December in Denial

Merry Christmas everyone!  I've been asked a lot today how I'm doing and I appreciate that people care.  To be honest I feel that this Christmas I've chosen to be numb of most emotions and avoid the pain.  It's not to say that I refuse to grieve, I've still shed tears, but I didn't want to sob through the day and pushed myself to not focus on what I was missing today.  Sadie was a fantastic distraction and was very excited that Santa remembered to bring her a wheelchair for her dolls.  We had my parents out for a wonderful 5 day visit to keep us busy and distracted.  They flew out today at noon so it broke up our day and helped keep my thoughts off missing Hope.  We did make a stop at the Children's hospital on the way up to Shawn's parents house to drop off some treats for two families.  I simply couldn't let today go by without acknowledging that there are still families spending the holiday in a cramped hospital room and not doing the things they normally would.  I realize they are so blessed to just be together, but I know it's difficult and wanted to try to bring a smile, even if only for a moment.  I had so many ideas of what I wanted to do for families in the hospital this year, but December did not go according to plan!

December has not been a month of great health for our family and I've spent a lot of it on the couch.  I started with a cold that was survivable, but not enjoyable.  I then got the influenza virus, apparently a strain that was not covered by my flu shot.  I was very ill and after being given IV fluids at the hospital, they decided to put me on antivirals.  These may have helped, but I'm not really sure as I didn't react well to them.  Eventually I was taken off of them, after I began vomiting each time I took them and feeling worse when they were in my system.  I spent almost an entire day at my OB's office after vomiting all over myself while driving to my appointment!  They didn't want to send me into the hospital as there were so many germs and my immune system was garbage.  They started an IV right in their office for the first time ever and essentially put me in a storage room on a bed for hours while filling my body with fluids.  I even had to show them how to use some of the equipment, all those months in the hospital pay off some days.  They did an ultrasound of the baby to make sure she was tolerating all the sickness well.  She looks great and is growing on schedule and developing as she should.  I had the privilege of seeing her beautiful 4 chamber heart once again and could thank God for a miracle I never understood before meeting Hope.

When I finally began to feel human again, I spent a day running around to catch up on all the errands I had gotten so far behind on.  While dropping something off at a friends house I jokingly told her I thought I broke my ribs.  I had this terrible pain in my side that had started in the morning.  By 4 pm the pain was so intense I couldn't handle it any longer and had to go back to the hospital again!  They confirmed that I had indeed broken at least 1 but possibly 3 ribs from coughing so hard with all my yucky germs I'd been fighting.  I spent the next couple of days on pain meds but eventually began feeling nauseous from those and went off them.  I am now feeling a lot more comfortable and can cough or sneeze without getting tense beforehand.  They said the healing process may be slow with all the movement in my ribs from the baby growing.  They don't realize that we've been praying about it and things are healing faster than I expected and I'm almost back to my normal routine.  I still have a difficult time picking up anything heavy, that includes Sadie girl.

This morning under the tree were a few gifts from my family for the new little lady that grows in my belly.  Opening little girl clothes once again and being reminded that this girl is coming in a few short months was nice.  I'm excited to meet her and often wonder if she'll look like Hope.  I look forward to having the moments with her that I wasn't able to have with Hope.  I feel afraid when I think about planning this daughter's 1st birthday as I know it was the only one I ever had the privilege of planning for Hope.  At the same time, I look forward to telling her often about her big sister up in Heaven who was such a world changer and will forever be precious in our family.

I also had the joy of walking down memory lane.  My mom worked tirelessly this year and completed a scrapbook of the first 30 years of my life! (I turn 30 on the 28th this month)  She beautifully laid out our precious Hope and our life journey with her.  I was also reminded of my terrible haircut choice in grade 8, boyfriends that just weren't Shawn and friends I haven't seen in years.  It was such a gift to sit and go through it all with my mom and to enjoy her hard labours finally!

The holiday season was full of a lot of blessing.  Although we thought often of Christmas last year and knew that our family was one short, we were glad that Sadie didn't have to spend all day at the hospital this year and could enjoy time with her extended family.  Someone who never identified themselves dropped off very creative packages on our doorstep each morning for the 12 days of Christmas.  I often laughed or smiled going through them and it was something to look forward to each day.  We also received a video we requested be made after Hope's death and were able to watch it just before Christmas.  Watching Hope smile and hearing her whine was a precious gift we will cherish.  I have yet to sit through more than 20 seconds of it before the tears begin to stream.  If anyone would like a good cry and a reminder of how bright her smiles were, I'm happy to watch it again!  I also spent this Christmas knowing that Hope was celebrating Jesus' birth with the birthday boy.  That's much more exciting than what we were doing here on earth and I picture her in absolute joy and peace and that is comforting.  I don't wish her back here to a world of pain, I just look forward to joining her one day in paradise.

Merry Christmas!

Naked Truth

Many people told me that losing Hope would make me a better mom to Sadie.  They were wrong.  Today was horrible, down right awful.  Today I hit the wall of a build up of Sadie's whining, complaining and bad attitude.  I don't know what happened to our sweet girl, but over the last 72 hours she's been more of a thorn in my flesh than a precious blessing.  By 4:30 pm I had hit rock bottom.  Sadie and I could no longer work together and we needed Shawn.  At 4:45 I begged him to leave work early to save me from the anger and frustration I was feeling.  The moment he walked in the door I washed my hands of being a mother for the rest of the day.

Tonight I went into Sadie's room where she was sleeping, crawled into bed beside her and wept bitterly.  Losing a child doesn't make you a better mother, it only makes you feel worse when you aren't a great mother.  I know the reality of how much it sucks to be "free" of parenting a child.  When I have a day where I feel like I wish I'd never had children, I crash at the end of the day feeling the horrible and real pain of what that would cost me.  I stroked Sadie's hair and sobbed into her pillow as I knew that I had not been capable of showing her the fruits of the spirit, of parenting her in love and kindness and feeling like a failure for giving up on her.  How can you be so angry with someone you love more than yourself?

Tomorrow hasn't yet arrived and I know that it will be a day full of more pain than today and it frightens me too much to go to sleep.  My 6th 21st and a half year since I watched my baby girl take her final breath, all her muscles relax and life leave her body.  A baby that was so difficult to parent so many times and yet I would take our worst day back over and over again just to spend it with her.  I long to spend tomorrow alone, curled up in bed with a large supply of kleenex.  Instead I have to live a normal day and function for Sadie.  Perhaps I should say that Sadie has to deal with me for the day.  I realize that much of my impatience and frustration comes not only from her attitude, but also from my emotional state.

Becoming a mother has been one of the most painful, difficult and rewarding decisions I've ever made.  I often resent the deep wounds that Hope's death left.  I cherish the lessons I learned through her life, the way it forced me to fully rely on God and the understanding that we all need community that came out of it.  But I struggle with how the deep wounds leave so much pain, pain that makes me tired as a mother with Sadie.  Pain that makes it too difficult to deal with 3 year old attitude on bad days.  Pain that hides in the soul and bubbles up whenever it feels like it, often when I don't have time for it.  Usually on a weekday when I don't have the luxury of turning to Shawn for help and support.

In these last few days of deep frustration and intense feelings of failure, I have reached out to God.  I find a show Sadie loves and get her cozy next to me on the couch so I can sit and journal in prayer.  My frustration only grows as she decides to draw in my journal, touch my face and ask me 4,000 questions instead of watching her show and letting me get refreshed.  At night I'm exhausted and just want to sleep and when I wake up each morning I have never had enough sleep.  The pregnancy takes all the extra energy I have.  When you can identify that you're empty and you are tying to refuel, it's only that much more frustrating when your efforts are failing.  I've resorted to praying while I pee, at least I do that a lot while pregnant!

Once again I am reminded of my deep need for Jesus.  I can't parent a healthy child without him.  I don't have the strength in myself, I don't have the patience required either.  Just as I have no idea how single mothers survive, I can not understand how one parents without the grace and love that Jesus gives.  Each time I have a day of darkness like today, the only thing that carries me through is knowing that I am not perfect, but Jesus has saved me by grace.  Salvation is thankfully not earned, as I would fall short.  It is grace that will get me out of bed tomorrow and give me the strength to try again, even on a day that I just want to be alone.  We get so frustrated with our children, I can only imagine what it's like to be God and watch his children fall over and over again.  Tonight I am reaching out, taking his hand and getting back on my feet.  Thankfully this earth is not my home and is fleeting in comparison to eternity.  One day in glory I will go to sleep without tears.

Tomorrow is a new day, a difficult day to face, but a day I hope to show Sadie how much I love and cherish her.  A day that I hope to hold her close and remind her of how blessed I am to be her mother.  A day that I will feel the pain of not holding Hope, yet be comforted to know that Jesus is doing it for me and one day I will join them.  Tomorrow is a day I could really use some prayer.

2 Years of Change

It was 2 years ago today that Hope was diagnosed with HLHS and our lives were changed forever.  It's hard to believe it's been that long, it truly feels much longer.  I sit at almost the same place in a  new pregnancy, just 3 weeks ahead of where I was with Hope, and carrying another girl.

Sadie has been very excited about Christmas this year and putting on a lot of pressure to decorate.  After Shawn carried the boxes up from the basement I began going through everything completely oblivious to the emotions that lay inside those boxes.  Our stocking holder is down a stocking this year and it remains in the box.  Our tree carries a couple of ornaments with Hope's name and one that represents her first and only Christmas here on earth.  I was thinking yesterday how beautiful it is to know that she celebrated Jesus' birth once on earth and will now forever celebrate him face to face.  I forgot how much the holidays are full of decorations with her name and how easily my mind goes to her.

In the last 24 hours I attended 3 Christmas craft sales.  I absolutely love wandering through Christmas craft sales each year.  This year I find myself leaving not with Christmas themed goods, but with anything that has a heart.  I am so drawn to the things that remind me of her and love to put hearts on Sadie and I know I'll love putting them on the new baby as well.

Some things are still too difficult for me.  The thought of putting a family photo in a Christmas card is too much this year.  I don't want a photo without her in it, but knowing that she's been gone since May makes it obvious that our photo would be very outdated.  Next year I hope to be more comfortable with our family of 4, always knowing it was meant to be a family of 5.  Sadie's school asked for a family photo to put up on our their bulletin board.  Knowing Sadie would never bother going to look at it, I decided not to send one in.  I couldn't decide whether to send one with Hope or without.  I look forward to the passing of time in that way, one day it won't make sense to send a photo with her in it any longer.

Sadie has taken to informing random strangers that her sister died.  It creates some interesting conversations, but her desire to talk about her sister is so innocent and beautiful that I embrace the awkwardness and just try to make the shocked stranger more comfortable.

I think a lot about the families that will spend this Christmas in the hospital and my heart breaks for them.  I think the hardest thing last year, was knowing that everybody is excited and happy.  It's weird to walk around in a world pumped with joy for a holiday when you feel completely exhausted, emotionally empty and not interested in anything festive.  It does force you to look beyond the hype of the holiday and back to the reason we were meant to celebrate anyway!  I'm trying to balance how to raise Sadie to be excited about the birth of our Saviour and not just the new toothpaste in her stocking.

November 21st will mark 6 months without Hope.  It's hard to believe that half of a year has already passed by.  I dread facing another 21st and yet look forward to another one being gone.  We have our Bible study that night and with timing I may have to force myself to cook dinner on the 21st once again.  I know that we need to continue living, but that one day a month I like to allow myself to let the pain of her loss set in and truly grieve.  Perhaps we better order a pizza!

Monday morning I'll have the echo done on the new baby's heart.  I feel confident that everything is okay, but will be more relaxed when it's completed.  Thank you for continuing to pray for our family and this little one that continues to grow.

A Precious Face

Last night was one of the worst sleeps I've had in a long time.  It was one of those nights where you long for morning to come so you can stop trying to sleep.  Finally my alarm went off and I got up to get ready.  Shawn and I had very little time to get Sadie ready and get in the car.  I'm not sure why I didn't just get up and start earlier, I guess I had hoped I would be sleeping.

We sat in almost the same place we sat as we waited for the ultrasound with Hope.  It's across from the kids play area and both times we had Sadie in tow.  As we went into the room I was nervous.  I was hoping the technician would begin with the heart, but she waited until later in the ultrasound to even take a look.  As soon as the probe was over the baby's heart, I could clearly see each of the four chambers.  I'm not sure I would have previously recognized this detail.  It struck me as I finally saw a healthy heart and realized how broken Hope's heart truly was.

I went into the ultrasound fairly confident that this baby was a boy.  I think in knowing that a baby girl would be more difficult for me emotionally, I believed that God would have mercy and give me a boy. You would think that I would have learned through our journey with Hope that life is difficult and we don't always get an easy ride.  When we found out that this baby was indeed a baby girl, I was surprised and emotionally numb for a moment.  It slowly set in and I knew that I was okay with it, but also needed to be very careful.  I don't want this baby girl to have to live in Hope's shadow and to fulfil the dreams that I missed out on with Hope.  This is a new creation, and we want her to know that we want her to be an individual.  We are thrilled that Sadie gets to have the sister she's been asking for and I'm good at raising girls, it's all I know!

The doctor came in shortly after looking everything over.  She agreed that this little girls heart looks to be healthy.  She would still like us to have an echo done.  An appointment was booked for 2 weeks from now.  An echo will allow them to see clearer detail of the heart and with our history, this could be important.  I'll likely relax a lot more after this echo is finished and we know this girl has a healthy heart all over.

This pregnancy has not been easy.  Emotionally I've done fairly well, I have my moments of rubbing my belly and remembering those safe moments we had of Hope in my belly.  Most of the time I look forward to the experiences I missed out on with Hope.  I want to hold my baby right after she's born, to nurse her, to bring her home and to not have to insert feeding tubes or give injections.  My hips and my pelvis have been a whole new level of horrible.  When I look back at my pregnancy with Hope I can now see how much better my body handled it.  I have such severe pressure in my pelvis that I can barely walk at times and often struggle to fall asleep because of the pain.  I continue in treatments and am doing what I can, but I know these next 20 weeks are going to be long and difficult.  I would rather suffer pain in pregnancy, than have my baby suffer pain in life.

Thank you for praying for us, for the health of this baby and for this transition in our lives.  We praise God for a healthy baby girl and the opportunity to raise another child.  Please pray for us as we prepare to bring home another girl.  I cannot forget preparing for Hope's birth and many of the clothes and blankets I put into the drawers will be the same.  Please continue to pray for each of us as we get ready to enter a new transition.  Most of all, praise the Lord with us for this precious blessing.

Another November

It's odd to find ourselves in a similar position in November, just 2 years later.  In November 2011 we got up early in the morning to take Sadie and have our 19 week ultrasound.  Now, here we are in November 2013, about to do the same thing.  Tomorrow morning at 7:45am we will pack up our little family and head to the exact same ultrasound clinic to FINALLY find out what's growing inside my tummy.  I never imagined myself hoping so deeply for 4 healthy chambers in the heart and caring so little about whether the baby is a girl or a boy.  Tomorrow will also mark 20 weeks into this pregnancy, half way to meeting this new miracle.

As I've been reflecting about this ultrasound and trying not to be concerned, I've come to the conclusion that nothing inside my heart will change either way.  Although Hope's life was extremely difficult and we did not receive the desired outcome, God proved faithful.  When I look back at her life I am able to clearly see how God used her life and her struggle to draw not only us, but thousands of others to their knees.  It's through that realization that I'm able to continue breathing and know that whether this baby has a healthy heart or not, we will love it deeply and continue to trust in a God that deeply loves his children.

Tomorrow will also kick off a new time of processing for me.  Once we know the sex of the baby, I've committed to going through Hope's room to begin transitioning it into a room for the new baby.  I'll be removing her clothes and filling the drawers with newborn clothes in pink or blue.  It's something I've avoided doing but am finally feeling ready to conquer.  I spent some time in there this weekend and although my time in her room is often full of tears, I do not leave her room defeated.

This past week Sadie told me that Jesus died but he is alive again.  When I told her she was right, she continued with, "that's what happened to Hope too!"  I was confused at first as I worried she was suggesting that Hope was going to move back into our home.  When I questioned her, she explained that Hope and Jesus were alive together in heaven.  I was so blown away by her ability to understand "new life" in Christ.

Please pray for our family tonight as we try to get some rest and tomorrow morning as we face a familiar setting that is not full of happy memories.  Please pray that we would be ready for whatever is ahead and that they'd be able to get clear pictures of the baby.  Thank you for continuing to care and for walking with us through this journey of grief, and the gift of new life.

Hope Holly Lincoln's 2nd Heart Beats Run

I wanted to thank everyone that donated to Heart Beats this year.  Team Hope Holly Lincoln raised over $20,000 and that doesn't include some company matching that still needs to be added!  We won first place for fundraising and were very proud to support such an incredible organization.  Our team had over 100 members this year and there were people there that I knew and never even saw.  It was a packed event this year and that was extremely moving.  Here is our team before the race began:

In the front row you'll see Lincoln's family on the left with his photo, our family with Hope's photo and Holly's family on the right.  Three tiny babies that brought all these people out to support a great cause!

While we were racing in Calgary, others raced in honour of Hope Holly Lincoln in other parts of the world.  My cousin ran in Pennsylvania, my brother ran in Spain, my friend got a group together in Manitoba, my parents and Nursey walked in Michigan and my sister ran with a group in British Columbia.  How incredible to know that people all over were participating as they could and joining us as we raised awareness for Congenital Heart Disease and supported Heart Beats.

Sharla (Lincoln's mom) and I cried anytime we got near each other.  I was very emotional and little things were tough.  During the race a little girl in front of me lost her balloon.  As it floated up to the sky I heard her mom say, "don't worry, now Tracey can enjoy it."  I pictured myself saying the same thing to Sadie about Hope and was moved to know that these total strangers felt the pain we did.

After the race I was extremely sore, mostly in my left hip.  It was my lucky day, right at the finish line was a chiropractor with his table.  I hopped up and had my hip corrected before I was even off the course.  How perfect is that?  What an amazing answer to prayer for me, it's the only reason I've been able to walk basically pain free today.  

Tomorrow will be our fifth 21st without Hope.  It's difficult to believe it's only been 5 months since she went to be with Jesus.  I feel like she's been gone for so much longer.  I've planned in advance to keep myself busy and to have playmates for Sadie so I won't have time to sit and feel sorry for myself.  I'm hoping next year that the 21's aren't so painful.  

I am now 18 weeks pregnant and knowing that in the next 2 weeks we'll find out if this baby is a girl or a boy is difficult.  I'm looking forward to finding out, but I'm terrified of the reality that will follow.  Hope's drawers remain full of her clothes, her closet is still full of her things and her room is almost exactly as it was when she died.  That room will become the new baby's and I will need to go through all of her things and make room for this child's things.  Having a boy means packing these things away forever.  Having a girl means packing them away for a year, but having the opportunity to use them again.  I believe that a boy would be easier for us over all emotionally, but I naturally want a girl in my longing to have Hope back.  Please pray for us as we find out and process these things.

If it comes to mind, pray for us and our families as we go through another day tomorrow that will make us long for Hope.  I was washing dishes tonight and thinking about the fact that although I miss her so deeply, she doesn't feel the same way.  Heaven is too wonderful to spend time missing your mom, she's content to wait for me there.  I try to remind myself that Jesus has and will always love her more than I am even capable of.  She's in good hands until I get to hold her on my own again.  

A Little Teary...Maybe a Lot!

I wanted to ask for some prayer.  Tomorrow is the Heart Beats run and I'm really looking forward to it. It has also brought a great deal of emotion with it and the tears have been privately free flowing this week.  I've been going through Hope's drawers and her closet again, looking at her pictures and touching her things regularly.  I try to do this while Sadie is busy or away at school, but I sure do miss my little girl this week.

I'm pretty sure that spending a day with heart families and remembering our heart warrior has brought this on.  I'm looking forward to being with everyone, but I'm also terrified of the emotions that will come with it.  My left hip is extremely out this week and I woke up barely able to walk.  I have an appointment this afternoon to help correct this, but I know tomorrow will be a challenge.  Each painful step will be for Hope, Lincoln and all their friends fighting that difficult battle with CHD each day.  Please pray for our team and the other runners, the race begins at 9am Calgary time.

Thank you to everyone who has donated towards the run or to Heart Beats in general.  I set a lofty goal of $5,000 this year.  Just 21 hours away from the race I'm just over $4,000 and at 81% of my goal.  I'm not sure if I'll reach 100% by morning, but I feel so blessed to know that so many care and want to help families like ours in the midst of such a difficult journey.  Heart Beats is truly an incredible organization that offers such practical help to families.  They were a real encouragement to us and it is nothing short of an honour to help them continue in their amazing work.

To join our support team, go to www.runningroom.ca and click on GIVING and then PLEDGE AN ATHLETE.  Then you can type in the name of the person you want to sponsor.  Shawn and I are both participating along with a lot of others some of you likely know.  It all goes to the same place!  Thank you.

Happy Thanksgiving

It's hard to sit down and sum up almost a month of my life but I'll try to include the highlights.  Shawn and I had the privilege of spending 2 weeks in Europe on vacation with no kids and no responsibility.  It was a much needed mental break and a true blessing to spend that time reconnecting and falling more in love once again.  We had an amazing trip, enjoyed so many of the places we saw and were able to feel refreshed by the end.  Sadie did well, although she sure missed us. She is already back to her old self and seems fine.

On October 4th while we were away I opened my calendar and saw that at an early time I had written, "Hope is 1.5 years old today!!"  It was hard to see that and know that it was a milestone we never reached and I must have felt confident the day I wrote it.  At least once a day someone on the cruise ship would ask, "Is this your first?"  To which I would respond, "no, our third."  At times it was dropped and life would carry on, other times they would follow with the question, "How old are your other two?"  The only way I can explain the response is that a grieving mother is a bit of a schizophrenic.  One day I'll respond with the truth of our situation, others I won't.  I can't explain why one day is a certain way and another is not.  Sometimes I would say, "we have a 3 year old at home and we had 1 year old that we lost earlier this year."  Other times I would simply say, "We have a 1 and 3 year old."  One day when an older lady followed that response with, "How is your 1 year old sleeping?"  Shawn responded with, "She sleeps incredibly well...pretty much all day."  It was simply a moment that we didn't want to grieve and feel sad.  We wanted to enjoy our dinner and talking about our daughter dying in that moment was not an option.  I honestly feel sorry for the people that ask about my children on my good days, they get more information than they were looking for!

People always say that when it rains it pours.  That has been true of our new house.  We moved in on May 1st of this year and lost Hope just 3 weeks later.  During our first few days here we discovered our brand new washing machine did not work as a part was not connected inside.  Shortly after Hope's death our brand new fridge randomly decide to shut down and we lost all of our food and the electrical board inside needed to be replaced.  Before our trip our bar fridge in the basement stopped working, it was brand new as well.  They had a repair man come out, discovered it was completely shot and refunded our money.  Since the weather has changed we discovered our furnace was not working and our gas fireplace wouldn't start.  Today the repairman came out and got the fireplace started, which is helping warm the house a great deal.  Unfortunately the furnace is truly broken and a part needs to be replaced before it will start again.  How is it possible that so many brand new things are garbage??  If it can go wrong, it has gone wrong for us with our appliances!  I guess it keeps life interesting, it's never boring around here.

Last thanksgiving we celebrated at the Ronald McDonald House.  Hope was in a stable place and we were able to take her out on passes during the day and even had her with us outside of the hospital for Thanksgiving.  It was one of my favourite times with her in Edmonton.  This year we have the pleasure of relaxing with family and not running back and forth to the hospital.  We wish Hope was coming with us and would be able to enjoy some delicious foods in a high chair next to us.  I'm sure the feast in heaven is better than we could create on earth.  I usually find the holidays very difficult, but for some reason I'm not as bothered by it with Thanksgiving.  I think a holiday that is set to remind us of all we have to be thankful for, reminds me that although our little girl is missing, we are still so incredibly blessed and have so much to find joy in.

While Shawn and I were in Athens we were sitting in a square enjoying some delicious Greek frozen yogurt.  I looked up to see an adorable little girl behind a motorcycle.  I pointed her out to Shawn and commented on how sweet she looked hiding behind the bike.  As I watched her more closely I realized that she was actually behind the bike squatting and leaving a little pile for the poor motorcycle owner to find.  It was an incredibly impacting moment as I watched her get up and walk away and realized that Sadie, who was close in age to this girl, would never need to do that.  We could easily take her into a coffee shop and even purchase a drink if that was required to use their bathroom.  Here I sat eating my delicious overpriced treat that I didn't need and she was lacking something I feel is a necessity, toilet paper.  I was reminded of the children around our world but also in our own cities that are in need of so much.  I decided that going forward I wanted to research the places we travelled to on vacation and try to find something we could do to positively impact the area we visited.  Even if I'm only helpful for a few hours, I desire to have less selfish vacations in the future.  I have often wondered if Shawn and I will foster or adopt a child in the future, seeing this beautiful little girl awakened that desire once again. Only the Lord knows what's ahead in that regard.

I look at pictures of Hope daily and continue to miss her deeply.  There are times that when I talk about her I feel strong, but my eyes shed tears uncontrollably.  You don't always get to decide how you truly feel, your heart will show the emotions you try to contain.  As I follow other families with heart children in their journeys, I'm reminded that although some are doing well, so many continue to struggle.  If Hope had gotten the heart we so desired for her, she may have still been stuck in a hospital bed.  She may have still had to endure endless procedures and painful tests.  I continue to believe that God gave Hope the choice, and that she chose to follow him home on May 21st.  I don't blame her for making that decision, I'm only proud of her for making it 13 months before she decided she was finished.

Heart Beats 2013!

It's hard to believe that almost a year ago we were doing the Heart Beats run around the Stollery.  Shawn and I weren't able to be with our team in Calgary, but decided to run anyway.  This year we have the privilege of running along with our friends and family, but lost the privilege of snuggling with Hope when we finish.  We depended on and deeply valued Heart Beats through our journey with Hope.  I have set a lofty fundraising goal of $5,000 this year and am hoping to make it!  The run takes place on October 19th.

Here is the link to sponsor my run online:
https://www.runningroom.com/dashboard/donations/index.php?raceId=9364&eventId=28702&memberId=VjUDMFMzVjcDbAY7AD8%3D&lan=1&item=1

If that doesn't work, simply go to runningroom.ca and select PLEDGE AN ATHLETE and then type in Amy Koslowski.

Thank you in advance for your help.  I look forward to having the free time to get more involved in the incredible and very practical ways that Heart Beats helps families in the midst of such a difficult journey.

As for our life, we passed another 21st and have now survived 4 months without Hope here.  It honestly feels longer and we continue to miss her daily.

Sadie is currently sick, but we're hoping the antibiotics and steroid she started will get her back to her old self before we head out on our trip in 2 days.  I'm not looking forward to being without her for so long, but I must admit the break from being a mother, a house cleaner and cook are very appealing.  I'm not sure that my brain will know what to do with so much time to think about myself!

Thank you for continuing to encourage us and pray for our family.  We are blessed.

A Rainbow Baby

A rainbow baby is a baby born after another child is lost.  I found this definition online:
In the real world, a beautiful and bright rainbow follows a storm and gives hope of things getting better. The rainbow is more appreciated having just experienced the storm in comparison.

The storm (loss) has already happened and nothing can change that experience. Storm-clouds might still be overhead as the family continue to cope with the loss, but something colourful and bright has emerged from the darkness and misery.

In July we discovered that our rainbow baby is growing in my belly.  The baby is due on March 25th and big sister Sadie is BEYOND excited to have a new baby around.  She has requested that if this baby is born with a tube, we cut it off.  I think she's trying to communicate her desire for this to be a healthy child and I couldn't agree more.

At the start of my pregnancy I was thinking about the comments I would receive from others and knew that, "as long as it's healthy!" would be among them often.  I thought through this and came to a realization that although we would all love a healthy baby, I care more that my child will grow up and love Jesus.  If I have a healthy baby that rejects God and chooses to live their own life, I miss out on eternity with them.  If I have a sick baby that loves Jesus, I get to enjoy that child forever.  Through our journey with Hope I have come to value a heart that loves Jesus far above a child that is healthy.  It's a simple thought, just not one that ever crossed my mind while carrying Sadie in my pregnancy.  I pray that this baby would be healthy, but that above all, it would grow up to choose Christ.

Sadie continues to talk about Hope and shares her desire to be with her again.  I find it difficult to watch her long for her sister and yet, I'm comforted that she remembers her.  She sat for over an hour watching movies of Hope on my phone and telling me all about them.  I do the same thing some days.  I am so thankful for all the pictures and videos we have of her.

Sadie has started pre-school and is loving it.  She is enjoying the fall and the routine that comes along with it.  I love seeing her learn new things and develop in her life.  She continues to make us laugh and give us reasons to smile.  After Sunday School this week as we put her in the car she said, "God has a plan for me!"  Shawn responded humorously with, "Really?  Since when?"  That stumped Sadie, but she didn't care.  She knew that God has plan for her life and that's all she cared about!

Some of you may remember after Hope's death that our friends put together a book called 'Hope's Reach'.  The book is full of letters from people describing how Hope impacted their lives.  It's a massive colour book full of stories and photos of our little girl.  It took me 3 weeks to read through the entire book.  It's LONG, but also extremely rich and not easy to take in large amounts at once.  I was so moved by it and am thankful to have it.  We spent time editing mistakes out of the first copy and getting it all ready for printing.  The book will now be printed and we've decided to open it up to others.  If anyone would like a copy of this book for themselves, we are happy to order you a copy.  Being a colour printed book, it's not cheap to print.  The books will cost $80 each and would likely be $20 to ship outside of Calgary.  If you're someone that would enjoy being able to read these powerful stories and to have this memory of the journey you've been on with us, would you let me know before October 15th?  We can arrange payment and shipping once I know who would like a copy and how many I'll need to order.

In 10 days Shawn and I will be heading to Europe.  After Hope's death a group of friends and strangers put an account together to send Shawn and I away on vacation.  The 13 months of Hope's life were extremely stressful.  Shawn and I spent a large amount of time apart and our time together was often consumed with intense conversations about Hope.  We worked hard to maintain our marriage and to keep it healthy, but often dreamed of a second honeymoon to reconnect and move forward in our relationship.  We talked about doing this as soon as Hope was stable.  Sadly that never happened, but we were beyond shocked when this account was started and our dream became a reality.  Shawn and I will spend 2 weeks on a cruise through the Mediterranean while Sadie remains in Calgary with family and friends that promise to love her to pieces!  I wanted to publicly thank each and every person that has made this trip possible for us.  I'm dreading the time away from Sadie, but am deeply excited about the one on one time I'll have with Shawn.  Please pray that this is a wonderful time of reconnection for us and that my pregnancy doesn't leave me on the boat while Shawn explores Europe!

My pregnancies are usually horrible.  Some of you that followed Hope's journey before she was born will remember how deeply I hate being pregnant.  I am extremely uncomfortable during my pregnancies.  First is the nausea, it begins immediately and usually lasts until I deliver.  In my delivery with Sadie was I still throwing up just hours before she was born!  I am on medication to make this easier, but the medication makes me very tired.  Secondly my hormone levels are always too high and specifically my Relaxin levels.  As a result I have had SPD with each of them as well.

SPD is: Symphysis Pubis Dysfunction (SPD) is most commonly associated with pregnancy and childbirth. It is a condition that causes excessive movement of the pubic symphysis, either anterior or lateral, as well as associated pain, possibly because of a misalignment of the pelvis. SPD is a dysfunction that is associated with pelvic girdle pain and the names are often used interchangeably. It is thought to affect up to one in four pregnant women to varying degrees, with 7% of sufferers continuing to experience serious symptoms postpartum

It has already begun in this pregnancy and my hips are in constant pain and walking becomes more difficult as each week and month passes.  I receive treatments throughout my pregnancy and it helps a great deal, but is still extremely inconvenient!  My feet begin to flatten as I move forward as well and I get to a point of begging Shawn to rub my feet constantly!  Poor guy.  Enough whining...the point being that it's not a fun 9 months and I could use your prayers.  While pregnant with Hope I swore I would NEVER get pregnant again.  After she was diagnosed Shawn felt strongly that we should have a third child.  He didn't want Sadie to lose her sister and be alone.  I eventually agreed and we had decided to have one more, regardless of what had happened with Hope.  I feel even more confident this time around to say, "I'm not doing this again!!"  This baby is worth the trouble and the pain, as were Sadie and Hope.  I just long to reach March and to have this little one in my arms.

I am currently 13 weeks pregnant.  Sometime in the next 5-7 weeks I'll be receiving another ultrasound.  Although I've already had two, this will be the first time we'll get a good look at the baby's heart.  We are praying for 4 chambers and a healthy heart.  I think I'll feel more relaxed once we know everything is okay and we find out if this is going to be another little lady or a little man.  Although my heart longs for another girl, I wonder if a boy would be easier on me emotionally.  It would be an entirely new experience and that may be better for us.  I trust God to decide and that either way we'll be able to carry through.

Thank you for continuing to pray for our family, for the new baby that is growing and for our hearts as they slowly mend from losing Hope.  Never forgotten, forever missed.

Productive Days

Today was a day that I finish feeling very accomplished.  We set an alarm to make it to the early service at church, 9am is not that early.  Sadie had to be woken up to make it on time and it's walking distance from our house!  After church we went to Heritage Park for an awesome day of family fun.  The park is perfect for Sadie right now.  She got to ride on a lot of carnival rides, a steam engine train, a horse drawn carriage and a steam boat!  We went over to the farm and saw all the animals, ate ice cream, visited the candy store and explored all the historic houses.  After 5 hours of walking around and enjoying ourselves, we stopped at their annual harvest sale on the way out.  It was moments before they were closing and we got some amazing deals!  A whole watermelon for $1, a massive box of green peppers for $5, a case of mangoes for $2, cauliflower for $1 and 2 cantaloupe's for $1!  Sadly after we purchased our watermelon for $1 they dropped the price to 2 for a $1.  We would have complained but the money was going to the Children's Hospital here and we've found that place helpful in the past!

We just got home, made a pizza to throw in the oven for supper and are looking forward to relaxing on the couch after Sadie goes to bed.  I even signed Shawn up to be Santa at Sadie's pre-school in December!  What a good sport to save me from having to volunteer to be on the board committee.  It was a large time commitment that I didn't want to make and Santa was only for an hour.  I'm sure he'll be hilarious.

Today, as we waited for our carriage ride, a mom behind me asked how old Sadie was.  I asked in return how old her children were.  Her youngest was 17 months old, the age Hope would currently be.  Whenever this happens I find I stare at the child and try to picture what our Hope would be doing right now and what she'd look like as she got older.  Would she grow into her big eyes, or would they always light up her entire face?  Would she still be bald?  Would she finally be over 13 pounds?  It always stops me in my tracks and brings some sadness before I can continue on with the day.  Watching Sadie ride the ferris wheel alone because she didn't have a sibling to sit next to her was hard when so many of the kids had someone next to them.  It's the little things that continue to hit hard.

We are thankful that we are doing well and are able to go out and enjoy a day as a family.  We are thankful that our marriage is still full of love for one another and that our pain is not turning us against each other, only closer to one another.  We are thankful that Hope is resting safely in the arms of Jesus and that when Sadie asks the tough question, "why did Hope have to die?"  We can answer with the confidence that God knew what he was doing, even though we wanted him to do something different.  We continue to live life and through that we grow and we get stronger, even though the pain lives on.

Community

Tonight I finally sat down and finished reading a book that was sent to me by a friend shortly after Hope's death.  The book is called 'A Grace Disguised' by Gerald L. Sittser.  I highly recommend this book to anyone that is suffering a loss or tragedy of some kind, his thoughts and reflections are very powerful.

A specific section on community in the presence of sorrow jumped out at me tonight and I wanted to share it:
"First of all, it requires a choice on the part of those who want to provide community for suffering friends.  They must be willing to be changed by someone else's loss, though they might not have been directly affected by it.  Good comfort requires empathy, forces adjustments, and sometimes mandates huge sacrifices.  Comforters must be prepared to let the pain of another become their own and so let it transform them.  They will never be the same after that decision.  Their own world will be permanently altered by the presence of one who suffers.  It will bring an end to detachment, control, and convenience.  It will prevent them from ever thinking again that the world is a safe place full of nice people, positive experiences, and favourable circumstances."

Reading this section reminded me again of how thankful I am for the people that made that difficult decision to be our community and to be forever changed for the ordinary.  Although life is no longer a "pretty" thing, there is beauty to be seen in true community.  Thank you for making that sacrifice and for growing along side us.

Tucking Sadie in tonight she asked once again, "Do you think we could ask Jesus to give Hope back?" I said no.  "Do you think if we wave a magic wand she might come back?" I had to say no once again. "Mommy do you think that God will give me a new sister next week then?"  I answered with a more thoughtful, "well, we can ask him to do that and then see what happens!"  She continues to miss her sister and longs for the comfort that I never knew a small child could bring to an older child at such a young age.  I look forward to her getting older and building her own community.  Right now as a family we are that community for her, but I know she is still lonely in her loss as well.

Thank you for continuing to care.

A Midnight Snack

Fighting a sinus infection, writing thank you cards and not eating enough for dinner.  All culprits of my lack of ability to sleep and my constant thoughts of Hope.  Each time I attempt to fall asleep I think about her and begin feeling sad and get up before I start crying and make my sinus headache that much worse.  I was feeling much better this afternoon, but being on my back in bed appears to be working against me tonight.

Writing cards is something I've always enjoyed.  I deeply enjoy finding a handwritten note in the mail and I like to give that gift to others.  I will say that having Hope, and needing a lot of help, brought my thank you card writing to extreme levels.  Tonight as I sat trying to catch up on my list of cards to write, I found it difficult as I'd been missing Hope all day and was now thinking about her even more and the people that loved her and our family.  Having her picture on each card only made it more difficult in some ways.

Today I sat and organized our calendar for the fall.  I wrote down all the days Sadie would be at Preschool, the mornings we'd attend my women's group and all the other things we already had scheduled.  In some ways it was exciting to see what was in store for Sadie this fall.  In another way it was deeply painful to know that the freedom to plan ahead has come with a deep cost, losing Hope.  My calendar from last year is almost comical.  I planned nothing, I couldn't plan and I simply didn't often plan to do things in advance.  Sadie didn't attend any structured or scheduled weekly activities and I rarely did either.  It's a change, a positive one for Sadie, yet a difficult one for me.

Feeling so terribly ill yesterday was a good reminder of what Hope left behind.  My head was pounding, my sinuses jammed with junk and my body ached.  Although Hope couldn't communicate well, she showed that she felt like junk on many days too.  I was thinking about her tonight as I considered shooting saline up my nostrils, a daily task with Hope.  She was often stuffy from having her feeding tube and oxygen prongs in her nose at all times.  I need to remember the bad times in order to remember how much better Hope's life is now.  She finally has free nostrils and no one is trying to take her blood!

Sadie has a current fascination with breast feeding.  She 'nurses' her dolls and talks about the fact that Hope used to nurse.  I have to explain that although Hope had Mommy Milk, she took it in a unique way.  I'm fairly sure this is not computing as we have the conversation often.  She never saw Hope nurse, she never did.  I'm not sure where this is all coming from, but it allows Sadie and I to talk about her sister and I always enjoy that.  She told me today that sometimes Hope was whiney.  She's right, she was pretty grumpy some days.  I guess we forget those moments and choose to remember the smiles we caught with the camera.

Although we certainly have difficult moments of grief, we are doing well overall.  We still have the random reminders from friends and strangers alike that we are not forgotten.  I find rare moments that I'm able to almost forget that I've lost a child and live like a normal person.  They're usually brief moments as Hope has shaped a great deal of who I am today.  I can't be me without her having been in my life.  On the really difficult days I remind myself that this world is not my home, it is temporary. I am reminded that I have an eternity in Heaven to hug Hope.  Eternity, something my mind is still too finite to fathom, but I'm looking forward to it just the same.

3 Months In

August 21st marks 3 months without our sweet Hope.  Although we feel like doing nothing, Shawn is still at work and Sadie and I still ventured out to the chiropractor.  We have spent the majority of the day on the couch with the tv, computer and ipad for entertainment.  When I feel like doing something, I've been cleaning.  I used to worry so much about the house being disinfected to keep germs down.  Somehow disinfecting the floors, vacuuming up dust and washing surfaces make me feel close to Hope.  I still struggle to go into her room and often pause at her door before walking in.  I don't often have a reason to go in there, but try to take the journey a few times a week.  We leave the door open and Sadie will often play with Hope's books, climb in her crib and pull out all her stuffed animals.  I don't want her to feel like it's a museum where she's not allowed to touch.

Each time today I go on facebook and see a post or picture of Hope, I well up with tears.  Sadie will look over and ask me if I need a hug to feel happy again.  She's used to seeing me cry and doesn't appear too fazed by it.  She asked me today where people go pee after they die.  She's more worried about the details of Hope's new life.

I find my biggest battle on the anniversaries is cooking.  I try to plan ahead and get everything ready to make it easy, yet at the end of the day there's nothing in the oven and for the second day in a row, we'll be going out.  Cooking is one of those things that just puts me over the edge when I'm not doing well, yet is something I usually enjoy.

It's helped to organize all of Hope's things into a special box.  Soon I'll begin going through all her clothes as a good friend is going to make a quilt out of all her sleepers for me.  A way to keep them around with a purpose.  She has so many that bring back memories of specific days in the hospital and pictures taken of her in them.  Having treasures from her life with us has become very important for us.

In the midst of the pain and the sorrow of losing Hope, I find myself encouraged.  We have never been alone through this journey and we continue to be supported through our grief.  We have been so blessed to have the community around us that we do.  Thank you for loving on our family.

Precious Baby Girls

This evening I got the exciting message, "she's here!"  Today my sister delivered her 5th child and my 4th niece.  She looks beautiful and is a healthy baby girl.  I felt great, I was excited for my sister and thankful that she arrived safely.  Driving home from a friend's house, minutes from my own house, I had to pull over to let an ambulance pass.  I have always been irritated by those cars that move over slowly or can't seem to get out of the way fast enough.  I have always thought, "what if the person inside is someone you know?  Move over quickly!"  I now instantly think of Hope and the lights flashing and sirens blaring as they waited for people to get out of the way, rushing her to the Stollery last May.  It was in the ambulance that Hope crashed and began to go downhill so quickly.  Every time an ambulance rushes past me, the tears quickly rush down my face.  I can't help but think of her and wish that somehow that ambulance had gotten to the hospital faster and that they had been able to find a way to save her.

Tonight, celebrating this new precious life in our family, I mourn the loss of Hope's life.  It's an odd feeling to be overjoyed and deeply grieved at the same time.  How can I cry and grieve on such an exciting day?  I feel guilty for thinking of myself when my new niece has just entered the world.  Hope was 13 months old, but she still bore the qualities of a newborn.  Babies will always remind me of Hope, not lifting her head securely, never speaking and not truly eating real food.  She was always a newborn in my eyes.  

I realized this week that although being away a great deal this summer was a welcomed distraction, it was also exhausting.  I'm finally home for the rest of the summer and I feel completely wiped.  Tonight, 6 days after returning to Calgary, I am finally doing our laundry and slowly putting things away.  That may be normal for a lot of people, but I'm usually way too anal for that.  I simply can't seem to get back into the groove and I'm hoping this next week will allow me to get back on track.  I'm tired of feeling like I'm behind on a million things.  I still have a huge stack of thank you cards waiting to be written.  People that have loved on us in some way and never heard back from me!

This Wednesday will mark the 3 month anniversary since Hope's death.  I drove past a florist this week and saw a sign that said, 'August 21st- Rose Day'.  I have no idea what Rose Day is, yet I found it oddly comforting that this 21st came with something beautiful, roses.  The 21st days are the most difficult.  I read a book by another family that had lost a child and they spoke about the monthly anniversaries and how difficult they were for the first year especially.  I dread knowing that I have another 9 to go and will also have to endure; Christmas, Easter, her 2nd Birthday and even silly holidays like Halloween.

I continue to believe that God's ways are greater than my own.  I know that his plans are best and I trust in that.  It does not soften the blow or lessen the pain of being without Hope though.  Her room is still empty, there will always be constant reminders and I still refuse to wash the shirt I was wearing the night she died.  Sadie still brings her up almost daily and will often play with an invisible friend she calls Hope.  Every doll is now Hope and each stuffed animal is given her name as well.  She is not forgotten in our home.

Tonight I praise God for new life, the healthy life of a precious baby girl.  I also ask the Lord to give my baby girl the hug I'm not able to give her myself.

One Empty Hand

It seemed fitting to start writing again today, one month after my last entry.  I don't have a good reason for the absence.  At first I didn't have the desire, then life was busy and we were at the cottage with no internet.

Lots has happened in only 4 weeks.  Shawn and I have had the freedom to dream once again.  In July, we went on a road trip with some friends and spent time in Tofino, Victoria and Vancouver.  This used to be an annual tradition, but last year this trip was not an option for us.  Shawn was elated to be back in the water surfing with his brother and seeing him there was a blessing for me, he was happy.

During our stay in Tofino, my mom called to let me know that my Nannie (her mom) was not doing well.  On July 16th, my 97 year old Nannie went to be with Jesus, and meet Hope for the very first time.    I was honestly jealous of a godly woman going to be with Jesus and feel no more pain.  I look forward to that day and pray that I will have a legacy like my Nannie did.  She loved Jesus entirely and it showed in her life.  I like to picture Hope getting to know her and having her love on Hope like she did on me as a small child.  Losing my Nannie was difficult.  I had longed to come and see her, fearing she would not live for too much longer.  Nannie died less than 2 weeks before I would have finally been able to see her after 2 years of not being able to.  That was painful and I felt frustrated that God would take her now, yet I don't blame her for wanting to go.

Shawn and I debated about what to do.  I desperately wanted to be at the funeral.  I wanted to be with my mom as well.  Sadly, I was not in a strong enough place emotionally.  Shawn and I both agreed that being in a funeral home, next to a casket and in the face of death so quickly would likely be damaging to my grief journey and only make it more painful.  I missed the funeral I swore I never would.

On July 25th, Sadie and I flew to Ontario for a vacation and some time with family.  I was able to see my grandparents (my dad's parents) for the first time in 2 years.  I especially cherished this time after losing Nannie.  Then, on July 26th, we had a celebration of Hope's life.  It was a night I had pictured in my mind a million times.  I longed for the day that Hope would finally be stable enough to come to Ontario and meet the friends, family and strangers alike that had been praying for her.  So many people that we cared about and longed to introduce our little miracle to.  Flying to Ontario with only one little girl was not easy, one hand remained empty.  This entire trip has been a mixture of beauty and pain as a result.  I'm so happy to be able to come again, yet pained by the fact that it is her absence and not healing that brought us here.

On July 26th, people shared their hearts and their experience of walking alongside us in our journey with Hope.  It was encouraging and a reminder that her legacy continues and is not over.  One little girl, that never spoke a word, continues to impact this world.  Nothing could make a mother more proud.

Shawn joined us in early August and we spent time at the cottage with my family.  It was another place I had always wanted to bring Hope and it came with tears.  I find most of my tears are shed on pillow cases and shower tiles.  Sometimes I keep it together for Sadie, but often I would just rather grieve alone.  I rarely fall asleep with dry eyes.

Tomorrow our time away comes to an end and we return to Calgary.  Although it is always nice to be home, I always find it difficult to return.  There's the first time I see her room again, the first time I step in and look through her drawers and her closet.  There's the reality that one day I'll have to put it all away, but the fantasy that I can leave it like it is forever.

On Wednesday, I will be speaking to a group of women about our journey with Hope.  I know that God has taught us a lot over the last year and a half and that we should share it.  In that way I look forward to it.  At the same time, whenever I sit down and work on what I should say, I feel overwhelmed.  I would need a week with these women to truly express what I have learned about God.  I am forever changed, never to be the same.  How can you express that in only an hour?  Would you pray for me as I prepare, that God would have me share only what is on His heart?

Thank you for continuing to care and for continuing to pray for our family.  Even when we are silent.  Although my words here have been few, I've finally found it easy to pray again.  I miss Hope terribly, it feels more painful on certain days, but I continue to love the Lord and find my strength in him.

Changing Landscapes

Our journey of grief continues and the landscape changes daily.  Some days I feel as though I'm coasting down hill and the wind feels amazing as it blows past my face.  The next day I'm cruising along flat ground and I don't feel stressed, but have to work to feel joy.  Then out of nowhere the terrain will change and the steep mountains arrive and I struggle with each step I take.  A true journey.  Ever changing and never boring.

Monday was a difficult day.  I was coming down from a fun visit with two of my old friends from Ontario, Sadie's 3rd Birthday party and a whole lot of laughs.  I went back to the hospital on Monday for the birthday party of a little girl that lived down the hall from Hope for much of our stay in Calgary. The hospital is difficult, but something I desire to conquer.  I feel exhausted and overwhelmed there, but I felt like I was doing alright.  Before leaving, Sadie and I went upstairs to the Cardiology ward to return some of the supplies we still had for Hope.  The only visits we made to the clinic were during the time that we had Hope at home.  It reminded me of the glorious days that I never realized were so precious and would be so few.  They were testing the system and called a Code Blue while we were upstairs.  It sent chills down my spine as the staff ran to answer the call and I knew that a similar team had been running to Hope in Edmonton on May 21st.  It disturbs me to know that a place that was very much our home for almost a year, is now a place that lacks purpose in my everyday life.  I was overcome with emotion.

This has finally brought me to the place that I needed to be.  I have avoided grief counselling as we only have a certain amount of coverage and I feared that if I started before I was truly "broken" that I would run out and go broke trying to put myself back together again.  I made my first appointment and will hopefully be able to work through the emotions under the surface that I have not begun to touch or process.  It is also good timing as I saw our old cardiologist on Monday and he would like to meet with Shawn and I at the end of August to go through Hope's autopsy report with us.  A meeting that will be difficult in our journey with grief.

As much as the last 48 hours have been an uphill climb, it is never without breaks.  Out of nowhere will appear a place for me to rest and be reminded that we are not alone and are loved and cared for.  Even today I had a special delivery to bring a smile to my face and remind me that an army walks alongside me.  I am still in awe of the community that God has raised up around us and I am so thankful for that support.

I have not been able to shake the feeling of being rushed at all times.  I am constantly asking Sadie to hurry up or do things quickly.  I still feel an urge to get somewhere quickly.  Hope is no longer here and I'm not in a rush to the hospital, but my mind still feels that I am.  I want Sadie to experience the joy of playing, running errands and living life with a mom that can enjoy it.   Would you please pray for me as I seek to find more patience, relaxation and joy in the small moments of life?  Shawn refers to it as "fun mom" when my laid back personality breaks through the fog.  I need "fun mom" to come back on a full time basis, well maybe part time so I'm not late for everything!

Sadie still talks about her sister constantly.  She has asked if Jesus has wipes to clean up after Hope, as I wiped Sadie's bum.  She told me that we only miss her because we loved her so much.  She asked me if when we had a new baby, if the baby would be healthy.  She even asked me how big people that die fit into the little box that Hope was in.  No mother should have to explain to a 2 year old that coffins come in all sizes.  Hope was dearly loved by Sadie and is still sharp in her mind.  I am burdened by the truth that this will not always be the case and I seek to cherish the things she says about her now.

Today we received the books our friends made, 'Hope's Reach'.  I have begun to read the stories that people sent in on how Hope impacted their lives.  Shawn and I read many tonight as we laid in bed and were brought to tears.  I look forward to the many hours that will go into finishing the book as we read along.  We feel blessed to have the opportunity to read the stories and hear of her impact.  We are also humbled.  I was reminded tonight of how great our God is.  A God that could use a tiny little girl to captivate the world.  Much like the tiny baby Jesus that he used to bring life, and life to the fullest for us all.  I still hope in my heart that the people touched by Hope's story will allow Jesus into their lives.  I want to have a party in Heaven with all those that are there because of Hope's struggle and the way Jesus used her to show his love for our world.

I know that one day I'll be with Jesus and Hope in heaven.  Until then, I live in a world that needs HOPE and I will do my best to help others find it.  Sometimes climbing a mountain gives you a view of the world you've never seen before.  It has truly opened my eyes and taken away the opportunity to be naive and believe that this is a beautiful place.  True beauty is only found in Jesus and it is there that I choose to place my hope.

Another Night Shift

I think I'll start calling my sleepless nights, the night shift.  Even with the help of medication, sometimes my pain is too intense to quiet.

I'm sure the pain tonight comes from a few sources.  My day started out well, taking Sadie to her beloved music class.  She sang her heart out and had a blast as per usual.  Sadie and I had a mommy and daughter date at McDonalds too.

After lunch we drove to the Children's Hospital to visit a friend and her daughter.  On the drive there, I felt sad and talked with Sadie about how much I missed Hope.  She informed me that I would be happy when I had a new baby.  Always putting in a plug for the new sibling she wants so desperately.  In the parking lot, I walked past license plates and vehicles that I had memorized as I used to pass by them each morning.  Families that had also been at the hospital long term, ones that still had a reason to be there.  As I walked into the unit I saw the nurse practitioner that had followed Hope on the purple team.  She was an absolute gift and also the best one to draw blood from Hope's scalp.  Seeing her brought on the teary eyes.  I passed a few nurses that I had not seen and was able to hug, some that were excited to see Sadie again too.

Sadie and I visited with our friend and her daughter that continues to struggle for her life.  We sat next to her twins and fed one of them as his brother slept.  I've spent so much time in the hospital, it's almost a familiar comfortable place.  Perhaps the fact that we'd spent the most recent part of our journey in the ICU and not on the ward made the difference.  I was okay being there, in a hallway that Hope had spent the greatest portion of her life.

Sadie and I left after only 30 minutes.  I know it's good for me to get back there and I do miss so many of the staff.  I just wish I had a reason to go everyday still.  The onset of this long weekend does not help.  We lost Hope the day after a long weekend.  I remember feeling like we were missing out on a long weekend because Hope was in the hospital.  Now I wish I could spend this one there.  I was so burnt out, I spent hours of that long weekend out with Sadie while Shawn cuddled Hope.  Time he'll forever cherish and I'll continue to miss.  I wish I had known that Tuesday morning that it was our last day.  I would have fought to get on the plane with her.  I would have stopped them from intubating her until Shawn was able to get there and hold her again.  I wouldn't have put her down, not even to use the washroom.  If I had known, I wouldn't have been able to look at her face like I did that day.  I would have been crying too hard to see her beautiful eyes through my tears and her chin that stuck out so sweetly.  Maybe ignorance is truly bliss.

Yesterday I went to donate blood for the first time.  I'm not a fan of needles and I would not describe myself as strong.  I can become light headed and exhausted quite easily.  I brought a friend along for strength, but also to ensure one of us could drive home.  As they poked my finger to test my blood before beginning, I thought of Hope.  Each time they wiped her heel with alcohol she knew the poke was coming.  As I waited for it myself I realized that waiting for the poke was much worse than the pain.  She had it done so many times that she knew right away, even as a newborn.

As I sat in the chair, my blood pouring into the bag, I thought of the numerous times those bags of blood hung next to Hope.  I looked around the room at complete strangers that had given their free time to come and donate blood.  Many strangers, just like the ones around me, had given 20 minutes of their time and given us 13 months with Hope.  Without the gift that each person made, we would have lost her many times over.  I wish I could personally thank every donor whose blood was pumped into my child.  I thanked one man on the way out, but could not properly articulate how I felt.  It made me want to go into high schools and rally 17 year olds to start donating regularly.  If everyone who was able did, there'd be no shortage.

A long weekend, a trip to the hospital and donating blood.  The deadly combination that puts me back on the night shift once again.  I ran my hands over the sleepers in her drawer tonight.  Spent time looking at the brand new clothes, hanging in her closet that will never be worn by her.  Stroked her crib that she spent too little time in.  Moved pictures of her around in the house.  Looked at medical supplies we had no purpose for.  Folded laundry and once again longed for her clothes and blankets to be included.

No matter how deep the pain of losing Hope, I cannot stop remembering how deep God's love for me is.  I read in a book tonight that God is not far from the brokenhearted, he is closer than ever as we need him more than we ever have before.  I hate that Hope died, I hate that she suffered when she was alive. I hate that I will always be a mother that is missing one of her children.  Yet, I cannot hate God and truly do not feel angry.  Without the Lord, I would have missed out on so much more of Hope's life.  He gave me the strength to get to the hospital.  The strength to sit and do nothing for hours with a person that never spoke and often did not smile.  God gave me a love for a child that I knew from the beginning could be taken from me.  I don't question why God allowed Hope to be born broken, I can see the evidence all around me.  Hope's life made an impact, people's hearts were turned to God.  I don't understand why she had to die, maybe I won't until I see God face to face.  Regardless, I choose to trust the God that has carried me this far and believe that he will continue to carry me until he carries me home to be with Hope.  Without God, there is no hope for tomorrow.

Love Continued

I continue to be amazed at the thoughtfulness of others.  I was fairly certain that 5 weeks after losing Hope, most of the world would have forgotten.  I was very wrong.  Just yesterday an edible arrangement arrived from a friend, just to remind me that she was still praying and had not forgotten.  I am always touched at the reminder that Hope continues to impact lives on this earth, even after she left it.

I still have odd feelings at times.  I feel an urge to drive to the hospital to go see Hope or run up to her room to check on her in the crib.  I will look up at a picture of her in our home and suddenly realize all over again that she's gone.  It's almost like my brain forces me to forget that she's already in Heaven.  Other days Shawn and I both feel like we've forgotten Hope's death completely.  Either God has given us an immense peace, or we are still numb.  We often discuss the fact that we feel like we're doing 'too' well and should be crying more.  Don't get me wrong, I have my bad moments.  Recently I called my mom at 2:30am, her time, to cry into the phone for 2 hours when I couldn't sleep and Shawn needed to get to work in the morning.  Overall, we find we have moved back into a normal routine and can make it through most days without a severe breakdown.  It's more common at the moment for me to well up with tears when I think of Hope, cherish her memory for a moment and move on with whatever I'm doing.

I'm planning to make a trip back to the hospital sometime soon.  I haven't set a date for myself, but would like to go back and return some of the supplies we have in the next few weeks.  I think I'll be okay.  It helps that Hope was still alive when she left the Calgary hospital, I relate her death to the Edmonton hospital and would likely struggle more there.  I was thrilled to hear this week that the Stollery Hospital finally received the $55 million dollar grant they had been seeking from the government.  Their ICU is in deep need of expansion.  Had this been done years earlier, Hope would have likely gone into the OR in January and could still be alive today.  I pray this expansion saves the lives of more children when it's completed.

Our family was blessed to not be affected by the floods in Southern Alberta.  Our home is up on a hill and remained dry.  Shawn has been home from work for the last 3 work days because of evacuation orders to his downtown office.  Sadie and I have enjoyed the time with Shawn and were thankful that he was home on the one month anniversary of Hope's death.

Each day without Hope is different.  Sadie is still adjusting to the changes and is clearly thinking of Hope.  On the weekend a friend asked another child where his sister was.  Sadie quickly answered, "my sister is dead".  It's never easy to think about Sadie not having a sister to visit or snuggle with any longer.  She often longs for constant adult interaction and that can be draining, as I deal with my own desire to sit and do nothing at times.

Thank you to everyone that has continued to pray for our family as we grieve.  Thank you for all of the practical help and love that you've given.  We know that without your prayers and encouragement, we would not be doing so well.  I have found it difficult to sit and pray alone since Hope's death.  I continue to feel too emotionally overwhelmed when I try.  I have tried to focus on praying with Sadie, reading her stories and teaching her about the Bible.  It's a way that I can connect with God at a level that I'm ready for.  It's a good habit to be in with Sadie anyway, and it will likely be a new routine in our family.  One month of grief down, a lifetime to go.

How Are You?

Everyone I see asks how I'm doing.  It's not a bad question to ask, I simply don't have the energy to answer it completely.  So, I'll answer it here.  We are doing okay, not great but also not horribly.  It can change by the hour or even by the minute.  I'm clearly holding more pain than I'm aware of as my stomach is unsettled daily and I feel like everything I eat makes me feel worse.  I have a really difficult time sleeping and have finally gone to the doctor for some assistance.  I avoid going to bed until it's extremely late, then struggle to fall asleep.  I'm exhausted in the morning, but wired the next evening as my body fights sleep once again.  Last night I finally fell asleep easily, thanks to some help.  Unfortunately I don't want this to be a long term need and I'll only have help for 2 weeks.

Sadie still talks to me about her sister everyday.  Yesterday in the car she asked me if Jesus had wipes.  She said that he would need them to take care of Hope.  I told her that Jesus had everything he needed to care for Hope in Heaven.  Sadie looked up and said, "but he doesn't have us."  Those moments are difficult.  I agree with her, I simply can't jump into a conversation like that without breaking down.  I know it's okay to cry in front of her, but I don't feel its good for her to see me sobbing and irrational.

Shawn and I struggle in many ways because of the relief we feel.  We have been contacted by many families that have lost children.  There are some ways that we can connect with their story, but many that we cannot.  If we lost Sadie, we would be able to connect with their pain.  Losing a child that you deeply love, but that is extremely sick and has been in hospital for 9 months straight at the time she died, is simply too different.  Hope suffered.  She did not have any guarantees at a future and we had to choose to raise Hope and missed out on a lot of raising Sadie.  I would take Hope back in a second, if she was home and stable.  I wouldn't take Hope back the way she was though.  I can't imagine allowing her to come back to be poked multiple times a day.   To be attached to wires that prevented her from seeing the sunshine and developing properly.  I loved to snuggle Hope and selfishly I want that back, but nothing else in her life was good.  She is so much happier now and although it hurts, we feel so much relief for her.

I keep myself very busy.  I don't find it helpful to have an open day with no schedule.  Sadie is thrilled to be playing with all of her friends again and I am happy to be connecting with their moms.  I'm trying to do some normal things around the house, like cleaning a toilet.  I have been able to get to some things, but find that I burn out more quickly.  Some days I sit in Hope's room and go through all of her blankets and sleepers and touch them and remember the days she wore them.  I would love to dress her again and snap on her sleeper.  I long to change her diaper again, one that never got larger than a size 1 even after 13 months of life.  When I stand at the park with Sadie, I feel like my arms feel odd and should be holding Hope.  If I'm there with someone else I'm distracted and those thoughts are more fleeting.

Even a trip to Superstore can be difficult.  Yesterday I went to the Pharmacy to fill a prescription and instantly thought of all the times I was there to pick up Hope's medications.  Walking past the baby clothes I could see things I would have bought for Hope, heart covered sleepers and slippers.  As I packed my bags I found a note with the transplant coordinator's phone number at the hospital.  When I arrived home I found Hope's autopsy report in our mail.

Reading the autopsy was difficult.  We will be meeting with her cardiologist in the near future to discuss it.  It's like reading a foreign language and we need to fully understand it.  It was the written account of her last night that deeply grieved me.  Hope arrived in Edmonton at 7 pm and survived two cardiac arrests, one at 7:22 and another at 8:00.  I arrived at 8:30 and her time of death is listed at 8:41, the moment they stopped treating her and put her into my arms.  Although her heart was still beating from the medications and the breathing tube was still in, they already believed she was gone.  I still hate that I followed the law and did not speed the entire way.  I could have been there at 8 instead of 8:30.

Overall the report shows that Hope's heart was so much worse than they realized.  She should have been listed for a transplant months earlier and she could have benefitted from a cardiac surgery, although risky.  It's difficult to read that we did have options.  Although they were options that Hope's body did not show well and it was difficult for the doctors to see what she needed.  It was often that way with Hope, her body never properly reflected her needs and we were left guessing.

I am a broken woman that is only whole in Christ.  My family is missing a member and although we find that living each day is possible and we are okay, we remain broken.  We will only truly be whole again in Heaven with Jesus and sweet Hope.

Scars of Beauty, Not of Pain

This morning I lay in bed next to Shawn as he battled getting up for his first day back at work.  I tried to patiently remind him that he needed to get going.  I felt guilty that I would not have to endure such a difficult return and that the only thing on my schedule for the day was a visit from some friends.  A gift that I have, only because Shawn works so hard to make it possible for me to stay home with Sadie.  I watched him leave for work this morning and felt so proud of him for doing something that used to be simple, and now felt impossible.

I spoke to Shawn a couple of hours after he arrived.  I have been in awe of how amazing Interpipeline Fund has been through this entire journey.  Once again I was touched by their deep care, respect and sensitivity.  Shawn was receiving the support he needed and was doing well.  I honestly feel that many companies could learn from how they have handled our journey with Hope.  I have nothing but praise for their kindness and patience over the last year and a half.  They deserve to be honoured.

It is now 1 am and I'm still not able to sleep.  I'm sure that some of it is the time change from Maui, but I know that the nights are also when I miss Hope the most.  There are so many things in life that make me think of Hope.  I got up this morning and came downstairs for breakfast, on the counter is Hope's SIN card that I need to cancel.  Her pictures are all over our walls and her room is still full of her things.  I have not been able to stop sleeping with her stuffed bunny and I find her things in little places too.  Tonight I went into my make up bag in my purse to grab something and found Hope's teething ointment and some liquid sugar that we used to put on her soother.  At the grocery store this evening. I saw a bunch of gerbera daisies.  At her first birthday one of our favourite nurses brought Hope a single white gerbera daisy.  She handed it to me and said, "next year I'll bring her two".  I will forever think of her when I see them and it's the reason we had them on her casket.  I see hearts on others clothing, spray painted on the street, in photos and in signs.  I see her everywhere and I miss her like crazy.

At times I feel numb because I can look at her picture and not think about her being gone, just how beautiful I think she is.  Sadie talks about her often and I can answer her questions without feeling a sting in my heart.  Last night over dinner Sadie asked if God had a sister.  I told her that God did not have a sister.  She responded, "well he does now, he has my sister Hope".  The way her mind works is amazing to me and it shows how often she thinks of Hope as well.

I went to bed tonight and tried to fall asleep.  I started thinking about the music class I hope to take Sadie to tomorrow.  Then I felt overwhelmed with fear that there would be people I didn't know there and they could ask me how many children I have.  I don't want to answer those questions and worry I'm not ready to meet any new people in life.  At the same time, maybe I just need to get over the first time someone asks me in order to know that I'll be okay.

I had to put the bill from the funeral home at the bottom of my stack of papers to file.  I'm tempted to throw it out now that it's paid.  I don't want to remember that part of Hope's life and I hate that I had to plan her funeral.  I have started planning Sadie's 3rd birthday for next month and long to be planning Hope's next year.  I want to help her pick out a graduation dress and a wedding dress.  I am often reminded of the things we will never be able to do together on this earth.

My cousin Joshua wrote a song that I listened to in Maui.  While listening to the chorus, I could picture Hope worshiping in Heaven.  I could see her scar still on her chest, no longer representing pain and suffering, but now representing beauty and strength.  She didn't look sad or lonely at all.  Although I believe she deeply loves us and looks forward to seeing us, she is more than happy to wait for us in Heaven....a place where she feels no pain, is never put through a medical procedure and does not feel alone, ever.

I know that grief is a new journey we are on and that it is a long one.  I wish I never had to walk along this road.  Only 3 weeks after Hope's death, I feel like it has been years.  Holding her feels like something I haven't done for months and her smell and the sounds she made are already fading in my memory.  Even in our pain, I feel like we are doing well.  At times I feel guilty for being okay and for getting up and living life each day.  At the same time, I would want nothing less for Sadie and I know that Hope is not honoured by me staying in bed and crying.  Each day is a new challenge and each hour comes with new emotions.  I remind myself that each hour and each day that passes, takes me one day closer to Jesus returning or my old age and my own journey to Heaven.  I've never been so excited to get old.

Hope Holly Lincoln- Heart Beats Run 2013

We are already getting ready to run for Heart Beats (www.heartbeats.ca) once again this October.  For those that are interested in running on team Hope Holly Lincoln, we would love to have you.  To sign up you need to visit the following link:

https://www.events.runningroom.com/applications/?raceId=9364&eventId=28702&vrindex=3

To run or walk the 5 km you need to enter the password: zek28cuz under Amy Koslowski

To run or walk the 10 km you need to enter the password: vim35ves under Shawn Koslowski

If you would like to join us this year, please sign up as soon as possible so we'll know how many t-shirts to order for our team.  If you do not live in Calgary (the only place this run happens) and would like to make a difference, please sponsor someone here that is attending.  We are making the t-shirts ourselves so the cost of the t-shirts is purely for printing and will not raise money for Heart Beats.  

Thank you to everyone that plans to be involved, whether participating at the run or sponsoring a runner.  

Now that Lincoln and Hope have both gone to be with Jesus, this run is an annual way for us to remember them.  It is also a time to raise awareness for organ donation as Holly is only with us today because a family made the difficult decision to donate their child's heart.  If you have a heart child that is important to you that you would like to run for, but still want to be on our team, please feel free to bring a sharpie and represent them on our team t-shirts as well!

From Hope's Nana........"Agonizing Joy"

It’s been over two weeks now, since that night that will forever be etched in my memory. …..the night I held and caressed the lifeless body of our precious Hope for the very last time.  As we raced from the Calgary airport to the Stollery in Edmonton (at speeds of 160-170 kms. an hour), I begged God to let me hold her just one more time.   Each mile seemed like an eternity – I have never felt such an urgency to be physically there for my daughter, Amy, like I did that night.  To find out, moments later, that Hope had already gone and that Shawn was still some distance away was indescribable pain that tore through my body like a ravaging cancer.  It was an emotion that I’d never experienced before.   The reality seemed inconceivable….. 

We hadn’t been together as a whole family since November of 2011, which was just days before Amy’s ultrasound where we first learned of Hope’s heart defect.   Because we all live so far away from each other, we try to plan a family vacation every two years – our son-in-laws fondly call this their “MFV”….Mandatory Family Vacation!  (nevertheless, we still invite them every time!)  Anyway, this year, since Hope was still in the hospital and was awaiting a new heart, we decided that we would have a different kind of family vacation….. one that evolved around Hope and helping out Amy and Shawn.  We decided we would all meet in Calgary and just do fun kid activities around the city, while taking turns cuddling Hope and helping look after Sadie.  When I think of the way that God orchestrated it so that all of us could be there for Shawn, Amy and Sadie, within hours of Hope’s death, I am amazed and in awe of His perfect timing.   As much as I was looking forward to our family get-together, I had remarked to a couple of people that I wondered if God maybe had another reason for us to all be gathering at this time…..a reason that none of us would even want to consider or imagine.  

When I think about these days since Hope went to be with Jesus, it’s hard to put the multitude of emotions into words, but the phrase that keeps coming to my mind is…. “agonizing joy”.  Not the kind of “joy” that you associate with skipping down the road, whistling a merry tune, but the joy that comes from deep within….the underlying assurance that even in the storm “It is indeed well with my soul”…..the reminder of  a welcomed and time-tested promise…….the acknowledgement of the sure and secret plan of purposeful pain.  As I held Hope tight in my arms that night, I felt agonizing joy.  To think that she would no longer be with us and that, after 412 days of life with Hope, there would be no more on this earth.  That thought was sheer and utter agony.  But as I tenderly kissed her head that night, over and over, I whispered in her ear, “you are free Hope!....finally free!”.   She was free of her hospital bed, free of her daily pokes, free of all the wires and lines that ran from her body to beeping machines, free of her weak and failing half-heart……..such agonizing joy.  I pictured her running to meet her Great Grandpa (my dad) for the very first time and jumping and twirling and having endless energy…..something she had never known before.  I knew immediately that she was with Jesus and that she finally had her new and most perfect heart!

As the family continued to arrive over the next 12 hours, we were reunited once again, after 18 months apart.  In just a matter of hours, I had held one of my grandchildren for the very last time, held another grandchild for the very first time, and felt even another grandbaby in the belly of her mamma for the  first time……such agonizing joy.  

Constantly, over these last two weeks, I would hear the laughter and giggles of Sadie and her little cousins playing together.  One evening, after getting them all in their P.J.’s, we assembled them in chronological age on the couch for the traditional photo of all the grandchildren together.  To signify the place where Hope should be, was her little bunny, held by her cousin Sawyer, and it was painfully obvious that there was someone sadly missing in this picture. And, as much as I cherish these precious photos of all my grandchildren together, it was heartbreakingly evident to me that every single family photo from this day onward would always have someone missing….our precious Little Miss Hope…..and yet, I knew that she was with Jesus and imagined that He was holding her and and telling her how much her family loved her and missed her and that, one day, we would all be together again…..such agonizing joy.  

During Hope’s funeral, I stood beside our daughter as she and Shawn were just inches away from their baby girl’s casket and I watched her raise her hands in worship as she sang “How great is our God” and “Blessed be the name of the Lord”.  After all those years of affirming to her that God is good ALL the time, and that His plans are always for our ultimate good, and that He is worthy of ALL our praise, no matter what life brings our way, it was evident that Amy and Shawn not only believed those things but LIVED them, unashamed and unabandoned.   As a parent in that moment, I felt so proud to be Amy’s mom.  It was agonizing joy in its' purest form.

Throughout our time in Calgary, we watched as a vast community of people who had  surrounded Shawn and Amy over the past 13 months and beyond, continued to selflessly pour out their love, encouragement, prayers and endless gifts of their time to help make life bearable in the midst of the unbearable road we now found ourselves on.   Flowers arrived, endless meals were left on our doorstep, people willingly jumped in to organize music, programs, livestreaming, babysitters and words of reflection for the funeral, and numerous other tasks that just seemed insurmountable to us at the time.  We were kindly offered a mountain retreat which very comfortably housed our entire family for 5 days in Radium, BC.  God continually left countless post-it notes of His love for us, reminding us that He was always there and would never abandon us, even in our tears and aching hearts….such agonizing joy.

To sit in Hope’s room at the new house……a room she never got to see, and look around at the artwork people have made for Hope, the stuffed toys people have given to her and the pictures that people have taken of her…….such agonizing joy.

Hope knew she was loved.  She knew that her mom, dad, sister, extended family and numerous cuddlers and friends, loved her so completely and from very deep within their hearts.  She knew that she was cherished and treasured beyond measure.  Her life was a priceless gift to us.  And even though life with Hope was often filled with challenges, disappointments, heartache and uncertainty, her life depicted an immense depth of love that was demonstrated by all those who knew her and those whom she had never even met before..  From pumping breast milk every day, to organizing her cuddling schedule, Hope was deeply loved.   That is why she will be so deeply missed and so deeply mourned.  Her life however, although far too short, was worth every challenge, every tear, every day spent in the hospital, and every unfulfilled dream for the future.

It struck me tonight, that since the moment we first heard of her, Hope has had a broken heart.  Many times, throughout this past year and a half, I have remarked that I wished I could have given Hope my heart.  I would have done so in a heartbeat, just as I would for any of my children or grandchildren.  I longed for her to have a whole heart, one that was perfect and healthy in every way.  Finally, now she has one.  And, in giving her the most perfect heart she could ever have, it means that we are left here to live life without her, and now WE are the ones with the broken heart.  Thankfully, God has promised that He will be close to the brokenhearted (Psalm 34:18).  Knowing that is agonizing joy.

I keep thinking of the words of a nurse in Edmonton that were said to me months ago.  As we stood beside Hope’s bed, I asked her….”do you think Hope is going to make it?”  To that she replied, “Hope has already fulfilled her purpose on this earth even in her short little life – she has already brought glory and honour to the God that made her”.   Through Hope’s journey, people have given their lives to Christ, rekindled that relationship they once had with Him that had long grown cold, found a passion for prayer like never before, reached out and extended a hand to another in need, and learned more about unconditional love than they ever knew before.   Hope’s story is still a story of hope and it is far from being over.  Although we are devastated and our hearts are ripped apart, we know that God is using her life and even her death for bigger and better things.  We would never have chosen this road to walk, but we are reminded that Hope never asked for the difficult journey that was her life either.   To know that God can take the most heartwrenching realities and make something beautiful and purposeful out of it, is agonizing joy and, right now, that is enough for me .  HE is enough.

Hope, your Nana and Grandpa will always love you and you will hold a special place in our hearts forever.   You have opened our eyes to what is really important in this world and we are grateful to God for each of those 412 days that we were blessed to have you with us.  We look forward to the day when we will see you again, as you welcome us Home.