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3 Month Liver Post Op Update

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If you are new to the blog, the past few months have been the hardest I have ever experienced in motherhood.   Everything from a high risk pregnancy that required close monitoring, spending over 400+ days away from my older kids and family, and the whole time wondering if our baby girl will “move past” some of her medical complexities and ever get to see the outside of her hospital room.   I know God is working and that He is always good and faithful but there are so many times (especially as of late) where I feel defeated, frustrated and anxious that I just can’t see what He sees.   We are on day 477 of our sweet baby girl being in the hospital, where she is currently resting inside of PICU and I am still clinging to this specific story from the Old Testament that shows how God works in our story. In Exodus, when God was leading the Israelites out of captivity it says there were two paths that He could have led them down to safety.   A shorter path through a cit...
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Meeting with Liver Transplant Team

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Just the other weekend, I was driving around with three upset kiddos, sipping on a flat bubbly drink that I had left in my cup holder from the day before, desperately searching for some extra sanity.     It’s been weeks now of on and off crying.   The girls especially are feeling big feelings and all three of them have been struggling with colds.   I know these little tikes aren’t GIVING me a hard time, they are just HAVING a hard time….but knowing that truth doesn’t grant me the magical ability to function on a few hours of very interrupted sleep.   It’s been a little tough over here.   On top of that, we have had a lot of big meetings covering some heavy medical topics the last little while for Veya, including a presentation to the transplant team and possibly another large surgery sitting on the horizon for her.   So I packed up the kids and started driving around looking at everyone’s outdoor Christmas decorations. They all needed to take a q...
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Location: Toronto, ON, Canada
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Veya's 1st Birthday

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One year ago I wrote this letter to Veya not knowing the journey we’d go down….   Dear little warrior, Induction is scheduled for tomorrow and after nine long months we finally get to meet you!   Shepherding you into this world has been an honor and one of my favorite life journeys.   You are so loved, you are so treasured.   You have been prayed for over by more people than I can count.   But, you have a long journey ahead of you, little warrior.   You’ll have to be brave.   You’ll have to find your strength.   You’ll have to learn how to fight for your life every minute, every hour.   But you can do it, I know you can.   God is here carrying us all. We will be next to you, always, every step of the way.   We promise to pray over you and love you.   We promise to hold your hand through recovery….read your favorite books…and sing you your favorite songs.   Above all we pray you will recover quickly so the world gets to...
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Location: Toronto, ON, Canada
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In the Waiting...

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"I wait for the LORD, my soul waits, and in his word I hope"  - Psalm 130:5 In the waiting, I’ve quickly learned that life keeps moving and so should I. Baking our favorite sweet treats on Saturdays with our children has become a small, joyful practice, reminding me of God’s goodness in the little things.   Those warm, gooey treats aren’t just a delicious snack, they’re a reminder to savor the sweet moments, even in the challenging seasons.   Scheduling that much needed rest care, even if it’s just for an hour, or a week/two break form the hospital… has taught me that taking care of myself is important too. It’s about stewarding the life God has given me even in the midst of the waiting.   Also discovering the importance of celebrating inchstones… not just milestones, recognizing that each tiny step is a tremendous victory and blessing.   Advocating for Veya has revealed a strength I never knew that I had within, pushing through exhaustion because her potent...
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Location: Toronto, ON, Canada
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"Glass Child"

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  "The LORD is my strength and my song, and he has become my salvation; this is my God, and I will praise him, my father's God, and I will exalt him"  Exodus 15:2 “Glass Child”   A term used to describe the challenges of siblings of children with disabilities or serious medical complexities/chronic illnesses. The term refers to the idea that parents seem to “look right through” their healthy children due to the demands of caring for the child/children with a disability.  Jeremy and I often think of all the feelings that we are processing, that undoubtedly, our healthy children must be feeling them too. However, they are trying to process and keep up with everything through the lens of a child, without the maturity to really be able to grasp the magnitude of their little sister’s medical needs.  This is an aspect of being a medical family that I haven’t discussed too much here, it’s not super easy or fun to talk about it either …it’s even harder to navigate. Th...
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Location: Toronto, ON, Canada
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