How are you little girl?

Dear Layla,

Happy Sunday darling, you're not home today.  You are not at your dad's either.  Two days ago, you started at - I don't know what to call it - a care centre.  Your sisters call it camp, but it's not.

"why aren't you normal, why are you like this so I have to take you there.... I don't have to but I did, and I am not ready......"

I've been dreading putting you into an outside care place since you were about 9 months old - you know, that time when I snapped out of my denial - that you were going to be my special needs baby.

"so much is coming up for me.. why am I not married - ugh.  The thoughts are crazy, I wish you were home, all of your work makes my brain not go squirrel-y and it is right now, I'm going nuts"

You are  only 11 and you are probably wondering where the hell I went, why have I abandoned you.

"I'm crying , I've been crying since Friday, and I don't want this to be your life, I don't want to have to give up on any of my babies, and I'm giving up on you"

I hope you are enjoying and relaxing and getting doted on  (by a bunch of effing strangers that I don't even know".   You're in a home.  It's weird.

You've shaped my life over these past 11 years and I am not sure where to put this particular leg of our journey.

We are going to come and visit you tomorrow, Maya and Sabrina and I - maybe Julia.  I've taken the week off to give myself some time to work through this transition of you getting outsourced.  I know you are wondering where I am, SO AM I.  I don't like this feeling of having to put you in a care home.  UGH!

"make this stop, make yourself not be disabled, just make this go away"

It's Sunday, it's Father's Day.  I haven't stopped crying in two days, and I just wish someone would wrap me up a warm blanket and cradle me.  I'm jealous little dude, you got a team of caregivers to yourself - I just want a good human to grow old with (shoot me right now)

Believe me whoever is reading this, this is very hard for me.

Honey, we have so many amazing, loyal, generous and loving friends and family in our life - we are surrounded and supported but me your mum feels sad and very alone right now.

"Can someone just make me breakfast...."

That's it for now, baby girl, I'll see you tomorrow.  I hope you are showing the caregivers your sass, your fire and your charm.  Give it to them good - that you definitely don't need me for.  I love you and I miss you so much

"I can take care of you fully and completely, I'll carry you forever honeybunny, I'll carry you til I'm dead"

- Mummy xox (Sunday June 20th.2020)

Challenged Parenting

Doing Something. Towards Solutions. 

This time it was late in 2007 and Sabrina was a little over two years and baby Maya was 4 years old.  Michael and I were going through dark times.  He was in a bad place and I was left to hold the fort, but I was in the dark myself.  Unsure of what was happening to my partner.  But I knew this was big and I um, started having what I know now to be panic attacks.  There were times that I was curled into a ball in a corner of a room while the girls played and I would pick a friend of Michael to call.  "What is going on....?"

The answers ranged but were similar in that they listened and told me that I would be alright. No answers but lots of comfort.

2017 and no answers.  But I don't ask questions that no longer matter.

I was not comforted, I was afraid of how I was going to function through this round of tough times.

I found a listing for a parent group in a local newspaper and it sounded interesting.  I called, went through an intake process over the phone and I was invited to meet with this group when it met one night a week.  And there was babysitting so to bring the children.

There was a couch and two facilitators and several parents that greeted me.  After introductions, parents one by one shared.  My turn, I just cried...  box of kleenex was handed to me and I let it all out.  

The next few weeks I cried less and between blowing my sobbing nose in tissues, I started to share and I put everything that was happening on the table.  We would together commisserate, advise, relate to one another, ask question, discuss, refer to authors and books, make notes all while drinking hot cups of tea on big comfy couches. 

A respectful group in a safe place.  I focussed on parenting and on the needs of my children - one step at a time.  Here I was able to blow away the clouds of life and hunker down on parenting skills and building family in times of uncertainty and in times of my own anxiety elevating.

No one thing can fix everything.  But because I had focus and I CHOSE to focus this period on my children's best I was able to find some footing and the parent group helped direct all of this.

I'm Alright

As of 2018, I am a divorced woman. 

A good number of people have told me over my years of being separated that due to my "baggage", I probably won't marry again.  

These many people telling me this are my family members.  Opinions full of support and wisdom and oh such hope.  My family members refer to my life with my three daughters as "baggage".  You wondering where I'm headed with this?

Here.

Maya, Sabrina and Layla don't like being referred to as baggage. They think it's rude and mean.  They take offense to those words, as they should.

By the way, I tell my 3 baggages things.  I tell them to respect their elders.  But please do honour the feelings of whatever comes up for you behind that respect. I can't be responsible for other people's actions, but I can best guide my girls.

What I don't share is my family members telling me that no man will take me for more than a sex object, because of all that baggage.   

The people saying this are stupid.  

This talk is not supportive nor is it true.  You call my life baggage, I will correct you.  

I will marry again. And to that future man of mine, you will be the luckiest guy in this good world;  My kids say so.

Hugs n kisses (just not to the stupids)

Jen

Merry Christmas 2019

Good morning Layla,

Today is Sunday and it's breakfast time.  You are awake and cheerful.  You are 10 years old, wow.  You are so special, with that beautiful smile.

 "Why?"

Because,

That's how nature, God, science made you.  And your being a unique person means that we, your family, build our own story as we raise you, share our lives together.  

We feed you slowly.  Full of care and patience.  We learn to multi-task. Tidying up is our thing.

We carry your body and we learn how to use our bodies as your carriage.  Our legs, arms and backs become stronger.  

We get more organized, because in a flash,  you could seize or, you can decide to change your own diapers and wreak utter havoc with it.  Our home is streamlined for your care.  We love streamlined. 

In challenging times, we learn how to be patient and find tools to manage our own stress and helplessness.   It is hard for you, and we acknowledge that it is hard for us too.  We learn how to be there for each other, physically and emotionally.  

When you harm yourself, we become your human shields.  Offering you a firm grip.  Protecting you, and soothing you too.  It hurts us when you hurt yourself...

We become teachers, giving you lessons of being gentle to others, and repeating over and over to always be gentle.... gentle...gentle.  

We are learning to protect ourselves so that can protect you.  Maya puts her wrist brace on first before helping lift you and your chair.

We communicate more as a family to talk thru the hard times, laugh more because some of this is funny, and if we have, to we cry it out, so that our feelings are acknowledged and so we can reset.  We say sorry more and check in with our egos often.  We need each other to look after you, so we do.  Unapologetically.  

Layla, you have made our family closer.  Our home, built around your growing physical needs grows more and more beautiful and we love it.  We are becoming amazing designers of creating lovely spaces.  

I think we extend love better too.  We are learning about the implicit quiet nature of love and kindness towards others.  We know first hand the necessity of building a strong,  committed community around us and for us.  We need it, I need it... this is so tough.  We understand what commitment truly is. I am committed to you, sometimes I mess it up but I always recover. 

I am a better mother to all three of you because of you.  I can look after many many things because I know what true committed love is.  I do. 

That beauty that pople see when they look at Maya and Sabrina (and you), it's their inner compassion and empathy shining out because of the simple and oh so complicated act of you being born their sister.

We love our lives more and take for granted less and focus positively as we wheelchair you.  

You are our life guide.  

Thank you Layla for the gifts that are all you.

Merry Christmas my baby. 

The Best

Summer of 2014 and Layla was starting Kindergarten and I had much to do.

Teachers are on job action from back in June and carrying on into summer - it's August and by the end of the month I am to meet with her Teacher and Education Assistant to discuss gradual entry - to discuss this huge stage in her life and mine. 

I am nervous and ready.  But, school is closed, no teach to talk to and, well, looks like school isn't even going to start come September.    For Maya who is 11 / G 6 and Sabrina 9 G4, this was pretty nice.  No school until October!
Nothing happened, so my anxious wait for the start of school was milling in my head.

Nothing.  And then there was something that would change everything....

The principal - Ms Taylor phones me and asks if she could come over and meet with Layla - I mean she already was familiar with her when I picked up the girls after school, she often met and greeted kid sister in the hallways.   But this meeting was to talk about Kindergarten and the Layla Plan.  Coming to my home was unorthodox but given the picket lines, I wasn't going to cross - nor was the wheelchair!   She told me she was bringing Layla's potential EA.  Ok, I said.  What else would I do.

They came and met with me and Layla and we discussed.  In theory this all sounded good.  Little did I know that in a month and a half when school started, that Layla's entry into public school and the years following , would be hand in hand with an assistant who is even more special than Layla.

That fateful day in the Summer of 2014 Mrs. Cameron came into Layla's life  and I tell you .... she is the best thing ever.  And the world (or even only the 12 people reading this post) needs to know this.  I sing her praises as Layla's Assistant, her pal, her care provider, her guide.   My peace of mind.
And I sing her praises now, here in the post titled "The Best", because she is.  The best - not because she is leaving the job, or because anything has happened - but just because she is. 

Welcome to Holland

WELCOME TO HOLLAND

by
Emily Perl Kingsley

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.

c1987 by Emily Perl Kingsley. All rights reserved




.... these are not my words but they are neat, and resonate with me after having Layla.  My flight didn't just redirect, I totally went to another planet.  And I am still on it.  Its called Richmond, I'm kidding.

Running, Crying, Running, Crying, Running, Crying,

Literally, I am running and crying.

I run.  A lot.  A few years ago, 2013 to be exact, I ran 13 half marathons.  Yup.  I did it.  I have been running since 1996, 20 glorious years.  It started as a result of my having a pretty serious health crisis.  When I was younger I was anorexic.

Yes.  Some of you know this.  It sort of went unannounced.  At 22 I hit a weight low of 59 pounds. Leading up to that magic number on the scale, my legs muscles were depleting and I wasn't able to walk.  I couldn't walk.  I was at UBC at the time, and before hitting rock bottom, my mind wasn't functioning so I couldn't study at all, I wasn't able to physically get around and when I slept I would get bed sores because my bones were digging into my flesh.  I was seriously uncomfortable. Hungry, empty, tired.  Fragile.

When I started to turn around and eat some eggs (thanks Dad), Mum took me to the track nearby home and we would slowly walk together.  I remember a lot of things from those days.  I remember clearly the feelings in my legs and feet - it was grueling - when I told her, I will never take these legs for granted again.  I said that I am going to be strong again and healthy and I am going to run.  Which I never had any interest in as a kid, but I knew that with a new commitment to good health, I will give myself the gift of running.

Boy did I ever.  I fricken ran like crazy. It has been an awesome journey of wellness - one that is not about deprivation or control, but of strength.  When I run, I feel very connected to my free spirit.  Not to mention it is great sport for hyper people like myself.

Swimming was also special when my legs didn't work.  I had a donut type of floatation device that I wore around my hips in the local pool so I wouldn't sink.  Seriously, no amount of breath holding could keep me afloat at that weight.  And I would float and work on my lower body strength.
Funny thing is, I looked like a freak.  I looked scary to children.  None the less, off to the pool I would go.  Into the sauna at the end and there was a boy around my age and he and I got to talking. He asked if I would like to go see a friend's band with him.  I looked at him and meekly said, "I am not well.... as you can see"... with my bones sticking out from beneath the skin.  He said that he could see that and that he would like to take me.  A good boy indeed.

Dad wrote me a lovely affirmation when I was coming out of that crisis.  It went something like this...

"through the divine spirit of god, the power of the universe, the magic of mother nature, I am happy, peaceful  and calm.  The light over me shines wellness all around me as well as strengthening my resolves.  I am healthy, strong and well in Mind, Body, Heart and Soul."

I went through a dynamic physical, mental and spiritual change.  I pulled through that one.

Another key memory from a low point was looking down the flight of stairs that led to our basement and wanting to fall.  I wanted to let myself fall down the stairs and let my body hit the cement wall at the bottom and lose consciousness.  Being anorexic, regaining health, getting better - it was all so hard.  Everything was so hard.  How was I going to get out of this state that I am in?

And then I saw my kids.

I knew that there was life ahead of me as a mother and that must be realized.  No exaggeration.  At that moment, everything changed.

My body has come a long way and I am dam proud of it.  Things could have easily worked out poorly for me, but instead I am strong, flexible, limber and able bodied.  I practice and teach yoga.  I run.  I walked and rolled and gave birth to three children.  I got married, and said I do.  

Looking at my little girl village now, and ending that married phase of my life, I look to them to understand the journey from "I Do" to "I Did".

My daughters even before birth are my root cause and guiders.  They were my inner strength and my strong resolve.

I think it is cool how I got through that space in my time.  There is more to this story but that is for another blog post.

While running today a song came on that made me think of Layla and her different life.  How that very universe that I trusted to help me heal my legs when they were losing their momentum is the same universe that failed to give her legs that work at all.  How ironic.  It makes me cry.  I run, I cry. I run and I cry.

As I see it, my legs make up for her frailty.  How powerful is that?  As powerful as my Mind, my Body, my Heart and my Soul.