A Much Better Day

It's been a great day...(big sigh of relief!!)  Rachel smiled for us this morning - just little ones, but our hearts revelled in it.  She still doesn't repond to us the way she has before and we're looking forward to seeing her big grins again.  She threw up alot during the night (according to our respite worker) and she had major diarhea this afternoon - which explains why she has been so unhappy the past few days...but she was mostly content all day!

Playing with her Soother this morning..

I think this picture is so heartstoppingly beautiful. oh my heart!

  
This morning we had a little birthday party for Ethan.  I bought an Ice Age Cake from Safeway using a gift certificate that someone sent us (because they were reading this blog) Thank-you Meredith!  I was so glad for Dave's help this morning and so relieved that Rachel was happy!! 

I couldn't help remembering back to last year, when I put on a birthday party for Ethan just SIX short days after that awful in-depth ultrasound when we were told the news - that our baby would likely die shortly after birth.  I remember how hard it was to put on a happy face but knowing how necessary it was for us to 'celebrate' Ethan too. Wow - that seems like forever ago.. 

Aden (Ethan's good buddy), Ethan, and Abigail

Just before supper, friends took Rachel for us and we took the older two to Prairie Winds Park.  Ethan was so determined to slide down the whole hill by himself with the crazy carpet.  (it took him quite a few tries to get down) We laughed so hard and it was SO so good for us tramping around in the deep snow. 

If you prayed for us, thank-you! Today was a very different day than yesterday....it feels like the stress meter is a little more 'normal' today.  Sleep still isn't really happening for me but I have had some better nights lately.  We are looking into buying a new bed, using money that our church very generously gave us.  We tried out a memory foam and I liked it. Anyone (preferably someone who has a spouse that hurls themselves around at night?) have any suggestions on a good bed - one where you don't wake up every time the other person moves? :) 

I miss her smiles...

We miss Rachel's smiles...it's been too long since we have seen one...we miss our little happy girl... 

Another tough day today...constant 5 ml feedings...on average every 15 minutes - 1/2 hr today....Rachel is out of sorts and not moving much either, her legs and arms are limper than usual (maybe a result of the spell a few days ago?)..i almost thought i was going crazy again today...with frustration, weariness...

i know there are many people reading this who will get after me....bc I keep promising to call when I need help but i'm so bad at asking for help when I am in the midst of this...you can pray for me about that;)  I think I am scared to show you how out of control I really feel sometimes...

God, I have nothing left.  please help.

Alexander's Quest

I have wanted to write about this for a long time now!!  I won't be able to write as well as I would like because time is short....but...Thankfully, our friends have done a marvelous job explaining their story and about the foundation they started (in Alexander's name).  You may remember me writing about Alexander, a little boy we got to know at the Flames House, who passed away on October 23rd.  Our friends realized that there were foundations that gave large wishes (one big trip etc..) to terminally ill children (which is great!) but they thought "wouldn't it also be great if there were little wishes that could be granted - ones that could make a difference over a longer period of time?"  Their foundation is the result of alot of hard work - and more importantly, the influence that their precious little boy made on their hearts (and many others too!) It is a beautiful way to honor his life and I am excited to share this with you. 

This is their mission in their words...
Our mission is to grant small wishes to 2 to 17 year old children who are terminally ill (6 months or less to live). 
We are currently working with the Alberta Children's Hospital to offer free massages to the parents of children on Unit 1 (Oncology Unit).
One night a month we will be bringing a special treat to everyone on unit 1.
Another of our goals is to bring awareness to childhood cancer and childhood brain tumours.
Alexander's Quest will also be making donations to help fund childhood brain tumour research.

Please check out their website and Facebook page.
www.alexandersquest.ca
www.facebook.com/alexandersquest

And, We were their first "Wish Warriors"!  They gave us a one year pass to "Stir Crazy" - a play place for kids.  Amazing....Tara and Jonathan were over at our place for supper, and they were asking us if we had heard about the place and we chatted for a bit about it - when out of the blue (for us, not for them) - they pulled out this pass.  Wow.  Thank-you.  Dave just took the kids there tonight... and both kids are so excited - they are talking non-stop about it.  This is such a good gift.  

We know that our kids are definetely feeling the stress in our home - they know we haven't done certain things because of our concern for Rachel - and we don't have much to give them these days.  Ethan said to a friend of ours "Rachel has almost died hundreds of times." Maybe it feels that way for him...We need to remember to have fun with them - something so needed these days.  And because we know what it is like to receive something like this - it makes me excited to think about how this will help other families. 

Thank-you Tara and Jonathan.  We're cheering for you.       

Tough Days

It's been a tough tough day here....Rachel is ok but she's been crying alot today and my stress level was waaaay up high this afternoon.  I was nervous for a few hours when I couldn't reach Dave but we are ok.  I am so very glad that the day is over.

Thank-you everyone for all your notes in the past few days - they have been a huge encouragement to me.  I would love to respond but time is so short...thank-you for all your kind words and for your prayers for us.   

I have several people on my mind tonight.  Last night our respite workers (a married couple) told us about yet another burden they must carry. His brother died on Saturday, and this is only a short time after his Father was killed in El Salvador.  They have had blow after blow in the last several months and it is so hard...so hard to see what God is doing, and to trust Him.   Please pray for them and for his family.  His mother is still in El Salvador.

I am also thinking of Dave's Grandparents today.  His Grandpa has had the chronic form of leukemia for many years - and now there are concerns that his recent cold/flu may have triggered the chronic leukemia into an acute form - so he is in Hospital now. (with a very high white blood cell count) Praying for strength for them. 

Heart Spell Number Six

This morning, I was helping the two older kids with breakfast downstairs at the Flames House when a nurse brought Rachel to me in the beginning stages of a heart spell.  We gave her two doses of morphine. This time it really seemed as if she was fighting the spell.  Her eyes would roll all the way up and she would go still, and then suddenly her body jerked and her eyes straightened to look at us again.  It wasn't as bad as some others have been but still, it was very hard to watch (and hear) her struggling to breathe again.  So hard. 

Dave reminded me that it has been 6 weeks (to the day) since her last spell.  We had an inkling yesterday that something was coming because she slept almost the whole day - and when I asked the nurses in the morning if she had slept at night and heard 'yes, she slept so well!!' - I had that feeling too that something wasn't right.  

We moved home after lunch as planned.  Rachel is doing ok - pretty lethargic, and she is having some trouble feeding even though she seems hungry - but her color is good. The last six weeks have been a wonderful, happy stretch of time for her.  We are so thankful for it.  And now the reality is setting in again.. Thank-you so much for your prayers. 

Back to Prune Juice

Well, the brown sugar was short-lived.  She was throwing up ALOT and we thought that maybe the sugar wasn't sitting well in her stomach, not getting digested well....So, we're back on the prune juice. (and she stopped throwing up) 

Dave took Rachel to see our cardiologist this afternoon.  (I took Ethan to preschool and spent a bit of time at home with Abigail.)  Her oxygen levels are in the mid 60's.

We're moving home after lunch tomorrow. 

Ethan's Five Today

Birthday Pictures have been added down below....!

Just a quick note today - We are enjoying our time at the Flames House.  Today is Ethan's birthday and we are celebrating later at supper.  Joe, our chef here, has made him a monster truck cake!! We went out this morning to Bowness Park and walked around on the ice pond  - with just the two older kids.  This is a rare opportunity and it was so good for us.


Rachel had her third RSV shot this morning and she did really well!!! And her mommy did well too.  We weighed Rachel and she is now 7 lbs and 6 ounces.  (although we are hoping to do a re-weigh later here because that seems pretty high!)  It really surprised me to learn that she has actually gained some!


We have switched the prune juice in Rachel's feeds for brown sugar (doctor's suggestion honest!:) )  to see if that will make a difference in her bm's - but not so far. She's still having some trouble with them.  she really seems to love the taste though! Her feeds have increased dramatically in size!  For months her largest feed has been 30 mls - and she did one feed of 60 mls yesterday!!!  She has also been throwing up - which might be because she is drinking too much too fast?? We hope she hasn't caught some kind of bug.  She seems pretty happy overall though - lots of smiles for everyone.


Here are some pictures of our birthday celebrations this weekend.....

Rachel's 8th month birthday cake - it doesn't even look like a cake does it??
Amazing...

Our family of five!  We invited our Calgary family to join us at the Flames House. (and a few friends showed up too!)  Thanks for celebrating with us. 
And Thanks to Joe for an amazing cake!

Monster Truck Cake....Thanks again Joe!!

John Deere - what a perfect gift.... 
Thanks Grandpa and Grandma!

She's 8 months old Today!!

Rachel is growing again! Not in weight but she is getting much longer.  Yesterday I put on a sleeper that I thought would never ever fit her and it does!! It's a 0-3 month sleeper and I have a few more in the closet.  I told the givers of these sleepers that we probably wouldn't be able to use them....Sadly though - the pants that fit her around the waist are like shorts on her, which would be fine in summer but not now:( 

Here she is...all ready for Valentine's Day..not sure what is going on with her hair today though:)

And now, I MUST get packing - we're off to the Flames House until Wednesday next week!!  And tonight, we are having a little party to celebrate her 8th month birthday...we're getting a special cake. I'll post pictures later...

The Pictures of Her Heart

As requested (thanks for the note Laura!), here are some pictures of the original hand drawings - from that day on January 20, one year ago.  If Dr. Fruitman sees this, we still think you are an excellent artist.  I think at one point she has even hand draw something - upside down - so we could see her draw it as she explained. 

*To answer your question, Laura - I think that the main difference between Rachel's heart and other right isomerism cases, is the aorta.  Usually it has two branches - one main branch carries blood to the body and the other carries blood to the lungs.  In her case, the aorta is one branch with tiny arteries leading off of the aorta. (plus it is not in the usual position)

First, what a normal heart looks like....

And now, here's Rachel's heart:

You can see a few notes we jotted down later - as well as a food stain - we carried it around alot in those early days to help us explain her heart's anatomy to people. 

The First Echocardiogram

A year ago today, we made our way back to the Foothills Hospital to do an echocardiogram.  It was a gruelling 3 hour ultrasound - gruelling again because I felt so faint lying down - and stressful because we were learning more about her body.  That week of tests and meetings was easily one of the most mentally and  emotionally draining weeks of my life.  Grief is exhausting.


This was also the day when we found out the gender. During one of the breaks when we were left alone, we said to each other that we wanted to know so that we could love her/him more fully in the time we had left.  I remember the moment when the techinician told us that the baby was most likely a girl. I felt struck by a deep tenderness for her - as well as a deep sadness because I had wanted a sister for Abigail and this wasn't the way I had pictured this.  Dave and I were both crying. It was an emotional time.

Later, we sat down in a consultation room with the cardiologist - the same one we still have now.  First she drew a picture of a healthy heart.  Then she drew a picture of our baby girl's heart.  I was so shocked.  It looked nothing like a normal heart. I remember asking questions and trying to retain her answers, but her heart was so complicated and there was so much to learn - our minds were reeling. 


She told us that surgery might be an option. She discussed the possibility of a heart transplant but because she had never seen a heart like our daughter's - she couldn't tell us what the options were yet.  And later, we found out that there are no documented cases like hers in the world.  Her arteries and veins were abnormal but they were not obstructed and there appeared to be decent blood flow and no leaks.  She promised to get opinions from Edmonton - she would call us when she knew more. 


After this very painful discussion, we met with a Doctor to discuss doing an amniocentesis.  We decided to wait until after we had spoken with Genetics to make that decision. 

After this, we stumbled out into the world once again and went home. 

Dave's note to me Jan 19, 2010

A year ago today, Dave stole my journal and wrote a note in it for me.  This is a little of what he wrote. (I'll ask his permision later...he he)

Oh babe, I didn't want to wake into this world today; newly difficult and strange.  But I'm so glad that I get to walk through this with you.

"The Lord is my Rock, my fortress and my deliverer,

my God, my Rock in whom I take refuge,

my shield, and the horn of my salvation, my stronghold.

It is You who light my lamp;

The Lord, my God, lights up my darkness.

By you I can crush a troop,

And by my God, I can leap over a wall."

Ps. 18:2, 28-29

"The Spirit helps us in our weakness;

for we do not know how to pray as we ought,

But that very Spirit intercedes for us

with groans that words cannot express."

Romans 8:26

I love you.

One in Ten Million

Rachel has been having some more tough days.  Still no spells but she had a really difficult bowel movement yesterday where I had to help excavate it.  (I have never seen a bigger bm from her - so it was a bit nervewracking for me) We have also noticed that she is sleeping more but waking often to sip a bit of milk (maybe 5 ml) and trying to sleep again.  Sometimes, every 15 -30 minutes during the day.  Our respite worker told me that she was up every hour last night doing the same.    


Dave and I were able to go on a date on Monday night - thanks to some very wonderful friends.  They even took all three and we used a Tony Roma's gift certificate from other friends.  It was so very amazing to be just the two of us in a restaurant - with no demands, no interruptions....That heavenly evening seems so very far away now....but it does give us a glimpse of the REST that is coming for us. 


Some interesting Medical information:
Awhile ago I was contacted by a mom in the States who has a little boy, about Rachel's age, with many of the same anatomy issues.  The one main difference is that Rachel's pulmonary arteries are connected to her aorta, not the heart.  This makes her case extremely rare.  This mom shared our story with her cardiologist, who specializes in Heterotaxy (what our babes have, in very simple language this means that in the beginning stages of development in utero, the right and left sides were confused) There are two types - right atrial isomerism (what Rachel has) and left atrial isomerism.


In my friend's words, this is what her doctor told her:
"...in the literature this [Rachel's kind of pulmonary arteries] is only 1% of Right Isomerism cases." 
and my friend's thoughts on this:
Right isomerism is like 0.2% of all CHDs [cardiac heart defect]
....so to have something that is 1% of .2% has got to be (I am bad at math) but it has to be like 1 in 10 million or something." 
I checked later - he he - the math is wrong but it still is amazing.  It is still safe to say that Rachel is one very special little girl.

This Cardiologist also said that 99% of the time when they do a shunt on these babies (a common procedure to open up the pulmonary veins and often a crucial step that needs to happen before a heart transplant), they die - confirming yet again to us what all the Heart specialists/surgeons have said about surgery.  And in fact, even if this procedure would work, it would only be temporary given the nature of her arteries.  She is not a candidate for a heart transplant for multiple reasons.  So if any of you are still wondering out there why we are not doing surgery - please don't wonder anymore.  We ourselves have crossed that bridge of wondering long, long ago. 


So often I marvel at how fortunate we are to be born in this country - and all the medical help that is available to us.  I think that having Rachel will deepen our compassion even more, for the parents whose babies die in our world.  So many children are dying - not just because they don't have access to surgeons but because of simple treatable diseases.   I am incredibly fortunate to live here and have access to world class facilities - and a government that provides respite for us at home and a Hospice where we can go to rest.  My child will not die because I did not have the money to pay a doctor - or because I was unable to feed them proper food, but many children in our world do - and my heart breaks because of the contrast between our world and theirs.


Several months ago, I spoke to Compassion Canada about having forms at Rachel's funeral - for people who wanted to give something in honor of Rachel.  It seemed extremely fitting to honor her life in this way.  We have the forms now already so if anyone wants one, please feel free to ask me for one.  I would love to know if you decide to honor Rachel's life by giving a gift of love to hurting children - either to this organization - or another one.  Here's a link to the fund that we have chosen.  You'll find some stories there too, of how this fund changes kids lives and brings Hope to their communities.


Medical Health Response Fund

Front of the Card
Isn't she cute?

January 18, 2010

One year ago on this day, we left our kids with a friend and drove to the Foothills Hospital - for an advanced ultrasound.  It took a little while to find the green building with all the windows.  I remember feeling so very nervous that I was shaky, but also thankful that I was going into these new unknowns with my best friend at my side.  I waited inside for Dave to find a parking spot and when he came in, we sat on a bench on the main floor, held hands and prayed. 


We stepped around some reno/construction mess, took the elevator to the 2nd floor and walked across the hall into a spacious waiting room with sunlight streaming in.  Our appointment was at 10 am, but the waiting room was packed full that day - and I think we had to wait a good hour before the ultrasound.  I didn't mind waiting so much - I was afraid of what we would be told next and it was easier in some ways to remain ignorant.  We were taken in shifts to a back room where we waited with several other couples.  I watched as they went in and out of ultrasound rooms and I looked for signs of bad news.  I couldn't see any.  A few of them laughed and spoke about getting pictures.  A bulletin board next to me was full of pictures of happy twin babies and even a few triplets.  I had a lot of time to study that board.  And a lot of time to think.  I remember wondering how many parents before us had come through this place - and had received life-altering news.  And I wondered what we would hear..


The ultrasound took a very long time.  I had to ask for several breaks to sit up because I was so dizzy from lying down.  (With all of my pregnancies I have had a hard time with fluctuating blood pressure) The ultrasound took nearly 2 hours, not just because of the breaks, but also because Rachel's anatomy was so complicated.  Sometimes they had to leave the room to study some of the video images and consult each other.  Unlike the last ultrasound, Dave was able to sit beside me and we watched our baby on the screen in front of us the whole time. 


While they studied our babies anatomy, I could feel her moving inside me and watched her on the screen.  And I prayed fervently - I even begged God to make everything ok.  I said "God, please let them see that nothing is wrong.  I know you can do a miracle and amaze everyone right now."  And I sensed Him saying something back to me.  Now, I am not one to say this quickly.  In fact, I even tend to be a bit  wary when people talk so confidently about God speaking to them.  But the words seemed so clear. 


What I heard was this, "No, It has to be this way, for now.  It has to be this way - for my glory." And the sense I had at that moment was God's deep sadness at saying "no" to me.  I also felt hope at the words "not yet", not because I believed that God would heal her on this earth (I still hoped for that and I asked God for it right up until her birth) - but I took it to mean that one day her body would be made whole.  I sensed already that God would use this precious life to work good in our lives.  Somehow.  It was so difficult to see but I chose to believe. So often it really came down to this one choice.  Would I trust Him? I knew that He was asking me to do a very difficult thing. Would I carry this child and trust Him, no matter what the outcome?    


Finally they lead us into a consultation room with a leather armchairs and plants and magazines.  Dr. Simrose came to talk with us.  She broke the news to us that they were seeing multiple abnormalities and we would have to come back in a few days for an echcardiogram to take a look at babies heart.  She did tell us that the right ventricle of the heart was almost non-existent, meaning that she had HRHS.  She said that the organs were not where they should be, and there was only one kidney.  Our baby had dandy walker syndrome (a brain malformation) - which on it's own might not be serious - but everything together increased the chances that this was just the tip of the iceberg.  She had tears in her eyes as she talked with us.  It was devastating news.  I felt crushed and terrified.       


And at the same time, I remember feeling thankful for this Doctor's caring manner.  I know now after reading similar stories, that this could have been so different.  At one point, I said to her "I know I shouldn't think this way, but I can't help wondering if I did something wrong..." (I had the H1N1 vacination at 13 weeks, too much cafeine, not enough vitamins - all the usual mommy 'guilt') And she responded by saying  "No, this was set in place from the very beginning." She explained how right from the start, when the cells were multiplying and separating - it was as if the right side and left side got mixed up - and everything had to develop accordingly, working around it even, in order for life to continue. 


Somehow those words encouraged me.  I wanted to believe that God had some purpose in this - that our babies design was not an accident or a result of my negligence.  Because if God's hand was in this - there would also be good somewhere in it.  I clung desperatly to God - where else could I go?


We talked about the possibility of an amniocentesis.  We set up two appointments - one, to meet with Genetics and two, with a Doctor who performed amnios.  And we felt utterly overwelmed and exhausted.  And yet somehow, David and I stumbled out of there and made our way home - four hours after we had arrived. 

Thank-you picture

I'm working hard to get this Thank-you/birth announcement picture out.  If you did not receive a picture from us and you would like one, please let me know.  We have been loved so well in this last year - by so many people, that I may have missed someone.  It may take me awhile to get them all out.  And it is a pretty long list.  So please, do not hesitate to tap me on the shoulder, send a note etc... to ask for one. I am amazed again as I look through all the names.  Thank-you again to the wonderful photographers who gifted such lovely photos to us...

In my mind, I had always thought that I would do a birth/death announcement at once.  I think I kept waiting for that to happen (and I was afraid to have a bunch of birth announcements sitting around if she died suddenly)...but she's almost 8 months!!! Time for a birth announcement, wouldn't you say?  Thank-you so much for your friendship this last year.

It has been a tough day here.  Rachel has been fussy - and she's needed to eat every hour or more.  We didn't have respite last night....but tonight we do! I'm so looking forward to sleeping.  Good-night!

Remembering Abby Halford

I have been wondering about how to write about this precious little girl that has captured so many hearts.  It has been hard to know what to say.  I am glad that she is done with the troubles of this world - and that she is in a place more beautiful than our wildest imaginations. But my heart breaks for her parents, her brother, her grandparents, her friends...because she is so desperately missed. What they wouldn't give for one more kiss, one more cuddle..and there is nothing any of us can say to change the fact that it - just - plain- hurts. 

Dear Abby,
A faveorite memory I have of you is saying goodnight at the Flames House.  You were wearing your soft pink pjs with blue oscar the grouches all over them.  You just had a bath and smelled so sweet. You were shy with me, remember? You hid your face under your arm.  But you weren't shy with Rachel - you had lots of smiles for her. I know that you loved being with her. I remember too how you loved to play...we loved to watch you play.  Those pink and purple balls at the Flames House will always remind us of you Abby.  We miss you.    
 

"See" by Steven Curtis Chapman

Right now all I can taste are bitter tears

And right now all I can see are clouds of sorrow

But from the other side of all this pain

Is that you I hear, laughing loud and calling out to me?

Saying "See, it's everything you said that it would be,

And even better than you would believe.

And I'm counting down the days until you're here with me,

And finally, you'll see."

Rough morning

This morning was rough.  Rachel cried for an hour and a half and I just couldn't settle her.  If Rachel were a healthy baby girl, I would have put her down to cry it out, but I can't do that with her.  Things can change very suddenly and so I want her in view.  Plus her crying for this length of time is very unusual for her.  Meanwhile, Abigail was mad at me because I hadn't given her breakfast yet and Ethan wanted help to listen to his new cd's...and I was short with them.  I felt so frustrated, so helpless, so very sad about my friends' losses, and stressed out about the present situation...

Dave came home to help and Rachel did finally settle but I am so worn out...
We feel like we have had a newborn baby for almost 8 months...

Please pray for us.  Pray for me that I can keep my cool.  Pray for my kids - that they won't take our stress on as their own...this is not a burden they need to carry. Right now I can hear them laughing and playing - that makes my heart feel better..but I know there are bound to be more times when I'm going to feel the pressure building up again.  

thank-you so much for praying for us.

On a cold winter's night...

Thank-you everyone for your comments and for sharing your personal stories with me.  I often follow the links to your blogs (if you have one) even if I don't get a chance to send you a personal note myself.  With one friend's permission, I would like to share something that she recently wrote about grieving.  I think she expressed this very well.  Behavior of the Bereaved

Thanks Kara, for sharing about your experience.  I think that may have been the word he used too.  I wish we had known each other then. 

We are enjoying being stuck at home tonight.  What a cold night!! I just played "Go Fish" with my kids and we might put together a storage cabinet.  And Rachel is doing really well.  I have had a few moments of anxiety when she was crying - once at church - ha! I used to be stressed just about keeping an eye out for two healthy kids! Now I visit, warm a bottle, watch my other kids, and watch to see if Rachel's going to stop breathing normally/if her crying is different, and watch for where Dave is - in case I will need him, all at once.  So in case I look distracted...this is probably why...It feels strange that my stress level has been a bit higher even though she is doing better! But it has been awhile since her last 'spell'.  Please pray that my heart can truly rest.  Thank-you. 

And almost constantly, I am thinking of and praying for Abby's family...I spent some time this afternoon watching videos on her blog and looking at pictures.  What a beautiful little girl - she brought so much joy to her family and many others too.  The memorial service is on Tuesday morning.

"It's the Brain"

Another walk down memory lane today...

One year ago today, I left the kids at home with Dave and drove to Strathmore (30 min. drive) for my regular prenatal appointment.  I was glad to have some alone time in the van, to listen to music, to just be quiet...We assumed that we wouldn't learn anything new about the ultrasound, that he would know just as much as we did.   


As I walked into one of the rooms, I saw my Doctor sitting at the desk - looking at some papers.  And he looked so very serious, and almost distraught. It was like he didn't want to be there.... And I knew in an instant that he was looking at our ultrasound results.  I think I had started to say something like "yeah - that was a tough ultrasound or something" and before I knew it I was sitting and he was saying to me "I'm so sorry. It's the brain." Those words hit me like a ton of bricks.  And then I think I said "But I asked about the brain - she said it was fine. I thought it was her heart." I was so stunned by what was happening...


I felt like I was stuck in some horrible dream.  On all the previous visits, I had walked in there, chatted with my doctor about the weather, our kids, everything else - then we heard the heart beat, checked my BP, and I went home...Wasn't that the way this was suppossed to happen too? 


Instead I was having a conversation about the anatomy of my baby's brain.  And about an obviously enlarged area which indicated serious problems in development.  He said the left hemisphere of the brain was enlarged - and not draining fluid properly.  Or maybe he used the word ventricle - and I wondered if that's why I had thought the technicians were talking about her heart? To this day I still can't remember.  It might be in that stack of papers that I can't bear to go through....But I couldn't wrap my mind around it that day.  It didn't make sense to me.  I kept asking him about the other things I thought were wrong - the heart and other organs.  (the report said that they were having trouble placing them) I was afraid of missing my chance to ask questions but at the same time - I couldn't comprehend his answers.  

He tried to encourage me saying that sometimes these things turn out to be nothing.  He gave me an example of a couple that had divorced after receiving similar news - the husband wanted her to abort and she refused.  In the end the child was born healthy.  He gave other examples and knowing our faith - he knew that we would choose to continue this pregnancy.  He wanted to encourage us in this.  Because we couldn't see the ending yet...


And I clung to those stories.  I somehow managed to walk out of the doors and into the van.  And then I called Dave on the cell phone.  I remember trying very hard to stay calm and barely getting out the words, "Dave it's the brain." I still cry now when I remember that morning.  Dave remembers too what it was like to hear me say those words.  It was such a beautiful clear day....and when I got out of Strathmore, I started crying and I didn't think I could stop.  

I had worked with special needs adults before - and I think that experience made me less afraid of having a child with disabilities.  And I wasn't naive about pregnancy - I knew there was always a possibility of having a child with special needs.  But hearing these words was another thing altogether.  I felt so completely unprepared for what might be ahead.  Of course, how could I even prepare for something like this? And it's not like I could research a certain syndrome on the computer....and I would have if I could.  I tried to remind myself that I was jumping ahead to all the 'what if's before really knowing and seeing my own child.  But it was so very hard.     

That was January 8, a year ago.  It would be another difficult wait - another week and a half before we got the rest of the news.  I remember sending out an email to a wider group of friends that day.  And I remember feeling like I was being held up by strength that was not my own.  I know some would say what I was feeling was 'shock'.  I really believe it was more than that.  I am not sure I have ever experienced something like it.  I knew that so many people were praying...and I knew that God was with us.         

Thank-you. Thank-you for praying for us in those early days.    

Good-bye Sweet Abby

We're feeling so heartbroken for our friends tonight.  I just found out that their little girl went to be with Jesus last night.  Her name is Abby and we just celebrated her 4th birthday.  We have gotten to know them through the Flames House and it is so hard to believe that she is gone.  Please pray for their family.

Doing Really Well

I just wanted to let you know that Rachel has been doing really well lately.  She is eating alot - meaning, that she is eating 20 mls at a time, sometimes even 30 mls (2 tbls).  And she is eating often, sometimes every half hour.  So I have felt busy taking care of her - maybe it's a growth spurt!  It feels strange saying that when she still only weighs 2 pounds more than when she was born! 

She has also had some very happy moments and has even laughed for us. We are enjoying this time with her!As for sleep - I think I always feel tired!  But we are doing well.  We don't have respite on Fridays and Sundays and then we play catch-up on the rest of the days. 

One year ago..

One year ago today at 10:50 am, I was having my routine 20 week ultrasound.  I couldn't remember the time at first and so I checked my calender.  Then, as I sat down to write, I noticed that the time on the computer was exactly 10:50 am. That was a bit of a shock for me.  I honestly didn't plan that at all....


My mind is going back to that first fateful day.  I had written some things in my journal later that day, but there are alot of things I didn't write - how I felt, what I saw, what I was thinking.  I think, at first, it was too difficult to write about.  But there are things I don't know if I can ever forget about that day... 


Walking in to the clinic - the same one where I had been with my two previous pregnancies, near the Cheesecake Cafe in Sunridge...


Watching a little girl playing with her doll in the waiting room.  I remember it was similar to one that Abigail had just received for Christmas.


Talking with Dave about our plans to grab some lunch to celebrate after....if everything was well.

Telling the Technician when I walked in to the ultrasound room that I felt nervous....She laughed and said, "Why would you be?" I know she was trying to put me at ease but it didn't work. 


Somehow I just knew.


I remember that the techinician was really chatty - and I found this to be helpful actually, by keeping my mind off what she was looking at.  The silence can be so deafening.  I don't think she was expecting to find anything out of the ordinary. She was new - she hadn't been doing this job for very long.  She had just moved to Calgary and we found lots to talk about.  But then her voice dropped off and she became quiet...


I remember thinking "I should ask if my husband can come in now..." because I was feeling very scared.  And alone.  And I was stealing myself to hear the bad news and I didn't know how or when it would come. I had received bad news in an ultrasound before and I was alone.  I didn't ever want that to happen again.   


I remember asking her - after a long silence - what was wrong with my baby.  I remember how hard it was to get those words out.  She said she was having trouble finding some of the babies' major organs and needed some help.  I asked if her brain was ok.  She answered quickly "yes, everything is fine." And then she left to go get a few other technicians.  She probably had no idea how to answer my questions and I don't know why I was asking them when I was so afraid of the answers.

They tried to talk quietly but it was hard because I was lying down right beside them.  It felt like a lifetime and I know that much of it happened without Dave there.  I think I was too anxious, too desperate for them to find what they were looking for - and I couldn't ask them to go get him. I know that doesn't make sense, after what I just wrote about not wanting to be alone.  But I can't explain it.  I had such a hard time getting my words out - my wishes etc...

I was certain that they were talking about my baby's heart but when I asked them to repeat what they had said (to each other), they wouldn't answer.  The head technician said to me that they didn't want to alarm me but they saw a cyst in the abdomen.  (I think this later turned out to be her spleen) Finally they did go get Dave, but by then it was too late... I had heard enough to know that nothing would ever be the same again.  The head technician said again that they were having trouble seeing some of the organs - the heart, liver, kidneys. They wanted me to do an advanced ultrasound.  I knew they weren't telling me the whole truth...but I was much too afraid to press them on it. 

And I remember thinking it was better that way - that maybe I needed two more weeks to prepare myself for hearing everything....

Then, they showed us our baby.  And Dave sat beside me, holding my hand. But we didn't watch with the same joy and excitement we could have had. I knew what that kind of experience was like - and this wasn't it.  We fell in love with her though.  We saw perfect little arms and legs, a spine.  They told us that even the whites of her eyes were developing.  I felt relieved about these things - simple, yet so incredibly complex at the same time.  She (although we didn't know it was a she yet) was on her tummy, with her bum up and her legs curled up underneath. 

I remember thinking that we should have bought the ultrasound pictures.  I had planned to but everything threw me off. Later in the car, I had this incredible urge for us to turn around and get them in case she died.  But we didn't in the end.  I remember glancing at the waiting room as we left - the last place I had been before our world was first shattered - the place where I had only my premonitions.  The little girl and her doll were gone - replaced by several obviously pregnant women.  I envied them even though I knew nothing about their pregnancies.

And I felt so numb, so shaken.  It was hard to walk out that door and into the world again.  It was like life had stopped for us, and yet we needed to get home and get our kids, relieve our babysitter so she could get on with her day.  I felt like I was jerked back into the world of reality and I wasn't ready for it.  But I had no choice.  I know that I wanted desperately for someone to watch our kids for us - and at the same time, I needed to be near them too....
 
I remember calling our family and our friends.  We couldn't say much so we waited to tell too many others.  I think after a few days, I even started to convince myself that maybe I was wrong about what I had heard the techinicians saying to each other.  I tried to tell myself to not get ahead of myself, to wait until we had the next ultrasound.  

The rest of the day is under a haze.  I can't remember any more.  

I read my journal too and it doesn't really make sense.  I think what I was saying was "God help." over and over in different words. 

God, be our help. 

Day One of 2011

Last night I was supposed to go to sleep early so that I could take the second shift with Rachel.  But I couldn't sleep.  I read my journal instead.  And did some journaling about the last year.  I found as I reflected that I couldn't think of anything of real importance that didn't relate to Rachel.  Our first ultrasound - where we heard the initial news - was on January 4th, 2010.  A lifetime ago.  A year of knowing...and not knowing.  Our faith was tested in new ways. It was a year of shattered dreams but it was also a time when we experienced so much of God's goodness, and saw beauty that we couldn't have known without also experiencing the pain.  

This past year, I was introduced to a kind of stress that I have never known before - the kind only a parent of terminally ill child can know.  Dave and I were joking the other day that this year has given both of us a lot more wrinkles around our eyes.  I feel like I have aged 5 years in one.  I have felt my heart clench with every cry.  I have lain awake at night wondering if I had just held my daughter for the last time.  And I would have loved her this way no matter what kind of special needs she had or how she looked, or how she communicated with us.  She stole our hearts from Day One - right from the moment the test strip showed 'positive'.  And God loved her long before that.  A friend gave us a cd of Andrew Peterson's music and there's a song that has impacted both Dave and me....It's called "Love is a Good Thing"  I think that maybe this descibes 2010 to a tee for us -because this is what Love has done...

It knocked me down, it dragged me out, it left me there for dead.

It took all the freedom I wanted and gave me something else instead.

It blew my mind, it bled me dry, it hit me like a long goodbye,

and nobody here knows better than I that it’s a good thing.

Love is a good thing.

It’ll fall like rain on your parade, laugh at the plans that you tried to make,

it’ll wear you down till your heart just breaks and it’s a good thing.
Love is a good thing.

It’ll wake you up in the middle of the night, it’ll take just a little too much.

It’ll burn you like a cinder till you’re tender to the touch.

It’ll chase you down, swallow you whole,
it’ll make your blood run hot and cold.

Like a thief in the night it’ll steal your soul, and that’s a good thing.
Love is a good thing.

It’ll follow you down to the ruin of your great divide,
and open the wounds that you tried to hide.

And there in the rubble of the heart that died you’ll find a good thing.
Love is a good thing.

Take cover, the end is near. Take cover, but do not fear.

It’ll break your will, it’ll change your mind, it’ll loose all the chains of the ties that bind. If you’re lucky you’ll never make it out alive, and that’s a good thing. Love is a good thing. It can hurt like a blast from a hand grenade when all that used to matter is blown away. There in the middle of the mess it made you’ll find a good thing.Yes, it’s worth every penny of the price you paid. It’s a good thing.

Love is a good thing.

Do not fear.

I don't know what 2011 will bring.  Honestly, I feel a bit afraid of it.  But as I look back, I know that God was faithful in bringing us through.  I think God is saying to us now "Do not Fear. I am still in control. Here in the middle of the mess, you'll find a good thing."