A trip to Toronto

It’s Friday already!  And I really thought that I would post this post sooner… but apparently that didn’t happen.   So it was already 5 days ago when I took a train to Toronto to visit my good friend Tanya who I left behind in Toronto when we came home in August.   I’ve written about Tanya before and I’m so blessed to call her a friend.  We grew quite close as we walked the same path of being mom’s to our girls waiting for heart transplants and she was (and is) an inspiration to me and a huge source of knowledge.   She also makes me laugh alot… which is good, laughter is always good.

Anyhow, I hadn’t seen Tanya, or her daughter Aleeda who received her new heart August 2nd, or Tanya’s three-month old baby daughter Britton in almost 2 months –  so thankfully Jason encouraged me to go.   And I’m glad I did as it was wonderful to see them again.   Aleeda looked amazing and it was so nice to be able to hold her and cuddle her and see her happy, and she grew!  Since she has received her new heart she has grown so much and filled out, and her hair is longer and she looks like a new kid.   And I was also so pleased that she remembered me and wasn’t mad that I hadn’t visited her in so long.   And baby Britton is getting big and is so sweet!   She was my therapy baby when she was a born – holding baby’s for me is the best therapy I could ever get – and I even got to babysit her briefly while I was visiting this time.   I felt like a nice sort of aunt.

Here are the girls in their stroller, the sweetie-pies. I love how Britton is on the bottom shelf…

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Now even though Aleeda looks amazing, she is still in  hospital, which is rather frustrating.  Especially considering the fact that she has been in hospital since July 2012.  Can you just imagine?  Tanya has not lived at home with her husband in 15 months and it will still be a while before she gets all the way home.  Hopefully soon Alleeda will soon be released to live at the Ronald MacDonald House, but until her feeding issues get sorted out, she is stuck in hospital.  On Tuesday morning Aleeda did get a g-tube, so that ng tube you see on her face is no more – which is always nice to see.  But please please pray that God would intervene here and heal Aleeda’s tummy so she can go home.   My dream is that their family will be reunited and home by Christmas,  please pray with me!

I came home on Tuesday and I made it back just in the nick of time to watch William run in the cross-country finals.  And I when I mean just in time, I mean that I had to run and bum a ride of a stranger (another mom whose child was running) to make it there 2 minutes before the race started – but I saw him start and finish – and William came in 6th!   Out of all the grade 3 boys in the city,  running  a kilometer and half.   We are so proud.

And then Wednesday was back to real life for me, but I felt really unsettled and a bit down.  It didn’t seem that terribly hard to go back to Sick Kids when I was there, but coming home again made me realize once again just how much I missed Ava.    But it was more than that…  it was seeing families who we knew while we were there with Ava, and who are still there,  as well as meeting new families who have sick little one’s and even seeing Leo’s family as they waiting for him to come out of surgery.     It made my heart ache for these families who have to go through so much.    I can’t tell you how much strength we got from our faith in God as we walked through our journey with Ava.  It covered us with peace and joy even in the darkest times, and now I’m committed to pray for the families that I’ve met who are still walking through it.

But I know that losing Ava has changed me forever, and has even changed my view of the world.   I know now that I have no control over life, I know that bad things do happen and things aren’t always going to turn out as I want.  But am I worried, or discouraged or even depressed?   No I’m not. 🙂     Because I have a personal relationship with the one who has control over everything, the same guy that allows these seemingly bad things into my life for a reason and when I get to heaven He is going to show me how these things all turned out for His glory.   Praise God,  He holds it all in His hands.

I love this verse… here it is again…

2 Corinthians 4:16-18

16 So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. 17 For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, 18 as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.

Amen.

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Challenges

I had a bit of an emotional day yesterday.  And no, it wasn’t because of Ava, it was because of Sarah… or I guess because of her diabetes.    Since we’ve been home and the care for Sarah has shifted from Jason to myself, I’ve been going at it for two months now, but it struck me that this is not going away… ever.   And it just seems so huge.

I guess it’s just that some days it’s just so over-whelming.   Like Thursday night when I made dinner and then sat down to figure out the carbohydrate count of the meal… for some reason it just ended being so complicated and I just couldn’t figure it out and dinner was delayed and it was extremely frustrating.   And then there are the days when Sarah doesn’t want to check her blood and flinches when she gets her needles and I just want diabetes to be gone and I just don’t want Sarah to have to deal with it for another day.

I’m so grateful to my friend Kim who was doing some research on Type 1 diabetes on Thursday and sent me some pins and then I went looking for some myself.  So I’m not sure if she found these or I did… but I like ’em…

heros

And this one, the definition of bravery….

i_do_what_i_have_to_to_survive_by_atouchofdestiny-d4ddgdy

And of course this one…

babydiabetes

Hahaha.    But once again God is faithful and He gives us the peace and the grace to deal all the ups and downs of diabetes.   Through the times when Sarah’s sugars are out of wack and we don’t know why, or when we think about the upcoming seasons of candy and treats and having to find a way to make it all work for her, without making her feel stigmatized or left-out, and without making her resent her siblings or them resent her.  Sigh.   Oh the challenges life throws our way.

And speaking about challenges, please pray for Aleeda and her mom Tanya.  Aleeda is our little friend from Sick Kids who received her new heart at the end of July, but is still in the hospital dealing with some feeding issues.  Before her heart transplant she was doing a combination of oral feeding and being topped up through her ng tube at night.  But now the doctors have decided that she needs a g-tube, a surgically placed feeding tube that will go directly into her stomach.   I’m excited because I actually have a plan to go to Toronto on Monday to spend the day with Tanya and Aleeda and our other friends at Sick kids, so I would really appreciate your prayers just to ensure my health stays good between now and then so I don’t carry any unwanted bugs to Aleeda.

Please also pray for little Leo, another one of our cardiac friends who is having major surgery done at Sick Kids on Monday.  We are so grateful he will be in good hands!

I’m so thankful that I serve a great God who knows all about challenges,  and has promised that He will give me everything I need.   That why I love this verse,

2 Peter 1:3 His divine power has granted to us all things that pertain to life and godliness, through the knowledge of him who called us to his own glory and excellence,

I can just rest in His promises.  Praise God.

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.

Thanksgiving

Since I couldn’t find the words to write tonight when I wanted to blog,  I though I would borrow some words instead…

Psalm 100

English Standard Version (ESV)

His Steadfast Love Endures Forever

A Psalm for giving thanks.

    Make a joyful noise to the Lord, all the earth!
2     Serve the Lord with gladness!
Come into his presence with singing!

3 Know that the Lord, he is God!
It is he who made us, and we are his;
we are his people, and the sheep of his pasture.

4 Enter his gates with thanksgiving,
and his courts with praise!
Give thanks to him; bless his name!

5 For the Lord is good;
his steadfast love endures forever,
and his faithfulness to all generations.

 

Amen!

P.S.  I think I can’t find the words because I have TOO much to say, I will try to blog again tomorrow. 🙂

Sudbury

Here we are again.  Another week has passed and I am attempting to blog and my plan is to succeed.  🙂

First off, as a family we are doing fairly well all things considered.  We are working on getting a good school routine going with the kids and I’m pleased to report that Sophia seems to have turned a corner this week in regards to wanting to go to school.  Up until now she’s been hesitant about going and has refused to take the bus in the morning. I don’t really mind driving her, but when I drop her off I’ve been having to find one of her teachers to hand her off too and then she would start crying and I would have to peel her off of me and bolt.   The teachers always said she was fine five minutes later, but it still wasn’t a fun routine.    But  yesterday morning when I dropped her off at school, she found a little friend right away and I left her happily playing in the play-yard and she was fine with me leaving.  And she was all smiles when she got off the bus in the afternoon, and this morning she actually rode the bus to school!  Way to go Sophia!

And Sarah is doing well.  She’s loving school this year and on Saturday, she and I went to a ‘Diabetes Family Day’ put on by the hospital.  It was really good and I learned a few things and Sarah  met a little friend who also has diabetes who we plan on keeping in touch with.   So I was really glad we went.

William is also doing well.  I do think that he is still trying to process everything that has happened, and so we are trying hard to give him the extra time he needs with us, and that boy likes to talk.  He also likes to run so we were happy that this year he could join the Cross Country team at school.  He just loves it and its so nice that he has an outlet for all his energy and I can’t wait to see him run in a meet.

Erik has also been busy since he bought a Raspberry Pi online (it’s a computer) and has been busy learning how to program it.   I found a website online where you can learn to code and that’s how he loves to spend his time now… which kinda makes me laugh, but I’m very proud too.  Except I wish he was as interested in his math homework.   Jason and I aren’t sure where we got Erik from, but I’m pretty sure he’s already smarter than me.

So with our family update out-of-the-way I can tell you about our quick trip to Sudbury.   You might ask why we would go up there, and I will tell you but it’s actually a sad story.   It starts with us spending the summer at the Ronald MacDonald House with a family who had a son named Jordan who was 9 years old.  He was also born with hypo-plastic left heart like our Ava,  but he had his three open heart surgeries when he was young and so was living with his half a heart.   When we met them, his family was staying at the house because Jordan was experiencing some health complications due to his heart, and as it turned out, Jordan was also listed for a heart transplant this summer like Ava.    One nice thing was that for most of the summer and even up until the time that we left in August, he was able to live at the Ronald MacDonald House with his family while he waited for a heart.   And we enjoyed getting to know his mom and dad while we were there, and Sophia liked playing with Jordan’s little sister who was the same age as her.

Now I’m a little sketchy on all the details, but I do think Jordan had been admitted to Sick Kids and had spent some time there before a heart did come in for him two weeks ago Tuesday.   Except that Jordan walked into the operating room, and didn’t come back out in good shape at all.   It was hard to hear that the transplant did not go as hoped and a few days after the transplant surgery, Jordan lost his life.    We were so devastated by the news, not only because we had gotten to know Jordan and his family,  but because this new heart was supposed to make things better… not hurt him and take his life.    I guess it was kinda shocking for us in a way, because the whole time we had waited for a new heart with Ava, we had never really thought that an outcome of a transplant would ever be different from something good.  Perhaps that was just naive of us,  but it makes us wonder now what would have happened if Ava had received a heart?   I guess it’s a non-issue, but , but it’s still a little tough.

But remember how I said that our faith in God gives us assurance that things worked out for Ava the way they were supposed to?   I know the same is true for Jordan, but it doesn’t mean there isn’t grief, and I can only imagine how losing a child you’ve had in your life for nine years would just turn your world upside down.

When we heart the news about Jordan,  Jason and I both knew right away that we needed to go to Jordan’s service, and so that’s why on Sunday morning we packed up and headed north.   Far north.  But honestly, it’s not as far as i thought it was….. for some reason I was thinking half way to the Arctic (haha), but as it turns out it’s only 5 1/2 hours from here.   And God was very faithful to us and provided us a safe journey as well as a place to stay in the form of another family we had met at the Ronald MacDonald House who also were from Sudbury.  They have 7 children and share our faith and we were very excited to be able to go and spend some time with them.   And we did have a wonderful time together.  They were very hospitable and all the kids had a blast together and if we could have stayed a week, we would have.   But we could only manage to be away for one night, and so after Jordan’s service on Monday we had dinner with our friends and headed home again.   But not before stopping to see the big Nickel.  You can’t go to Sudbury and NOT see the big Nickel

bignickel

And here is a pic of the kids together…

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I love big families.

So that was our Sudbury road-trip.   Please keep Jordan’s family in your prayers as they continue to grieve for their son.   I know we are still grieving the loss of our Ava and it’s hard because every day that goes by is a day that I feel further away from her.  It’s one more day added on to the days I haven’t been able to hug her or hold her and it’s hard to think of going ahead and getting that much further away from her.   But on the other hand I know that everyday is a day that I will get closer to seeing her in heaven.  Praise God for the assurance that I have that when I die I will go and see her again.   I can’t wait. 🙂

Blessed be the God and Father of our Lord Jesus Christ! According to his great mercy, he has caused us to be born again to a living hope through the resurrection of Jesus Christ from the dead, 1 Peter 1:3 ESV

Amen.