The Funks have Christmas in November

Rachel was awake most of the day - very surprising because of the marathon she 'ran' this morning.  She was very content though and we continued with our plans to celebrate Christmas with Dave's parents.  These are some pictures of our day together.  It was a good day.  I can feel some of the anxiousness returning - especially now that we know her 'spells' may have nothing to do with the strain of a bm or hard cry.  And so I was glad to spend this day with them - and watch our kids open presents and play and enjoy a special brunch here at home.  Even Rachel had a stocking to open and a toy to play with. Thank-you Mom and Dad!

Daddy and his little girls



Reading a Christmas Story with Grandpa

Having a Good Time with Grandma!
"She's letting me kick my legs without a diaper on..."



Shaken but In Good Hands

 

This candle reminded us of Rachel's life - a small light - but held in God's hands.



Holding Mommy's Hand

Holding Grandpa Funk's hand

Spell Number 4

Rachel had another 'heart spell' at 5:45am this morning...it was terrifying and horrible. The difference this time - it was not connected to a bm, it just happened out of the blue. thx for praying. We need God's courage and peace.  She seems to be fine now. She even gave us some smiles. She's wearing a little sleeper that says "My First Christmas". We are planning to celebrate Christmas with Dave's parents later this morning. We will write more later.

Dave read this in his book of common prayer this morning....

"The Lord is righteous in all his ways and gracious in all his works. 

The LORD is nigh unto all them that call upon him,

yea all such as call upon him faithfully.

He will fulfill the desire of them that fear him

 and he will hear their cry,

and will help them."

Psalm 145:18-20

Please pray...

Dave and I are at the Flames House with Rachel tonight.  Our respite workers are grieving the sudden loss of a family member. Please pray for them. 

This world can be so unbelieveably ugly and cruel.....

And in the same world - there can be incredible beauty too....

Rachel has been SO happy today.  I don't think I have EVER seen so many smiles in one day. This morning in church, she was just beaming - she must have loved the worship music.  I admit, there are so many Sundays when I wonder why I go to so much effort to get to church.  I sometimes feel like all I did was look after the kids (and doing that would have been much easier at home!).... every conversation interrupted...and any significant meaning lost because I couldn't concentrate.  But today was different.  Thank-you God for the glimpses I saw of You this morning.  In the beauty of my daughter's smiles. In the faces of those who choose to trust you even when the way ahead is unclear.  In the songs and the scripture that was read.  The reminders of the Big story we are a part of...

I'm really blessed too by wonderful friends who have been helping me get the kids in our van Sunday mornings! (and ride with us) Since Rachel's "spells" I have been too scared to drive with her by myself. And Dave needs to be at church earlier now.  I have been blessed too by friends who help out with our kids in church too.

Dave's parents are out! Yay! We're so glad! And they came with loads of Christmas cheer.  Presents and lots of food.  The kids are so thrilled about Grandpa and Grandma being here! (and I don't think it's just the gifts sitting under the tree..)

ahhhh She's sleeping...

We just had another night to remind us why we have respite!  Rachel was wide awake from 3am until 8:30am.*  Dave brought her upstairs to me around 6am.  He wanted to do some studying with her in the first half of the night so I'm not sure how much sleep he got! 

*Rachel only slept till 9:30 and was basically up until 3pm (with one little cat nap in my Aunt Barb's arms) She only had one hour of sleep in a 12 hour stretch....that was very unusual for her.

Good news though - Abigail is fine!  I even have my doubts that she had the flu at all.  I wonder if she just threw up with her coughing.  It's so dry now - especially at the Hospice.  Thank-you everyone for your notes and prayers for us.

I have not been a great friend lately.  No, it's true. I haven't.  I have been forgetting to get back to people about getting together, I don't even feel like initiating a get together sometimes.  I'm so sorry.  The friends I have are very important to me.  But I have been feeling like I am always somewhere else - lost or distracted.  Some of you have been patiently 'initiating' for almost a year now.  I know what we are going through must be hard to understand sometimes.  I don't even understand the changes that are happening in me.       

Yesterday morning Ethan was at playschool and my neighbor friend had Abigail - she had some other little girls there too so Abigail had such a blast with them.  I was taking advantage of the time and cleaning up the house - and suddenly - no warning - I was sobbing. And I could not stop.  I had not cried in a long time and although it was so hard - scary even - to walk into some of the pain and disappointment again - it was good to just let the tears flow. I was thinking too of so many of my friends - connected to the Flames House, and those I know in church, who are going through hard times right now.    

And then I just sat next to Rachel...and watched her....and marveled at the beauty of her hands.  So tiny, so delicate, so expressive.  And I stayed there, in that moment for some time.  It was so good to just be in that moment with her.  So good for my heart..  

The sideways soother is becoming a "Rachel thing".
(yup, she sticks it in that way herself - and often holds it in with one finger)
"Look up mommy" she says.

 

Moved Home

Abigail threw up in her bed this morning.  We did not want to infect kids with vulnerable immune systems at the house - and so we moved home a day early.  We're doing ok.  And very thankful for the meals in our freezer! Really hoping that Rachel escapes the flu but we shall see...

I took Rachel to see her cardiologist while Dave packed up.  Her oxygen saturation is 61%.  Other than that, nothing else to report.  We booked another apointment on December 20, and we will do another echocardiogram then. 

While at the Hospital yesterday with my older two (just for a change of scenery) - I saw this little girl crawling and sitting and even standing a bit with help.  I asked how old she was.  Six and a half months old.  wow.  That was a bit of a shocker for me.  I still hear strangers ask me if Rachel is a preemie! Rachel is who she is and we love her just the way she is.  It just surprises me sometimes to meet other healthy babies her age...and see the obvious differences.  Abigail ran up almost right away to 'play' with her and I couldn't help thinking how it would have been for her to have a healthy little sister.     

Back in Our Old Room

We are settled back in at the Flames House - just in time too.  I think the temperature is -33 degrees without the windchill.  Calgary was the second coldest place in the world today! (after the south pole) So we are hanging out in the rumpus room right now, playing with toys, doing crafts etc...Dave is working in the next room.  

We are feeling a bit disoriented here because we are not in our usual room.  There are two family rooms and usually we are on the west side.  We keep wanting to turn down the wrong hall! But this time we are on the east side - the same room we first stayed in after Rachel's birth.  As I walked in, everything came back.  I remember walking in to that same room thinking, " so this is where my daughter is going to die."  I remember the painting of hay bales on a field, the place where the crib was - with the quilt hanging on it and a memory box with a teddy bear sitting in the crib.  And here we are six months later, still coming and going from the Flames House.  My feelings now are much like those I have when I go home to my parents place after a long time.  I had to look around for awhile to see if anything else had changed....Because I certainly have.

So much more I want to write.  But time is precious here.  The kids need more supervision here than they do at home.  Thank-you for your prayers and notes.   

We weighed her today too.  She is 6 pounds 15 ounces.  (2 more ounces than she was 3 weeks ago).   

Six months Old

She turned 6 months old on this day!!!

Wow. You are half a year old Rachel. 

What a precious gift to have held you this long.

Thank-you Father. 

1...2... We Thank-You!

Ethan and Abigail have received so many presents and cards from you in the last 10 months.  They would LOVE to make thank-you cards for all of you but I thought maybe this would be the best way to cover everyone. (the only idea I had was to add the word 'we' - the rest is all their creation) And after several tries to get a good picture, I settled for one child looking at me....

If the inside of the card had words, it would read -

"Thank-you for all your wonderful gifts, and for playing with us!

Thank-you for praying for baby Rachel too.

We are so glad you are our friends!"

I'm adorable.

Update on Rachel - We have taken out the rice cereal from her feeds now - she doesn't seem to need it anymore and it makes preparing her feeds so much simpler too! (yay!) Dave just informed me that last night was pretty rough.  (He was so kind to take most of the night duty!!) Rachel was throwing up because of her cough.  Yup, another cold. Her congestion makes feeding challenging sometimes too. (and she already needs to eat soooo very often) But she's still hanging in there.  She's a tough little cookie. 

Superstore Trip

I went to Superstore this afternoon for groceries.  And I took three beautifully soft sleepers that someone had mailed to us - and tried to exchange them for something smaller that would fit her.  The sleepers are 0-3 months and I have hoped for a long time that they would fit her eventually.  Maybe they still will, but I was feeling impatient to use them now.  (I had said earlier that 0-3 months would fit - but I was wrong - So sorry to those who gave us such beautiful sleepers!!) She really fits the one month sleepers at Sears best (or NB size, even these can be a bit big!) so if you don't see your sleepers on the blog, I may have exhanged them for those.  I hope that's ok.

As I looked through the baby girl section - I realized very quickly that there was nothing small enough to fit her.  

My 6 month old daughter doesn't even fit 0-3 month clothes. 
Except for the onesies, I could not find any clothes to fit my 6 month old daughter. 

That fact stunned me more than it has for a long time.  The happy Christmas music was playing in the background, clashing with the 'off feeling' in my chest.  It felt so wrong to be there.  I should be admiring the little dresses but I can't even look at them.  Often when I look at my daughter, I don't really "see" that she is too small.  She's Rachel! And I think she's the most beautiful little person in the world! Nothing will change that...but today her smallness hit me in a new way.  And my heart broke for her.

Later today we put up the Christmas tree - it was a spur of the moment thing.  I know - it seems crazy early.  (although I do happen to know a few others who did it too!) But we are away at the Flames House next week and thought it would be nice to have up for when we get back.  Dave's parents are out at the end of the month and who knows if we'll see them at Christmas...All the decorations are hung at the very bottom of the tree (courtesy of Ethan and Abigail).  We had a good time earlier too - making snow angels and stomping around in the snow, while respite took care of Rachel.  I love my family.  Thank-you for them God.  



 I still have a song in my head from my faveorite Christmas album. (Yes, we even played Christmas music...)

"Ready my heart for the birth of Immanuel
Ready my soul for the prince of peace
heap the straw of my life for his body to lie on
light the candle of hope
let the child come in..

mine is the home that is broken and barren
mine is the stable of cold and stone
break the light to each corner of doubt and darkness
now the word is made flesh for the birth of me"

(in Steve Bell's Christmas cd - by Lois Shuford)

Double up Tuesday

Thank-you everyone for your very kind comments, emails etc...I have been so blessed and encouraged by them! 

Also, in case any of you are wondering if we have food in our freezer, this picture should answer that question.....

Yup, I think my jaw is still hanging open....WOW.  The food is from a meal group called "Double up Tuesday" - started by one of the moms at a Calgary school - in order to provide meals for families who need them (often those with a sick family member).  Once a month the members 'double up' their cooking for one day (and donate half).  Our names and info were passed on to the group by a new friend of ours that we met at the Flames House.  (also a former member of the group).  I was expecting one box of food - maybe 4 meals or so. But the person delivering them said "nope, there's still more." and they kept coming and coming. What a huge blessing!! Thank-you so much!

And it is a perfect day to put a ready-made meal in the oven! I had 2 1/2 hours sleep last night and Dave had 4.  Our respite workers (a married couple) were not able to make it yesterday because the car they were using was in the shop.  (When she takes transit it takes up to 2 hours!)  On the previous night - someone broke into this car (on our street) and stole some valuable items.  They haven't been in Calgary long either - what a great welcome to Alberta...

My thoughts are also with another family in our church.  The father has cancer and the Doctors think now that it might have metasicized to his brain.  I'm praying that they will feel loved and cared for today! God give strength...

Remembering Pregnancy

I have had a few great days now, after what seemed like a very long stretch of gloominess. It felt like my feet and heart were stuck in a pit of mud.  I didn't want to do anything.  Thank-you Dave for your patience and understanding!! Yesterday I read stories to our kids.  I talked with them and laughed and it was so healing for my soul.  This morning, all my kids were happy and I made chicken noodle soup and put something in the crock pot for supper. It felt so good to 'be domestic' again. 


Our lives are not just gloom and doom - there is so much laughter in this house.  But I feel like I can swing so quickly from one end to the next too.  This afternoon I re-read one of my last posts and decided to follow the link to Pearl's story.  I was familiar with it but as I read it again today, her story brought me right back to those early days. If you want to know what it was like for us to wait for Rachel - read her story.  Because if I were to write our own - it would sound so much the same.  Except that we have not yet had to say our good-bye's.


The feeling of our broken hearts
The coldness of hearing the words 'termination'
The thankfulness for each peek into Rachel's world by ultrasounds
The sometimes profound thoughts coming from our children - gifts from God
The awkwardness of talking to strangers
My gratitude to David for his amazing support
The preparation for birth, the desire to see her, mixed with the dread of saying good-bye
The large bag for the Hospital, four times what other moms need to bring
The preparations to cram years of memories into minutes, hours, days

I remembered back to that day near the beginning - of standing in the kitchen holding back the sobs but knowing I had to make lunch for my kids.  And Ethan said something to me that stopped me in my tracks.  True story - Ethan - age 4 said to me "Mommy, don't cry.  Don't you know that God takes the good things and bad things and mixes them together to make something beautiful?"  Those were his exact words.  We have no idea where he heard this and we did alot of asking around.  I can only think that God whispered these words to him.  Right afterwards, he switched into monster truck mode again.  Thank you God for your gifts - your reminders to us that we are not alone.  Your windows of grace.

I remember what it was like to stand in the shower and weep and weep, because that seemed to be the only place I had left where I didn't need to be strong.  I remember the feeling of dread that came just before the questions and comments I knew would come. "How far along are you? oh, you'll be so busy with three.  Abigail will have a sister? How exciting!" I remember telling a table full of women a bit about Rachel (right after they had ohhed and ahhed over a friend's pregnancy) and being met by a long stunned silence.  Not even an 'I'm sorry'.  No questions.  It was like I had said something obscene and I had ruined the party. I didn't want to steal the show from my friend - but I couldn't pretend I had a healthy pregnancy.  It was the truth and their lack of response hurt. I remember how large groups of people made me feel nervous - I couldn't just blend in because of the very obvious belly lump, but I didn't want Rachel to be unknown either. 

And with those I knew - I wanted her to be celebrated. I wanted to talk about how special she was and how she was changing us. I had a hard time sometimes explaining the feelings in my heart but I felt so cared for when people asked me how I was really doing anyway.  I was glad when friend didn't assume we were being taken care of.  And I was glad they asked questions about our life, not assuming they already read everything on our blog. I found it hard sometimes to give of myself to others the way I once had - to initiate things, and I was thankful that many close friends were (and still are) so patient with me.  So many of you continued to call and email even when I wasn't able to respond.     

In a previous post, I wrote that a stranger said something unkind to me about Rachel. I have wrestled sometimes about how/if I should write about the unhelpful things that people have said. (and about how they make me feel)  The last thing I want to do is cause you to wonder if you have been 'that person' who said something hurtful.  Please trust me - I have never written something with a certain person in mind - hoping that they will read this.  I can say honestly right now that I hold no bitterness in my heart - and I am asking God to keep me free from that.  I have learned (and am learning) to appreciate that people show love differently.  I myself often feel very awkward around hurting people and I have said 'the wrong thing' plenty of times - and I think that helps me to be more gracious to others.  I am learning to see past the words to the heart behind them - and I am learning to speak up when something doesn't sound right to me too.  I think we  need to help teach each other how to speak to hurting people.  I have alot to learn myself.  I hope that writing about these things will be helpful and not alienating.      

Our journey started almost a year ago.  And now the things that most concern me are not so much the random 'odd things' that I have heard - but statements that indicate a belief system which I believe needs some challenging. The topic of miracles and faith has been on my mind alot this past year!! Please pray for me as I continue to work through this.  Something that I have heard quite often throughout this year is a variation of this statement.  "You just gotta have faith and believe. (and God will heal Rachel)" Another one is a bit different.  It's "oh, I'm sure she's just fine.  Rachel is so special.  I'm sure God won't let her die."  Neither of these statements allow room for us to express any sadness at the reality in which we have found ourselves.  And neither do we believe that they portray an accurate picture of God's work in our lives.  Or a healthy response to trials/disappointments in our life.  A few people have been pretty militant about their ideas. I am quite weary of these 'conversations'.  One day I would like to write a proper response to this.  (and by the way, yes I do believe in miracles - Rachel's life has been filled with them!) But for now - if you want to read something we have found very helpful - you can re-read this post. It is titled Father's Day. (go right to the end) I copied in a section from a book we were reading while I was pregnant. 

Remembering is tough.  Sometimes it means wrestling again with painful memories.  (Sometimes like today - we end up meandering all over and we feel a bit crazy!)  But at the same time, I remember the very real experience of God's strength in my life.  I remember many hours of pacing the hall of our house with music playing and I how clung to the words and to God.  Many people told me then that they didn't know how I did it - that they were amazed by our strength.  Honestly, I had no strength of my own.  On my own, I would have been a big heap of mess on the floor.  God was my strength.  He carried us through.

Little Trouper

A few anxious moments today but all is well. Rachel had a very small bm early this morning.  Then later today, we decided to do a supppsitory because it seemed like she needed to poop alot more. She was straining and then giving up and going to sleep.  Shortly after the suppository she had a large poop - and it came with ALOT of straining.  It was a tough one for her.  And on us too! We are feeling glad that this is over with for a few days again. Rachel is such a little trouper.   Milk was coming out of her nose with the pressure and she was turning bluish with her efforts but she just plugged on.  oh honey - you are so unbelievably precious. 

Treasures in Heaven

"Don't store up treasures on earth, where they can be eaten by moths and get rusty, and where thieves break in and steal.  Store your treasures in heaven, where they will never become moth-eaten or rusty and where they will be safe from thieves.  Wherever your treasure is, there your heart and thoughts will also be."  Mathew 6:19-21

More Thank-you's!!

I have been wanting to say some more "Thank-you's" for awhile now! Sometimes I get a chance to highlight certain gifts and friendships.  And I miss so many others.  I may not put a picture or an acknowledgement on the blog but I want you to know that I appreciate greatly each and every demonstration of love from you.  When you say that you are praying for us - this is a gift beyond price.  When you send me a note or give us a hug and ask how we are doing (because our blog does not say it all) - those are gifts too.  And I will say it again and again - your expressions of love for us inspire me do the same one day for others.  Because they have been encouragement to me to keep plugging on.  Thank-you. 

You have given me so many ideas - your creativity amazes me. I am listing them all in this pink journal, sent to me by an organization called String of Pearls. (They send a box full of beautiful ideas for honoring and remembering a baby that dies shortly after birth.  I requested it just before Rachel was born. And she was so kind to sent it priority post in case she died at birth.)  I am also recording many of the emails you sent me, starting from that ultrasound appointment that started it all.  I think I have 35 pages already!  I am keeping them so that I can read them later. Thank-you dear friends for walking with us.      

When We are weak, He is Strong

(sorry for the rambling - not sure it all fits together, I wrote at three separate times)
Rachel is doing well.  Her feeds are way down today though, she is sleeping unusually long and we are expecting another bm soon, which I am trying hard not to think about.  And us? We are feeling worn in many ways. As time goes on, we can't help asking the question - How long God?  She has turned our lives upside down - and we love her immensely, but we are so weary.  As David has said "our back yard is full of all the plans we keep chucking out the window".  I catch myself saying 'if she were healthy, we could....let her cry it out, we could visit our families in Manitoba, we would do alot of things..." We haven't been out east in over a year.  I am tired of endlessly heating and reheating little bits of milk just so we can help our little girl to live.  I am weary of jumping at each cry.  I will do it over and over again because I love Rachel deeply and I want her to live.  And I know these disappointments are 'small' things in the whole picture, but they keep adding up... 


And the strain of everything being turned upside down is too much sometimes.  And I am beginning to feel seeds of resentfulness.  I am irritated by demands from my kids.  I am sad about the strain put on our marriage and on our family. Sometimes this feels like too much God.  It's too much.
     
I wrote the previous paragraphs this morning.  This afternoon, I had exactly enough un-interrupted time to listen to my friends tell their story of their son Wyatt - you can find it by clicking here.  All I can say is 'wow'. I had started listening a couple times but today I got all the way to the end.  I knew their story.  But today I listened with different ears.  (The theme that day in church was debunking the myth 'God won't give me more than I can handle.') I was struck by the words she ends with. "Did God give me more than I could handle? Yes. Over and over and over again. But I'm so glad, so incredibly thankful that God allowed us to have a handicaped son. Because God revealed himself through our son.....I want to encourage you not to be afraid of pain..or of being weak or of impossible situations because we have a Father who is longing to show Himself strong on your behalf..."  

(most of the following was written yesterday)
Rachel, I am sorry.  I once thought that if I could just give birth, then I would mourn you and somehow move on.  Maybe even get pregnant again and make the immense sacrifices again to have what we wanted - three living children. We had other dreams too, ideas of where God was leading us in life.  I thought of my "pregnancy with a child who would die" as terrible and life-changing to some extent, but also as wrong timing - and this baffled me for awhile.  It seemed like a very significant bump in the road, but still a bump nonetheless.  Now I know I was so very very wrong.  I know now your life is impacting us in more ways than I could have imagined.  This really came home to us the first time we almost lost you - when your heart stopped.  Nothing could have prepared us for that.  And nothing has looked the same since that day.


There's still so much I don't see but I am starting to understand that you are perfect timing.  God's hand is in this - I am seeing bits and pieces of his work - in me and in others who are affected by your life.  We still don't know all the ways that knowing you will shape us - and the directions our lives may take because of you.  It is terrible sometimes to think of the pain - of the breaking that will happen yet.  This journey is turning out to be much more difficult than we could have imagined.  So much more than we can handle.  But He is faithful. And He is strong.  He will take us through.

And now the more realistic picture of the last 4 days or so. (except today)  -
unhappy because of those teeth breaking through. 
She is wearing Abigail's newborn outift.   

The weekend

Rachel is reaching up to touch our faces!
 I love it...

Package of Goodies from Prairie Grove Church (the church we were part of before we moved to Calgary)
What a wonderful surprise!! Thank-you!!
Thank-you also to our friends who delivered it  - we enjoyed introducing Rachel to you!

Rachel "talking"

This is Rachel "talking" to us this morning. (not sure why I did the whole thing sideways) I have her dressed in a candy can sleeper because it fits so perfectly right now (thanks Erin!) and because in a way, I am wanting to celebrate a bit of Christmas with her now in case we don't get to do it later. It's never too early to wear Christmas clothes, is it? She's been fussy again today - must be the teeth. Maybe I should break out the "Silent Night" music too...

The loves of my life...

...enjoying simple pleasures.  These pictures make me smile.



Enjoying the warm weather



Catching an evening snooze...

Five and a half months old

Yesterday on Rachel's 5 1/2 month birthday:

- I didn't feel like doing anything.  So nothing much got done...

- A delivery man dropped off a box of chocolates, a gift from friends in MB - and I was so moved by this kind and thoughtful gesture. I cried and it was a good cry. The note on the box read "Let the richness of these chocolates remind you of the richness of God's love".
- I had a nice walk to get Ethan from playschool. 

- I felt angry later about a stranger's comments about Rachel. (thankfully these experiences are few and far between)   

- We had some afternoon respite so I lay down by myself for an hour and listened to new music - Red Mountain Church and Sandra McCracken - and cried - and it was balm for my soul.

- We had a wonderful visit with friends who recently moved to Winnipeg. They were out for the weekend.

- We ate yet another wonderful meal, given to us by a friend.

- Our regular respite worker couldn't make it tonight so a friend came over to do the night shift. And she brought me dried mango. yum!! Thank-you!!

Today:

- I am tired.  I have a cold.  I couldn't sleep after 3:30am because I was bugged again about what that stranger had said and how she said it.  Then I took over Rachel's care at 5:45 and she's been fussy.  But now, as I look over what I wrote - that one irritating conversation seems far less significant in light of all the ways that God provided for us yesterday.  Sometimes I need to write these things down in order to see more clearly.  Thank-you God for all the blessings of yesterday.    

A Letter for Rachel

David "This past weekend was... words are hard to find for the goodness of it.  Epic, life giving, rejuvenating all come somewhat close.  Andrew, Steve, and Corey all came out from MB to visit me and my daughter.  I am among the most blessed of men, a David with several Jonathans (yes, that includes you, Jonathan Barg!).  Thank you so much, my much loved friends, for coming.  Here is a letter written by Corey to Rachel" (with his permission).

Hi Rachel,

I want you to know that I, my wife Karen, my four kids (Josh, Sara, Jessie and Cheylee) and our extended family have loved you and prayed for you since before you were born. A few days ago I came to visit you, along with some of your daddy and mommy’s friends. You spoiled us all with your smiles and your determination both of which are much more amazing in person than in pictures but, just between you and me, you are beautiful in pictures too. I will always remember the Sunday morning when I was getting ready to preach in the church where your Daddy is a Pastor. You smiled at me so brightly and quickly that you took my breath away and I wasn’t sure I’d be able to speak at all. I remember thinking that if everyone had seen smiles like those there would be no need for any more ‘God words’ or any words at all.


Much later that Sunday, just before we had to say goodbye to your family and get ready to drive home, you had a difficult time. Your determination to live your life was a reminder that brokenness is not going to get the last word when your Father restores, re-members, and recreates the world. On that Day, grace, joy and holiness will speak. Rachel, thank you for so powerfully reminding me of that. I might not be the same from here and I think people will be happy because of that. If anyone ever asks me, I will make sure to mention that you were my teacher the weekend I visited you. Jesus, who loves you, this I know, said that little children are the leaders in His Kingdom and you’ve been leading lots of people into living more honestly and faithfully. You remind me of your mommy and daddy when you do that. Soon I will put what you’ve been teaching me into a magazine so you can reach even more people than you have already. Here is part of what I am learning from you that I want people to know.


The Father of Life once said that the angels danced for joy at creation (Job 38). I can’t help thinking that maybe our joy at life, at grace, in relationships, in love, in community is an echo of that original joy. Our joy in the middle of wreckage and brokenness does not mean that we ignore or belittle the wreckage. It means that amongst the ‘flowers and the garbage’ (Cohen), the flotsam and jetsam of some long ago shipwreck (Gen 3), we find, on the spindrift, a Message of hope and of Rescue. We wait anticipating, but, in the meantime, we would do well to listen to our lives, trying to hear clues of the coming Rescue – clues might just be hidden in things like a shared glance, little life-changing smiles and a determination to live even when our bodies are broken. Everything is broken but grace makes some strong at the broken places.

Rachel, I already know that anything I tell people could never be as profound as what you have already told us, and what you are telling us still. But I promise I will do my best.


Oh, I almost forgot. I looked into your eyes after church that Sunday and I was trying to figure out whether you looked like your Mommy or your Daddy. The truth is that you looked a lot like both of them but most of all you looked like Rachel – the girl created in the image of the Father. You reflect Him beautifully and purely you know.

Much Love,
Corey

Releasing the Balloon

A song on my mind when I wrote this was "Heaven is the Face" by Steven Curtis Chapman.

Last Saturday (in the middle of our busy weekend with company), we also attended a celebration of Alexander's life. Maybe you remember me writing a bit about a little boy - almost Abigail's age - whom we got to know at the Flames House. Dave and I were only able to attend the balloon release in the afternoon. (Dave and I took Rachel with us and left the other kids with my parents.) We were some of the last people there to pick up our balloons - there were several left so I took one for me and one for Rachel. We had arrived a bit late and we were at odds with each other - we were stressed about Rachel, and other things - and at the same time feeling the heartache of our new friends who have said good-bye to their little boy. So many thoughts spinning through our heads - and as we stood waiting together with everyone, Dave told me that we were at the same funeral home where our friend, Irene Plett's viewing was held and it was also the same funeral home we will be using for Rachel. Her casket was stored in the building - we had ordered it from the states just before she was born. (There is a story behind the casket that I may tell someday - I think it is an interesting one.) But all these things hit me like a brick. And when it came time to release those balloons, it felt like I had to literally pry my hands open to let go. It felt like I was letting Rachel go up into the sky. And it seemed like those balloons were drifting away too fast....I would like to say that I had this feeling of peace as I watched those balloons but it didn't really come then. I believe that Alexander is in heaven. And it is more beautiful than we can imagine. But it seemed so far away at that moment. I told God that I was going to trust him even if it didn't feel right, even if I can't see into heaven now. I asked him to give us strength to let her go when the time comes - because right now I don't see how I can do it. And I wept for those of us that will and are feeling the pain of separation from those we love.


Already in these 5 1/2 months, my desire for my daughter is so strong. And when I think of heaven, I long to see Rachel!  I imagine her as strong and healthy and I long to know her in a deeper way than I do now.  And I don't want to admit this to you but if I am very honest I would say that sometimes I long far more to see her, than I do to see Jesus.  And I wonder what that says about my love for God.  I read something a little while ago that talked about this. The author wrote that "these desires are what God uses to awaken us to himself. When someone we love is there, heaven becomes more real and our longing more vivid. It is a sacred longing. If we follow where this longing takes us, we discover that every human love is only a taste of the love and intimacy God wants to share with us. Our longings are...gifts from God (gifts? it feels like pain! but yes, it is a gift because)... they send us on a search for a love that will never leave us or disappoint us." Nancy Guthrie (p163)


"okay"...I say to God (with trembling) "Use my longings, use the pain, to awaken me to You.

Another Spell

This morning at 5:45 am our respite worker brought Rachel upstairs to us.  She was in distress again.  We held her and gave her some morphine.  It was not as traumatic as the last times because she was not blue, but it still is so difficult to watch her breathe so hard and fast.  We had a feeling yesterday that something was coming because she seemed so much weaker and so I slept very lightly all night waiting for it.  Our poor respite worker didn't sleep much either because we told her about our nervousness. 

Rachel is conked out now. The other two are just waking up....Another day.

Teething

Yes, it is confirmed.  Rachel is teething.  We have been suspicious for awhile but when it was confirmed by the white glint on her top gums, we felt like we had been kicked in the gut.  Why does she need to go through this too?  Her mouth is so little - it is really tough to imagine teeth coming through those little gums.  I have given her a bit of tylonol (watered down so she doesn't choke on it) but she's still not swallowing it well so I put a dab on her soother once in awhile.  Our other two kids teethed really hard so we are hoping that Rachel can be spared from the same.  She is doing very well with her bm's though.  (thanks for the teething advice)


We have been so spoiled lately because we have had respite/nursing care for the last two weeks.  But last night we were back on duty and only had a few hours of sleep again. Our respite worker got very sick and had to cancel.  I really hope she is doing ok. 


We spent most of the weekend with our company from Manitoba.  My Dad and sister came out for a few days to visit, and to take my mom home to MB with them.  My parents took the kids to a Fall festival party at Ethan's playschool and had a blast.  We had a good time being together as a family.  Rachel gave lots of her winning smiles.  We also had some other very special company!  Three of Dave's very good friends from Manitoba came out as well - two friends from his wedding party and the friend that married us!  (We didn't host everyone in the house - thank-you to those of you that opened your homes!!) This was an incredible gift.  Thank-you for supporting Dave (and us) in coming out.  They went out for brunch one morning and out to the mountains the next day.