Toronto

One of my regrets that I have about the time I had with Ava is that I didn’t write about her in my personal journal.  I just didn’t.  I don’t know why.   Looking back I see that I just did once when I wrote out her birth story – maybe because I did that for all my other children and I didn’t want to exclude her.   But I didn’t write the kind of things that I wished I had written about… things like how it felt to hold her, or touch her soft curly hair, or how I like to gaze at her while she was sleeping.  It makes me so sad that I missed doing that.  I could do it now of course but I want to go back and read about the thoughts I had when she was here and alive…. oh I’m so mad at myself!!!       But somehow through those times even when I couldn’t write personally, God granted me the ability to blog and write publicly.  And I praise God that I have my blog, but it can’t replace my journal and only God knows why I never could or thought to write.

But now that Ava’s gone, I feel the opposite.  All I want to do is write in my personal journal and I can hardly bring myself to blog.   I think a part of that is that maybe grief is more personal and can’t all be shared.   And I know a bigger part is that I’ve now judged my blog to be unworthy… I feel it’s just a glimmer of what it once was and now it’s boring.   Blogging about a journey you are undergoing with a sick child is nothing compared to some occasional thoughts of a busy mom.    And I worry that if I keep on talking about Ava it’s eventually just going to sound like whining… and no one wants to read my whining, not even me. 🙂

So the question is… do I continue to blog and just wait out this non-writing period and hope that inspiration will strike again?   Or do I just can it.  Be done with the blog and  say that it ran its course and it’s over.

Big big question.

While I’m pondering that big question, I will tell you about our trip to Toronto last weekend.  🙂

We had always planned to take the kids back to Toronto so they could go back and visit the Ronald MacDonald House and SicksKids.  And then it just so happened that we were invited to a Remembrance Day hosted by the Sick Kids’s PACT team.  Erik had also been part of a research study last summer at SickKids.  It was a study of children who have siblings who are palliative, and the researcher had called this spring to ask if Erik would complete the study with another interview.   Erik surprisingly agreed to go and do it, so we needed to book a time for that as well.  So then it just made sense to pack it all into one weekend away.

Oh – and also fit in a trip to the CN tower.   We had been given tickets last year when Ava was sick and when we didn’t get a chance to use them before she died, but we knew it would be special to do it on a trip back.    And the kids really enjoyed going to the tower… even though we went in the rain…

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But it managed to clear up a bit when we were up and we could still quite far, and it was fun to find places we recognized and watch the Porter jets take off from Toronto island.

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The kids have been able to do so many fun things in Toronto through our Ava journey that I’m glad that many of their associations with her are of good things.   It’s really cool that living in Toronto was very much a positive experience for them.

And visiting SickKids was really good too.   Erik did a great job at his interview.  Last time he told me he answered a lot of the interviewer’s questions with “I don’t know”, so this time he tried to be more creative and say things like “I’m not sure about that” or “I’ll have to think about that”… he’s so sweet.    And it was nice to poke around SickKids and find some familiar faces to say hello too.  It just feels like home when we are there, and that’s where most of our Ava memories are as well.  Some of them are sad, but some are happy too, so I just go with it.  I know that Jason found it emotional being back, but the kids didn’t have any of those worries and just enjoyed doing some of their favourite things like going to play in Marnie’s lounge and getting timbits from Tim Horton’s.

We also really enjoyed going back to the Ronald MacDonald House.   Jason and the kids spent so much time there that I know that they really miss it – the kids kept saying this winter that they wished they were back there.   The timing last weekend must have been God’s timing because our time in Toronto over-lapped by a few hours with good friends of ours from Sudbury.   They had been in Toronto that week for appointments for their daughter who is in remission from leukemia.   We were able to visit them at the Ronald MacDonald House and have lunch with them and we enjoyed our time together so much.  We were saying how we wish we could recreate the Ronald MacDonald House in some way for regular living, as it’s so special and unique, but in the end nothing really does beat living at home.

And then there was the remembrance Day.  The PACT team who helped and supported us so very much as Ava was dying – hosted this day for families who lost a child in 2012 & 2013.  We were so happy to see some more good friends of ours who also came down from Sudbury… they lost their son in September who had hypo-plastic left heart like Ava…it was so nice to have the opportunity to be together and spend time with them.  And there was food and fun, and volunteers to play with the kids and crafts for them to make, and the parents got to talk about how things were after losing a child.   And then at the end of the afternoon we did a balloon release.  The kids had balloons with messages to Ava.  I loved Wills message… “I hope you are having a good time in heaven Ava.  from Will”

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Kinda breaks your heart, but I think I’m pretty good now at suppressing a lot of triggers that might bring me to tears.  I don’t know if that’s good or bad, but it’s rather helpful in a way so I’m fine with it.

So we left Toronto last Saturday thinking a bit more of our sweet baby Ava, and wishing she was here with us.  But on the other hand comforted by the fact that she is no longer suffering and knowing that we will see her once again someday.  OK – funny story… Jason was putting Sophia to bed a few nights after this and Soph was saying how much she missed Ava and wished that she could go to heaven to see her.   Jason reassured her by saying that our whole family would be going to heaven someday to see her, and Sophia replied, “You’re right dad, but you’ll get there much sooner because you are already 41”  HA!  Out of the mouth of babes.

And once again we realized just how much we have to be thankful for.  For the wonderful care that SickKids gave Ava, for an incredible place to stay in the Ronald MacDonald House.  For people’s generosity in supporting us while Jason wasn’t working and we were away from home.  And for all the relationships we gained and the friends we made.   The friends we’ve made have been such a support.   And I wanted to take this moment to mention Tanya – Aleeda’s mom (the little girl who received a heart).   Tanya and I have grown so close from the time together we spent in Toronto.  And we know without a doubt that God placed us together for a reason.   Tanya has been such a great friend to me, and given me so much encouragement and support that I don’t know how I would have navigated this journey without her.   Actually she started her own blog which isn’t so much about her journey as much as it is her thoughts on life… but she posted a wonderful tribute to the nurses of 4D here… it made me all teary.

OK  – I need to stop rambling so I will finish off with a verse.   I have to say once again that our faith in God has been the anchor for our souls through this time of grieving our precious Ava… but knowing that God holds everything is His hands gives us peace and hope.

Oh, the depth of the riches and wisdom and knowledge of God! How unsearchable are his judgments and how inscrutable his ways!  Romans 11:33

Amen!

6 Month Anniversary

Today is the  6 month anniversary  of our sweet baby Ava’s death… we’ve been without her for half of a year and I find it really hard.  I’ve said it before, but the more time that passes just makes me feel like I’m getting further and further away from her… it’s like I’m leaving her behind and putting more and more miles between us, and I don’t like it.  It’s been six months since I held her and kissed her and told her that I loved her.  Six months since we had 5 children and 6 months since we had to say good-bye to someone who we loved so very much.   And it’s tough, it really is.

But in this grieving process there are still so many things we are thankful for.   First off, we are thankful that people are still praying for us – even though its been six months and we don’t update often.   When people tell me they are still praying we feel so blessed that people have not forgotten us and that God is still laying us on people’s hearts.    Another thing I’m thankful for is just how busy our life is with four kids (no matter how much I complain).   In my life there isn’t often time to just sit and think about how much I miss Ava.  Lying in bed before we go to sleep is often when it hits Jay and I, but this long winter has tired me out and it’s not often I can stay awake for more than a minute or so, praise God for that.  🙂

And we know that we were fortunate that we were able to do quite a bit of our grieving before we lost Ava.  The actual truth is that we started grieving before she was born.  We always had a strong hope that she would beat the odds and make it –  but because we almost lost her a few times before she died, it forced us to take a look at what our future would look like without her.   It’s like we were able to practice grieving… and those times were incredibly painful, but it did help prepare us.   And because of that, we know that we are grieving in a complete different way than those who suddenly lose someone they love.  It’s just that for both I’m sure the end result is the same…   living with the memories of a person you long for, and missing them like crazy.

I miss my Birdy… I really do.

Oh that God gave us that precious gift, but only for such a short short time.  Having Ava taught us so much about God’s goodness to us and His incredible faithfulness that if I ever doubt God again I hope someone smacks me… hard.    And there is the promise that God used this time in our lives for His glory and to strengthen our faith and bring us closer to Him. We also know that it made us more aware of the suffering of others and I hope God will continue to keep using these lessons learned in our lives as long as we are here on earth.

Here’s another wonderful promise….

1 Peter 5:10&11 And after you have suffered a little while, the God of all grace, who has called you to his eternal glory in Christ, will himself restore, confirm, strengthen, and establish you.  To him be the dominion forever and ever. Amen.

Praise God for His promises…. Amen!

Two Months

It’s two months today since our sweet baby Ava died, which means it’s been two months since we held her and kissed her and said good-bye to her.    And I look back now and I marvel at how God gave us the grace to let Ava go that day.   How we were able to hold her and wait for the end to come without completely breaking down.   God carried us with amazing incredible strength and for that we can look back and praise Him, even in the midst of the pain of that day.

And we still miss Ava so much, and the ache in our hearts hasn’t gone away.   And grief keeps sneaking up on us, where one minute we are fine, and the next minute we are in tears.   I see her pictures and I just want to hold her and kiss her and love her, and then I just hope that when she was with us, I loved her enough.   I know I tried to spend as much time as I could with her the last few months when she was in hospital, but I obviously couldn’t be with her 24 hours a day if I wanted my other kids to remember that they had a mother.  It’s just that now I wish that it had been possible for me to have never left her side.   Although I’m grateful once again for the support of friends, and it helped that one of my friends who is a nurse on 4D kinda scolded me when I  asked if I loved Ava enough when she was there.  🙂  And I do know that when I wasn’t  able to be at the hospital, Ava was receiving a lot of love from the nurses and they were so good to her.    I really do think it’s more of a case of me wanting to give her some love right now (oh what I would give for a cuddle with my baby!) that makes me wish I could have given her more then.   But the reality is that Ava didn’t feel good alot of time and when she didn’t feel good, she didn’t want to be held.  And she slept so much too.  She was just a sick little baby,  who has now left all that behind and is free from her body of death, and is now enjoying the glory of God in heaven.  Praise God.

And it’s kinda sweet, but our little Sophia is the one who tells me that she misses Ava the most.   She’ll look sad and I’ll ask her why, and she will tell me that she misses Ava. Actually for the past week she’s been telling me that she misses 3 things…. the stray cat that was hanging out around our house for a while (and thankfully found a home elsewhere), Ava, and our friend’s dog named Duke who she hasn’t seen in a while.   Sophie makes me smile.

We were really fortunate to be able to spend some time together at the cottage this weekend.  Some friends were there for a bit as well and the weather couldn’t have been nicer if we had ordered it online.

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And yes, Jason was able to borrow the Gator from work and it certainly did alot to enhance Jason and the kid’s enjoyment of the weekend, I’m glad you noticed.

In other news, Erik managed to break his arm almost two weeks ago by falling off the swing… rather inglorious actually as he wasn’t really swinging and in his own words said that he just forgot to jump off.  Oh Erik.    After the fall he was in  a lot of pain that seemed to be getting worse so off to emerg we went.  I was a little worried about going there seeing that it was one of Ava’s favorite spots to hang out, but all it did was managed to feel very familiar.   Now because Erik wasn’t top priority, we had to wait a while and after a few hours Erik didn’t seem to be in much pain anymore and i was kicking myself for running to emerg so quickly because I was starting to think that it was nothing.   But thankfully when the doctor came in she diagnosed a buckle fracture and fitted Erik with a splint.    He’s been great about wearing it and taking on and off himself so it hasn’t been that bad.  But it’s our first broken bone and I hope it’s our last!

William also distinguished himself last week by coming in 5th place in our school district’s semi-final Cross Country meet.  Jason and I were very proud and were also glad that all his running around inside our house has finally paid off.  Next week he is off to the finals and I’m already nervous for him, but he’s a pretty good sport and I know he’ll be happy whatever place he comes in.

So life isn’t slowing down for us.  But even though it’s been two months since we lost Ava,  praise God He is holding on to our hearts and we are doing OK.   We miss her like crazy, but we are doing OK.

A sunny peaceful place…

Today the girls and I and Grandma went to visit Ava’s grave and put a few flowers on it.  I hope this isn’t super morbid or anything, but I wanted to show you what a sweet peaceful place it is where we laid Ava to rest… just a little country cemetery where the only noise you’ll hear is the birds and the breeze.

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Ava’s resting place is in the top center of the picture… where the grass sitting up higher with the bouquet on top between the two headstones.   It’s certainly not a morbid place for the girls, they seem to enjoy going and today they enjoyed pumping water from the old-fashioned well and watering Ava’s grass – although Sophia kept saying we were ‘watering Ava’.  Oh dear.    Because it’s a small country cemetery you can plant flowers on the graves and Sarah thought that we should water all the flowers on everyone’s graves, but we declined for lack of time.  We watered the flowers in the cemetery’s flowerbeds and called it a day.

And talking of days,  tomorrow the kids start school!   I’m really looking forward to having us all back in routine and I’ve purposely planned for this week to be busy so that time won’t weigh heavy on my hands.   It helps that Jason is still off this week so I won’t be alone.  And we are travelling to Toronto on Tuesday and will be at Sick Kids to pay a visit to Tanya and Alleeda and baby Britton – as well as all of our friends on 4D!!!   I can’t wait… I miss everyone so much and they have been so supportive that we feel very blessed.

It’s hard to believe that this coming Thursday it will be 4 weeks since Ava passed away.   The reality of her being gone is starting to sink in and even last night I was feeling really down until I was encouraged by a friend, and then I thought of a verse that another friend had sent to encourage me,  Romans 8:18 where Paul says…. “For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed in us…” and it was such a good reminder to me that yes, there is suffering in this world, but it’s all worth it.  And I can tell you that I miss my baby from the bottom of my heart, sometimes the tears won’t stop and I just wish she was here.   But you know what,   I’ve come to realize that I would do it all over again – every minute with Ava.  I would because of what she taught me and how God changed me, and the people we met and how our family grew together and how we leaned to count our blessings.

So praise God that even now I can even now appreciate a sunny peaceful place, remembering with joy that Ava isn’t really there, she is alive and rejoicing in Heaven and someday I will see her again.

Amen.

Life goes on…

LIfe goes on, and I think that is one of the hardest things I’m having to come to grips with 11 days after we’ve lost Ava.    My whole life has changed, not only in the fact that my baby is gone, but even to the fact that where we live has changed, our family dynamics have changed, what life looks like going forward has changed.   So it’s strange that even with all that change, day-to-day life still goes on like nothing has changed.  You still have to eat, you still sleep, you still interact with everyone.   We went to church yesterday and got together with friends, and even those were normal things, I think they almost hurt me more,  as part of me thinks life shouldn’t be back to normal so soon.  I’m not sure that makes sense.

Grief is an interesting thing.   I may have thought that I would spend my time crying and missing Ava, but most of the time I just go on with this ache inside my heart.  I was thinking today that this ache is like a little grey cloud.   Sometimes the sun shines through and the ache isn’t so bad, and sometime the clouds gather and it actually gets stormy enough that I cry,  but that doesn’t happen very often.    I sometimes wish that I could cry more.  Maybe because crying  is an opportunity to feel real grief,  because the ache I carry around more often than not just makes me feel a bit numb.     

But I know that grieving is important.  One of my favourite parenting books describes grief this way, “Grief is the emotional tool God placed in our hearts to enable us to release things we value.”  (Parenting is Heart Work, Turanksy and Miller).   Isn’t that good?    And it’s hard to let go, but I don’t think there is any rush for us to get through this grieving process.    It’s actually very interesting hear the kids talk about Ava.   We’ve stopped by the cemetery to visit’s Ava’s grave twice already since the funeral and Sophia who is 4 is quite confused about where Ava is…  tonight she said that she thought Heaven was in the ground.   And even though we’ve been trying to explain that Ava’s spirit has left her body, she can’t understand the concept, and is now just worried about dying and she doesn’t want to go to heaven, which now that I understand what she is thinking is really not all that surprising. 🙂

Our boys were sad tonight because Ava had never been to the cottage and I’m a little worried about Sarah because she doesn’t seem to want to talk about it anymore.   I hope that her heart stays soft and she can still talk about Ava and what she misses.  Jay and I will definitely be praying for her.

So we keep moving forward day by day.  I’m so incredibly blessed to have the family that I do have, for an incredible husband who is so patient with me and is filling in all the gaps as I keep dropping the ball.  And for my kids, who have been so gracious through the whole Ava journey, but now are just happy to have me back.

So life goes on.  And it’s hard, but it’s OK.  And praise God that as life goes on,  He won’t make us walk alone, but will be comforting us and guiding us each and every day.

Home

We are home, and it feels strange.  I think it’s maybe like how a solder feels after being away on the battle-ground, and then finds himself home and the battle is over.   We are grieving the loss our sweet daughter and we miss her so much.  But on the other hand, there is so much relief that she is finally at peace and isn’t hurting anymore.   It’s grief mixed with relief.   And it all comes in waves.  One minute we are fine and dealing with practical issues, and then the next minute we are swamped with feelings of sadness.  I didn’t want to go to bed last night because I knew that once I actually stopped being busy I would probably just cry and cry.  And I did.    But knowing what she was going through in the last days of her life helps comfort me knowing that she is more alive in heaven right now then we are here down on earth.  She is free from her body of death and has gone into eternal light.

And I’m happy to report that the kids are doing good.  One of the doctor’s from the PACT team told us that children grieve in puddles and adults grieve in rivers.  And I liked that and it’s proving to be true.    The kids hop in and out of their sadness, sad one minute and happy the next, which really isn’t unlike Jason and I, I just think we feel it deeper.

But oh I miss my baby!  What I wouldn’t give to have her back wtih us!   But in my heart I know that she had to go.   The doctors and nurses were very honest with me which we appreciated so much, and I’m so glad we could let Ava go before her suffering got worse.

And we just wanted to thank everyone again for all the kindness showed to us.  For Jason’s parents who came down to see Ava before she died, for my parents who came and supported us and cared for our kids during her death.  For the nurses and doctors and staff from our ward 4D at Sick Kids who showed us so much kindness and compassion… they really do feel like my family now.  We want to thank our church family for praying and supporting us, for my friend’s who cleaned my house this week, for friends who brought food and flowers to welcome us home.   And for all you readers who have left us comments just letting us know that you are here for us.

Tomorrow I will give you some info about the funeral, but I have to go now because I am too tired to think.  But happy (mostly) to be at home, even if it’s without our Birdy.

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Flown away

Our sweet little Birdy has flown to Jesus. She died peacefully in our arms tonight and is finally free from all the pain and suffering that was hers.

Our hearts are hurting and rejoicing at the same time and through all of this we feel so blessed for every minute we had with Ava.

I’ll share her verse one more time…

My flesh and my heart may fail, but God is the strength of my heart and my portion forever. Psalm 73:26