"He shall feed his flock like a shepherd: he shall gather the lambs with his arm,
and carry them close to his heart, and shall gently lead those that are with young." Isaiah 40:11

Saturday, April 30, 2011

We had to give Rachel one syringe of fentanyl at 10pm.  She woke up after about an hours sleep with a panicked cry and looking blueish.  Her cheeks and hands were cold. These 'almost' spells are almost wose than the full blown ones. (on us, that is) At least if she has a real spell, she usually sleeps for a long time because of the drugs.  Now, I get anxious waiting to see if she will have a real spell yet or not.  I also think all of this is just hurting more now than ever because I love her so much more than I did a year ago.  I don't want her to die - I am so afraid of losing her, but I don't want her to suffer either.  And I am so afraid that her death will be drawn out and painful.  God, be near us tonight. Please drive away the fear that wants to take hold of me.

Friday, April 29, 2011

I think Rachel is doing better right now.  She cried for an hour this morning which was really tough - Abigail watched clips of the Royal Wedding while I tended to Rachel.  (see? I didn't have to watch it in the middle of the night - you crazy people:) ) Ethan was interested in the horses for a little while. We had plans to go out this morning but I had to cancel them.  It feels like we are heading into more spells and I really do not like that.  It makes me feel sick to my stomach.

I was reminiscing a bit this morning.  The year I turned twenty-one was a very painful time for me.  I remember that I stayed awake two consectutive nights to read through the book of Psalms - and I didn't just read them but I also wrote down the verses that stuck out for me.  I felt like Scripture was my lifeline in the night.  I think now is another one of those times.  I started reading the Psalms again this morning.  And I am also listening to Fernando Ortega's cd "The Shadow of Your Wings".  I listened to this cd over and over when we first got the ultrasound diagnosis.  It is so calming for me.  I'm kind of hoping it will be for miss Rachel here too - maybe she remembers it from when she was in my womb.   

"Sing to Jesus
Honor His name
Sing of His faithfulness
Pouring His life out unto death


Come, you weary
And He will give you rest
Come you who mourn
Lay on His breast"

Rough Night

We gave Rachel some fentanyl at 3am, almost an hour ago.  She wasn't having a spell but definetly something was going on.  Her breathing and cry was very irregular.  I can't get back to sleep. I'm wound up so tightly with worry.  Even before Rachel came upstairs, I was having a strange dream about my heart stopping - and someone putting me on a machine while I waited for a transplant or somthing.  And now it still feels like my heart hurts.  After I gave up sleeping, I remembered this comment that someone left on my lamenting post and went looking for it.  I felt like I needed a Psalm to read. Thank-you. 

and now when I read it, the fear is changing to pain.  God, this is so hard! I need You! 

How long O Lord will You forget me?
How long O Lord will You look the other way?
How long O Lord must I wrestle with my thoughts,
And every day have such sorrow in my heart?


Look on me and answer, O God my Father
Bring light to my darkness before they see me fall.
But I trust in Your unfailing love
Yes, my heart will rejoice.
Still I sing of Your unfailing love
You have been good, You will be good to me.


- song by Brian Doerksen, taken from Ps 13

Wednesday, April 27, 2011

Cuteness

Rachel fell asleep last night with her hands on this toy.  I moved them down and when I went to check on her later, they were back up on the toy.  Maybe she's afraid I'll take it away;) 


Rachel is doing well.  She has a bad cough because of this cold that is hanging on, but she has such a good nature.  She will cough like crazy (even throw up) but then when she knows you are looking at her, she will just beam happily away at you! I also never needed to go pick up the Lactulose perscription because she is pooping wonderfully!! Almost too good....Maybe that prune juice is finally kicking in! Thank-you God!

Enjoying the Nice Weather Again!

After our Easter Sunday Hunt with Friends
We sure missed being with family this year but our foster family here in Calgary took good care of us!!
 Thank-you for sharing your family with us!!

Throwing Rocks at Fish Creek Park with Daddy
Dave was working alot last week so he could take a few extra days off this week. 
We're not doing much - one day was spent mostly catching up on sleep after a night of no respite, and we are mostly just hanging out at home.  It is great to all be together again...

Most likely she is keeping a good look-out for bugs...
We hope both our kids get over their crazy fears soon!
Another Easter Egg hunt in our backyard...

Monday, April 25, 2011

Easter Monday Faith


Do not abandon yourselves to despair
We are the Easter people and hallelujah is our song!’
~ John Paul II

Sun’s rising after Resurrection Sunday on a Monday world where everything’s changed…

Easter Monday faith believes that in impossible darks, impossible light sparks.
Easter Monday faith believes that the tombs places of our life, are but womb places for new life.
Easter Monday faith believes that Christ tenderly takes our doubts — and says touch my scars…
This faith believes in stones that roll, in grave clothes that fall, in an Easter people who sing hard hallelujahs … because we believe in resurrections always coming.
                                 ~ Ann Voskamp

Saturday, April 23, 2011

A New Day

Now that I have lamented and unloaded for a few days I feel more able to see beauty around me again.  Strange how that works.  But, Today is a new day! Here are a few pictures that make me smile....
My cool kids eager to walk to our neighbors house for supper
(they got ready all by themselves)
Dave and Abigail loving Rachel...
(oh boy...just noticed the pile of laundry also on the bed...)

From one of our Respite Workers...
I love the way the afternoon sun made these petals shine...so beautiful.

Friday, April 22, 2011

You Touched the Death that We Know

Rachel is about the same.  She still isn't feeling well.  She's had a fever off and on and stuffy nose, which needs alot of cleaning out.  But if you are praying about her constipation, you can stop right now;)...because she has had lots of soft, almost diarrhea like poops.  She has also thrown up a few times, poor girl.  But no spells.
 And us? Well, I still had to do quite a bit more lamenting after that post.  In fact, it was a Lamenting sort of day for both Dave and I.  Thank-you for coming with me on my lament journey yesterday.  I know it isn't easy to enter someone else's pain in this way and I appreciate your openness with me too.  There was a line from a song in my head this morning, as I thought about lament.  "Where should I lodge my deep complaint? Where but with you, whose open door invites the helpless and the poor?" It is good, so good to know that I can speak openly and honestly with God.  And he is not a far off or distant God, or a God that has no idea of the suffering we experience. 
      
As it is Good Friday today, I wanted to do some reading about what this day of remembering means for Jesus followers.  These are some verses that spoke to me this morning.  If the player on the blog still worked I would have liked to play this song by Sandra McCracken that fit well with this day..but it looks like it's on the fritz..

"Because God's children are human beings - made of flesh and blood - the Son also became flesh and blood.  For only as a human being could he die, and only by dying could he break the power of the devil, who had the power of death.  Only in this way could he set free all who have lived their lives as slaves to the fear of dying.  We also know that the Son did not come to help angels; he came to help the descendents of Abraham.  Therefore, it was necessary for him to be made in every respect like us, his brothers and sisters, so that he could be our merciful and faithful High Priest before God.  Then he could offer a sacrifice that would take away the sins of the people.  Since he himself has gone through suffering and testing, he is able to help us when we are being tested." Heb.2:14-18

Then, I read this blog entry....A Good Friday Reflection written by the author of "One Thousand Gifts". This is one part of it...and it became my prayer today.

"I know… how could You have been our Saviour if You hadn’t known suffering?
How could we have worshipped You if You weren’t wounded?
How could we bow to You if You were not bruised?
We could only believe in You because You have lived in us — in our mangled world, in our aching pain, in all our hurting humanity.
You alone are the God for us — because You alone are the God who has been one of us.
You felt what we feel, You touched the death that we know, You came to us as Immanuel: God with us."

Thursday, April 21, 2011

I've been Lamenting...

Now all three of my kids have a cold. But Rachel has it the worst. She is blueish and not moving as much and so I am on guard for spells. The day ahead looks hard and long. I have a Dentist appointment this morning too and I don't want to leave Rachel.  But then it is always hard to leave her. 


Last night Dave asked me how the day was.  And then I found myself talking and things started pouring out of me that I wasn't really aware of.  I have been trying for so long to be strong for everyone.  I didn't want to admit how disappointed I really felt or how my heart hurts.  Sometimes I don't feel like I have the right to complain. I have friends whose only child died.  I have friends who have waited many years for someone to share their life with and they want kids.  But I have been working so hard to be thankful, to do eucharisto - be thankful, focus on what is good and right etc....that I forgot that it is ok to lament too...that sometimes lament is necessary and good.  And my lament has been so bottled up, like a time bomb waiting to errupt. It hasn't errupted yet, but last night was like a tiny hole letting out some of the pressure.
 
Then this morning, Abigail was singing this little song to Rachel in a cheery voice and I had to turn away from her so she wouldn't see my tears streaming. And that hole widened a bit more.  These were the words..."We want to keep you but you're going to die. You're going to die. We want to keep you but you're going to die." And my thought....was "oh God, this is not the song I want my daughter to be singing to her 11 month old sister!  This isn't right....oh, this just isn't fair." 




Last night I told Dave how I felt about the day. This morning I told God. I think I was afraid to finish this last night because I knew I would cry and then I wouldn't sleep...This is how my "Psalm of Lament" goes...(and I warn you - this is pretty raw. I am not holding back on this one - well, scratch that - I will probably still hold back because this is on my blog, but truthfully, I don't know where I'm going to end up...)


God, I watched my two children play in the bathtub today. 
Soon they will be too old to do this together.
Abigail would have had so much fun playing with her 11 month old sister in the tub...
I can almost see it....Rachel sitting and splashing her big sister...      
I wanted this...I want this so badly.  Can you see how it hurts?
I have this picture of Abigail sitting in her high chair on her first birthday...
Sitting....Eating and playing with a carrot muffin...Laughing...
I will never experience these joys with my second daughter.
I won't applaud her first steps or have a conversation with her..


What are you doing God? 
How could you give us this beautiful little girl and have us fall in love with her, all the while knowing that you will take her away??
You didn't give me what I wanted! I wanted three healthy children
The number isn't really all that important.
What I really want is Ethan, Abigail, and Rachel.
And it hurts beyond belief to know that I can't have this.
Life used to seem simple before.
My biggest complaint was lack of sleep and temper tantrums.
I remember how my biggest decision that day was what to do with the kids...walk to the Library, go to the Park, get together with friends. 
I remember what it was like to look forward to something.
And now...everything is upside down.  Nothing feels secure or safe anymore. 
Many of our friends have palliative care kids, or children who have died.
It seems rather impossible that there are healthy kids at all.  
All the bad is clouding over the good stuff.
That beautiful joy in celebrating other's new pregnancies or births isn't there anymore.
And I miss the joy of celebrating milestones...
I grieve bitterly that Rachel can never be that happy smiling chubby baby in my arms. 
And I can almost see it - in a way that I haven't ever allowed myself to imagine. 
Her face in all of those healthy babies I saw at the immunization clinic....
How it should have been..

And God, I am so tired. Tired of the constant unknowns.
Tired of wondering every time I go shopping, if I'll need to leave everything and run home.
Tired of always wondering where Dave is and how fast he can get home.
Tired of not having energy to talk with my friends or pour myself into anything at all.
Tired of wondering when we will have a funeral - when my friends are making plans for the summer. 
We are just plain tired. When do we get our break God?
Just one day...just one day to not have to hurt like this. To not be so tired in every part of my being..


And God, my biggest complaint.  
Rachel is so frail.  She is brave and beautiful but she is so little.
And she has to struggle to breathe. She has to suffer.
And it hurts my heart so much.
How many more times do we need to endure these spells?
Because I don't know if I can do it any more.
God, please have mercy on her.    
God, please have mercy on us. 


ok...many tears later, I am finally done.  Funny thing is I feel better.  And I feel heard.  And when I read over my own questions and complaints again, they don't seem as big as they did when I was writing them. I almost expect to hear God respond with a long list of questions as He did with Job.  Maybe I will go and read the book of Job....or some psalms.  Although on second thought, I should really give some attention to my kids now.  I have been rather negligent this morning.  And I just snapped at Abigail when she dropped something and woke Rachel up....So, into the day I go.

Tuesday, April 19, 2011

Random Stuff

Rachel's doing well.  She had her days and nights mixed up there for awhile as result of her spells.  But last night she was finally giving her respite worker more rest.  There have been a few times where we felt anxious about her crying.  Maybe we are just feeling a bit hypervigilant, but it's hard not to feel that way these days.         

I talked with a Dietician this afternoon about her constipation.  She was not in favor of using Benefibre because her fluid intake is so low on her good days.  Rachel could get really bunged up if she doesn't take in enough milk.  And it's usually given to kids age 6 and up. So, then we talked about using Lactulose, which is something we have talked about doing off and on for awhile.  (but haven't yet because she is so little) It draws water out from the bowel, which means she doesn't need to be taking in much fluid? Not sure I understood the difference but we're going to try it out.  I just have to go fill the prescription. 

You know how you go to a Doctor or Hospital with your child because you have a concern - and then they act completely healthy?? Well, a short time after we had this arranged she had her first big soft poop....followed by two more later in the day.  Ha ha...funny Rachel.  You heard me talk about medicine didn't you? She still had a hard time getting them out though - she was straining off and on all day.  So, we're still going to try the Lactulose.  I read that it can increase flatulence.  Great, my kids will get such a kick out of that;)

It seems pretty silly to mention this but.....I am happy that we no longer have to buy a dozen baby prune juice jars every week....or the small packs of NB diapers.  Superstore has a box of NB diapers now! Yeah, small joys.... 

Someone said "Congratulations" to me the other day when I was carrying Rachel out of Ethan's preschool.  That kinda took me by surprise!:)  Then I surprised her by saying that she was going to be a year old next month.  It was all good - we had a nice chat.  Still, it felt a bit strange to hear Congrats for my 10 month old baby!:)

We noticed a large bump on Rachel's lower gums this afternoon, but it wasn't where I would expect a tooth to be coming out.  A friend dropped by and when she beamed at him, we saw it.  Hopefully it won't cause too much trouble for her.  Abigail has had a nasty cold the last few days and there has been alot of stuff going on, so we're all a bit tired out....but overall, we are doing just fine.  I have felt some of the sadness lifting from last weekend and I have been able to enjoy my kids a bit more.      

Sunday, April 17, 2011

Easter Dresses

Look what I found today!!!! Dave sent me out of the house for a bit this afternoon, something I really needed today.  I was feeling so gloomy.  I stopped in at Winners just on the very off chance  that they would have matching spring dresses for my girls. I've looked been looking for this off and on since I was pregnant with Rachel.  I have almost given up hope because Rachel's shoulders are so narrow.  But today I found some.  Rachel's dress is even a 6 month - believe it or not! (this kind of sleeveless seems to work for her, and it's long enough!) Abigail's dress was the only one left on the rack that was bigger than size 12 months!!

I feel so excited that my girls have special matching dresses - what a treat! For so many months I kept my eyes open for matching dresses for a funeral (yeah, that kind of took the joy out of it) and so it is still a bit hard not to think of these dresses with that connection.....but here they are both very much alive and so beautiful. 
Thank-you God for this beautiful gift today! 
The dresses also came with matching headbands but Abigail wasn't a fan of wearing hers right now....maybe I can convince her for next Sunday though:)

 
he he..i was in such a hurry to take a picture while she was happy,
I left the tag on...

Pleased as punch....
You wouldn't know by looking at her now that she almost died this weekend!
What an amazing little girl.

The Peace of Wild Things

Rachel is doing really well. She didn't give her respite worker any sleep last night though! She was awake from 1:00 - 5:00 am and was up every hour when she was sleeping. Today she is fairly content, happy to sit and watch the kids playing in the Living Room. I have just wondered once if a spell was coming on but most of the time I am just busy feeding her.  I guess she is doing some catch up feeds. But even though she seems so much better, I am feeling really heavy with sadness today.  We weren't able to go to church this morning. It was akward because Dave needed to be there very early and it's not exactly biking weather yet, so he needed the van.  But I'm not sure I would have had the energy to do it today anyway....So here I am at home, my thoughts with my church family.  I been able to do some reading this morning and this was very good for me.


This is a poem I read this morning in Phillip Yancey's book on Prayer. I liked it alot. (On a morning like this, in a house, in the city, I have to use my imagination a bit though....)


The Peace of Wild Things
- by Wendell Berry
When despair grows in me
and I wake in the middle of the night at the least sound
in fear of what my life and my children's lives may be,
I go and lie down where the wood drake
rests in his beauty on the water,
and the great heron feeds. I come into the peace of wild things
who do not tax their lives with forethought
of grief. I come into the presence of still water.
And I feel above me the day-blind stars
waiting with their light. For a time
I rest in the grace of the world, and am free.


(and then I read this in the Message - Mathew 6)
"If you decide for God, living a life of God-worship, it follows that you don't fuss about what's on the table at mealtimes or whether the clothes in your closet are in fashion. There is far more to your life than the food you put in your stomach, more to your outer appearance than the clothes you hang on your body. Look at the birds, free and unfettered, not tied down to a job description, careless in the care of God. And you count far more to him than birds.


....If God gives such attention to the appearance of wildflowers—most of which are never even seen—don't you think he'll attend to you, take pride in you, do his best for you? What I'm trying to do here is to get you to relax, to not be so preoccupied with getting, so you can respond to God's giving. People who don't know God and the way he works fuss over these things, but you know both God and how he works. Steep your life in God-reality, God-initiative, God-provisions. Don't worry about missing out. You'll find all your everyday human concerns will be met.


Give your entire attention to what God is doing right now, and don't get worked up about what may or may not happen tomorrow. God will help you deal with whatever hard things come up when the time comes.

Saturday, April 16, 2011

She has been improving

Thank-you so much for all your notes - they have been a great encouragement to me today. 

Rachel is doing better right now.  She even had some happy periods this afternoon.  (although definetly muted) And no more blue periods or spells...what a relief! I'm so glad for the reprieve.  She has been working hard the past couple days to get out a few hard poops - disappointing because we had so hoped that the change in prune juice would help her have softer ones.  And, she doesn't have strength to spare these days. 

By the way, I'm not sure I have ever mentioned this but I am finding out that kids with heterotaxy (in simple terms - when some organs are on the wrong side of the body) have ALOT of problems with constipation.  I'm planning to talk with the Dietician on Monday about adding Beni-fiber....(or some name like this??)  Some of you have asked about whether we have tried other constipation aids.  The reason why we haven't tried many other options yet is her weight.  Usually these drugs are given to kids who are heavier than 7 lbs.  But I really think we need to do something new because things are not working the way they are.      

I sure didn't feel like doing anything all day.  None of the usual stuff seems important enough to tackle today.  Dave kept reassuring me that this was ok. I think he was having a hard time concentrating on his work today too - and I'm sure he would appreciate your prayers for him in this. Truthfully - I am often amazed at how he is able to work and give of himself to others, while still caring for us at home.  I am so proud of him.  We'll keep you posted on how Rachel is doing....

Hard Days

These are hard days.  Rachel has been having more 'blue periods' lately - times when she seems to be having difficulty breathing.  And then yesterday at 6pm, she had a full-blown heart spell.  She slept for four straight hours after that, something she only does after a spell.  She only had one good feed (40mls) the whole day, an amount that she was doing almost every hour or two until a few days ago.  Her fontanel was sunk in again this morning.


Then, she had a hard night (very little eating, weak crying) followed by a very terrible spell this morning at 7:30 am.  Our weekend respite worker brought her up to us and she was quite shaken by it. This was the first time she has seen a spell.  I still feel shaken by it too.  I don't want her to suffer like this anymore and I prayed that God would take her home. I asked God to comfort her.  I even asked that God would show her the angels surrounding us and a view of heaven.  We said to her that she could go.


But, it still wasn't her time to go home. She is here in front of me now, playing with a crinkly book.  The house is quiet.  Dave took the kids to the Big Train Show with some other friends.  Sometimes Rachel looks over to stare at me.  She has given me one slow smile and it made my heart so very glad to see it.   I have needed this time with her for a long time.  I am listening to music and reading the Bible, hungrily.  It is so healthy and healing to cry.  This is what I read this morning...

"All praise to God, the Father of our Lord Jesus Christ. It is by his great mercy that we have been born again, because God raised Jesus Christ from the dead. Now we live with great expectation, and we have a priceless inheritance—an inheritance that is kept in heaven for you, pure and undefiled, beyond the reach of change and decay. And through your faith, God is protecting you by his power until you receive this salvation, which is ready to be revealed on the last day for all to see.



So be truly glad. There is wonderful joy ahead, even though you have to endure many trials for a little while. These trials will show that your faith is genuine. *It is being tested as fire tests and purifies gold—though your faith is far more precious than mere gold. So when your faith remains strong through many trials, it will bring you much praise and glory and honor on the day when Jesus Christ is revealed to the whole world.

*(Our faith is being tested not in a 'pass or fail' kind of way but God is giving us the opportunity to discover that the faith we pay lip service to, really works - it is the real deal.  And this discovery gives us JOY.")

...The reward for trusting him will be the salvation of your souls. This salvation was something even the prophets wanted to know more about when they prophesied about this gracious salvation prepared for you. They wondered what time or situation the Spirit of Christ within them was talking about when he told them in advance about Christ’s suffering and his great glory afterward. They were told that their messages were not for themselves, but for you..... It is all so wonderful that even the angels are eagerly watching these things happen."

A song that I listened to alot during my pregnancy is this one by Sara Groves.  And it has been playing in my mind these past few days too.  There is so much that I can't see right now.  But there is a BIGGER story that we are part of.  And a BIG God who has all this under His control.  And this does give me comfort as we keep travelling these unknowns, day after day, spell after spell.  (some days more than others!)

From This One Place
I was about to give up and that's no lie
cardinal landed outside my window
threw his head back and sang a song
so beautiful it made me cry

took me back to a childhood tree
full of birds and dreams


from this one place I can't see very far
in this one moment I'm square in the dark
these are the things I will trust in my heart
you can see something else
something else


I don't know what's making me so afraid
tiny cloud over my head
heavy and grey with a hint of dread
I don't like to feel this way

take me back to a window seat
with clouds beneath my feet


from this one place I can't see very far
in this one moment I'm square in the dark
these are the things I will trust in my heart
you can see something else
something else

ps - If you are reading this far, thanks to my (several!) friends who are checking up on my vitamin intake and sleep:)  I am taking my vitamins, thank-you! I do wish there was some magic pill to stop my eye from twitching (three weeks now)....if there is one, please let me know...;)

Thursday, April 14, 2011

What a Surprise

Yesterday the kids were riding around on the deck on their bikes and playing in dirt. 

This is what we woke up to this morning.....Crazy, huh? There is a car across the street almost completely snowed over.  But this is beautiful too - it's probably easier for me to say this because I don't have to go out today!  (Dave wanted me to post a picture...so here you are...)

An 'Almost' Spell..

Rachel was so close to having a "heart spell" this morning.  I had the medication out and called Dave already to give him a heads up and watched her anxiously for ten very long minutes.  Finally she pinked up again and I went back to cleaning the kitchen.  But I'm not sure I have recovered yet.  How do I go back to doing 'normal' stuff after something like this? I have been telling people that I think I have reached a new stage in this journey.  I have been more 'at peace' with how life has turned out.  But today that is being sorely tested again.  My heart hurts.  

We're playing the kids cd again this morning called "GT and the Halo express." The kids love this CD and I love how they are learning Bible verses with the songs. There is so much in this CD about trusting God when we are afraid.  There's a part in the story where this boy is afraid of a bully and the angels have been instructing him in what the Bible says about fear. And then God steps in - our Defender and he says these words in a Strong, Deep voice.  This verse (and song) struck a chord deep in me and gave me so much comfort.  I had this picture of God being right beside me, holding me up, and caring for Rachel too.       

"Don't be afraid, for I am with you. Don't be discouraged, for I am your God. I will strengthen you and help you. I will hold you up with my victorious right hand." Isaiah 41:10

This painting reminds me of the one that was hanging in the ultrasound room where we spent so much time in my pregnancy.  So well placed.  I remember staring at it, clinging to what I believed about God, that He really is our refuge and strength.  I think I'm doing some more of that today. Clinging, choosing to focus on what is TRUE about God.  Putting on the armour of God to withstand the enemy's lies about Him....

Tuesday, April 12, 2011

Beauty


Can you believe that this little girl is almost one year old?!!?!! We might even have a one year birthday party next month! Wow - when I think back to those horrible first weeks...I had no idea what incredible joy she would give us! 
Prune Face

I think she's waving Good-bye;)

At Fish Creek Park
We left Rachel at the Flames House on Monday afternoon for about 4 hours.
We took a picnic and the kids rode their bikes. 
We did succumb to getting helmets, although why they need them when they drive barely 5km/h with training wheels is beyond me!  They sure love wearing them though:) 
Asleep on the way home.....
he he...that looks uncomfortable..
I am still adding to my "Thanksgiving list".  I often leave it until the end of the day and even thinking of five things is sometimes challenging.  I noticed that food seems to make it on my list almost every day! (God made food for us to savor and enjoy right??) This thanksgiving practice has been such a good exercise for me.  Here are some of my favourites from the last few weeks.


19. Ripping the plastic off of the patio doors for spring
26.  Listening to Ethan humming happily
32.  A Friend's insistence that we throw a big Birthday bash for Rachel's One year b-day
47.  Caramel Steamer and Lemon Bread from Starbucks
61.  Pretending to be pirates with Ethan and Abigail
67.  Ethan's soft heart towards God
71.  Rachel's giggles when Ethan and Abigail played their xylophone for her


What's on your list?

Each Day has enough Trouble of it's Own

Overall it has been a very good week. Rachel is doing well.  She is eating ALOT these days - as if she is half starved, and often every half hour.  I also just fed her about 5 tlbs of oatmeal and prunes! This is more than her usual formula feed.  She had a massive big soft poop this morning which was cause for some celebration;)  We think Rachel is starting to wave good-bye (intentionally) at people.  We have had some time together as a family.  I have felt more connected to friends than I have in a long time. And I have just finished reading a few good books that have encouraged and inspired me.  But I have to be honest - there have also been a few days when I have felt a bit like this picture of our pantry on Sunday night. 



We had been getting ready to go to friends. Our house was a complete disaster and I was already on the verge of pulling my hair out because there was no place to walk - the kids had erected some sort of fort in the middle of our living room and I couldn't find anything. And then I heard a huge crash from the kitchen. Dave said he had just opened the pantry doors and then the top shelf just collapsed and took out the one below it. Thankfully, Rachel was not in her usual place in front of the pantry. It could have been so much worse. (I shudder now to think of a heavy container of oatmeal falling on her head) But I didn't think about this right away. All I could think of is how everything seems to be breaking...and the chaos of my house seemed to symbolize so much more...

I'm sure you know what I mean. "Just put one more thing on my shelves and it's all going to come crashing down." There was a day last week when I was suddenly overwelmed with tiredness. I wanted to crawl into bed and not have to deal with anything or do anything.  I know that Rachel's spells had played a part in how I was feeling.  I think the stress of them seems to show itself a few days afterwards. But I also felt shaken, and unmoored somehow...and sad because of stories we had been hearing that week.  A three year old boy suddenly started seizuring and is in hospital now in an induced coma so doctors can find out what is wrong. Another girl we know from the Flames House had a spinal go very wrong and her mom says they had to keep the incision open.  She had already spent 5 weeks in the hospital. 


I have had to wrestle this week with those old fears and doubts again.  What if that happened to Ethan and Abigail?  What if I had to give up not just one child, but two or three? What if there is some disease in their bodies that will only show itself in a year, five years...? Would/could I still trust God's love for us? Yesterday I looked back at some of the emails we received from friends in those early days of Rachel's diagnosis.  Dave also reminded me too of the devotional I had shared on the blog, about fear.  It's called  "Grace When We Need It"  I had to read it again today, twice.  It is so hard sometimes to take my gaze off of my fears and put it back where it belongs - on the timely Grace of God.  But I know that if I don't, I will be crushed and paralyzed by my fear.  And I so want to live differently!


How do you deal with your fear?
There have been alot of songs on my kids cd's today that were about fear.  These are some of the lyrics...I felt they were for me to hear today too!! 


"Surely God is my salvation; I will trust and not be afraid. The LORD, the LORD, is my strength and my song; he has become my salvation." Is.12:2


"Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid." John 14:27

"When I am afraid, I put my trust in you." Ps.56:3

Thursday, April 7, 2011

A Few New Things

1. After dinner today we noticed that Rachel's fontanel was sunken more than we have ever seen before.  It was very pronounced. The nurse saw it too and said that this is usually a sign of dehydration.  Later on (after a good feeding) when the doctor stopped by, her fontanel had already popped back up:)  She agreed with the nurse and also added that sometimes this can also happen in babies when they are upright for a long time (ie. gravity) But she has been drinking and peeing alright so it's not a big concern.  I wonder if this is just a result of her taking in so little fluids after those spells. 

2. Rachel likes peas! Actually today she did really well eating cereal.  I did oatmeal and prune once and later oatmeal with peas.  Hopefully this won't stop her up more.  She was really unhappy this evening and I wonder if the peas weren't sitting well in her tummy?  I was a bit worried for awhile but thankfully she did fall asleep.  We are also putting pure adult prune juice in her milk now. (before it was an apple/prune mix) I hope this does the trick!

Overall, it was a good day. I had Rachel giggling for quite a while...I was biting her hand and making growling noises and she keep trying to stick her hand back into my mouth for more.  She has such a playful spirit:)

How to Draw People 101


Rachel is doing great today! We're enjoying her smiles again:)  

This picture made me laugh yesterday.  The kids drew this on the whiteboard in our room.  Aren't we all so lovely?;) Our family today includes Dad, Mom, Ethan, Abigail and Baby Rachel, one "practice baby", and Hannah of course (one of Abigail's friends)


Wednesday, April 6, 2011

Sleeping Beauty

Rachel has been sleeping alot.  She was awake for about 3 hours yesterday (in total!) and then slept all night, waking only once just to eat a little bit.  And so we wonder what the this day will hold.....

Last night, Abigail and I curled up on the couch with some popcorn to watch "Little Mermaid".  And Dave took Ethan to a Harlem Globetrotters game. (someone gave us two tickets!) Ethan talked a blue streak about it when he got back.  He's talking to the chef at the house right now about it:) Thank you so much!!  It was a wonderful interlude in a week somewhat overshadowed by Rachel's spells. 

We are hoping to do something as a family this afternoon.  If Rachel was doing well, we would have considered leaving her here and take off into the mountains.  But we're thinking we might go to a park in the city instead.  I'm really looking forward to being outside again!!


Thank-you so much for your prayers.  I am feeling a bit more anxious today.  I keep thinking that I hear her pre-spell cry all the time.  But at the same time, I know that God is with us.  It is well.

Tuesday, April 5, 2011

20 Minutes

This afternoon, Dave was going out the door to bring Ethan to his preschool, and I had a feeling that Rachel was having another spell. Her hands felt cold and she had that strange pre-spell cry. But Ethan was so excited about going to the fire hall with his class...and so I didn't stop them.  Dave asked if she was ok and I lied and said "yes".  And then I ended up having to call his cell a few minutes later to ask them to come back. Abigail was screaming from her bedroom, wanting something or other and I kept yelling at her to wait while I juggled the fentanyl and the phone and watched the timer.  I think she sprayed back most of the first syringe in my face because I was in too much of a hurry.  I HATE THIS.  I hate it that my little girl has to go through this.  We gave her four syringes which leaves us one more.  We will get more in a few hours when we are back at the House.  (we came home for the day) Dave ended up taking Ethan to the fire hall after the spell ended.  He'll be late but at least he still made it.  So, that's our afternoon.  Rachel already slept all morning and now she'll be out again for awhile.  I think I'll go lie down next to Rachel for awhile.  We really do appreciate your prayers.  Thanks.

After her spell last night


After the spell last night, Rachel slept for over three hours on our bed. She only woke up when we transferred her to the main area (and the nurses) for night.  Times like these, she seems so little and fragile.  It's so hard because she has been so full of sparkles and life lately.  This little girl brings us so much joy.

Thank-you for praying for us last night.  I was able to have a full nights sleep:) 

Monday, April 4, 2011

Spell

Rachel had another spell tonight.  We were just sitting down with the kids for a movie when it happened.  I was thankful for another mom that came to sit with Ethan and Abigail, while we took care of her in the main area.  (although I heard later that Abigail had politely asked her to go away - yikes - it's kind of scary what comes out of our kids' mouthes! But she took it all in stride.) We had to give Rachel the maximum dose of fentanyl. 

If you read this tonight, I would really appreciate your prayers as we prepare for bed.  I'm feeling a bit on edge again, wondering how she will be during the night.  Thank-you.

The Last Supper

*thanks for the title idea Mom!;)  

Thought I should let people know that we are at the Flames House for the week! It has been a full two months since we have been here so it's alot of fun to show the staff here how Rachel has changed.  We were greeted by staff who were super eager to hold her again.  Rachel is doing really well.  She had a bm last night which we were pretty happy about - they have been awful for her lately, which reminds me that I want to talk to a dietician soon about maybe adding something to her milk to help soften her stools.  (prune juice doesn't seem to be doing the trick) I also just had a very good chat with a social worker here too and she had some good advice about how to talk with Ethan about Rachel's spells.  

A few days ago we ate the very last prepared meal in our fridge!  I am not telling you this so that you will make more.  I am noting this because it has been a marvel to me at how God has provided for us (through you!) this past year and three months! We did make our own meals along the way and we also purchased ready made meals ourselves but there was so seldom a day when I didn't know what to make for supper.  THANK-YOU!  And we are really doing very well right now!

We are really enjoying our day here.  I went to a gym class this morning and felt so good afterwards.  It was the first time I felt like I wanted to be there in so very long.  It's hard to explain right now...but maybe one day I will. (The gym has probably been my least faveorite place to be since we heard the news about Rachel - and also one of the places where I most needed to go.)  We took our van in to an autobody shop today.  It's going to get fixed! And it should take about three weeks.  No news on whether the camera caught the crash yet. Dave took the kids to the duck pond while I had some cuddle time with Rachel this afternoon.  And now, I'm going to get back to my family! 

Thank-you for all your notes, emails etc... I may not respond yet but I am reading them all! 

Saturday, April 2, 2011

$535 haircut

Yeah, never going there again;)  Not my idea of a great April Fools Day joke either! 

Yesterday after my haircut at the Sunridge Mall (and a very quick stop at a kids store on the very off chance that they have a dress that might fit Rachel..they didn't), I hurried to the van.  Dave and the kids had walked over to our neighbors' house for a birthday supper and I was going to meet them there.  I think I even started the van and then it struck me as odd that I could still hear everything outside.  I looked back and thought - "that's funny - the back glass is so clean I can see right out....wait a minute....there's a breeze....it's broken!"  So I got out and this is what I saw.

Crazy huh?  There's even glass on the dashboard. I'm so very glad our kids were not in the van when this happened! We figure it must have been a pretty big vehicle because the bumper isn't damaged.  And the funny thing is that there is a security camera pointed right in this direction and it likely got a clear shot of what happened.  Someone must have hit it pretty hard to do this, and Dave thinks the skid marks look like he/she must have hit reverse pretty fast to get out of there. 

After I stood there stunned for awhile, I went to get a security guard and as we walked back to the van, he asked me why I was laughing about it.  He must have thought I was a bit weird.  But I had just read about some pretty ugly stuff that was happening in our world...and I think this gave me a healthy dose of perspective.  I told him a bit about Rachel too and later when Dave and John (friend) showed up, he told us some of his own story too.  And so we had an interesting conversation right there in the parking lot about God's work in our lives. 

We're driving a rental van right now - a Dodge Caravan and it doesn't have winter tires. And it's snowing like crazy in Calgary right now.  But there are so many things to be thankful for - car insurance for starters...a roof over our heads etc.."

I did end up starting my "one thousand things list" (a grateful list).  I'm aiming to write down five things a day.  The kids are really into this now too. The other day (or yesterday?) Ethan brought me a glass of water.  Then he said "Here mom.  You can drink this and then you can write it down in your book."!  I think our whole house can use some work in the thankfulness area - the kids aren't the only grumblers here either...so here goes.  To borrow an expression from a friend, I pray, "God, make this thanksgiving thing sink deep into our hearts.."