"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

Tuesday, May 31, 2011

Rachel is doing a bit better today. She drank a bit more than yesterday.  Still no smiles but I think she spent a bit more time sleeping and less fussing.  We have to admit that we have mixed feelings about her doing better.  If she is going to leave us anyway, we don't know how we can bear this being drawn out over a longer time.  Also, we know where she is heading and we know that place is beyond even our highest imaginations. I feel deep disappointment for her that she can't go yet...and I feel the same for ourselves too.  I feel guilty for feeling this way - it feels so terribly wrong to say that I wish our child could go for our sake, and yet this is so hard. I gave her a bath today.  It had been awhile since I had bathed her fully and it shocked me so much I almost wept.  She has lost weight. I notice it especially in her thighs but her whole body is so tiny, so frail.  She can't hold her head.  It feels so different to hold her.  Just now Dave showed me a several videos of her laughing, and smiling, and waving her feet and arms, and it is a stark reminder of how 'not herself'' she is right now.  We laughed together as we watched them.  And marveled at her beauty and personality. I imagine that we will spend alot of time watching these again and again - because this is who Rachel is to us, and this is how we picture her in heaven - except that then she will be truly FREE. Now we only see a part of who Rachel really is but one day...oh, I wonder what it will be like to know my daughter in God's redeemed world...God, give me patience to wait.     

No change

Our respite worker kindly recorded Rachel's milk intake last night.  68mls total.  (a bit better than last night).  We have noticed that Rachel doesn't like to be touched or moved much these days.  That's tough - I want to cuddle with her but it doesn't usually work for long.  I just talked with our Palliative care doctor this morning and she suggested trying to drop some milk in her mouth with a dropper (as it seems like she is still hungry but can't for some reason keep sucking).  We're going to try that for awhile just to see if that helps her to be more comfortable.  But it may still be something like the cold or flu and she might not want it anyway. 

Dave is taking the kids to the dentist today. Ethan has two cavities and Abigail has one.  Yup, we haven't been that diligent with brushing the past year.  I guess it could just as easily have happened if we did.  But I have delegated Dave to take them because I'm too nervous.  Ahh..life feels out of control for us these days.  We have been dropping so many balls.  So, If you are still waiting for an answer to your invitation or questions or email etc...I'm sorry! I am reading everything and I so appreciate your efforts and thoughtfulness.  But we are kind of in survival mode here again and I can't think straight enough to respond right now. Thank-you for your understanding.  Some of you have asked how you can help - or given me strict instructions to call if I need anything;) I hope it's ok if I just give a blanket answer.  Meals would be the most appreciated right now.  (freezable stuff is best) I have a hard time admitting we need help or asking for it (or even knowing what we need half the time!) but this is one more or less constant need. Thank-you:) 

Monday, May 30, 2011

The Day

Nothing new.  Rachel is still just eating tiny amounts at a time.  (5 mls or so).  But she did pee tonight and we think this was the first time today.  And now just before she went to sleep, she had 20 mls.  No smiles today at all.  She was fussy, she seemed uncomfortable, and it seemed like nothing soothed her.  She seems very congested.  Sometimes she seems terribly hungry and she will suck at the bottle but then pull away and cry.  Does she have some virus or is it something else? Don't know.  I just hurt for my little girl.   
Thank-you for your comments and for sharing scripture with us.  And I know there are people who don't comment who pray for us too.  Thank-you.

One Year and Nine Days Old

From the bottles we gave the respite worker last night, we see that only 70 mls of milk is gone.  This means that in a 11 hour period, she only drank this much (and it was probably even less than this bc when rewarming the bottle, the top half often gets partially lost in the sink) She seems so life-less this morning.  We miss her smiles, her personality....and I can't help thinking that we won't see much of this again. 

About the conversation with the Doctor, the basic gist of it this: It is important to follow Rachel's lead about food.  If she doesn't want it, we shouldn't push her.  Feeding her at this point might even make her more uncomfortable.  I knew all this, but it still came as a bit of a surprise.  It was a tough reminder again of where we are heading, where we have always been heading.  It's hard too because she seems so unhappy and usually that means she wants to eat.  And now it is something else and we don't know what to do for her. There was a bit more to the conversation but I think I'll just leave it there for now.  I'm off to the gym this morning but it feels so hard to leave her today..

Sunday, May 29, 2011

Last Page of Rachel's first Blog Book!

How is Rachel?  Well, she still has very little energy.  She is still eating only small amounts at a time and generally not happy.  Weak bottle sucking.  Her fontanel is quite sunken and she isn't peeing.  She isn't moving much.  It is very hard for us to see her like this and we worry for her.  Is she getting worse??  Maybe.  There are signs of this being the end but we have been here before and so it is still hard to say. I had a conversation with a doctor that I want to write about but I will save it for another day. I'm having some trouble sleeping again. I keep waking up at 3am, and other times I jolt awake feeling panicked that something is happening with Rachel.  The good news though is that Dave is on holidays this week and we hope to do some relaxing and re-connecting!  Also, because of our extended stay at the FH, we can have in-house respite ALL WEEK!! This is a big deal, especially with Rachel not doing well right now. Thank-you so much for your prayers for us. Good-night!

(added later....)
This is going to be the last page of my first blog book of Rachel's story!!  I want to end with a verse that has carried me through the ups and downs of the last year and a half.

I WOULD HAVE DESPAIRED........UNLESS...... I had BELIEVED that I would see the GOODNESS of the LORD in the land of the living. Wait for the LORD; be strong and let your heart take COURAGE; Yes, WAIT for the LORD! (Ps. 27:13.14)

A year and a half ago, we shared with our church the grim news that the baby I was carrying, had alot of problems, and that she would likely not live long after birth. And now here we are - celebrating her birthday! What a year it has been! In many ways, it has been a very difficult year. Full of tears and exhaustion. But there have been signs of God's goodness to us too. And there has been alot of beauty. A year and a half ago, I could not have seen how true God's words would be, in our own situation.  We were in the dark but we chose to believe God anyway. We chose to believe that God would bring beauty and good out of our situation if we would trust Him. We chose to wait to see what He would do. And God was true to His Word. And so we will continue to wait and to believe that we will see His goodness yet again, even in the hard days that are yet to come.

We will WAIT for the LORD.....we will wait and we will put our TRUST in HIM.  Because only HE can make anything new!  Only GOD can bring BEAUTY from ashes.   

Big Birthday Photos

Fruit Tray made by one of our Respite worker's husband. He's a Chef.  Isn't it cool?  The watermelon is crafted into a baby carriage, strawberry roses etc.... Thank-you!

I actually did manage to make the butterfly cake afterall! (thanks to a friend who watched Abigail for me Friday am) It's kind of a long story.....but in the end I was really glad that I had done it.  It felt like an accomplishment.  Way back in my pregnancy, I had planned to make a butterfly cake for her first bday - thinking that she wouldn't be here.  It feels like I did the mommy thing for her.  I know it doesn't mean much to her but I felt good about it. 
And someone else also make a really nice butterfly cake too, and there was a piggy cake, and 'rose' muffins and home-made chocolates and strawberries...!!!

I think that's me blowing out the candles for Rachel. 
AMAZING....thank-you to those who brought all this yumminess! You didn't just make cakes, you crafted them. Wow.  

Ethan and Abigail enjoying some cake and ice cream.
Behind them is a wall decorated for Rachel, with stickers and Rachel's name..
Our camera was locked up in Dave's office for awhile so I'm glad someone passed on these pictures for us. Thank-you:)

About to light the candles....
Someone told me today that when we sang the Happy Birthday song, the Sun came out and shone brightly and then after we were done, it went behind some clouds again.  I hadn't noticed that - but I loved hearing that this happened. 
Another cake given to us that didn't end up on the table...with little baskets of chocolates for the kids. 
We also got a yummy coconut cake that we are slowly devouring.
The party was a great ending to a not-so-great day.  Too bad Rachel missed the party. She wasn't feeling too good and spent most of it in the office area.  But we were so encouraged by your support! You are one very loved little girl Rachel.

Saturday, May 28, 2011


We had a great party last night! I am SO GLAD that we could celebrate her birthday with you. Thank-you for showing your support for us in all the many ways:)  I am deeply grateful to you...

We are having another tough day.  Rachel is still not eating (she sucks a few times weakly and then stops).  And she is very unhappy.  It seems like she is in pain for some reason and I don't know what to do for her.  She's needing alot of care today. On top of that Abigail caught some flu bug (sorry to all the kids that played with her last night!!!! We had no idea she was sick...) and she has been throwing up.  Rachel might be dealing with this too, on top of trying to recover from the spells.  Ethan has a cold.  And so because of this, we partially moved home today.  Dave is busy out here in this area today.  The kids missed a birthday party today that they were so excited about. I'm going to go back to the FH tonight with just Rachel and I'll return in the morning.  More ups and downs, plans fail, more changes. I've got the words to a song by Christa Wells in my head today."Everything moves but You." It seems fitting for days like these... 

Friday, May 27, 2011

"We were crushed and completely overwelmed, and we thought we would never live through it.  In fact, we expected to die.  But as a result, we learned not to rely on ourselves, but on God who can raise the dead." - 2 Corinthians 1:8-9

Another Bad One...

Another bad spell at 3am this morning.  We gave her four doses.  This time I was shaky and emotional and wanted no jokes.  There is something about these night spells and being woken from a dead sleep that is so very hard.  Last night I went out to get groceries for the party (and did some stuff at home) and I came in after 11pm.  I talked with the RN for a bit first.  She asked me if there was a pattern to when these spells occur and I told her that she has had a few at 3am already.  And that's what happened last night.  She had been sleeping alot and not eating again.  (I think she ate once between 6:30pm and 3am) This spell felt so bruttally hard - I was scared, panicked even, that she would leave us.  The reality hits home again and again.  But I love her so much! And it hurts so much, that I feel sick to my stomach. 

I don't think I slept at all after the spell.  Dave and I talked afterwards for awhile.  He told me something else the Cardiologist had said.  In her opinion, the fentanyl probably isn't helping to open up her bloodflow.  It is really a mystery as to why her body recovers from this.  Maybe the babies that are loved just have an extraordinary will to live...and I also believe that God knows the right time for her to go. 

Thursday, May 26, 2011

More on the Echo

More news on the echo:

1. On the one pulmonary artery that can be seen - there is a significant narrowing at the 'duct'.  (the place in the artery that shuts in her spells) This is the most significant change that we have seen in a long time.    

2.  Her STATS:  63% (oxygen level)

Update and Echocardiagram

Rachel is doing better today. She was awake for most of the night - no surprise, because she literally slept ALL day yesterday.  I did get to dress her in some of her 'new' sleepers I picked up at the used kids store nearby.  I know this sounds strange but when she almost died yesterday, one of my thoughts was, 'oh how sad, I might not get to try those clothes on her..'  It is weird sometimes, the things that cross my mind in the middle of these situations.  Yesterday during her spell, there was some music in the background that reminded me of a movie, in which someone gets word of a death.  And it made me laugh. Strange humour relief.  I have talked to other parents that go through this and they say the same things.  One parent told me that when her daughter was seizuring, she was annoyed because her husband had put her down on the floor and she was covered in sand from outside.  I guess it's a 'new normal' that I wouldn't have understood unless we were in it ourselves. Still it is a 'new normal' I would rather live without.  There's alot about myself and my ways of dealing with this that I don't understand. But I do know that with each 'crash' we experience afterwards, I need to lean on God for strength - or I would be so lost.  I don't know how else we could keep doing this over and over.        

I just talked with Dave on the phone.  He walked Rachel over to the Hospital for her Dr. appointment. She just had her echo.  As usual, she could only see one pulmonary artery.  It is likely the only source of blood flow that she has to her lungs and it's diameter is roughly 1 1/2 - 2 milimetres.  I don't remember what it has been before.  But that is pretty tiny!  Yesterday during her spell, the attending doctor told us that medically speaking - it is INCREDIBLE that Rachel is able to recover from these spells, given how minimal her blood flow is when she is 'ok', nevermind the effect that having no flow to her lungs does to a body.  (if there is any flow during the spell, it is extrememly minimal).  God could still take her peacefully in her sleep (what we ask for!) but it does look very likely that this is the way that she will die.  There might just be one spell that will go on too long for her body to handle.  I really need to keep leaving this in God's hands and trust that whatever the time, or way that she goes - that He will be with us in it, helping us.   

One thing that comforts me is that she is likely not in pain once she is in the full blown part of the spell.  The doctor explained the reasoning for this yesterday - something about how her brain kind of shuts off, but I forget now.  She also said that her hard breathing is her body maximizing on the tiny oxygen she is able to get in.  (her glotis closes too) But she is likely not conscious of what is happening.  I find the stage just before the spell really starts to be the worst - because it seems to me then, that she is very uncomfortable and her cry is so strained and high. 

I was intending to pack up this morning but we just got word that we can stay longer!  There have been some cancellations.  This is good for us because we are running low on respite hours.  We will stay until tomorrow morning for sure, and maybe longer.  

Tomorrow night is her Birthday party!!!            

Wednesday, May 25, 2011

Well my suspicions were right....Rachel just had a massive spell.  And it went on for a longer time than usual.  We used all five doses.  Dave is two hours away for a meeting, so for that reason I am glad this wasn't the end yet.  But at the same time, I feel sad for her that she can't go home and leave these spells behind her. I'm sure glad we were at the FH today.  I'm been holding her here and typing with one hand. Poor girl - her body was working so hard to live.  She is so tired. God, give us strength for today.

Butterfly Cake

Rachel has been sleeping ALOT in the past few days and nights, which usually means something is coming.  It is SO hard to not allow my thoughts to rush ahead into the spell that is coming.  I feel on guard again.  This morning I was talking with one of the nurses about ordering more drugs, and I think we woke Rachel up from one of her naps.  And she had that strained cry again, the one that sounds like she doesn't have enough air.  And so....I am rethinking my plan to make a cake for her birthday on Friday night....It is hard for me to give this up - I would have loved to do it.  But I know I need to let it go, for my own sanity;)

This is the cake I was hoping to make for her...although I am quite sure my attempts wouldn't look anything like the picture;)It is a bit intimidating to make one shortly after that masterpiece we had a few days ago...but it would still have been made with love:)

I came across this quote that a photographer added to one of my maternity shots, and I thought it fit us well. Hence, the butterfly idea...
"A butterfly lights beside us, like a sunbeam...
and for a brief moment it's glory
and beauty belong to our world...
but then it flies on again, and although
we wish it could have stayed,
we are so thankful to have seen it at all."

By any chance, would there be someone reading this, who would really enjoy making this one for Rachel's birthday party on Friday night? If you have another butterfly cake you like better, feel free to use that one instead.  I know it is kind of late notice. I will gladly buy a cake from Safeway or elsewhere tomorrow...but I thought I would put this out there just in case there is someone who would jump at the chance to do something like this.  Send me a note by email if you are interested.  Thanks! 

Tuesday, May 24, 2011

One Year Ago

There is SO little time for reflection these days....but I did briefly look back at some old posts to see which day we had moved to the Flames House.  I found these words on May 23.  "What a couple of days it has been! Full of blessing, full of difficulty, full of tears. Tomorrow we are being transitioned from the Foothills Hospital to an incredible facility for families with terminally ill children - the Rotary/Flames House Pediatric Hospice. We’ll have room for our other kids to live there with us, meals will be made for us, and we expect to spend the rest of Rachel’s days there together as a family."

Rachel was NOT happy with this car seat idea.  And I remember feeling stressed about her crying because she was having some trouble with mucous etc..
There's Rachel!! I rode in the ambulance with her for the 10 minute drive.  Ethan was offered a ride too but he wanted to go with Grandma instead!
Just Drinking her in.....
The other day I was remembering those first days in Hospital - there is one memory that still makes my heart hurt to think of it.  It was the walk down the hall to Rachel's first bath.  The kids walked so proudly next to their new sister and Ethan told the bystanders (many who were holding their own new babies) that this was his new baby sister.  He was so proud.  And my heart felt so broken to hear it.  But to everyone watching, we were just like any other family walking down the hall. Oh, a child's love for his sibling can be a beautiful thing. (emphasis on 'can be';) )
And now I say....what a year it has been!!! ok my kids are going wild in the hall........really need to get going!!! We are staying at the Flames House until tomorrow now.  We have a Doctor's appointment (with a booked echo) and we will move home after that.

Monday, May 23, 2011

Birthday Cake!

Rachel even had some of her cake!!!!! Dave tried giving her a bit just for fun and she kept opening her mouth for more...We had so much fun watching her. She barely eats any solid foods - except for some oatmeal now and then, so this was pretty neat!

Birthday Pictures IV

Birthday Pictures III

She LOVED playing with the ribbons on her present and with her balloon...
Crazy Dave...
The kids even received presents from the Flames House.  This teddy bear is Rachel's.  And they came with a signed birthday card from the Staff.  Thank-you Rotary Flames House!

Birthday Pictures II

With Great - Grandma Kornelsen, waiting anxiously for the ok to put the candles on the cake
Ethan was very busy the previous day getting his presents ready.  One package held a baby monster truck.  Abigail helped Grandma shop for the present with the bow.
Pretty flowers for a pretty girl...

Rachel's Birthday!!

Rachel's birthday day was an 'off' day for her. She seemed ill at ease and unhappy for most of the day.  And when 6:30 rolled around, we thought she might even go back to sleep and miss her own party.  But we brought her down to the kitchen to meet the guests and she suddenly perked up!! I took tons of pictures.  Here are some of them. More to follow later....

Oh, and before I forget - we weighed Rachel and she is now a whopping 8 lbs and 4 1/2 ounces!!! We thought she had been gaining some weight.  

Birthday Sleeper from Grandma, an appropriate ice cream cone....
The Cake.....isn't it amazing?  The sheep was made from rice crispie squares and the cake was layers of strawberry and chocolate.  Thank-you Joe!!!
The Detail...
Abigail admiring the Sheep..
Birthday Balloon!
Grandma Funk with Abigail (and Great Grandma Kornelsen in the background!)

Saturday, May 21, 2011

One Year Old

We could never have imagined that we would be celebrating Rachel's BIRTHDAY!!! Happy Birthday little girl.  We love you so much!!!  A lot of memories are flooding back of our first stay here at the Flames House a year ago.  God is Good.  I'll post pictures tomorrow, of the AMAZING cake that our chef has made for her...he has really set a new standard....WOW.  David and I went out for brunch this morning JUST THE TWO OF US!  I can't remember the last time that has happened.  Then my mom and I went out to buy her a special helium butterfly baloon and some flowers and now we're off to find some new 3 - 6 month sleepers for her because she seems to be outgrowing all of hers again!!

AND......Rachel's Great - Grandmother is here too!!!! She decided last minute to come with my aunt and uncle, cousin, and mom.  She packed in half an hour.  What a BIG surprise to see her here last night too!  So glad they can be here for her special day. 

Thursday, May 19, 2011

Rachel's Tree

We planted a flowering crab tree in our front yard today! It was really a Mother's Day present but I soon thought of it as Rachel's tree.  I love that it will bloom flowers near or on the time of her birth! Sadly, I forgot to take a "before" shot - but just picture a really big ugly rock, surrounded by a creeping ground plant.  Somehow I think our battle is not yet done with this crazy plant....but we'll get you yet! Ethan was feeling pretty sentimental about 'his rock' and he wasn't too happy with it's new 'special' home in the car port.  We promised that we would put a few flowers around it in it's new location and told him that he could visit it any time.

It is so wonderful having my mother in law around!  Today, the kids got McDonalds and play time with Grandma! And I got a big project done today that has been hanging over my head for awhile.  I organized all the best pictures from our pregnancy to the present, in a file.  I am passing this on to someone at the Hospital who offered to make a photo book of Rachel's first year.  It was a big headache getting them sorted - we have pictures all over the place.  But it's finally done!  And what a fabulous gift! I am starting to realize that this is definetely something I would not want to work on after she dies.  And yet I want something that I can physically hold in my hands to cry over and maybe even share with people who come into our home. I found myself getting emotional looking at the pictures from her birth day.  What strong memories these photos evoke!  Tomorrow we move into the Flames House for about 5 days.  In about an hour or so, my mom arrives from Manitoba! I might still be awake.  I'm finding it very hard to turn off my mind today.  Maybe it is the walk down memory lane that did it for me.

God is Good. I have had the words to a song by Gungor in my mind the past few days.
You make beautiful things,You make beautiful things out of the dust
You make beautiful things, You make beautiful things out of us
All around, Hope is springing up from this old ground
Out of chaos life is being found in You

God, help this little tree to live and to bear fruit.  In the same way, cause fruit to grow in our lives too.  As you did for Joseph, make us fruitful in the land of our suffering.   

Wednesday, May 18, 2011

The Zoo

We are doing ok, I think.  So often I marvel at how we go through these intense spells with Rachel, she almost dies and then almost immediately we have to carry on with normal stuff, work phone calls etc...It is necessary in many ways.  We just have to, I think, to stay sane! As usual, I find the impact of it hits a day or two later.  Rachel was doing better this morning and so we joined Ethan's preschool class in going to the zoo today.  Ethan rode there in the school bus with his classmates and we drove.  We had a bit of a nerve-wracking time between the lemurs and the gorillas, when it seemed to me that Rachel was having another spell.  She was just coming out of another sleep.  Of all the awkward places for this to happen, this was way up there!! But thankfully she was ok.  She is definetely muted today but she has given us several beautiful smiles too:)
With one of several Triceratops at the zoo...really, why are there so many of this one kind?? We spent most of the time with Grandma but Ethan rode the bus and we joined his class for lunch.

Tuesday, May 17, 2011

Rachel just had a spell - the worst one since our drive back from Manitoba.  She had been sleeping for about three hours and I was feeling a bit nervous about that so I woke her up and it started soon after that.  Dave's mom played with the kids downstairs and Dave arrived just in time to help give her the first dose.  We gave her the maximum amount.  Her breathing was especially 'rattly' this time.  Our palliative care doctor suggested taking her outside to see if the breeze would help her to breathe. Not sure if it helped.  It seemed like forever until she started pulling out of it.  This is so hard.  I was having such a good day and our world was just rocked again.  Thank-you for your prayers.

Monday, May 16, 2011

She was so CUTE at supper-time that I had to take some pictures...

Her little feet were just going - lots of twirling and thumping on the chair. 
Rachel was SO happy today.  I got so many giggles out of her.  A faveorite moment for me was taking her in to the kids room (where they were suppossed to be having an after lunch rest) and letting each of them 'bite' Rachel's side and thighs to get her to laugh. The kids just roared with laughter to do this.  I think her thighs are definetely getting more flesh in them - it will be very interesting to weigh her this next Friday.  These past few days have been really good for her, and so that means we do better too! And all this sunshine we are getting is good, so good for our hearts....       

We missed our normal Monday "Sabbath" routine today.  It's usually Dave's day off from work and we usually give each other some time on our own, and then do something as a family.  But Dave is in classes all week.  And so it is really great timing for us that Dave's mom is coming out tomorrow afternoon!! I have lots (probably too many) little projects that I would love to get done now that I have the energy for it.  My mom is also coming a few days later with a few other extended family members.  I love that they will both be here for her real birthday in 4 days at the Flames House.

Friday, May 13, 2011

A Birthday Invitation!!

You are warmly invited to join us in celebrating......Rachel's One Year Birthday!! (I know, I still have trouble believing it myself!!) She has brought so much beauty and joy into our lives. And we are changed people because of her. God has given us strength and courage to journey through the trials and uncertainties of the last year and a half. And we praise Him for the ways that He carried us through, and for how He will continue to carry us. Come celebrate with us!!   - David & Kendra, Ethan, Abigail, and Rachel Funk

These are the details:
What: "Come and Go" Birthday Party. We will be having coffee and dessert. We will light a candle and sing for Rachel around 7:30 pm.
Where: Abbeydale Christian Fellowship Church
1352 Abbeydale Drive SE, Calgary AB
When: 7:00 pm on May 27th (Friday)

One year olds have very little need for presents.  So, all you need to bring to this party is yourselves, please!! (unless you have been planning on a specific gift or if you have already bought something already) If you do want to give something, please consider giving to the *Compassion Canada Medical Response Fund (I will have forms at the party) Rachel has received some of the best (if not the best!) medical care that our world has to offer. But there are so many children who die and suffer from illnesses that could be easily treatable if only they had access to proper medical care. I am so thankful that we have the means to ease Rachel's pain, and it pains me to know that children are suffering all over the world without this. It would bless us greatly to know that Rachel's life could make a difference for another child!
"There's no way to be a perfect mother
and a million ways to be a good one."
~ Jill Churchill

I stole this quote from a friend.  I love it. 

"I'm a Little Monkey" Video

Something strange has been going on with blogger lately...and now it looks like a few of my last posts have been lost.  Ok scratch that. Now it looks like the posts are back but not the comments.  I know there were several that I did not read.  So if you are wondering if I read yours or if you are expecting a reply and haven't gotten one, that's why.  I'm sorry!  This also makes me think I had better finish backing up my posts elsewhere just in case something else crazy happens!!  I had always thought I would wait until Rachel passes away before I get the blog printed, but maybe I will go ahead and make her birthday the last page of the first book.

Yesterday, I finally moved Rachel's clothes from our living room to the kids bedroom.  (they were in a clear container sitting on the piano) Not sure what took so long to do that.  Dave made a comment afterwards that struck me.  He said something like "we've been living for a long time as though this is all temporary." He's right.  If she had been healthy, we would have changed our office into a baby room, set up the crib and a dresser.  These clothes might have sat in the living room for a few months, but no more. And yet here she is, almost one year old! Definitely time to move her clothes off the piano...     

By the way - we are planning to have a party for her on May 27th - Friday evening - at our church.  I'll post more details later.  This party is open to everyone and anyone who wants to come and celebrate with us! We're going to have a little party on her actual birthday, a week earlier, with our family and the staff at the Flames House.  I hear that our chef might make another cake for her...he he...I'll post pictures:)  I'm kind of hoping  that I might be able to make a cake for her big birthday too. (yes, this is probably insane) We'll see... 

I'm going to try and post a video we took this morning.  Sadly, she ended up having a few very difficult hours shortly after the taking of the video.  I had a hard time deciding if I should give her fentanyl but eventually I did because she seemed to be in distress.  (blueness, high pitched cry)  She also didn't eat all morning. (she just ate now at 2pm, her first one since early this morning) Abigail showed amazing patience because I had promised her a tea party. And we did eventually have a quick tea before I suddenly realized that I needed to get Ethan from preschool.  Anyway, Rachel absolutely LOVES being held upside down.  And we even caught some little laughs on this one....

oh SHOOT - I can't believe I did it AGAIN.  I keep taking these videos with the camera turned vertically....so if you don't want to watch it sideways, I guess you could always turn your screen???

Wednesday, May 11, 2011

Flu Virus?

well, I just posted something I wrote earlier today.  And things have changed again for Rachel.  (story of her life) She has been so fussy tonight.  For a little while I thought she was having another spell - her skin was so clammy.  I am nervous too that she is getting this really bad virus that I had last night.  (including some of the worst stomach cramping that I have had in a long time.) I am still feeling nauseated today. I'm hoping that it was really just the Vietnamese I ate on our date on Monday night - and so far it's just been me that has gotten sick..

My Therapy

Rachel has had a few really great days.  She has been so strong.  I think I am doing alot better too - there has been alot more light in my life lately, literally.  Thank-you God for blue skies and sunshine!  Yesterday morning I sat with the kids in the sunshine while they colored paper scarecrows for the sandbox (to scare the cats away - Ethan's idea) - and I knitted, and I felt some of the joy creep back into my soul.  I think I started this doll sweater just after Christmas and I gave up after making a silly mistake.  It felt really good to be doing this again.  Even last night when I felt this really bad flu bug coming on, I kept knitting away.  Someone told me recently how her counselor had advised her to do a mental activity, like sudoku or crossword puzzles - because this can help break the cycle of our sad thoughts.  I find knitting to work a bit like that.  It's so therapeutic for me sometimes.  
"Dolly, you need to spend a few minutes thinking about what you did wrong.  I don't want to see you coloring your body with marker again...."

There are sweat pants to match....maybe I'll get those done by next Christmas?:)

Speaking of therapy for pain....I have been chewing over something I read in my devotional yesterday.  Maybe I'll just paste it in here:

"The week after Hope died, I was sitting on the couch reading a book by a man who had lost a child.  He wrote, "There's only one thing I've found that helps with the pain." You would have thought I was in the desert and he was telling me where to find water.  I wanted to skip ahead.  I wanted to know.  What is it that will soothe this enormous ache inside me? Then I read it: "serving others." Honestly, I felt disappointed.  That's it? I thought.  A part of me said he was just a preacher who was giving me the party line.  But I also thought that someone who has hurt like he had hurt would not lie to me about where to find comfort.  And so even though I didn't really believe him, I decided to put what he said to the test. I was desperate." Nancy Guthrie

And so Nancy did put it to the test.  She helped a widow move into a new home - and her focus moved from her own pain to someone else's.  She said that in her own experience - it is the reaching out to others in the midst of our own pain, uniquely because of our pain that is the secret to lightening our unbearable load. I feel like maybe I should add a disclaimer.  Grieving people need to be given ALOT of GRACE.  As a people pleaser, and as a firstborn who wants to do everything right - even grieve properly, I can easily succumb to false guilt that I am not doing this right or doing enough for others.  But there is something in this story that rings so TRUE.  In fact, I know this to be true in my own life. What about you?  Has this also been your experience?   

Sunday, May 8, 2011

Mother's Day

Wow - I never thought I would have a mother's day with Rachel!! (outside my womb that is) I think I have been so lost in a cloud of deep sadness this past week that I only just realized now what a gift this has been.  The respite worker took her downstairs for the night but a few minutes ago she was sitting in my arms - smiling and hitting the edge of the desk with her feet.  She has had a few good days - a nice reprieve for Mother's Day.  Also, there's one new development that kind of snuck up on me that I haven't noted here on the blog.  Rachel can roll from her back to her side now!! (on her strong days)

I am so blessed to have a wonderful mother who gave birth to me and raised me with love.  I am also blessed to have a wonderful mother in law whom I deeply appreciate.  I wish we could have been with you both today. The kids would have loved to shower you with home-made cards.  You are LOVED!!! Happy Mother's Day!!

Today I have thought alot about my friends who are still Mothers, even though their children are not here with them.  I remember my first mother's day after our miscarriage.  Our Pastor and his wife brought a flower to our apartment and told me that I was still a mom.  Other family members said similar things to me. That was really powerful for me.  Although I can't send flowers out to all my hurting friends, you are certainly on my heart.  Faith's Lodge's post on FB today reads..."While this can be a bittersweet day for many of us, may today remind us all that whether you hold your child in your arms or only in your heart, you are a mom. To the very special mothers who have had to say goodbye to their children too soon, we wish you a peaceful Mother's Day."

Yesterday evening, Dave and I (and the kids) were driving to a friends' place for dinner.  We were both feeling pretty gloomy and the skies mirrored how we felt.  But then we noticed these shafts of light breaking through the clouds.  It was so beautiful.  I really needed to see that.  It was like a reminder to me that this sad time won't last forever.  The light will find it's way through again. So this is my prayer tonight: "ok God, I will wait and I will keep trusting You.  I don't see much of the light right now and I'm a bit scared of getting caught in this vortex of blackness forever...but I will wait.  I will trust.  Please carry us through."

Friday, May 6, 2011

Play Structure

Last night my brother and his girlfriend came over to help us set up our 'new' play structure!!  It was alot more work than I had anticipated it taking, but we're so glad we did it - and for a great price too:)  Ok Grandmas, here are the promised pictures!!

The bottom area will be the sandbox - and it's a really decent size! Anyone know where we can get some good cheap sand? The top isn't done yet - there's a tarp that goes overtop.

Uncle Kelsey and Abigail

Jill and Ethan


Thursday, May 5, 2011

"Trust in the Lord with all your heart
and lean not on your own understanding. 
In all your ways acknowledge Him
and He will make your paths straight."
Proverbs 3:5,6

Dave took this picture at Nose Hill Park last Monday.

Party Shots

We are relieved and glad to see that Rachel is doing better.  She had a much better day yesterday and she seems happy again today. And yet, at the same time we feel run-down and heavy with sadness.   The last few weeks have been so tough. Maybe it has something to do with it being May and it being Rachel's birth month.  I find myself sitting by the window, just staring out, or pacing uselessly around. I have so little desire to do anything these days.    

Yesterday though I took Ethan and Abigail to a party.  It was put on by friends of ours - they started the organization Alexander's Quest.  This party was to raise money and to increase awareness of childhood cancer and brain tumours.  They did an amazing job! And the party was in an airplane museum too! Here are some pictures....

There's a place in Calgary called "Edible Arrangements" that makes these...

I saw my friend Jenn getting her daughter's name painted on her arm, so I got Rachel's name done too.  Abby went to be with Jesus in January of this year.  What a tough road we are all on...

Tuesday, May 3, 2011

No more spells but Rachel is definetly not herself.  I think she has her days and nights mixed up again, but she doesn't sleep long either.  She is restless and unhappy, sometimes pretty blueish.  She had a hard time pooping this morning - so maybe the oatmeal yesterday wasn't a good idea? Yesterday I felt so restless too, it was super hard to focus on anything in the house....except one thing. I got pretty obsessed with finding a used play structure for the kids and I think that's where I poured all that nervous energy.  We did finally get one but this job literally took all day - including one useless trip across the city for Dave. (those kijiji pictures can be deceiving can't they?) My brother is coming over sometime to help set it up. The kids are SUPER excited to see their uncle Kelsey! Thank-you:) It has a few swings, a sandbox, a little fort on top, and a slide. I am so looking forward to having something for our kids to entertain themselves with in the backyard. (and share with their friends) We get out so seldom these days and we don't know what the summer will bring.....

oh boy, do I ever need some 'get up and go' today.....can I buy that somewhere??

Monday, May 2, 2011

Another Spell

Rachel just had a spell.  We were in the middle of making plans for the day.  I was going to take the kids to a park and be back so Dave could go pick up a play structure we found on kijiji....and then suddenly everything was put on hold. The kids got thrown in front of the TV again while we took care of Rachel...oh what is our life?

ok...change of plans...picnic in the back yard.. Dave is going to watch Rachel inside. She's sleeping now. I can hear Ethan asking (in tears) why we can't go to the park.  Ethan has such a hard time already with any change in plans.  And Dave is telling him that we can't go to the park because Rachel is having a hard time..oh this is hard...please pray for our family, for our kids.  This is so hard for them to understand. 

to answer your question Amanda - the spells don't have anything to do with medication.  We give her fentanyl after her spell begins and she was having spells long before we gave her this drug.  We do believe that it is helping her - she visible relaxes not long after we give it to her.  (her body is still in distress but she doesn't seem conscious of it) And it works so much faster than the morphene did.  One doctor told us that she was quite certain that Rachel would not survive these spells either, if it were not for the fentanyl.  We think that the fentanyl even works to open up her arteries. I'm so sorry to hear about your Mom.  I have never heard of that happening before. 

Sunday, May 1, 2011

Puffed Sleeves!!

Thank-you again for your prayers and notes.  I couldn't get to sleep until 4:30 last night.  But Rachel slept well all night and she is doing well today. I am feeling better now also (what a rollercoaster...) and I even had a wonderful nap.  Rachel wore another new dress to church this morning - we just got this one a few days ago from a friend. In the first picture, it almost looks like she has red hair:) I remember wanting red hair so badly when I was a little girl.  Didn't you? Oh, Anne of Green Gables would have been so jealous of you Rachel..puffed sleeves!

I just had to stick these ones in too.  This is where Miss Rachel "sleeps" (or is supposed to sleep!) at night.  When we do respite ourself, Dave and I take turns trying to sleep in this bed next to her.

A friend of ours sent us the lyrics to a song they had heard in church this morning.  Geoff Moore was doing their worship - imagine that!:)  I cried when I read this because it fits so well with these days that we are in.  This is my song for today. Here are some of them...

When the waves of fear come crashing down
When it's hard to hear over their sound
Though my voice may shake
Though the ground may quake
I believe, I believe, I believe

Believe in the way that you have set me free
I believe in the truth of all you've said to me
I believe in the life that you have given me
I believe, I believe, I believe

When the trumpet call is finally heard
And we hear the voice that spoke the word
Every fear and doubt
Will be cast to the ground
At the feet of our King
Let all creation sing
(Hallelujah to our King)