10 Weeks and a Day

Today it seemed as though Rachel was responding to me in a different way and trying to...smile?  Another one of those things I didn't expect to experience and to be honest, it's not something I welcome.  It means we are getting to know Rachel as a little person.  I can't keep myself aloof from my daughter - I don't want to, nor do I want to keep Ethan and Abigail from enjoying her.  We all love her! But as she draws us in to our hearts, I can't help thinking of how much this is going to hurt all of us.  Ethan has been asking people lately if they want to kiss Rachel. (as though he is giving permission) When Rachel cries, Abigail tries to soothe her by stroking her cheek.  I seldom let my thoughts go this way, but just sometimes I imagine that Rachel as a 'normal' healthy little girl and we are enjoying her without this cloud hanging over us.  That picture feels so very far away from our reality.  I feel sad that Ethan and Abigail will not grow up with their little sister.  Sometimes it is a struggle to stay thankful. 


This past week we have been on survival mode.  Rachel got her second cold so she wasn't sleeping.  Dave got a bad cold and then my hay fever kicked in.  We both got acquainted with the Neti pot that's been sitting in our closet for 6 months.  I should have used it long time ago but I was dragging my feet. It feels pretty strange to use but I'm so amazed at what it's done for me.  If any of you are allergy sufferers, give it a try!  But, to get back on track - we are exhausted.  It didn't take long for that to happen again.  We are so very glad for the food our church friends left here! And for the Hospice that we will be going back to... tomorrow!!


Yesterday I was asked the question "How are you doing?" by two doctors.  I know they asked because they genuinely wanted to know and I appreciate their concern.  I replied with my usual automatic response.  "We're doing fine.  We have alot of support."  I think we really are doing ok most of the time.  We are doing what we need to do.  But hearing the question made me stop and pay attention to how I am really doing.  Truth is, I am afraid of how empty our house will feel.  I am afraid of people forgetting about Rachel.  I am afraid that I won't be able to let her go and in my sadness, not be a good mother and wife. I am afraid that losing Rachel will affect us in ways we can't predict.  Please pray for both Dave and I, that we will continue to live one day at a time and to place our fears in God's capable hands.  The Great I AM is with us now in the present.  I want to believe it.  I want to live it. 


As for Rachel's STATS, her oxygen levels are still in the mid 60's.  She is still 5 pounds 8 ounces.  I'm attatching a picture of her at her apointment yesterday. She has filled out her carseat, hasn't she?  And you can't see it, but the words on her bum say "Loved Baby"  Is she ever! 

One more thing. I have been feeling like a lousy friend.  It's been so hard to return calls, emails or get together with you.  I feel like I have so little to give right now. I would probably feel this way even with a healthy third child.  But I want you to know I appreciate you.  Thank-you for waiting. Thank-you for your patience.  You are important to me.  That sounds a bit like a recorded message.  I really do mean it though.    

Thankful

Isn't she beautiful?  So far she's only smiled in her sleep but she does look happy in this picture. We're really happy that we can share her with family this weekend.  My sister Evonne was out yesterday.  She asked Westjet if she could extend her two hour stayover to most of the day (she was on her way back to Wpg) and they gave her a 'one time' extended stay because of circumstances.   Thank-you Westjet!  Tomorrow Dave's aunt and uncle (and boys) are dropping in here for Brunch, also on their way back to MB.

We are eating salads and BBQd meat from the freezer today. I think I still have that deer in the headlights look - I can't get over how incredibly generous and thoughtful people have been.  (and in such a wide variety of ways!) You have made this hard road easier. You inspire me to do the same for others.  Thank-you. 

Nine Weeks Yesterday

We came home from the Hospice yesterday to a clean house, flowers on the table and.....our fridge stocked with salads, fruits and veggies and a freezer filled with ready made meals! And the flower beds had been weeded, there was a new dishrack. Even the windowsills were cleaned!!! (that hasn't been done since we moved in here)  Did I miss anything? WOW - I keep going to look at the fridge again and again in amazement!  (I keep noticing more things each time I look) Thank-you to everyone involved in that - what a beautiful gift!!! We also received some very thoughtful cards in the mail.  Thank-you!

Rachel is still plugging along. We weighed Rachel yesterday before we left and she has continued to put on weight! She is now 5 lbs and 8 ounces.  Rachel has been fussy and very awake during the nights again.  And we are back on night duty.  I think she slept two - one hour stretches last night. (she actually did a 5 hour stretch for the nurses though and we're waiting for a repeat) But we're going into this next week feeling fairly well rested and the Hospice has space for us to go back on August 2nd  - which is only a week and a bit away! What a wonderful place.  At the same time, it is really good to be home again too.  I think Ethan really missed his train set.

We got to go out as a family of four a couple times while we were at the Hospice.  First to the Cross Iron Mills Mall (there is some cool stuff there for the kids) and to the Duck pond.  It felt so strange to be without Rachel - I kept looking around for her.  I wonder when she's gone, how long will it feel like a part of us is missing?   

Dave worked from the Hospice this week and that worked out well.  I took all three kids to the duck pond and to the playground in the mornings and in the evenings, Dave and I took turns going for a run/walk.  It was good to be getting some exercise again.  And it was good to get to know some of the other moms who come to the Flames House with their kids.  I am glad for their honesty and open-ness.  Lots of tough questions that are still turning around in my mind.          

On our last day at the Hospice, a chaplain and friend, played his mandolin for Rachel and us.  It was so beautiful.  What a valuable ministry he has.  We are so thankful for all these people that we are getting to know because of Rachel.       
 
"I remember my affliction and my wandering, the bitterness and the gall.  I well remember them, and my soul is downcast within me.  Yet this I call to mind and therefore I have hope:  Because of the Lord's great love we are not consumed, for his compassions never fail.  They are new every morning; great is your faithfulness.  I say to myself, "The Lord is my portion; therefore I will wait for him. The Lord is good to those whose hope is in him, to the one who seeks him. " Lamentations 3:19-24

Face painting

Last night we had a BBQ here at the Hospice with people from the "Hope Group" - families with children who have a shortened life diagnosis/special needs.  The food was amazing (BBQ'd ribs, salads, etc..) and so were the people we met.  Brave, beautiful people.  One family told us they had literally lived at the Hospital for the past three years with their daughter.  Tough stories.  After the food, there were activities and someone did face painting for the kids.  I just had to share them with you.  

 

 

2 months old and a day!

We came back to the Hospice on Wednesday and since then we have spent most of our time sleeping!  We feel so much better.  And we were told yesterday that there was room for us to stay until next Friday! So, obviously, we are accepting the offer.  Dave is going to continue to work and commute from here.  I have been able to get outside several times. (it's been awhile) I took the older two to the zoo one morning and met a friend there.  Her beautiful little boy went to be with Jesus a year ago this Sunday so her family is on my mind alot this weekend. 


I have also taken the kids to the Hospital playground a few times.  And this morning I went for a wonderfully long walk.  (A volunteer played with our older two and the NA held Rachel.) This place feels like such a haven.  We are so spoiled.  And surrounded by people who have chosen to be with the hurting.  One NA told me that when she was deciding on where to get a job, God had given her a verse in Ecclesiastes -  "It is better to go to the house of mourning than to go to the house of feasting." I am so glad there are people like her who have followed God into places like this..           


We are getting to know other families here at the Hospice a bit.  These parents have such beautiful children who are facing so many challenges.  Some of them were also told that their child would not survive long but they have amazed everyone.  They are so tired.  They train someone to do respite and then the worker quits for another job and they hunt again.  They spend hours and days and years at the Hospital.  Watching these brave people care for their children amazes us and we admit, it puts fear into our own hearts.  And yet, I don't think they feel brave.  They just do it because there is no other option for them.  Please pray for these families.        


There have been a few times when Dave and I have thought Rachel looked quite blue. (see the picture below, she may have looked more blue than usual because of the lighting) I took her to the airport to hang out with my sister for an hour yesterday (she was en-route to a wedding) and while she was getting some yoghurt, I looked over at Rachel in her carrier and I felt my heart stop - that sinking gut feeling when I saw her face.  She was so still.  I had felt a bit aprehensive before but this was the first time I felt real fear that she might be gone.  It seems strange that even though we know what is coming, it will still feel the same way.  After I got back to the Hospice we took an oxygen reading but it was still the same  - low 60's.  It does seem like she's sleeping more but maybe she just really loves this place too and feels more relaxed!     

Sometimes it is better for us to be in the house of mourning. I say this with some trepidation because I know there are people in our world that face enourmous suffering. I won't pretend to understand it. But I know this has been true for us: Even though my gut wrenches with sadness sometimes, I am glad for this trial too. I feel awake to God in a way I haven't for such a long time. I know this may sound strange but I can know such deep sadness and in the same day, feel incredible joy too at what is coming for those who choose to trust. We really will be ok (and that's not a platitude - it's real). We will be okay because we know how the story ends. And it is a good story. A love story about a God who pursued us even though we spurned him and it ends with a big wedding feast. It doesn't always feel like things are going to be ok. It doesn't mean all my doubts and questions are answered.  Sometimes I wake up at night and want to erase everything I have written here on the blog because it sounds too darn cheerful (am I just deluding myself?) Sometimes I can't sleep because the fear strikes me like a huge wall.   But I choose to believe because I have already seen God at work in our own lives and in others around us. And because I love His story.  I am terribly afraid of feeling the pain but I want to keep waking up too.   

From My Reading Today

"Only by dying could He break the power of the Devil, who had the power of death.  Only in this way could He deliver those who have lived all their lives as slaves to the fear of dying."
Hebrews 2:14-15

Thank-you Jesus.         

In the Sorrow, I learned...

These days, the tears are closer to the surface and the pain deeper.  We are busy and so we don't often stop and really feel, but the sadness still has a way of finding us.  God has a way of finding us too. (or maybe more accurately, He has a way of getting our attention too) We received a gift this past weekend that we will treasure for a long time.  It's one of those things that I am afraid to talk about for fear of cheapening it somehow.  Maybe the time will come someday to share it here. In the meantime, I wanted you to know that God is meeting us in the pain, and using others to speak to us in a powerful way. 

Yesterday I went to the gym for the first time (the weather was lousy) and while I walked on the treadmill I listened to some music.  I found a song that I had forgotten about and I ended up listening to it about five times in a row.  It's called "Prayers for this Child" by Sara Groves.  I wish I could play the song for you but these are some of the words....


I do not know how I am to pray for this child
as a mother I don't want my baby denied
but in the waiting, in the waiting
I learned to hold on to the heart of God.
I only have two eyes - be all seeing
I only have two hands - be everywhere
I do not know enough - to be all knowing
I give this baby up into your care
I do not know how I am to pray for this child
I want to guard her from everything wicked and wild
but in the trial, in the trial I learned to hold on....
I learned to hold on to the heart of God.


General Update: We had some wonderful babysitting help this weekend!  So we were able to get some more rest.  The nights are still hard because she eats so often.  She still coughs, but only when she's eating.  By the way, she hasn't been throwing up as much lately and she hasn't struggled with mucus in awhile now either. She is completely on formula too so we'll see how that goes. We tried using a swing to settle her but that didn't work well because she has so little muscle control in her neck.  Maybe we will try a bouncy chair (that reclines really well) - anyone reading this have one we can borrow?;) Her eyes have really darkened lately. We're pretty sure we have another brown eyed girl!  Abigail is still completely enthralled with her little sister.  oh, and (sidenote) Abigail's front tooth is now officially dead and turning brown - after a fall at church. oh yeah.       


Tomorrow we will be at the Rotary Flames House for lunch! Tomorrow night we will have un-interrupted sleep or at least some rest. I am finding it harder to sleep these days even when I have the opportunity.  Last night my mind wouldn't stop turning. How much longer do we keep living day to day wondering when she will leave us? I wonder how this will change us. I can't help wondering also how God will bring Good from this trial and from Rachel's short life. I keep wanting to look at her in the night just to reassure myself that she's still there.  I keep wondering who this little person is and what she will be like in heaven.  More waiting.  More sorrow to come. More learning to hold on to the heart of God.  I'm not even sure what that means..but I think the sorrow and the questions will drive me to find out more.

Father's Day - by David

Before I write about Father's Day, I want to say "THANK YOU" to all of you who keep up with us via this blog.  You've been a huge encouragement to me, and especially to Kendra.  Thank you! 

This Father's Day was, in all likelyhood, the only Father's Day I will spend with all three of my children.  Rachel is lying on my lap right now, and its almost too much to read the above sentence.  Needless to say, it was both sweet beyond words and very difficult. 

I preached that morning, and that was both sweet and difficult too.  We looked at what it means for us to confess that God is our father, and why if this is true he would not choose to heal Rachel - because we have no indication that He is.  We looked at some deeply counter cultural implications of our confession for our understanding of what health really is, for our understanding of personhood, and the value of persons.  If you would like to read the sermon, email me at pastor_at_abbeydale.org.  If you would like to hear the sermon, complete with crying and long pauses while I struggle to regain my composure (!!), go to http://www.abbeydale.org/, click on the "sermons" tab, and click on "listen" beside the June 20th sermon.

Here is a bit of the last part of it:
"If what it means to be human is not a certain level of achievement or ability, but rather to have a capacity for god – a responsiveness to God and receptivity to his Spirit – then that means that we who confess God as our Father must be the first to recognize those like Rachel as full persons, as deserving of love and respect as the most skilled and accomplished person we encounter. It means that those who are born with bodies that are broken and sick, those whose personalities cannot develop, whose intellects will never flourish – these are fully human because they are created and therefore have a capacity for God nevertheless...

The glory of God is a person fully alive. And that is Rachel as much or more so than the most skilled and accomplished person on the earth, because as a created being she too has a capacity for God. Her worth is related to her being, not her functional utility. And we need to learn from her and others like her, who have nothing to offer in terms of skills or accomplishments, who have “only” their capacity for God. I want to conclude with this. If God is our Father, he is a Father who has a special heart for the poor, the vulnerable, the weak members of human society – not because these need the most help, though they may, but because they teach us what it means to be fully human, to have a capacity for God. Power and talent and achievement are more often distractions from full personhood than manifestations of it. Rachel is teaching us what it means to be fully human.

Faithing,
David

Seven Weeks

This morning, Dave took the older two to the Stampede Parade.  They had a great time. I, however, spent the entire morning pacing the living room floor with a fussy baby.  Yeah, I'm still a bit grumpy about that but I'll get over it.  It seems wrong somehow to feel hard done by, when Rachel is only here for a short time.  And yet that is how things are - it's tough and exhausting.  I feel just as helpless in knowing how to help her as I did with my older two when they were babies. 

By the way, after my last post, we have received lots of offers for babysitting.  Wow - we feel so blessed by such wonderful friendships in our lives.  Thank-you.  Several days ago, we  asked if we could return to the Hospice for a few days respite and we just received word that we are very welcome to stay there from Wednesday to Saturday of next week!! We are really  looking forward to it!


 This afternoon, Dave and I and Rachel headed off for her apointment with the Cardiologist.  First, we had a chat about how things were going with Rachel.  A nurse checked her oxygen levels and heart rate.  Her oxygen levels are about the same as last time.  Her color is still good.  And we weighed her for the first time in two weeks.....and she's heavier than her birth weight!!! She is 5 pounds, which means she gained 12 ounces in two weeks. I was thinking she seemed a bit heavier to carry. 


Then we did the echocardiogram.  Rachel was a perfect angel and lay really still for the echocardiagram - the warm blanket probably felt great.  The last time she had an echo was just after birth so we were pretty curious about what we might find out.  We didn't expect anything too different because Rachel is still doing so well - she only has minimal blueness etc.. But there was something different.  Dr. Fruitman was not able to find one of the heart arteries or the curly veins (it may just have been a bad time) but the real difference was in the right heart artery.  She pointed it out on the screen.  There was a definite narrowing, like it was pinched.  She expects that either the same thing is happening on the other artery she can't see, or it is still open.


Later, she showed us the two echo videos side by side, the one at birth and the one today. She showed us how the blood flow has greatly decreased and how the flow through the right artery had changed.  This was surprising for us.  We're not sure how to feel about it.  I think I might feel a little more on edge, like something might happen.  And yet, our Cardiologist said that she may yet keep living for awhile - and there's no way to determine how long.  Even if the right artery (that she couldn't see) was actually closed, it is still possible for her to live with blood flow to only one lung and at dimished capacity for some time. 


It really is amazing how her heart has compensated for itself. (it is a kind of sad amazement) And because of the diminished blood flow, there is less energy expended in making her heart pump etc.. so she is able to use more energy to eat and grow.  And because she can eat more, her oxygen carrying ablities are higher as well.  (and she doesn't turn blue) At least that's how I remember it being explained.  summary: So while she seems to look better, her heart is really doing more poorly than it was at birth. The real question is how long the arteries will stay open.  The answer: unknown.   

ok - I have used up all my brain power for today.  Thank-you for your continued prayers for us and Rachel.

Abigail hugging the big green dragon at the Parade today 

Dave, what happened to her cowboy hat? :D

Tired and Sad

David just drove his mom to the airport. We are really going to miss her.  In fact, we really don't know how we would have made it without her this last week.  Rachel has been so unhappy - she has needed round the clock care and we are so wiped.  I wrote in the last post that maybe this was normal baby stuff.  But Rachel does have other challenges that my first two didn't.  By this time (7 weeks tomorrow) even our very collicky son was sleeping for short stretches at night.  And we are realizing that Rachel will likely never have what we call a "sleep pattern". She still needs to eat often because she tires quickly. Sometimes she will drink 20 mls, then fall asleep and want more 15 min. later.  Pooping seems to be a big strain on her.  We know that crying doesn't hurt her but we do have a rather heightened awareness of her - I can't relax totally at night because I wonder if she's silently gagging on her puke. (she seems too tired to clear it herself sometimes) So what's normal and what isn't?? We don't know.  But please pray that we can get some sleep soon.

We feel a deeper sadness these days and I'm sure that our exhaustion has something to do with that.

Here's a picture taken just before Mom (Grandma) left for the airport. Both Grandmas find it hard to be away and to leave us knowing they might not see Rachel again.  Rachel is growing on us all.   

It was so good to have her here - one morning she watched Rachel so that I could walk Ethan and Abigail to the splash park. I had shared awhile ago that I was feeling blob-ish (is that a word?) with lack of exercise. That really helped! And I finished off the brownies;) so the temptation is reduced for now!

Also, here are a few pictures that Jaci Enns took for us at Westwinds Park a few weeks ago.  I just got them today.  Thanks so much Jaci! (and Jolynne for being a great assistant) We had good weather and the kids were semi co-operative.  Rachel fussed for the last part which is why she has a huge green stopper in her mouth for some of the pictures. 

Quick Update

Dave's mom took the older two out to the playground this morning, and maybe on to the Big Arches.  I thought I would write a quick update before Rachel needs my attention again. She has been very fussy this past week - maybe just usual baby stuff - but it has been hard on us.  The nights are much too short and so it is a lifesaver to have Dave's mom here! Rachel still has a cough but is much better than she was last week.  I have started noticing that her usual preemie clothes aren't fitting her and I am pretty sure her legs and arms have grown! Yeah! She is wearing a few outfits (still preemie) that I wasn't sure she would ever grow into.  She may yet be able to wear some of Abigail's early clothes!


Yesterday we all went over to the Village Square pool.  I walked around with Rachel.  I had hoped to look around the library while everyone else swam but Rachel fussed till the last 10 minutes.  One thing I struggle with is stranger's questions and yesterday it seemed tougher than usual.  She was so bright-eyed and beautiful in pink and people are so drawn to babies.  I wrote something about this awhile ago but I haven't posted it yet.  I think maybe I will sometime soon because these situations have played a pretty large role in how I feel, think etc..Now I think I understand why many hurting people would rather lie than get caught up in a conversation where they have to explain it all again...





She's sleeping.  I am going to go seep some tea and listen to some new music a friend recommended.  Thanks Fiona:)  And just breathe and be.


Jesus, you are my song in the night. My strength in the fire.

One of God's Little Lambs

Today we bought a blanket to replace one that had mysteriously disappeared.  It was a gift from a friend and the blanket looked like it had a sheeps pattern on it.  I try not to highlight any one gift because we have received so many gifts, and not just the ones that come in wrapping if you know what I mean!!! But I was so very disappointed that we had lost this one gift...and would you believe it? Today, we found one that is very similar...and it was the last one on the shelf!!! I hope you are reading this Rachel Friesen because I know that the one you bought our baby Rachel was also the last one on the shelf too....wow.

She is 6 Weeks old Today

These are some of the things that happened today and some of the thoughts that went through my mind....and I warn you, they are extremely random.  But what can I say? I am a mother to three little children and coherent thought is a rare occurance these days..

Last night I read the story of Lazarus to the kids.  The verse was "Everyone who trusts in me will LIVE even if they die." I wonder how to explain this to them....What does it mean to still live even when we die? I wonder what heaven sounds like to a four year old.  I wonder how to explain how Jesus had so much power to raise Lazarus from the dead, but that we don't believe he will do the same for Rachel.  Jesus gave his life so that we can have Life.  How do I explain that God is going to make Rachel better but He does not have to heal her body, that she will be all better in heaven?  I can see the wheels in his head turning, trying to process this.  He said to me, 'but Rachel has a cold, and she'll get better."

This morning, my reading for the day (in between helping Abigail in the bathroom, feeding Rachel, wiping up her puke, and getting all three dressed and ready for company) had these verses. "Today I have given you the choice between life and death, between blessings and curses.  I call on heaven and earth to witness the choice you make.  Oh, that you would choose life, that you and your descendents might live.  Choose to love the Lord your God and to obey Him and commit yourself to Him, for He is your Life." (Deut. 30:19-20) 

There is a choice.  

I think it is time to start exercising again.  I am tired of clothes not fitting.  I feel...blah.  This stage of limbo (in more ways than one) is wearing on me.  I feel yucky and un-motivated. I would rather walk to the fridge and grab another brownie that someone has kindly baked for us.  I am grateful for the baking.  But I am seriously lacking in some self-control.  I think of going back to the gym.  But that might mean meeting old gym friends who haven't seen me in months and possibly having some very awkward conversations.  And so I drag my feet...

I wrote a list of things I would like to do after Rachel is gone.  Things like her scrapbook, a memory box, a cd of pictures for family.  I thought it would be a way to keep busy later.  Now I wonder if I will want to see her pictures at all - if it will just hurt too much.  For just a short time, I allow myself to feel the pain that her loss will bring.  And I think, "I don't want to do a scrapbook. I want to be so busy with taking care of a baby.  Instead, there will be an emptiness that nothing can fill.  I think there will be days when it will seem so much easier to just pull the blanket over my head and refuse to get up in the morning.  And then I remember the verses I read this morning..."Oh, that you would choose life.."

Abigail made us laugh today..oh it is so good to laugh.  She asked to pray at supper.  She started telling God things she was thankful for and then, while looking out the window for inspiration, she said, "Thank-you God for.....bees".  Then, she screamed because she scared herself with the thought of bees.  It was so funny.  It seemed like she was trying to convince herself that they were ok. And I thought later, how there are things (like bees) I am not sure I want to thank God for myself. Like pain. Even though I have experienced how God has worked beauty from it later.  

God is teaching us so much through Rachel's short life...there is so much beauty because we know Rachel. I wouldn't trade Rachel for 5 healthy children. (or even one for that matter) She is so beautiful to us. A friend of mine described how she was impressed by both her tininess and largeness at the same time.  I love that description...Thank-you.  

C.S. Lewis said, "God whispers to us in our pleasures, speaks in our consciences, but shouts in our pain: it is his megaphone to rouse a deaf world."  ok God, I am listening.

At the end of the day, it rained a little.  And David pointed out the rainbow in the sky.  He said, "God keeps His promises." 

Thank-you Lord.