Big News

Last week I “vaguebooked” that big things were falling into place but I couldn’t announce them yet.  As of today, everything is official and I couldn’t be more excited to tell you all my two huge news items:

Firstly, Joel, Ayce, and I are now the proud owners of a mortgage!  We bought a house in the Big City in order to be closer to Joel’s work and Ayce’s specialists.  

It was a tough decision for me seeing as how we only made the big move to this small town a year and a half ago.  We moved for my career; I had gotten a job in my professional area, and I was excited to break into the new community with force.  Unfortunately, some complicating factors hindered my ability to really participate.  Finding out I was pregnant with Ayce was a huge surprise!  I worked as best as I could during that time, but in addition to pregnancy induced hypertension, I also developed debilitating anxiety and depression. It was all I could do to get to work, counselling, and home at that point. I was hospitalized twice and put on bedrest twice.  Eventually the right dosage of the right medication was found, and since then I have been much, much better, although I still occasionally feel emotionally fragile.  

The plan had been for me to take six months off and then return to work with Ayce in the care of a lovely dayhome provider I found before he was born.  Obviously with Ayce’s current challenges that plan had to change again.  Ayce continues to develop by leaps and bounds, but his atypical development means that he requires very specialized care.  He cannot sit on his own, he needs interventions throughout the day to help with positioning, stretching, seeing, reaching, feeding, and interacting with people, objects, and animals.  He is not at the same developmental level as most 10 month old infants.

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Luckily, our provincial government makes provisions for children with special needs to receive extra funding to cover the staff and equipment required in their care.  Unluckily, these provisions only apply when a child is at a licensed daycare, of which there is only one in our small town, and it is full to the brim.  Furthermore, the social worker we were assigned has not granted us any funding for extra care as she believes that 10 month old babies are at home with mom anyways, and since the program only provides for services over and above the normal, we do not yet qualify.

Sigh.

Even with all of this, though, I could have worked out some way to go back to work.  Maybe only working part-time, evenings and weekends.  My coworkers have been incredibly supportive of my experiences so far, and I have no doubt that they would work hard to accommodate me.  However, Joel is now our main breadwinner, and his work is a 1.5-2 hour commute from our little town.  Also, Ayce and I make weekly trips into the city for his various specialist appointments, and this is taking a toll on our one family car (a 2001 Chevy Malibu) as well as on Mama and Papa’s sanity (a normal weekday starts at 4:30 AM for Papa).  So, to the city it is.

Our second news item is arguably even bigger than the house!  Ayce is going to be a big brother!  Yes, we are expecting our second child (nicknamed a unisex “Billy the Kid” for now after his/her middle name) right around Christmas. We were absolutely delighted to discover that Billy was coming!  With Ayce, we were very much convinced that children were not in God’s plan for us as he came along after 4 years of “not not trying”.  He has been nothing but a blessing to us.  Both Joel and I have taken to parenthood like ducks to water thanks to the amazing help of our little guy and we couldn’t be happier to welcome a second child into our little family. Ayce is going to be a great big brother: He is always gentle with children and animals, he has a calm and relaxed disposition, and he is very sociable.

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All in all, it has been a very eventful few months, and we are looking forward to the next steps!

Five Minute Friday: Belong

 When I was just about to start high school my family moved to a somewhat rural part of the city.  We lived in an old wood house with a woodburning stove.  My mom and her husband worked really hard to “blend” our families, but there would always be a struggle for us all to feel in-place.  It was particularly difficult for us kids.  My brother and I were living in an unfamiliar home and we both changed schools that year.  My stepsisters had to deal with us kids usurping their territory so every time they came to visit their dad, they saw that what had been their childhood home was changing to become more our territory than theirs.  I think this experience has influenced my sense of belonging even until today.

This is a post for Five-Minute Friday at Lisa Jo Baker’s website:  http://lisajobaker.com/five-minute-friday/

 
Five Minute Friday

Due for a trim.

It’s a good thing Ayce is so cute because if he wasn’t I might mind more that he kept me up all night crying in my arms and clawing at me with his razor sharp talons.

Baby hands

Don’t let the dimpled knuckles fool you! Those things are deadly!

Ayce's male model look

Very GQ

Ayce staring into the middle distance

Baby bright eyes

Guy Smiley

Guy Smiley

Seriously, I JUST trimmed these things!

Seriously, I JUST trimmed these things!

Routine

I have never been really good at following my own routines. Therefore, I have always been drawn to organizations that are prescriptive; I was an air cadet, I played in school bands, I did nursing in college, and I always did well at those things. When I am presented with deadlines and clear expectations, I am an absolute rockstar.
This new phase of my life presents some major challenges as far as developing my routine goes. I am a stay-at-home-mom and housewife now. Anything that I manage to do in a day is because I set that goal for myself, and to be honest, I’m not that great at it. There’s no evaluation and feedback phase. Without anyone to please, what I do is just for me, and I still have a hard time accepting that *I’m* worth it.
Here are the things I like to have done in a day:
-Dinner made
-A load of laundry done
-Living room picked up
-Garbage taken out
-Dishes done
-Floor swept
That doesn’t seem too hard, does it?

Five Minute Friday: In Between

Wow!  What a good prompt for me today.  I often get the feeling of being “in between” things.  Like I’m not quite finished getting to where I need to be.  This usually manifests itself in me justifying my messy house “I’ll get it done when I have the time on Friday” or my lack of a set Prayer Rule– “I’m still getting over depression, God understands”, countless other small tasks that just don’t make my list.  I feel like at some uncertain point in the future I will suddenly stand up and become a “responsible adult” but for right now, I’m just getting used to adulthood, motherhood, stay-at-home-hood, special-needs-parent-hood, etc. etc.

It is true that I have been recovering from a severe depressive episode and I was literally incapable of doing some of these things for a long time.  I need to go easy on myself, but the truth is, we are in Eternity right now!  I am right in the middle of it, not in between one important time and another.  I should really take this reminder and focus on the reasons the tasks I put off are important to me— they help sustain me in my good place of mental health.  I love having a clean house.  I feel great when I take the time to reflect on God.  I enjoy getting dressed in the morning and going out for coffee. So why am I stuck “in-between”?

This is a post for Five-Minute Friday at Lisa Jo Baker’s website:  http://lisajobaker.com/five-minute-friday/

 
Five Minute Friday

Seeing Red

We sat in the cramped waiting room of the Opthamalogist’s office for nearly 2 hours before the assistant finally called Ayce’s name.  She led us into a large examination area and shone a light into Ayce’s eyes, then asked me a few questions:

“Does he have any favorite toys?” No

“Have you noticed him gazing at faces?” No

She then shook a toy in front of his face and said “The structure of his eyes looks OK.  The doctor might want to get some pictures.  I’ll call him.”  She led us back to the waiting room and said the doctor would see us shortly.

40 minutes later we were led to yet another examination room.  We sat and waited 15 minutes for the doctor to appear.  He performed the same tests as the assistant and then said “The structure of his eyes is fine, but he can only see light.”

It was all I could do not to scream “Bullshit!  I know he can see.  He tracks Joel and me around the room.  He can follow a red toy as I dangle it in front of him.”  But the doctor left the room before I could say any of this.

Ayce sitting in his tomato chair.

Covered in red

Luckily, the Early Intervention Program nurse agreed with me.  She noticed him seeing things too.  I got a referral to the CNIB, and just over a month later we went in for Ayce’s functional assessment.

Wow!  What a different environment.  We were led into a room that was a paradise of brightly coloured toys.  “You can borrow any of these whenever you like” said Nichole, our Occupational Therapist.  I noticed a sign advertising a weekly playgroup.  We settled down in a quiet corner of the room and Ayce and Nichole started the hard work.  She examined his eyes.  She presented him with a variety of sparkly coloured garlands, flashing them with a small light so that they were more enticing to look at.  She patiently waited for him to notice the garland and slowly moved it so she could assess his field of vision.

Here’s what she concluded:  Ayce has what is called “Cortical Visual Impairment”.  That means his eyes see things just fine, but the processing centre of his brain doesn’t always know how to interpret the messages they send him.  While he is able to see all of the primary colours, his favorites are red and blue.  Yellow is difficult for him to see.  He can see well in all fields of vision but prefers his Left side.

Nichole says that the more he practices seeing things, the stronger the neural pathways to that area of the brain get.  So right now we have a whole bunch of toys in the red spectrum to work on strengthening those pathways.

Ayce curiously staring at a red toy.

Looking….

Since we started doing this, Ayce is now reaching out to touch the toys placed near him.  Especially when he is seated or laying on his side.

Ayce looking at a wind sock

Big Reach!

It is nice to have my knowledge and beliefs about my son validated!  It just goes to show you what a different experience you can have in different medical settings.  What I learned through this experience is to keep pushing and trust my instincts.  Advocacy is a HUGE part of special needs parenting, and it can be hard not to get worn down.

Five Minute Fridays.

In order to maintain momentum on this blog I’m taking a page from Kara of “Free as Trees” who seems to have a posting schedule.  Every Friday I will take five minutes to unload my mind onto the blog.

This week has been a strange one for me.  The weather in Alberta is decidedly “un-summery” with tornado warnings and heavy thunderstorms nearly every day.  It is a little bit depressing, especially for those who suffer from SAD… but not for me!  The gorgeous green of the prairie against the blue-black cloudy skies makes me feel happy to be here! As some of you know, I am not a prairie girl.  I am decidedly not a prairie girl.  I grew up in a land of big trees, deep valleys, salt air, and lots of rain.  Yesterday’s rainstorm felt just a tiny bit like home.  Ayce and I walked all over town in the downpour.

It feels wrong not to have mountains holding the earth in on the sides, and the lack of water here is disturbing.  It took Joel and me a long time to get used to being out here.  Now though, with the arrival of Ayce, we are working on putting down roots.

We’re currently house-shopping for a long-term home near all the amenities that Ayce needs.  This means coming to terms with the fact that we’re not going to be moving back to our Island any time soon.  This also means that the huge physical distance between us and our families will remain.  This is a hard transition.  It is hard on everyone, really.  Ayce is the first grandchild for both sets of parents (my stepfather has grandchildren but Ayce is my mother’s first biological grandchild).  We do a lot of Skyping and phone calling, but it is not the same.  I guess it’s part of “growing up”; we’re creating our own family now, and making those family connections with nearby friends.

In memory of Betty Anne Gagnon

The following is not a happy post. It is my reaction to hearing a very disturbing story on the CBC show “The Current” this morning.

Here is the story: http://www.cbc.ca/thecurrent/episode/2013/06/18/what-happened-to-betty-anne-gagnon/

and here is a website with further information: http://www.justiceforbettyannegagnon.com/

I have written the following letter which I will send to the relevant government officials.  Please feel free to copy and adapt as you see fit.

This morning I listened to a CBC documentary describing the case of Betty Anne Gagnon, a developmentally challenged woman who died tragically in 2009. I was appalled by the actions of Betty Anne Gagnon’s caregivers, and further appalled by the lack of follow-up from the relevant agencies including the Public Guardian, Seniors’ Services, PDD, and the RCMP, who heard the reports of Betty Anne’s niece and received requests for services from the Scrivens, but did not take action.

I am concerned that there are so few supports in this province for vulnerable members of society and for their caregivers.  I am especially concerned that with the recent changes to PDD funding, more people will end up falling through the cracks and being victimized. As a mother of a child with developmental disabilities I have little confidence that my son’s care will be monitored appropriately when I am no longer able to care for him if our government continues to disregard the needs of the disabled and their caregivers.

I believe that it is the responsibility of the government, representing all Albertans, to create policies which ensure that people with disabilities are treated with care and respect, and that their human rights and dignity are maintained. I would like to see our province lead the country in developing an inter-agency strategy for reporting and investigating allegations of abuse against people in care so that what happened to Betty Anne never happens again.  I would also like to see appropriate sentencing for those convicted of “Failure to Provide the Necessaries of Life“, including mandatory jail time.

I hope that you will take a leadership role in ensuring the safety and dignity of the many people in our province who cannot advocate for themselves.

Sincerely,

Callie Joyce Perry

Me Time

I have a lovely friend who is a tea-lover, great pancake maker, and a wonderful mother, who often asks me “How’s it going?”.  Now, whenever I am asked that I launch into my usual monologue: Weather’s nice, got summer tires on the car, made a great crockpot chili for supper, Ayce had a seizure last week but is up 200 grams since last month, am almost caught up on laundry, husband’s commute is going easier with the early morning sun, etc. etc.  Then this friend asks me, “And what are you doing for yourself?”. Huh.  Good question.

I used to read a lot.  Now, with Ayce in my arms 50% of my waking hours and his stimulation and therapy taking up another 20-25%, I watch a lot of TV.  I nap. I try to get a bath in every day (Joel is super-helpful in this regard).   We just started Geocaching, which is a really fun way to get out and exercise, but finding time for ME is tough, tough, tough!

This past weekend I picked up a knitting project for the first time in ages.  If you don’t know me, you won’t know how strange it is for me to NOT be knitting, but I have only done two projects since Ayce was born.  I started a pair of socks (toe-up) and knit about three inches.  Even looking at it today makes me feel a sort of rush of accomplishment.

A picture of my sock so far.

Yes, this book is as dense as the title suggests.

In my Christian walk I have often looked at others and been inspired and awed by their selflessness– their willingness to sacrifice of themselves for others.  Right now I am living that sacrifice for Ayce and Joel, and I get a lot of praise for it, but I am seeing more and more the need to remove myself from my work and just be the Old Callie. To open my heart in prayer and meditation the way I do when I knit is a joy that I hadn’t felt in an embarassingly long time. I am grateful to my friend for the reminder.

What are you doing for yourself?

On Not Breastfeeding

My early weeks of motherhood were incredibly stressful. Although I gave birth naturally, Ayce did not eat orally for a week and even then was unable to suck well. As a result, my milk never “came in” and in spite of strenuous effort on my part (pumping every 3 hours for 3 months) I have not breastfed my son.
Giving up was difficult. Many of my friends and family are very pro-breastfeeding and I have always expected that I would be able to do it. There are also a great many women who choose not to breastfeed for whatever reason. That’s OK too! There are many great articles and posts about not breastfeeding. I will not elaborate on them,. However, what I will present is a “Top Ten” list of responses to those people rude enough to ask you why you are not nursing your child.
So, here it is…

Top Ten Best Responses to the Question “Why aren’t you nursing him?”

10. He has difficulty feeding due to a traumatic birth and developmental delays.
9. We are able to gauge how much he eats when we use a bottle.
8. His father wanted to be able to feed him, too.
7. He needs more nutrition than my milk can give him.
6. I was physically unable to breastfeed.
5. These bottles are just too cute not to use!
4. I don’t feel like it.
3. Did you breastfeed your kids? (especially good to ask a man)
2. Why are you so interested in my breasts?

689px-Dave_Letterman (1)

David Letterman. Image courtesy of Wikipedia.

1. And, the number one answer to the question “Why aren’t you nursing him?” is….

None of your business!