Monday, March 18, 2013

Pink Balloons

Today marks the 2 years since Ashley died.  Yesterday we remembered Ashley with her caregivers, Ashley J, Miranda and Lauren, who have become like family to us.  It felt so good to honor Ashley's memory.  We watched her video's and laughed at Brodie's two year old goofy ways, and finished it off by releasing eight pink balloons with our thoughts for Ashley.
 
Brodie asked to watch Ashley again, so I turned on the video camera, and this is what he and Mira are watching this morning...
 

This is Brodie at 2.5 years and Ashley around 5 months.  It's so interesting to think of me standing there taking pictures of my two kids cuddling on the couch together about eight years ago.
 
And today I'm standing here looking at my two kids cuddling on the couch again...

 
You can see Mira holding on to a pink balloon.  The one that she was supposed to release yesterday when we all let ours go.  But Mira let out a little yell of protest every time a balloon floated away.  We kept hearing, "oh no, oh no", but I didn't figure out what the problem was until I saw Mira clutching her ballon for dear life, and shaking her head, while she murmered, "no balloon, my balloon, no go". 
 
So here we are this morning, with our little Miracle holding on to Ashley's pink balloon as we watch
Ashley video's.  How beautiful is that. 
 
We have been so blessed.  I have been wanting to express this for a while now, but always fail to find the words.  I do have my sad days, but more often I am so awed at the blessing.  To have Ashley and Hope in our lives, to love them, to learn from them and to experience the highs and the lows...it is all a blessing.  Life is a gift, no matter what the circumstances.
 
 
 
 


Sunday, February 17, 2013

8th Birthday

Happy Birthday Ashley!  You would have been eight years old today.  We'll celebrate with family today and remember your beautiful smiles, and precious cuddle moments.

I remember when I took this video of you in August of 2009.  You would have been four years old at the time.  You were enjoying a good spell with smiles, and some calm times, and milder seizures.  You were sitting in the kitchen enjoying some music with me, and I noticed your smiles and sat down to smile with you.  Your smiles got bigger and I thought...oh, maybe I should catch a little video.  It wasn't anything huge, just a normal moment in the day.  But I am so glad I took the time to catch that moment.  Ashley, this was one of those moments when you blessed us with a peaceful spirit and a softness that calms the soul.


video
 


 
 
Happy Birthday Ashley!

Monday, February 11, 2013

Simple things

I love remembering the simple things.  Mira sat at the counter the other day, playing with Brodie's lego, completely unaware of how cute she looked wearing her green sunglasses.  She was sticking lego men in the nice cranberry bread I had made!


 
She reminded me of another time when we had the Ashley and Hope gathered at the table to participate in snack time.  This picture makes me smile too!


How is it, that I am so blessed...


Thursday, January 31, 2013

Giving is healing

Ashley and Hope taught me how to give.  I didn't always give with a willing spirit, and I wasn't always joyful but I can tell you what was beautiful.  The beautiful days were the ones when I accepted the work, put aside my own agenda, and gave myself over to loving.  The beautiful days happened when God gave me the grace to love Ashley and Hope without rushing to be done with the work involved with their care.  The beautiful days always involved giving, not getting.

I was reminded of this reality, when I listened to a speaker who shared her own journey of losing two children.  After the first funeral, she felt desperate to escape the debilitating feeling of pain, but was unsure of what to do.  When she read a suggestion that she seek out someone else who was in need and serve that person, she thought, 'ya, right'....but it worked.

I listened to her and a lightbulb went on for me.  I've experienced those days of sadness that were lightened by a choice to do something for someone else.  I've also experienced the sad days when I chose to have a nap, or a coffee break or read a book (distractions that have some value).  The interesting thing is that the distractions didn't serve me well.  They weren't bad, but they weren't fruitful either.  They were just distractions that gave me a 'break' from the sadness.  Giving, on the other hand, always led to a lighter feeling, sometimes even to joy.

I love that!  It makes so much sense to me, that I should use offer up my sadness to God, and serve him by blessing someone else.  I can count numerous memories when I have felt joy at giving.  I'm sure everyone can think of these moments in their lives.  Giving is part of healing.  We weren't meant to serve ourselves.

Thank you, Lord, for giving me the opportunity to serve, to love, and to give to these precious children. 






Tuesday, November 6, 2012

Thankful!!!

I am so thankful for little hands that tickle the piano keys, for a little voice that sings, for a little girl who is blissfully unaware of how amazed mommy is by everything she does!

video

Mira is two years old, and as you can see she blesses us with her singing often.

Thursday, October 25, 2012

School memories

Before Ashley, I rarely thought about school and how well a child with special needs would fit in or be included.   I remember the first time we discussed what the future would look like and a health care professional mentioned school.  At the time, Ashley was six months old and seizing more than 100 times a day.  I laughed at the idea of school, brushed the idea aside and tried to move the discussion to more pertinent issues.  I was firmly told that EVERY child goes to school.  Well, I have to admit that I wasn't too impressed by the implication that I had no say in the matter.

I had no plans to send Ashley to school, unless it was clear that it would be good for her.  She was looking better at four and half years old, and actually needing more stimulation.  I started thinking that school might be a good thing.  Our physiotherapist and occupational therapist encouraged us with stories of other special needs children who blossomed in the school system.  I could see that Ashley was positively stimulated by other kids and eventually we agreed that 'yes' school would be a good thing.  I had no idea what a blessing it would be.

I am sharing this because I know of a family who has a child with special needs, who was denied admission to a large christian school here in Winnipeg.  Their older son was already in attendance at the school.  Of course it is not a problem for a school to reject an applicant for a good reason.  It would be completely justified and understandable if the school stated that it did not have the resources or proper facility to provide for the special needs of a child.

What I don't understand is why the parents would be subjected to, what sounds like, a harsh and cruel attitude when discussing their daughter.  Why would a Principal say that it would not be good for the older son to have his sister in the same school?  Especially when the son was so excited to have his sister at school.  He had a picture of her in his locker, and was eager to share his experiences with her when he got home.  Why would a Principal go on to say that older students would not benefit from volunteering with the special needs child, and worse, that they have better places to spend there time?

I suppose I shouldn't be surprised that there are still people who see a child with special needs and only see the burden, the disability and the problems.  But I cried when I heard this because my greatest yearning was for others to see the value in my special girls.  My heart broke for the parents as I imagined what it would feel like to hear your child rejected because of their disability.  To be told, to your face that your child wasn't worthy or valued.  To be told that your child is a burden that no one would benefit learning from.

So, here I am to tell you of my experience with Ashley going to school.  Ashley was wonderfully recieved by the entire faculty and the students at Chancellor school.  We were pleasantly surprised at the positive attitude of every staff member that we worked with.  We really felt that Ashley's presence was valued and highly anticipated.  I did not expect such a high level of acceptance, and something else occurred that I didn't expect.  Ashley was loved.

It brings tears to my eyes as I remember the day that I realized Ashley had become part of her own little community, full of beautiful children and teachers who truly loved and accepted her.  It was the day we returned to Ashley's class to remember her life and we were joined by some students, mom's, and teachers.  They had a slideshow of pictures and as the photo's rolled by, my eyes were opened to Ashley's world at school.  Children reading to Ashley, holding her hand, and taking turns pushing her wheelchair.  Ashley in the arms of her EA during music time and circle time.  Ashley sharing her favorite book, 'The Little Engine Who Could', with the children gathered around paying close attention. 

Most striking were the multiple photos of one little girl, who was showed up often at Ashley's side.  Ashley had a best friend.  I didn't find this out until I met Taylor's mom at the remembrance.  Taylor's mom had heard a lot about Ashley, and what the girls played with and where they sat, but she did not know that Ashley was in a wheelchair until she saw the school photo of the kindergarten class.  Taylor had never mentioned Ashley's disabilities.  Taylor loved Ashley just the way she was.  That is the beauty of children.

That is the blessing of a having a child with special needs in the classroom.  Children are very accepting of differences, especially when their teachers model that acceptance.  Without even knowing it, children develop compassion and understanding for the differences in others and it becomes a non-issue.



 
Taylor still has 'Ashley's pink bear' that we gave her, and the photo of the two of them in her room.  I met Taylor and her mom at Brodie's hockey practice the other weekend and was pleasantly surprised that they remembered Ashley.  What a special gift.

Sunday, September 9, 2012

Memorial Stone


Larsen's did a wonderful job of Ashley and Hope's memorial stone.  This is the photo they sent us before it was installed at St. Vital Cemetary.  Next year, I look forward to planting some pink and purple flowers under the stone.  Right now I still have the yellow sunflowers marking the spot, along with this stone.  So, it's easy to find if anyone finds themselves wishing to visit.