Just Saw This Picture for the First Time Tonight....

 Thank-you Val!! Oh, she is so beautiful and it makes me miss her so very much.  I was just downstairs trying to smell her in this very same blanket, just before opening my FB to see this....She looks SO FULL of LIFE....I want to scoop her up and bite her and feel her lips on my face. I want SO BADLY to kiss those soft little feet and feel her toes curl against my face.  



Please pray for Noah

In the past little while, it has seemed that so many people we know have just received difficult news and are now facing new unknowns in their life.  Some of our friends are facing some difficult news about the health of their children. And their news has shaken me in ways I can't fully explain right now.  Having just said good-bye to one child, I struggle with fears of my own - that my 'healthy' children will die too.  I know that our Shepherd is Good, and he has carried us and provided for us until now.  But still my mind races ahead...and I wonder "Will He be Good then?" And again, I wrestle and choose to trust Him because we have known Him to be faithful.  I know your list is long too, but would you join me in praying today for one of these friends of mine? 


Their names are Darryl and Kara Dedert.  Maybe you have already read their blog and you know that they have a child named Calvin who has special needs.  And that they recently heard the news that their older son needs to have heart surgery. (his aorta is narrowing) I have never met them in person - we were introduced by a mutual friend - but her story, her honesty in wrestling with the hard questions, and daily choosing to keep trusting her Good Shepherd - has spoken loads to me.  I can't remember when I was first introduced to them but I feel a deep connection to her, because of our two children - Calvin and Rachel. We'll be in Germany when the surgery takes place but a piece of my heart will be with them that day.  We pray that they will know the peace and presence of their Heavenly Father.
The surgery date for Noah is set for October 3rd.
http://www.karadedert.com/

My Daddy's Lap

The last week has been so busy - our minds occupied with plans for our Berlin trip (leaving tomorrow!) and with so much other life stuff too.  But there have been times when the dam has broken and the tears have flowed.  Times when no amount of distraction or business will save me. Yesterday night after a very full day, I was washing my face and suddenly it hit again.  Our little girl, the one I gave birth to, is really gone.  And somehow these moments hurt so much more when they don't sneak up - when they just wham you on the head, on the heart.  

Another time was a few days ago.  I was driving to the gym.  And I popped a CD in the player, one that a friend had made for us, a collection of poems that she's written.  This was the first track on the CD.  And all of a sudden I was sobbing.  It hurt so very much, and I was scared that I could never stop but at the same time, I knew that I needed it.  I needed to grieve.  I needed to remember. And this picture of our Father holding our little Rachel, holding us - was exactly what I needed to see that day.  And this was the image still in my mind, when I bought the Willow Tree figurine for David, later on that same day.      

Our friend wrote it for another family, whose little boy died.  I forget the details now.  Originally the pronouns were male.  But, on the CD we listened to, the pronouns were female.  (just got an email from her, saying that this is Rachel's version!) This was read by the author's daughter (Abby) - which made it that much more powerful for me.  I could picture our Abigail saying it too. Thank-you so much....

My Daddy’s Lap

My Daddy’s lap is a very good place.
It’s where I go when I’m too sad to play.
Sometimes Daddy rocks me.
Sometimes we talk about things.
Sometimes I fall asleep.

My Daddy puts his arms around me,
And holds me tight against his chest.
I can hear his heartbeat,
And I know I’ll feel better soon.
Even though I still have more tears.

When my little sister went away,
I asked my Daddy where she went.
Daddy said she was too sick to play anymore,
So she climbed into God’s lap for a rest.
God's lap is the best place of all, Daddy said.


When God puts His arms around you,
And holds you tight against His chest,
You can hear His heartbeat.
And you feel better right away.
And you have no more tears ever again.

One day, a long time from now,
I’m going to climb into God’s lap, too.
I’ll snuggle in, right beside my little sister,
And know we’re in a very good place.
Just like my Daddy’s lap.

 By Rachel Friesen
from her blog "Shelf Life"

Happy Birthday David!

This year, instead of recieving the usual birthday fare from us - cd's and/or books - we gave Dave something completely different.  I saw this yesterday at the Mall and it reminded me SO MUCH of how it looked, and felt to watch David love his little Rachel.  And it was only a short time ago that he held her on his lap, just like this....

And Dave thought it was the perfect gift too! I love you Dave.  You are a wonderful father to our three children.  Rachel was so blessed to be loved so well by you!!

After we gave Dave his birthday present, we jumped in the van and headed for Strathmore.  Our kids had check-ups with our family doctor - checking their heart beats, their weight, and we talked about a few concerns I have had for awhile - but still just minor ones.  So glad we only have small conerns to think of right now - and so much feels small now in comparison.  It felt so strange to be sitting in the same chair where I first heard the news about Rachel's brain anomaly and at it felt SO GOOD to be able to tell him the rest of Rachel's story.  He was so interested in hearing about her and it was obvious that her story really moved him.  He told us that when he was seven, he had a baby sister (two months old) that died.  I told him how much I appreciated the way he had broken the news about Rachel to us and for his encouragement to see it through, whatever came, because he believed we would not regret it.  I am so glad for doctors like him! And afterwards, the nurse added Rachel's picture to their 'wall of fame'.

Sixteen Month Birthday

Rachel would be sixteen months old today.  We miss you dear one.  I found your baby spoons in the drawers today and it reminded me of how wonderful it was to watch you enjoy food for a solid week before you died.  It makes me wonder what tastes you might be enjoying now.  We love you!

Sand Dunes and Footprints

We came back last night from visiting some very dear and wonderful friends in Saskatchewan for the weekend. (about five hours away) We had such a great time - it was so good for all of us! They have a boy and a girl just a bit older than our own and our kids were pretty happy about this! (I don't think the boys fought once) We had ourselves a little adventure and got lost looking for "The Great Sand Dunes" yesterday.  We stopped at a random old church turned machine shed - just one of many old buildings in the area. We even had two short ferry rides! Saskatchewan is really quite beautiful if you get off the number one highway! So good for a sad heart. I feel so drawn to old graveyards now...and I couldn't help wishing later as we drove home to Calgary that we had the time and energy to stop and walk through them. There are so many stories in those places...  

When we got home, I caught up a bit on other's news from the weekend. Some of you are facing some really tough stuff today....and I hurt for you.  Praying that you will find Him to be your Rock - your refuge and strength, when all else is uncertain.   

This morning we received a package in the mail - a nechlace with Rachel's footprints from Silver Soul! We made the prints the day after Rachel died.  Thank-you to Alexander's Quest for your generous gift that we used to purchase this very special nechlace!

Yesterday's Visits

Our visit to the Flames House and talk with Rachel's cardiologist went much better than anticipated.  Praise God! It felt so strange to walk through the building and not have Rachel there, and know she wasn't being cared for by a nurse somewhere around the corner. I wasn't really sure how I felt about being there. Mostly anxious I think.  And focused on what needed to happen yet that day. But the tears came these three times....

Once - when we watched a video on one of the nurses' phones.  It was a long one and it allowed us to see so many different movements, facial expressions.  Rachel was lying on one of the nurses' laps and some of the other staff - and one of the chefs, were talking and getting her to respond. It was SO good for our hearts to see her being loved by them.  And SO GOOD to be with these people who loved her and wanted to talk about her and who missed her too. 

Second time - Seeing the little bathtub where we bathed her so many times...

Third time - Receiving a GORGEOUS scrapbook from the staff, with pictures of Rachel (with some we had never seen) along with handwritten notes on each of the pages.  They said they could never have fit all they wanted to write in a card so they had to do this....We later laughed at one of the comments about her soother.  Rachel always had this thing with turning it around with her hands - she liked it best if it was upside down or sideways. 

Our talk with the Cardiologist was good.  I'm glad for the time to say Thank-you and Good-bye. She really did give Rachel phenomenal care!! We told her the details of Rachel's last day. She thinks that Rachel was likely unconscious from the time she threw up her bottle but from our description, likely passed away shortly afterwards.  Medically it is so hard to know when the point of death really occurs.  But that last breath - a ragged deep one, was likely involuntary at that point. (something to do with the nervous system) I think this was something I initially felt I needed to know because I wanted to know if she heard me whisper something to her at the end.  But I don't feel the same need anymore.  Rachel knew we loved her and whether she heard me at the end or not does not feel as important.  Thankfully, I think we have both come a long way in putting aside some our regrets and questions of that day, of that event.  We talked about a few other things I don't have the energy to write about now.  But overall, it was good meeting. 

A little later that day, Dave and I went for Vietnamese food - a real date - just the two of us! The last time we were in that restaurant, we had Rachel with us. We talked a bit about how we were glad for Rachel that she no longer had to suffer those spells again.  It is hard to explain how distressing, how painful it was to watch her go through those and know that another was coming and not know when.  We miss her so much at the same time. We are so looking forward to the day when we can be together with you again, dear little one...

Bulitin Boards in Doctor's offices...

This is a picture I am hoping to include in Thank-you cards to a few Medical Personnel involved in Rachel's Story.  One place I want to drop it off will be the Ultrasound Clinic where we heard the detailed description of all Rachel's problems.  Another is my OB's office.  And yet another is at our family Doctor's office.  He has not even met Rachel.  In fact, I have not even spoken with him since that fateful day when he broke the news about Rachel's brain abnormality.  But I know he will remember.  He was my doctor for several years (and before that, my parents).  He referred me to a specialist after the diagnosis. He encouraged me in our decision to continue the pregnancy, told me stories of others who did the same.  I always wanted to bring her in and it never did happen...it was a bit of a trip from home but I still wished we had tried to do it.

I'll be seeing him next week. I made an appointment for the kids because they haven't seen a doctor since they were babies.  And I am really looking forward to telling him about Rachel! 

I hope this picture can go up on a few bulitin boards.  Most likely in some of these offices, it will get lost among all the other smiling baby pictures but maybe someone will see her smiling face and instead of just feeling sad at her short life - mabye they might also wonder about the impact she made on someone's life?  I remember scanning these bulitin boards myself for any sign of babies that had died  - I guess because I wanted to feel less alone in our journey. And maybe someone else in the situation we were once in ourselves, will see her picture and wonder...Maybe.  

Maybe someone will even point her out, and say "See.  The news they heard was devasting for them too...but look at this beautiful little girl they were able to meet.  Think of what Good they might have missed out on, had they chosen the other way." Of course, it would never happen this way - medical personal have to be very careful how they talk about this sort of thing.  But....even if just for the people who knew us at the beginning and heard the awful news and knew our choice - maybe, just maybe her smiling beautiful face will remind them that the bad news we heard WAS NOT THE END.  Maybe???

Saying Good-bye to the Flames House

Tomorrow afternoon (2:30pm) we go back to the Flames House for a Good-bye Tea with the Staff.  Following that, we are going to meet one last time with Rachel's cardiologist to talk about her last day - ask some questions about that, and to wrap things up where her care was concerned.  We are going to walk through the building where we spend so much time.  The place where Rachel had her first spell and many more afterwards.  The place where we made friendships with so many beautiful people, because of Rachel.  The basinet where she slept. Everything about this place screams Rachel to us.  The kids are very disappointed that they can't stay the night but they are happy about this visit. I think this is going to be a tough thing for Dave and I to do.  But necessary.  I want to be able to say good-bye, and to hug the people who cared for us so well these past few years. 

Something we are looking forward to these days, is our Germany trip! For awhile (and maybe still now), I have both dreaded leaving our house and wanted to do this at the same time.  But now I am starting to get excited.  It's hard to explain I guess.  We are leaving at the end of September. Dave's sister and brother in law live in Berlin and they have generously offered to pay our plane tickets. We plan to spend some time with them and hope to go out of country a bit too.  It will be really great to see where they live!!! Dave is officially on Sabatical starting today (Tuesday).  It will be so good to be able to do more things as a family.  We have already been doing things that we haven't done once in our six years in this city too...and that feels strange, beautiful and painful all at once. 

Some of you have asked if I am sleeping better.  I am sleeping A LOT now. (although having tons of bizzare dreams too, usually about babies) I wish I could dream about Rachel but it's mostly just crazy stuff. Just recently I started thinking that if I didn't have to take care of two very active kids, I might just stay in bed all day.  Maybe it's the way my body is dealing with the stress of the last few years.  Maybe the desire for escape.  But anyway - we are trying to plan ahead so that we always have things to look forward to, things that we need to do.  Thanks for asking:)

Making Lists

I haven't felt much like writing lately...not really sure why. I have a lot of thoughts, feelings - but I guess I don't know how to write them down coherantly.  (and find time to do it well when our kids seem to need more of us these days too!) And maybe sharing them publicly on the blog feels a bit intimidating to me these days.  Yesterday though I thought of a way to share a bit of what our life has been like since the loss of Rachel.  I made lists - things that have been beautiful for us, things that feel strange about her being gone, and difficult things.  (mostly just things from the past few days) I found as I wrote them out, that I had a hard time choosing which category things went in, because there is so much overlap.  But it felt good to write them out.  I have always liked making lists.  So, here it is...

Beautiful Things:
1. Receiving last years’ Preschool Yearbook - and Seeing the First Page! It was dedicated to Rachel! Under her picture, some of the words read – “Rachel, we will always remember your sparkly eyes, twirly hands and wiggly feet. You taught us so much about love, joy, faith, hope, acceptance and peace. Leo Buscaglia said “Their loves leaves an indelible imprint in our memories. We find comfort in knowing that our lives have been enriched by having shared their love”. See you in heaven Rachel!! Mrs. Haggard and Mrs Marj
2. Driving home to an evening sunset and marvelling with Dave, that Rachel is with the One from whom all the Beauty comes from….Wow. Rachel, we wish we could see what you see.
3. Re-reading some emails and finding the note about a donation made to Gideon – 10 Scriptures in memory of Rachel. Getting a card from Compassion International letting me know the names of people (no amounts listed) who have donated to the Medical Response Fund. (in honor of Rachel) Also heard that someone donated to the Flames House in Rachel's name too. I'm sure I am missing others. Yay!!!!! Thank-you!!!
4. Meeting strangers who tell me they have been reading her blog and have been changed by her story….
5. Re-watching videos of Rachel and seeing the joy on our faces, and hers when we played together. Remembering the blessing of her life. (the videos remind me too of the extra care she needed, all those feeds - sometimes the visible gauntness in her face in an especially hard stretch – but the good memories seem so much greater now, her beautiful brave little face so much more beautiful…)

Strange Things:
1. Mixing raw hamburger by hand, and realizing that I wasn’t going to be interrupted to make a bottle. (we often checked the temp. of the milk by hand so I wanted clean hands)
2. How easy it is to get out of the house. I only have to strap two kids in the van and they get in and out themselves.
3. Going to the Preschool meeting, remembering all the times I had been in that building with Rachel before….and knowing she wasn’t at home this time.
4. Realizing that from birth to death - Rachel only gained 4 lbs!!! It feels so strange to see children Rachel's age and it hits home yet again, how little she was - fragile in a way yet so strong too.  It makes us wonder at how others perceived her because of this and yet she was so very beautiful to us!

Difficult Things:
1. Dave finding one of Rachel’s lost orange soothers underneath the computer desk. It was still sticky from tylonol.  
2. Receiving notice in the mail that our monthly tax benefit for Rachel etc…is being stopped, as per revisement of our present number of children.
3. Talking to parents at school about our children. I haven’t been asked directly yet about how many children we have, but I almost wish someone would ask, so that I could share about Rachel.  I want to talk about her just as much as she wants to talk about her child.  Also difficult: not knowing when to share about Rachel or not. (usually when I do, I get some pretty shocked expressions - and then they walk away, conversation over)
4. Finding that our ability to cope, changes by the hour.  One hour I am happily getting things done and then for hours later, I have no interest in anything whatsoever….
5. Hearing Abigail cry in the bathtub because she wants her little sister.  Watching her play with other little girls Rachel's age and having these brief glimpses of how things would have been if Rachel was healthy. 

ok, and here's one more category: What Gives Me Strength: 1. Scripture
This morning I read these verses: 
"All men [women, children] are like grass, and all their glory is like the flowers of the field.  The grass withers and the flowers fall....Surely the people are grass. The grass withers and the flowers fall, but the word of our God stands forever." Isa.40

Sometimes it feels like the time when God will make all things new, when He will wipe all the tears from our eyes, is FAR TOO FAR AWAY.  But these verses make it seem like our lives are really short - and in comparison with the unchanging, faithful, eternal GOD, they are!  We are like the grass, and yet at the same time - our lives are precious to our Maker -just think of the way he fashions our bodies in that secret place.  Reading these verses reminded me of a note I received awhile ago from a fellow mother with a child in heaven.  She shared some thoughts that described so well how I have often felt about graveyards.  I really liked the way she said it.  

She had walked a graveyard shortly after her little girl died and in remembering it, she wrote this. "[the graveyard was]so pretty and peaceful and I saw all the headstones of ones who had lost children and I was comforted by the fact that they (the mothers) survived losing their babies and little ones. Macbre, I guess as I look back at this. But it helped me to not feel so alone, that one day we would all just be etched names on stones and a hundred years from now someone would walk and know Hope lived and how her leaving must have hurt, but her Mom lived many years later and now both would be forever together. The pain of their seperation felt, but now only a memory.

Wow.  This is a deeply comforting thought.  And then this morning, I read this verse. It is my prayer today. Is this yours too? "Teach us to number our days, that we may gain a heart of wisdom." Ps 90

"What's lost is nothing to what's found, and all the death that ever was, set next to life, would scarcely fill a cup."

— Frederick Buechner (Godric)

Good-bye Rachel

At the Cabin, August 2011
Ethan first drew this picture of him giving Rachel a hug.  Then he dictated this note to me, for Rachel too.  Abigail wanted to do the same.  I wrote a bunch more letters from them to Rachel that afternoon. (by their request)

Another note Ethan dictated to me:

"Dear Rachel, Thank-you for the love you gave us. Thank-you for the happiness you made in us.  We love you and miss you." Love, Ethan

A few of Abigail's notes to Rachel:
"I love you.  We miss you.  We loved playing with you and I loved tickling your feet.  That was my favorite thing to do." Love, Abigail

"Dear Rachel, We're eating chips and we miss you so much.  We just want to keep you forever and we want to play with you more.  We wish we could be in heaven with you.  That's all." Abigail

Watched the funeral service with Dave last night...and we remembered what a hard day and week that was.  But we were so encouraged again by the words of the songs and the meditation....

oh Rachel.  This afternoon I miss you so much.  I want to try 'napping' with you lying beside me on the bed, staring at me and reaching for my face hoping I will give you my full attention.  I want to feel you again...I want it so much...

I Miss Rachel...

So many things remind us of her.  The kids talk about her too.  Lately they have been saying "That reminds me of Rachel" and it's kind of funny when they say it.  We were at Costco and they said it when they saw some flowers, again when they saw spaghetti sauce (I think?), and other odd times. Today Ethan showed me a picture of a butterfly nechlace and suggested that I buy it because doesn't it remind me of Rachel? Sometimes they can't say why these things remind them of her (like the spagetti sauce)....but maybe they just want to talk about her too just like we do. 

Which reminds me, if you meet us somewhere - please please do ask us how we are doing.  (and give us time to answer) We might just answer 'fine' or we might want to say more, depending on the situation or how we feel at the time.  Grief is kind of a confusing experience.  We feel differently all the time. But I would say that OFTEN, our desire is to talk about Rachel.  She might not be here, but we still have so many memories that we want to talk about.  And laugh about because she did bring so much joy into our lives. Sometimes we don't feel quite ready to talk about other stuff yet.  I know that it can be hard for people to know what to ask so I think I am learning to just bring her up without waiting to be asked.  Someone told me the other day that I should just talk about her when I wanted - oh, it felt so good to hear someone say this.  It is so refreshing to be given permission to talk freely and I hope to be able to do this for others.  This is something I have learned from friends who were grieving - I was so glad when they just talked about their loved one whenever they wanted.  Initiating conversations about Rachel doesn't come naturally to me - I would rather wait for you to ask.  But I am learning. 

I was trying to think of questions you could ask me when you're not sure what to say.  Maybe if you see me staring off into space - you could ask me "Do you want to talk about Rachel? and I'll let you know.  I am a pretty open book that way.  I know it can be scary to spend time with people who are hurting.  But the truth is - it means so much more to know that you are interested and that you care (and might say the 'wrong thing') than if you avoid me.  At the same time I am learning that some people have a harder time with this and I am choosing to extend grace because God extends much GRACE to me.  Also, I am not sharing this with anyone in particular in mind so please rest easy.  I only share this with hopes that it will help you know what we need and appreciate right now.  I do hope this helps. 

Something that really suprised me after Rachel was gone - was that I actually wanted to hold other babies.  Even at the memorial services! I thought it would be painful.  And now, truthfully - it is sometimes.  It is so different than holding Rachel - and sometimes it makes me long for her more and it is sad, but sometimes it feels healing too.  So don't be too surprised if I beg to hold your baby. On our first Sunday back to church, I looked across the pews and saw a lady in our church holding her foster baby and I told Dave, "I really need to go hold her.  Can I go?" It felt so right to love this precious little girl, whose mom is unable or doesn't show any interest in caring for her now.  We had both lost someone but her loss seemed so much larger and I felt a connection with her. It might have seemed odd to some people that I did that.  But who can say how grief affects us until we are smack dab in the middle of it?  One day I want to hold a baby, the next I can't bear to see toddlers at the playground. That's how it is I guess.  

By the way, friends of ours gave us a book called "Tear Soup." What a fantastic book!!! I added it to my Book List so if you know someone who is grieving a loss, look this book up.        

I understand how our grief can be awakened by small things- sometimes very surprising things. Yesterday I did a Combat class at the gym.  And if you don't know what it is, there is alot of punching, kicking that sort of thing.  Perfect activity for a pastor's wife don't you think?  I love it - it feels like the perfect kind of exercise for me right now.  But there is this one movement that looks kind of like chopping the air with your palm up and all of a sudden....I had this memory of cradling Rachel's head - and it was almost like I could feel it - the bones in her head, her soft hair...and I had to walk out of the class for a bit.  So often I can't remember what she felt, looked like and then there are these brief moments of remembering...

Thank-you God for all these things, for the absence that reminds me of my longing for home, for the taste of heaven that you have given us so that we will not settle for less, and the invitation to go deeper with you.  I am learning that your blessings do not always appear the way I expect.  Rachel's life was one of those things and I praise you for the way you have used every aspect of this journey to increase our faith.  Because I know firsthand how you brought beauty from the ashes of our broken dreams, I know you can and will do it again.  Help me to have eyes open wide to see it in people around me, in our own story and in theirs.  You promise to make all things new and you are already doing it.  I Praise You!!! I Praise You!! I Praise You!! Thank-you!!

Longing for Home

"For God loved the world so much that he gave his one and only Son, so that everyone who believes in Him will not perish but have eternal life." John 3:16

"We are citizens of heaven, where the Lord Jesus Christ lives.  And we are eagerly waiting for him to return as our Savior.  He will take these weak mortal bodies of ours and change them into glorious bodies like His own using the same power with which he will bring everything under his control." Philp.3:20-21

"We've been given a glimpse of the real thing, our true home, our resurrection bodies! The Spirit of God whets our appetites by giving us a taste of what's ahead.  He puts a little of heaven in our hearts so that we'll never settle for less." 2 Corinthians 5:4-5 The Message

Rachel's Last Day with us (Aug.5)

.....or her First Day with Jesus (hmm...except for God one day is like a thousand years!...amazing to think of and difficult to understand - our minds are so very limited...) Re-living this day was tough.  I wrote it yesterday afternoon (thank-you Dave for giving time for me to do this!) This is what I remember about that day:

On the morning of August 5th, I woke up feeling unsettled, anxious about Rachel.  It had been a restless night.  I thought I heard her crying in that strained way before a spell, ALL NIGHT.  And so after my alarm went off at 7:30 AM, I practically raced down the stairs, expecting to see that she wasn't well or to hear bad news.  But to my surprise and relief, she was pink and seemed happy to see me! I thought she was so beautiful.
I remember standing at the door and saying good-bye to Esperanza, the respite worker.  And then the feeling of surprise as I realized how very little milk Rachel had consumed during the night.  She hadn't eaten much the whole day before either.  A friend had been over and I know I couldn't stop exclaiming at how content Rachel was and how easy it was to take care of her - that she only needed to eat every hour and a half or more.  This was extremely unusual. But I didn't think too much more about it. Rachel still looked well.
Soon after I brought her upstairs, Rachel started fussing.  She didn't want to eat, so I put her down in her bed and she fell asleep almost right away.  I remember feeling happy about this - I had lots to do that day.  I got busy with the kids and laundry and usual household stuff.  I washed ALL of Rachel's clothes and most of her blankets - and the thought struck me (and I haven't thought this in a long time): WHAT IF today was the day that Rachel would die and I wouldn't be left with any 'dirty' clothes of hers to smell and hold?  But I put that out of my mind...(this later turned out to be true - and the clothes she was wearing needed to be washed afterwards too)
Rachel slept all morning, right up until the first awful spell.   I remember how different everything seemed - the long stretch when it seemed that she wasn't breathing at all, the way she stretched out her whole body and stiffened her back when she usually stays fairly curled up....(I remembering marveling at how long she was), and I remember the sense of denial that this could really be it.  I wanted it to stop so we could go on with our day...I wanted to pretend it wasn't happening.  I was relieved and thankful that friends were taking care of our other two when it happened.
After that awful, long spell, we gently laid her sleeping body back into her bassinet.  Dave left again to do some work.  I spent a few minutes sitting beside her, watching her tiny chest lift and fall with her shallow breathing.  And then I went back to my own work.  We had gone through this so many times already, and even though things were different (now in hindsight, we can see all the signs more clearly) -  the possibility of her dying that day wasn't real in our minds.
Later, she stirred and I remember feeling a bit impatient.  Her cry sounded like the normal cry for milk and I was writing on the blog - about her first spell, I think.  Or an email to a friend.  But I quickly ended what I was doing and went to get milk.  She didn't settle easily.  Finally I just stuck the soother back in her mouth....and held her on my lap in front of the computer.  I could tell that she was trying hard to open her eyes to look at me but her eyelids seemed so very heavy.  I don't think it took long and she had fallen asleep in my arms.  Now one of my biggest regrets about that day  - is that I didn't spend that time focused on her, loving her.  I chalked up her drowsiness to the seriousness of the earlier spell and the drugs we gave her.  But if I could have known that this would be the last time I had held her alive, I would have done it so differently.
Then the other two kids were dropped off and I put them in their room to have a bit of quiet time.  Dave stopped by home.  He was thinking of leaving again.  We talked about whether we should cancel the BBQ we had planned that evening at our house.  I said that I had a bad feeling about Rachel and so we called everyone to cancel.
A bit later, I called up one of the moms we had invited and told her she could bring her eldest daughter over for the evening.  Abigail had really been looking forward to playing with her.  At the end of the conversation I could hear Rachel crying in the office - and it sounded very distressed.  My heart leaped up in my throat again and I asked Dave, who was tending to her, if Rachel was ok.  Dave fed her - and she ate a whole bottle-full.  But then almost immediately after, she went into a spell.  Dave said "Meds!" and I ran for them.
At this point, things seem so hazy.  Dave and I have tried hard to remember the order of things.  We talked about it just a few hours later that day and then quite often after that but we still can't remember.  But this is kind of a mixture of what both of us think happened that afternoon around 3:45pm...
I remember fumbling with the meds, not finding a part of the syringe, and feeling so frustrated because I wanted to be with my little girl, not running around the house.  The thought crossed my mind that the meds were useless anyway - that I should just do what my gut wanted to do - GO BE WITH HER.  But I did it anyway. When I got back to the office, I gave her the two shots nasally.  She didn't react at all - which is very unusual.  She hates having us put fluid into her nose when this is her only avenue of getting oxygen (her glottis closes in the spell).
Then all of a sudden milk was pouring out of her nose, flooding out everywhere, and she was unresponsive.  It felt so strange to see this happen and not see her react in any way - not make any movement at all.  That's when I panicked inside and I walked around the corner.  Dave was trying to wipe it away from her nose....and I could hear the shock in his voice as he told me what was happening and he asked me for a suction bulb.  I brought back the bulb but when Dave tried to use it, he said he couldn't get a seal, that it wasn't working at all.
We think at that point, she took one sudden deep breath.  I remember being surprised by it - and for a second I thought she would come back.  Her bottom lip tremored for a bit in an odd way, but then we noticed that she was completely still. We called the Palliative Care Doctor on call who happened to be Mala Arasu. (also the one who was with us when Rachel had her first spell!) We checked for a pulse, nothing.  And felt her fontanel for a pulse and there was nothing there too.  And then we knew.
We may have talked about this moment for almost two years but it still seemed unbelievably sudden.  It felt absolutely impossible that she was really gone.  And yet, we couldn't deny that our little girl wasn't there anymore.  I could have closed my eyes and still I knew without a doubt that this was true.  Our social worker from the FH told us later that no matter how much warning families have, when death actually comes - it always feels sudden.  So true...
After she died, I took her from Dave's arms.  I walked into the kids rooms where they were sitting awake in their beds.  And I told them that something had happened.  We all sat down on Abigail's toddler bed and we showed Rachel to them.  And we cried and we told them that she had gone to be with Jesus.   We took a picture of our family sitting there with Rachel.
Time stopped for us.  Dave held her again and I walked out to the living room, in shock.  And then for awhile, I stared uncomprehendingly at the sight of my friend walking up the sidewalk with her girls.  Finally, it registered.  She was bringing her daughter over to play with Abigail.  I stepped outside and told her with my shaky voice what had happened.  I'm sure she felt pretty shocked to hear it too.  And then there we were standing on the front lawn....
Across the street people were talking loudly as they worked on making a new cement path to another house.  I remember feeling irrationally angry at them.  Couldn't they stop what they were doing? Didn't they know what had just happened in our home?  That right now my husband was pacing the house, sobbing as he held our little girl?  And then Ethan was running around on the lawn, calling out to people passing by, telling them that his baby sister just went to be with Jesus...and they didn't seem to notice.  But all of this just registered in my mind as completely bizarre......I thought I must have gone crazy.  Angry and crazy.
That's when I so desperately wished for our family.  Oh, for someone to come and take over.  Tell us what to do. Take our kids. Hug us. Cry with us.  It was a terribly lost feeling.  And there was nothing I could have done to prepare myself for it.  In fact, there were things I always thought I would do after she died, that I didn't do at all.  For one, I had carried around the materials to make 3D hand and foot molds for her entire life!  (I thought we would get better molds if she wasn't moving.) But it didn't even cross my mind...and every decision felt overwhelming.
I didn't know what to ask of my friend who was standing there on my lawn, our four kids running around our feet...and I'm sure she felt lost too.  Finally we decided that she could take the kids to the back yard (thank-you!) so that I could go back inside and be with Dave and Rachel.  We started to make some phone calls...and we were so glad for the company of those who came when they heard the news.
We kept Rachel's body with us for at least four hours afterwards and we were glad for this time.  It helped us in the process of 'letting go' of her body.  I changed her once and we both studied her body one last time, before wrapping her up again.  I dressed her in the last sleeper I had purchased for her from Costco, a nine month blueish sleeper with pink bees.  And the pink, purple and white blanket that she used so often.  And in the last hour or more, we left her on our bed so that whoever wanted to say good-bye to her then could do so.
We took more family pictures on our bed.  And maybe this sounds morbid and hard to understand but we are glad we did this.  I already wrote about how our respite workers and others from the Spanish church prayed for us. Dave called the funeral home and arranged for them to come around 8pm.
And then we carried her to the waiting hearse.  Laying her body in their bassinet and watching them zip up the black bag and secure her on the stretcher....and then watching the car drive away was one of the most difficult things I have ever had to do.  Dave said that he's not sure he has ever heard me cry that hard.  Somehow I made it back into the house and sat at the piano and sobbed.  Oh, my girl.  My little girl.
I know she is with Jesus.  But right then, all I felt was the loss of her.  I know she is not really mine.  I know she was really a gift for a time.  But I had to give that beautiful gift back and God knows our pain in doing so.  The grief was deep because our love for her was deep too.
A friend said to us, that as she read the news, she imagined a collective cry of sorrow that went up to God that day as so many people found out that Rachel had left us. I thought that was such a beautiful comforting picture to me of how we were not alone in our sorrow.
And we know that God is with us in the dark times of life.  We know that He was with us on August 5th at 3:45 pm in the office.  There was a moment when we were standing with her in the office, realizing that she was gone, that I had a sense of something very Holy.  It wasn't really a feeling, so much as an awareness of God, which was also based on what I believe about God.  That is so hard for me to explain.  And maybe I just can't.  Rachel's death was not pleasant and I don't believe that God promises that just because we follow him, that our deaths will be easier - but He does promise to be WITH US.  I don't understand all of that - in fact I would really like to see with my own eyes that Rachel is truly ok - But I choose to trust that she KNEW her Good Shepherd and was loved by Him from the moment after she took her last breath.
As I mentioned earlier, I have wrestled with some remorse about not giving more attention to her the day she died.  I'm told it's pretty natural and as I thought through it later, I realized that no matter how or when a death happens, we will always wonder if there was something else we should have, could have done differently.  I have also mourned the loss of my idea of how her death would happen.  I think I had a semi 'romantic' idea of being able to rock with her in the rocking chair, to sing to her and have plenty of time to say good-bye.  Truthfully, I am glad she didn't go at the end of a long difficult spell, even if it had given me time to say good-bye - and I had prayed that God would not ask us to go through another drawn out two week period with the shadow of death hanging over all of us as it did shortly after her first birthday.  But I tell myself that no matter how it would have happened, I would find something to change.  There is SO MUCH that I thank God for as well.  And I am learning to let go of what I wanted to happen and give thanks for His provision.  One thing we are so glad about is that we were ALL home when Rachel died.  We know it could have been so different.  A few days later and Rachel might have died at the Flames House while the rest of us were camping over-night elsewhere. I am glad, so glad we were together and didn't have to rush back from somewhere and have missed this altogether.
And another thought - Does it really matter to Rachel whether we loved her perfectly on that last day or not? She is with Jesus, she is ok! It is really only us who wrestle with the what ifs.  Rachel doesn't think about them at all.  Knowing this helps a bit.  I can't help wondering what she is experiencing....and I have some thoughts about this that I might share soon.  But for now I had better post this thing before it becomes a book.....;) Thank-you for reading this far!