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…

20140509_175106(0)

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.

20140509_172029

20140509_173533-001

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”

20140510_155014(1)

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!

Advertisements

Six months old!

Wow, Ava was 6 months old yesterday!   It’s hard to believe that we’ve had her for half a year already… it actually seems like longer, perhaps because it’s been so busy. 🙂

And she is still on the mend.  She had a few more  awake periods yesterday, which was nice to see.  And although they had talked again yesterday about giving her a blood transfusion to up her hemoglobin levels which were low, they held off because they still weren’t happy about her fluid balance as they felt she was puffy and retaining too much fluid.    So yesterday, they kept working on getting Ava to pee more, and gave her more drugs to help the diuretics, but when they looked at the numbers –  her calculated fluid in and fluid out – nothing seemed to be helping.

Then last night at 3:00 am,  Ava had a big wet diaper which was great news,  and her nurse went to weigh it, but the scale said the amount in the diaper was only about 80 mls.   The nurse thought  that was strange as it felt much heavier so decided to weigh the diaper on the scale next door and guess what…  the scale in Ava’s room was wrong!!!    The diaper was more like 140 mls, which obviously meant that they hadn’t been able to get accurate amounts of Ava’s outputs for who knows how long,  as the scale was under-weighing her diapers… grrrrr.    So the poor baby had been made to pee too much, and ended up being very dry, and when they weighed her today it showed that she had lost a lot of body weight (probably mostly fluid), so that wasn’t too good, but but thankfully today they are trying to correct everything by upping her fluid intake and she did get her blood transfusion which should help to perk her as well.

She still has her cough and she still has gunk in her nose, and still isn’t feeling the greatest.   But as the nurse said today, if you or I had what she had, we would be in bed and would have taken a week off of work.  So it stands to reason that this bug has been hard to beat for our little Birdy with her not-so-great half a heart, as well as the stress of Saturday when she didn’t eat all day and had the picc line insertion, it’s just a blessing that she’s lived to tell the tale!!

But we praise God that He is healing her and for the fact that He is still laying her on people’s hearts and prompting them to pray for her.  God is not finished with Ava – but I realized today that what I really need is a good dose of hope.   I know that God is a God of miracles, and He could heal Ava and bring her a new heart, but I also know that He gives and takes away, you know what I mean?  So it’s a very difficult place to be in –  and I know there are other families who are dealing with similar situations –  a place where you don’t  know how to think or how to feel.  Are we to look ahead with hope at bringing her home some day?   Or should we be preparing our hearts (I don’t think we ever could) to let her go?

At this point all I can say is that we are looking forward to getting all of Ava’s pre-transplant  testing done so Jason and I can have a heart-to-heart with the transplant Dr’s and see what they say.  Hopefully they will say that Ava is a good candidate for a transplant, and that she is in a position to hang on for a heart, however long that might take.   If they say something different, we will just have to cross that bridge when we come to it.

Regardless of what happens going forward, the six months that we have had with Ava have been a blessing and we count each day as a gift.   But please pray that God would be gracious to us give us some tiny glimpse as to what our future holds with Ava.  Our future with our sweet little 6 month old who needs a new heart.

Momava

So thankful

Well I’m sitting here thankful for quite a few things.  First off, for all the support and love that people have sent our way through emails and comments on our blogs the last couple of days… you guys are making me weep (in good ways) – and reminding us over and over that God has not forgotten about us, He’s still laying Ava and our family on your hearts – and even your little one’s hearts –  and so even today when I don’t seem to have much hope in hearing good news tomorrow, we know that God still cares and is being so faithful.

And the verses that you guys are sending!!!  Love them!   Here is one that a friend sent… with her note

Romans 15: 13 May the God who gives hope fill you with great joy.
                               May you have perfect peace as you trust in him.
May the power of the Holy Spirit fill you with hope.
(this is from the NIV bible for young readers…so simple isn’t it?)

It is simple, so simple, but exactly right and just what we need right now,  joy, perfect peace and hope…. all free gifts of God to those who believe in Him and call on His name.  We are so blessed by God even in this crazy situation.

So yes, the situation.   Ava’s echo tomorrow is going to be a sedated echo, so she will be NPO (nothing passes orally) starting from 4:00 am to get her ready for sedation for 9:00.  It is going to be a very thorough echo, they are going to leave no blood vessel unscanned as they seek to discern whether or not Ava’s heart function has improved at all.

As the doctor on rounds said today, if her heart function looks better, we will redo the cath.  If it’s not better, or if it is worse then….  He just stopped talking.  He didn’t need to continue, we both knew what he meant.  It means we need to think about transplant.

But that is still tomorrow’s worries, so I won’t borrow trouble.

I am thankful that my mom could come down and spend a night with me and spend time with Ava.   I’m grateful that the Ronald MacDonald House got us an apartment and that my mom could help me move in and that Jason and the kids will join me shortly.   And I’m grateful that we have such good care at Sick Kids and that Ava’s cardiologists, both in London and Toronto are very caring and compassionate.

And I’m thankful that Ava is doing so well and had a good day and that even though we are in room with sick children we still can laugh and joke with the other moms and nurses and have good days.

And I’m grateful that Jason is doing an amazing job at home with the kids and that friends and family are helping so he doesn’t have to do it all on his own.

But please please, keep praying!  Your prayers are strengthening our faith and God’s power is evident, and whatever comes tomorrow, we know that God will see us through.

Amen!!