Wednesday, September 28, 2011


What's normal?  I think I'm doing just fine in regards to my 'grief work', but sometimes I wonder if people are making judgements on the subject.  I just read a fantastic blog post by my friend Karen.  Please, please go read it.  You can click on the link for Rainbows and Earthquakes to get to her site and read the post on Internal Assessment.  I could copy and paste the entry here and call it my own words, but that would not be the right way to do things.  So, I'll let you read it and you can know that I agree with her.

On a funny note...check out Mira's 'morning look'...

Saturday, September 24, 2011

Happy Birthday Mira!

One year ago today, we welcomed Mira into this world with joy and a little trepidation (not knowing what would come).  Seven days later, we recieved the message on our voicemail stating that the genetic testing was negative for Adenylosuccinase Lyase Deficiency.  I will never forget the awe filled joy and wonder that encompassed my every waking moment as I began to dream again.  I held her and saw my baby, who I already loved but this time I could see a future.  I could see future smiles and words, even walking and running.  I cried when I realized that I could anticipate her little arms reaching for me with a hug.  I cried more when I thought of Brodie helping her play catch and of Alex, hearing the word 'Daddy' from his little girl.

It felt like an awakening.  I had carefully put those thoughts, dreams and expectations to rest with Ashley and again with Hope.  But after Hope came our Mira...yes, our Miracle.  And with Mira, I felt the familiar thoughts and dreams that come with a new baby, but this time I could let those thoughts flow, open that gift and anticipate future milestones.

As I sit here today, feeling emotionally spent and a little exhausted, I am so glad that we were able to have a little party to celebrate.  Mira, you are one year old today.  We love you!

Tuesday, September 20, 2011

Remember when...

I've spent the last week trying to post the slideshow from Hope's funeral, but it isn't working.  In the meantime, I've been having a lot of memories float by on my computer screen as the screensaver scrolls through my computer photos.  Remember when Hope was smaller and we were trying to encourage her to use the switch toy (Feb, 2009)?  The big yellow flat thing, is a switch, to turn on the music.  If she pushed on the yellow pad, the music would turn on, and if she pushed again, it would turn off.  It never really worked (in other words, she didn't care about it), but Brodie had fun with it.

Ashley tried the switch toy as well, but she didn't like how it vibrated when her hand held it down.  She would jump when her hand accidentally pushed the button, and then she would start posturing.  So, we didn't use it for her very much.

Remember when we had to wrap Hope as tight as possible to keep her arms still so that she wouldn't cry for hours?  She cried a lot between Nov08 and Mar09 (inconsolable sobs), but eventually we found that high doses of Gabapentin helped the irritability.

You can see Lauren (one of our respite workers) trying to console Hope in the pic below, and of course, Brodie jumped into the picture to say 'hi'.  This was in April of 2009.

I would say that we are doing fine here.  Although it is still very strange to try and get used to this.  I still pause in my day and feel like I'm missing someone, forgetting a task, or just realize that yes, this is the new normal.  We went for a walk as a family last night and I had a moment where I thought, "Oh no, we're not all here, who's missing", and then realized that yes, it's just the four of us now.

These moments happen, and I'm not finding them unbearable right now.  I'm glad that I can remember my girls and still share them with you a little.  Perhaps I'll find it harder as I go on, but right now I truly feel God's powerful hand supporting me each day.  And I give thanks...

Wednesday, September 14, 2011


Time seems to have slowed down.  I feel like the funeral was just yesterday.  Really, it feels like I've barely moved past that day, and yet I know better.  I feel like I'm moving in slow motion.  The day stretches out like never before.  I get up, take care of breakfast and kids, get Brodie to school and play with Mira.  I put her to bed and feel exhausted, thinking to myself, "it must be 1030 already", but it's only 9am.  How is that possible?  Every day feels incredibly long, still good, but long.  It is the strangest feeling. 

I'm starting to think that I've running a marathon for years, trying to keep up and now it's the cool down period.  I actually had energy to empty the dishwasher at 8pm and then decided to make lunches for the next day.  Wierd.  Normally I would have been collapsing onto the couch by 8pm, after frantically trying to get all the kids settled before my energy would run out.

I've been able to take care of little projects each day when Mira naps, and it's a good feeling.  I often find myself surprised when I realize I am enjoying a simple task like sweeping the floor.  Maybe it's the thankfullness thing that I'm trying out.  Thanking God is a good 'mind task'.  But maybe I'm still feeling the relief that comes after the storm.  I definitely miss Hope and Ashley, and I have my crying moments each day, but I also feel relief.  The workload is hard to explain, and I could make it look easier when visitors came because I would do so much before guests came and usually have to cut out a lot that I would normally do for the girls.  Even with the respite help, I struggled to keep up.  It's not a bad thing to feel relief and I know that it is a normal reaction, so I'll just go with it.

So, now I have time and I'm going to be selfish.  I'm staying home and letting it sink in.  I know you'll understand that we don't want visitors yet.

Thursday, September 8, 2011

Funeral Message

I know some of you will agree with me, that Father Phil's message at Hope's funeral was perfect.  I would really like to remember more of it.  So, I'm going to summarize what I found meaningful and if any of you would share what you remember, then we might be able to get an accurate summary of his message.

The scripture reading was taken from Matthew 18

"At that time the disciples came to Jesus and asked, "Who is the greatest in the kingdom of heaven?"  He called a child, whom he put among them, and said, "Truly I tell you, unless you change and become like children, you will never enter the kingdom of heaven.  Whoever becomes humble like this child is the greatest in the kingdom of heaven.  Whoever welcomes one such child in my name welcomes me."

"Take care that you do not despise one of these little ones;  for, I tell you, in heaven their angels continually see the face of my Father in heaven.  What do you think?  If a shepherd has a hundred sheep, and one of them has gone astray, does he not leave the ninety-nine on the mountains and go in search of the one that went astray:  And if her finds it, truly I tell you, he rejoices over it more than over the ninety-nine that never went astray.  So it is not the will of your Father in heaven that one of these little ones should be lost."

I feel kind of funny trying to summarize a sermon, but here it goes.  Father Phil emphasized our need to be dependent on God.  When Jesus told his disciples to 'be humble like this child', we need to remember that children in that time were marginalized in society.  Children were often considered a burden that had to be fed and taken care of, a member of society that contributed nothing until they were older.  Small children were completely dependent on others for survival and therefore, held little value. 

How hard is it, for us to be completely dependent?  It is almost impossible.   We think we can take care of ourselves and we generally do a good job of it.  In fact, we feel rather proud of our accomplishments.  Jesus is telling the disciples, 'be humble', not proud...'like this child', completely dependent.  How many saints in the past have strived to grow closer to God?  We know how much of a struggle it is to change our value system and find value in our dependence (ie. trust in God), instead of value in our accomplishments.

And then, there is Hope (and Ashley), our child who was dependent in the extreme.  In our society today, one could say she did not contribute, she never gave anything, she only took and some might say she was a burden.  I know that some might say, and probably have said, that it is better for her to die.  Some people may feel relief that she has died, because the 'burden' has lifted.  But in the eyes of Jesus, she was/is a saint.  She was completely dependent on us, physically, and on God, spiritually.  She did nothing to earn heaven, and is now found perfect in the presence of God.  She has 'accomplished' more than most of us, ever will, in the eyes of God.

Now for my own words (although I'm sure my own words came through in the above summary).  I've spent six years, trying to help people see that my 'special' girls have value; that the work involved does not make them a burden; that it is not better for them to die; and that we can all love them just as they are.  Father Phil's homily at Hope's funeral, spoke the message on my heart, and I am grateful.

"be humble like this child"

Sunday, September 4, 2011

Simple things

I'm finding myself grateful for simple things.  A walk outside; the sound of the wind in the trees; the giggles that come out of Brodie and Mira as they play.  There are many soothing sounds here, in the midst of the frequent rememberings.  I get it, that I have to walk through these memories.  I understand that it's a hard time.  I just didn't expect the 'bombardment'.  Tiny little moments that drift through my awareness as I move about the house, constantly reminding me that my 'special' girls are not here anymore.  After the first couple hundred of these moments, you start feeling a little fragile, and maybe a little crazy.  And then I take a moment to give thanks.  Yep, I can find just as many 'thankfullness' items, and I might as well balance the sad with the praise. 

A wonderful friend/cousin gave me a book after Hope's funeral, and it is about giving thanks.  It is the most meaningful, thoughtful and well-timed gift I have ever recieved.  I am reading it slowly.  I might share some here, another time.  For now, I will continue what I have to do and hopefully, remember to give thanks as I go.

This morning, I was struck by the incredible blessing of big blue eyes staring at me.  Staring at me with intent and focus, ready to follow my movement, just waiting...