Heartsleeves

We received this in the mail a few days ago! They're called Heartsleeves, a joint creation, by a friend and her friend.  We plan to wear these armbands in the early days after Rachel is gone.  They remind me of the white bands that people wear in China, to signify mourning.  I love them! I wanted to share this on the blog, as an idea for others who are or will be mourning someone close to them.  What my friend said, and I agree with, is that no matter how wounded and shattered someone feels on the inside, he/she might still look ok on the outside.  This is a visual reminder of Rachel and a way for us to feel closer to her too.  There's even a little armband for Rachel that has the word "Loved" on it.  And some hair accessories for the girls:)

                                 

Banff with Grandpa and Grandma!

Pictures of the kids in Banff with the Plett Grandparents:
First McDonalds, of course....and then the Gondola ride!

This is my scary look.

This is a rare shot...It's always a battle to get Abigail to let me do her hair.  I love her hair in ponytails though:)

Love those shades girl....

A few more pictures

So tuckered out by all the fun with grandparents....(taken a few days before heading off to MB with D's parents)

And here's our happy little monkey! She has just kicked a toy off the chair with her legs again and is feeling pretty happy with herself:) And look at those legs.....they are chubby again!

Blessings

My mom sent me a email telling me about this song.  I just listened to it and really liked it. Thank-you Mom!  I think that someone else shared this with me awhile ago too. 

http://www.youtube.com/watch?v=1CSVqHcdhXQ

We pray for blessings, we pray for peace
Comfort for family, protection while we sleep

We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering


All the while You hear each spoken need
Yet love is way too much to give us lesser things
'Cause what if Your blessings come through raindrops
What if Your healing comes through tears?
What if a thousand sleepless nights
Are what it takes to know You're near?
What if trials of this life
Are Your mercies in disguise?


We pray for wisdom, Your voice to hear
We cry in anger when we cannot feel You near
We doubt Your goodness, we doubt Your love
As if every promise from Your Word is not enough
And all the while You hear each desperate plea
And long that we'd have faith to believe


'Cause what if Your blessings come through raindrops
What if Your healing comes through tears?
And what if a thousand sleepless nights
Are what it takes to know You're near?
And what if trials of this life
Are Your mercies in disguise?


When friends betray us, when darkness seems to win
We know that pain reminds this heart
That this is not, this is not our home
It's not our home


'Cause what if Your blessings come through raindrops
What if Your healing comes through tears?
And what if a thousand sleepless nights
Are what it takes to know You're near?


What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst
This world can't satisfy?


And what if trials of this life
The rain, the storms, the hardest nights
Are Your mercies in disguise?


- Blessings, by Laura Story

Rachel is still happy but she is looking pretty grayish to us.  This morning, the thought struck me - 'what if Rachel dies while the kids are out in Manitoba?'  I want them to be able to say their goodbyes to her too. And what would that be like?'  It's not that I worry often about this - it was just a passing thought. But I am always aware of how things could change.  At the same time, Dave and I are having a really great time here!! He is off to go for a walk at Nose Hill and I think I'll go sit in the sun room for awhile before we pack up.  I love that room and so seldom get to make use of it....

I know that I feel more relaxed (than I thought I would) about the kids being gone because we know they are having the time of their lives with their grandparents!! As they drove throught the prairies, we received several updates by text.  Ethan was singing along to Cohen's Halleluiah song and making up his own worship songs.  I loved that one!! We got updates on how much sleep they were getting too.  They were up at 4am and Ethan slept only 20 minutes after that, before they arrived in the evening.  When we talked to Ethan on the phone at the end of the day, he sounded like he was still full of energy.  He told us about his drawings that he made on the trip.  We know that this is so GOOD for the kids and we are so thankful!

End to the Weekend

I didn't want to include this in the last post.  But our weekend did end on a sad note.  Just as we were finishing up some of our goodbyes with people at the conference, Rachel had a spell.  I had thought for a bit that she seemed bluish during the last main session but the spell came on very suddenly.  We gave her three doses and almost gave her the fourth.  So, thankfully it wasn't the worst kind of spell.  This time my parents were able to see the tail end of it.  With all the spells she has had, they have never seen one yet.  And it does help them to have an idea of what we go through with her.  Rachel slept alot last night and hasn't eaten much today yet.  She went a long stretch between 3:15am and 8:30am without eating.  I think that's why her smiles are so precious to us today.  

We are enjoying our last full day at the Flames House.  We have plans for another date tonight and we will move home after lunch tomorrow. 

We Give Thanks!

What a week! So many reasons to give thanks! I think I'll just list some of the life-giving gifts of this last week.

1. My parents taking the kids to Banff for a night - which included a gondola ride and a swim in the hotel pool. This left Dave and I a whole evening to ourselves!  We had so much fun.  And it was so incredible to have a day to do whatever we wanted.  

2. Rachel's smiles, giggles, enthusiastic hand waving, happy clucking, and generally her infectious happiness.

3. Spending time at the park with family and not having to do constant bottle feeds!! (Rachel was a short distance away at the FH.)  

4. Reconnecting with friends at the EMC conference this weekend - and for conversations that were good for the heart!  (our church is part of the Evangelical Mennonite Conference and we also hosted it this year). I can hardly remember the last time I had such a long strech of uninterrupted conversation! What a great weekend. 

5. The reason for the lack of interruptions above - we had both sets of parents staying at our house on the weekend! Thank-you!! AND...we only had the two older kids at the Flames House for one night in the whole week that we have stayed here.  

6. The kids excitement, bordering on hysteria - about travelling to Manitoba with their grandparents.  We got a text this morning from Dave's mom saying that they were already in Medicine Hat...(meaning they left at 4:30am) and the kids still hadn't slept in the car yet - they were too excited.  I miss them so much already but I know it is good for them and for us to have this break.  We are going to pick them up in a week. Thank-you!!!

7. Connections with other families here at the Flames House.  This past week we have met two babies here, and both have not grown much because of their conditions.  One is a foster baby.  I have so much respect for families who choose to care for these kids - and sadly, there are so many more that sleep in hotels etc...because there are not enough homes for them.  We have also met another family here from Afganistan / Iran, also with a young baby.  I think it has been good for both of us to finally find someone who understands our particular struggles...

8. The lessons that God has been teaching me.  And there really are too many to list here. The idea of blessings has been on my mind alot this week.  I often think of blessings as good things that God gives, which is true, but sorrow and pain can also be a form of blessing. And I have been reflecting on how this has been true for us. I can honestly say that I am thankful for the sorrow we have experienced this past year and a half, because it keeps bringing me back to Him.  I read in a devotional that the word 'blessed' in Hebrew means 'to find the right path'.  I liked that definition because I think that's what God has been doing for us this past year.  He has used suffering to help us find the right path.

9. The ways that God speaks through friends.  We have received so many wonderful emails and I only get to share a mere fraction of the ones we get.  But there was one that ministered to me in a deep way this past week. She reminded me of the telling in Scripture of the woman who pours expensive oil on Jesus' feet.  The people around her thought this was an extravagant waste.  Yet Jesus received it as worship and praised her for it.  I think that I too have wondered if people see our choice of carrying and loving a child with medical needs, as crazy.  I wonder at times what good can come of having to focus so much energy on one child.  Is there value to what we and many others do for our hurting children, for the 'least of these'? I think too of friends who foster babies, maybe even with the hope of adopting them, but sometimes they have to let them go after expending so much of their time and love.  And so the image of the woman annointing Jesus was deeply encouraging to me.  For us, loving Rachel is like pouring perfume on Jesus' feet.  And so our suffering is not meaningless.  If I might borrow one line from my friend, "Your suffering is not meaningless, it is heavy with glory that is blessing the very heart of God."  How encouraging that is to us!!  

10.  And I have to add one more...in the middle of writing this - one of the staff watching Rachel came to get me. She wanted to show me what Rachel was doing.  She was sitting in her chair, kicking a ball off again and again - grinning happily each time she pushed the ball away with her feet.   I LOVE seeing her like this, moving her arms and legs and so full of life! God, thank you for this little girl who is teaching us so many things, and who has added so much joy and beauty to our life!