axis.  Some people call me a mother polar bear because I am so protective of my children, but who else is going to protect them besides me?

My boys are the best of friends, they are great playmates for each other and I hope and pray that the bond between them stays forever.  It’s similar to the bond between my 2 oldest daughters.  They are close because when they were young girls, I was a single parent by my choice, so it was just us 3 girls against the world.  Until I met my husband in 1994, Bethany was 6 and Lauryn was 4 and Jon has been their daddy ever since.

What entertains my kids?  Different things…  My boys are video gamers with their dad, they each have either their PSP’s or PSP Go’s or in Jons case his PSP Vita, but they all three will gang up on the bed and be gaming, ignoring everything else that’s going on, whereas Maurra my (almost) 16 yr old loves doing research on various things, which is very common for children diagnosed with Asperger’s Syndrome, right now she’s focusing on historical events.  Lauryn is crazy for Justin Bieber and loves to watch horror shows in her bedroom.  Bethany is my crazy football fan – well I’m pretty crazy for our Green Bay Packers also, so we tend to watch football together and we DVR the games so we can watch them through the week.

Our social outings look a little different than most.  First of all, my 3 youngest kids can’t handle car rides very well, so our trips have to be short in nature, and there has to be a reward at the end of the trip.  Lauryn enjoys going to her adult day program 4 days a week, but that’s about the extent of her traveling comfort.  She loves to dance in the truck which is fun and the cars around us seem to be her audience.  Bethany (my oldest) and I tend to do mother-daughter outings or she will go with me if I have to run errands.  It’s hard to break things up so the kids can handle everything, but in the end it’s for the best for them.

The boys are getting ready to start their 3rd year playing Miracle League baseball, which is baseball strictly for children who are disabled.  I volunteer my time with the league as the team coordinator and absolutely love watching all of the kids play the game.

Like I said before, I love having special needs children, and now we are looking into adopting a special needs child because there is more room in my heart for more children, but I can’t have them myself anymore.  So we are looking into a special needs adoption.  I hope it all works out for the best.

Well, thank you for letting me share my family with you.  Have a great day!

And thank you, Mimi, for sharing your family with us!

Mimi has a great blog at Wife… Mom… Writer… All Blessings. She can also be found on Twitter @Gigi_S.

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The Transience Of Life

4 May

I am participating in the 2012 Wordcount Blogathon, which means one post every day for the month of May.

As I write this, I am sitting on the subway (having miraculously gotten a seat with enough room to type) on my way to the memorial service for my friend Margaret, who died last week.

Her passing was a big shock to me and my husband. We knew that she had been sick, but we had no idea that her illness was life-threatening. We did not know that she had cancer.

As I prepare to honour Margaret’s memory and offer condolences to her husband, I am still reeling from the very unexpected death of my aunt just three months ago. I find it hard to believe that so recently, I was jetting to the other side of the world to comfort my mom and help scatter the ashes of a woman who had been like a second mother to me.

These events – the deaths of my aunt and my friend – have led me to think almost obsessively about the transience of life. I am very aware that at some point over the next few years, I will lose my mom, who is now the last surviving sibling in her family. In all likelihood, because I am ten years younger than my husband, someday I will be widowed – hopefully a long time from now.

And I think about how I am getting along with everyone in my life, how much they all mean to me, and how much it would devastate me if any of them were to suddenly not be here anymore. I worry about whether I am a good enough mother, wife, sister, daughter, and friend.

I find myself feeling permanently shaken by the idea that at any moment, someone I love could simply and suddenly be gone forever. Arguments and disagreements upset me a great deal more than they used to, because what if I never get a chance to make it up with the other person? What if I never get to say sorry?

Earlier today, I gave one of my best friends a directive that she is not allowed to die. Ever. Not understanding the depth of how I feel about all of this these days, she asked why.

Well, it’s because I value her friendship and although our only communication is via email and Facebook, she is an integral part of my life. And I want her and my other loved ones to be there forever.

I know it’s a simplistic wish – for people to never die – but whenever I lose someone close to me, I feel like a part of me dies with them.

The only bright part of this is that when they die, a part of them stays alive with me – a part of them that I carry with me always, no matter where I go.

My point in all of this is that life is short. There is no time for meaningless disagreements that really don’t matter, and there is no time for people to treat their loved ones in a way that makes them feel unhappy, unwanted, or unworthy.

We need to embrace the people we have, while we still have them.

And when arguments happen, as they invariably do with us humans, there is no better time to patch things up than the present.

(Photo credit: http://www.flickr.com/photos/mikebaird/3036430387/. This picture has a creative commons attribution license.)

Beyond The Stars

29 Apr

I am participating in the Health Activist Writers Month Challenge, in which I publish a post every day for the month of April, based on health-related prompts.

April 29 – Six sentence story: In this day of micro-blogging – brevity is a skill worth honing. Can you tell a story and make it short and sweet? What can you say in six sentences?

When my son George was diagnosed with autism, I didn’t really know what it meant or what he would ultimately be capable of.

I didn’t know what it would mean for my family, or for George’s sibling relationship with his little brother.

Since then, we have discovered that George has potential that reaches beyond the stars, and that all we have to do is help him get there.

We have discovered that he has a big  heart with an infinite capacity for love, and that he and his brother will be best friends for life.

There are challenges, and I worry about what the future could bring for my boy.

But I believe in him absolutely.

(Photo credit: http://www.flickr.com/photos/gsfc/5161800961/. This picture has a creative commons attribution license.)

Dream A Little Dream

14 Apr

I am participating in the Health Activist Writers Month Challenge, in which I publish a post every day for the month of April, based on health-related prompts.

April 14 – My dream day: Describe your ideal day. How would you spend your time? Who would you spend it with? Have you had this day? If not – how could you make it happen?

Summer 2008

My perfect day…

It is a hot day and the sun is shining brightly. We are on a beach with lots of soft white sand, and the sound of the Atlantic waves fills our ears.

It is our first proper family holiday. I am with my husband and my two children, who at 2 and 4 years, are the perfect age for children to really enjoy a day at the beach. My brother is there too, and so is my mom, who has flown in from South Africa to be with us.

George, who is almost five, has found a new hobby. He lies down on the slope leading down to the water and he rolls himself down, down, down until he feels the waves kissing his body. Then he jumps up, and squealing with delight, he runs back up the slope to do it all again.

Not only is this fun for him, the physical motion of what he is doing seems to give him some kind of sensory input – something that many children with autism crave.

Two-year-old James and I are sitting near the water’s edge, and I am teaching him how to build a sand castle. I use the little shovel to put damp sand into the bucket. I pack it down as tightly as I can, and then turn the bucket upside down. I lift it off and we are left with a perfect tower for our castle. James stands up, and giggling like it’s the funniest thing in the world, he turns around and lets his bum go Plop! right on the tower.

“Again!” he shrieks, laughing so hard he can hardly talk. “Again, again, again!”

So we do it again. And again, and again, and again. We are not making any progress with the sand castle, but we are having a lot of fun.

My husband is in the water, doing battle with the waves. His life has not afforded him much opportunity to swim in the ocean – real ocean with big waves that raise you up and move with you and crash over your head. He turns and waves; I wave back and laugh as a wave hits him side-on, knocking him down.

I see my mom and brother in the distance, returning from a walk along the beach. They meander slowly to me, taking their time, and sit down beside me, James and George, who has finally tired of his roll-down-the-slope game. My husband comes out of the water and joins us. We discuss dinner plans, wonder whether we need to stop on the way back to the house for wine, and bury the kids up to their waists in sand, much to their amusement.

We are together. We are happy. We are family.

Later, as I am riding the waves, I think that there is only one thing stopping this day from being complete, and that is the absence of my dad. But then, as the ocean swirls around me – the same ocean in which Dad’s ashes were scattered thousands of miles away – I look around me, at the sunshine and the white beach where the people I love most are clustered around a smushed-up sandcastle.

As the laughter of my children floats through the air and reaches me, I think that Dad is probably with us after all.

(Photo credit: Kirsten Doyle)

My Favourite Things

13 Apr

I am participating in the Health Activist Writers Month Challenge, in which I publish a post every day for the month of April, based on health-related prompts.

April 13 – 10 things I couldn’t live without: Write a list of the ten things you need (or love) the most.

When people ask me what one item I would grab if my house was on fire, I never know what to say. I mean, who can pick just one? I’m a woman, for Pete’s sake. Women need stuff, just like they need chocolate. It’s a scientific fact.

So in my hypothetical fire, I’m allowed to grab ten things. How I will carry them from a burning building while I’m simultaneously ferrying my kids to safety is not a cause for concern. When my hypothetical fire breaks out, all of the items are easily at hand along with a large duffel bag, I have superhuman strength and an extra pair of arms, and my kids are being fully cooperative.

The ten things I would save from the fire (apart from my family, who technically are not things), are as follows, in no particular order.

1. My Garmin training watch and accessories. I love this gadget. It combines my love of running with my love of technogeeky things. It is the coolest device ever. I can go for a run anywhere in the world, and when I am within range of my computer, it downloads a nifty little map of where I’ve been. The desktop app also tells me stuff about my pace and heart rate, and that appeals to my inner math nerd.

2. My smart phone. This thing does almost everything a computer can do, only on a smaller display. It functions as a camera, a Skype interface, an e-reader, an email client, a music player, and many other things. To be completely honest, I hardly ever use it as an actual phone.

3. My laptop computer. I would be lost without my computer. Seriously. I do everything on there. I don’t know how people like my grandmother coped without technology. Sure, that generation may have been more resourceful and better able to cope in a crisis, but they didn’t have Facebook or the ability to connect online with fellow autism parents when things were getting too overwhelming.

4. My notebook computer. I know, I know. I have a large number of technology devices for one human being. But I love my notebook. It goes everywhere with me. It’s a great little device for writing and web-browsing when I don’t feel like lugging my full-sized laptop around with me.

5. My coffee machine, along with ground coffee and filters. Because, well, obviously. My house just burned down in a fire. I’m stressed. I think I’m entitled to some coffee, and if it’s late at night the coffee shops might not be open.

6. A selection of my older son’s Mr. Potato Heads. George would be at a complete loss without his Potato Head family. These little characters have been with him since he was first diagnosed with autism. They were the means by which he started to tentatively explore language, and they were the tool that my mom used to teach him his colours. As a child with autism, George does not play in the way other kids do, but when he’s got his Mr. Potato Heads, he’s in heaven.

7. A selection of my younger son’s Disney Cars cars. When James first saw Lightning McQueen, it was love at first sight. Thomas the Train and his friends instantly got relegated to the toy box. Now it’s all about Lightning McQueen, Mater, Finn McMissile and all the rest of them. James would be heartbroken if his Cars cars got burned up in a fire.

8. My favourite shoes. Those who know me well know that I hate shoes. They are uncomfortable and don’t look good on my ugly, non-dainty feet. Shopping for shoes to go with my wedding dress was probably the most stressful part of my wedding planning. The only shoes I actually like are my running shoes. My mantra is: There’s no such thing as “too many running shoes”. I would grab my favourite pair and rescue them from the fire.

9. My purse. You never know what will be in my purse from one day to the next. Delving into my purse is like going on a scavenger hunt. It has all of the staples, of course. A little bit of cash, drivers’ license, maxed-out credit card, and the most essential item of all – a tube of lipstick.

10. A clean pair of knickers. From the time I was a little girl, I was taught to always have clean underwear with me. If I was in an accident and I was wearing dirty underwear then, you know, what would the ambulance men say? I would hope that the ambulance men would have better things to do than inspect the state of my knickers, but the lesson stuck.  Besides, if my house has just burned down, I don’t want to be wasting time worrying about the state of my underwear.

What are your favourite things? Share in the comments!

(Photo credit: Kirsten Doyle)

A Day In The Life

11 Apr

I am participating in the Health Activist Writers Month Challenge, in which I publish a post every day for the month of April, based on health-related prompts.

April 11 – Theme song: Imagine your health focus or blog is getting its own theme song. What would the lyrics be? What type of music would it be played to?

I confess that I had no idea what to do with this prompt. My writing skills do not extend to the lyrics of songs. That is my husband’s arena. Therefore, for today, I decided to use one of the bonus prompts:

Daily schedule: Write a list of your daily routine from the moment you wake up until the moment you go to bed. Be honest!

alarmclock

5:00  I wake up to the sound of the alarm on my phone. More often than not, I am on the futon in my living room with a small kid pressed up on either side of me (although it must be said that the small kids are getting less small by the day). Because I’m wedged in between my kids, I can’t simply grab my phone and throw it against the wall like I want to. It takes effort to extricate an arm. Often, as I’m reaching for the phone, I knock it off the table, and then I have to get out of bed – a supreme effort indeed – to pick it up and turn off the alarm.

5:15 I turn on my computer to check my email. I am dressed in my running clothes and I am waiting for the coffee to finish brewing. While I’m reading my emails my younger son wakes up. I get him a cup of milk and start preparing to leave, knowing that I will be delayed by my son’s constant chatter.

5:25  I kiss my older son goodbye. He is asleep, but he will know if I’ve left without kissing him goodbye. I field a gazillion questions from my younger son and eventually manage to escape. I sprint to the bus stop and make it with seconds to spare.

6:30  I arrive at work and head straight for the corporate gym in the bowels of the building. I dump my stuff in a locker, fill up my water bottle, and head out for a run. I’m still groggy and sleepy, but the first kilometre or so takes care of that.

8:00  I get to my desk, all showered and feeling good from my run. I drop my bag on my chair and go straight back out for coffee and a bite to eat. I bring it back to my desk and work until noon.

12:00 Lunch-time! I curse about having once again left my carefully prepared lunch in my fridge at home. I gather up my notebook computer, buy a random salad somewhere, and sit in the common room writing words.

12:30  Back to the grindstone.

2:45 Arrival of my mid-afternoon energy crash. I go out for coffee, and while I stand in the queue I stare at the display of donuts and cookies wondering if it would be OK for me to have one. By the time I get to the front of the line I’m so undecided that I don’t get anything except the coffee. Which is a good thing.

4:00  I pack up, log off, say my goodbyes to my co-workers and leave. I go to the subway station and position myself on the platform just where I think the train doors will end up. More chance of getting a seat that way.

5:30  I arrive home, lamenting the fact that once again, I did not get a seat on either the subway or the bus. I walk home from the bus stop, and stop to check the mailbox on the way home. I do so much stuff over the Internet these days that I hardly get any actual mail.

5:35  The husband and children, who get home before I do, have been standing at the living room window watching for my arrival. The husband opens the front door to release the kids, who run towards me in that joyous, unrestrained way that only children are capable of. I dump my bags, drop to my knees, and open my arms. My boys come hurtling into my arms and almost knock me backwards with the force of their love.  My cup overfloweth with happiness.

6:00 The kids were fed their dinner before I got home, and now the husband and I are cooking up something for ourselves. I enjoy the companionship as we chop vegetables together and chat about our days. I reflect on how fortunate I am to have a husband who supports me in my writing and my running, who accepts me for all of my weird little quirks, and who is the best dad ever.

7:00  Dinner has been cooked and eaten. I clean up the kitchen but don’t start the dishwasher – not yet. My older son, the one with autism, has a lot of angst where the dishwasher is concerned. I have only just gotten to the point where I can unpack and reload it without him completely melting down. Actually running it would be asking for trouble. Best to wait until he is asleep.

7:30  Bathtime for the kids. George goes in first, because he really doesn’t like being in a tubful of water. I soap him down and then, amid panicky cries of protest, I wash his hair. Like many autistics, he has a big problem with having his hair washed. James dives for cover, only emerging when George is safely out of the tub and in his pyjamas. James’ bath-time is a splash-fest. I have to keep a towel handy for myself, and I’m not even in the water.

8:30  The kids go to bed. George has done his homework (and got it right) in about three seconds flat. Bedtime milk has been consumed, stories have been read, hugs and kisses have been administered. I wait until George is asleep and then turn on the dishwasher. I make lunches for the following day and ensure that everyone has clean clothes to wear. I sit down at my computer and do whatever admin needs to be done.

9:30  My day’s work is done and now it’s time to reward myself. I pour a glass of wine, send my daily email to my mom, and waste time on Facebook. I complete and schedule any unfinished blog posts and start one or two new ones. Sometimes I abandon Facebook in favour of a nice soak in the tub. There’s something very decadent about sitting in a bubble bath with a book and a glass of wine.

10:00 I have a cup of tea with the husband and sigh dramatically as he channel-surfs. Why do men do this? Just as I’m getting into whatever happens to be on the channel gets changed.

10:30  I suddenly remember some crucial email or piece of admin that absolutely cannot wait until the following day. I turn on my laptop again to take care of it.

11:00 I fall into bed in a state of exhaustion, and fall into a fitful sleep that will, at least once, be interrupted by one of the kids needing something. Sometimes, I wake up to find one of them beside me. And I’m completely fine with that.

(Photo credit: http://www.flickr.com/photos/szift/3196084839. This photo has a creative commons attribution license.)

Time In A Bubble

1 Apr

I am participating in the Health Activist Writers Month Challenge, in which I publish a post every day for the month of April, based on health-related prompts.

April 1 – Health Time Capsule: Pretend you’re making a time capsule of you and your health focus that won’t be opened until 2112. What’s in it? What would people think of it when they found it?

timecapsule

Sometimes, usually when I’m reminiscing about one of my grandparents, I wonder what the world was like a hundred years ago. In 1912, my maternal grandmother was nine years old. Cars were just starting to change the way people lived, and people were starting to realize that planes might be more than just a passing fad.

In 1912, the Republic of China was formed and the Titanic sank. Gene Kelly and Pope John Paul I were born, and the members of the Scott expedition to the South Pole died.

One hundred years ago, telephone communications happened over a party line and computers had not even been dreamed up. There was no such thing as a TV dinner. Indeed, there was no such thing as a TV.

It is very clear that the world was a completely different place back then. If you were to take my nine-year-old grandmother from that time and plunk her down in the middle of 2012, she wouldn’t have a clue what to do.

Now I cast my mind to the future, to the year 2112. What thoughts will the people then have about the way the world is today? What would I want them to think? What would I, the 42-year-old me who lives in 2012, want them to know about me and my life?

Maybe I should put together a time capsule, something that some random stranger can dig up a hundred years from now to get a glimpse into my life and the things that are important to me.

There would be photos, of course, a visual record of me and my family. Maybe a flash drive of family videos that the finder could watch – assuming, of course, that flash drive technology isn’t totally redundant by then.

I would include a pair of running shoes, and maybe one of my half-marathon finisher’s medals. I would print out a copy of my training plan, so whoever found the time capsule would know that I took my running seriously and tried to be healthy about it. They would know that I cared enough about my feet to use orthotics, that I ramped up my training in a way to avoid injury, and that running was my biggest stress-relieving tool.

There would, of course, be a lot of stuff about autism. A copy of George’s developmental assessment report and the autism awareness magnet that’s on my car. I would put in a copy of the very first “real” picture that George drew depicting a recognizable scene from a TV show. I would have to include one of George’s Mr. Potato Heads, along with a description of how this little character helped George’s development in so many ways. And what about a program from the biannual autism symposium? I could include one of my fundraising appeal letters for my autism runs.

Out of respect for my younger son, I would include a book about raising a child who is the sibling of a child with autism. I would throw in some of James’ artwork depicting him and George, and a leaflet about the autism centre’s sibling support program. I would want whoever found this to know that George’s autism didn’t only affect George, that we also had to make special consideration for his little brother.

And because James is an individual in his own right, I would include some stuff that’s just about him. A Lightning McQueen car. His soccer shoes. One of the T-shirts my mom has sent him from South Africa, that he always loves wearing.

Mental health is a big issue in my life. I would include some of the antidepressants I took a few years ago before the side effects scared me into stopping. I would print off some stats and information about post-partum depression – something that I suffered terribly from and that I still don’t think there’s enough awareness of. And maybe, just for fun, I would include one of my therapists’ bills. Whoever finds it can then gasp in astonishment and say, “Wow, they only paid that for therapy in 2012?”

Family is an important element in my life as well. My family, by their mere presence, enhance my physical and mental health. My husband’s support of my endeavours has an unquestionable affect on my stress levels and sense of wellbeing. So I would have to include a copy of my marriage certificate.

This time capsule is starting to get kind of full, and I haven’t even touched on some people in my life who would have to be represented, like my mom and my brother, and my best friend Jenny, and some other folks who form the fabric of my life.

I’m off to find a bigger box.

(Photo credit: http://www.flickr.com/photos/carbonnyc/2563369930/. This picture has a creative commons attribution license.)