Several people in our lives have expressed concern that we are suppressing our grief or being “brave” for the world instead of being mournful in the wake of losing Tori.
I don’t write this in defense or out of frustration, and I certainly owe no explanation – I write to simply provide insight into how we have been grieving in our own way in hopes that others like us might find encouragement somehow, and to ease the fears of those who are concerned.
I have observed that it is very important to not judge someone in their grief because we are all complex humans with different pasts, different psychological and emotional wellbeing, etc. We all deal with things in different ways and no one way is better. We are certainly no exception.
But we are truly doing well.
From the very beginning of our journey with Tori we have been transparent and honest. We have shared our struggles, our tears, our pain.
So many of my blog posts have been written through tears as I prayed so desperately for her earthly healing.
But no one except Brennan knows that.
While it has been less than three weeks since Tori went home to Heaven, it is important to remember that we have been grieving since February 13, 2015. Fourteen months.
Our grief really began on January 30, 2015 after hearing the CT scan results. Brain abnormalities. So many unknowns.
Our grief escalated on diagnosis day – February 13 – as we struggled to comprehend that our six month old baby girl was dying. Dying.
With each regression, with each ability lost, we grieved again. And again.
Not every week brought tears, because I’m not a naturally emotional person and never have been. But I will tell you that I cried more tears in the past fourteen months as I watched my baby girl slip further and further away than I have cried in my entire life.
And no one knows that except for Brennan and me. No one has been in our home continually to observe our grief.
We were given the “gift” of preparation for her death, something not all are given. We were able to make memories and have no regrets because we knew our time with her was short.
We thoroughly enjoyed our bucket list adventures with Tori and were so thankful for all of those opportunities because we were able to LIVE life so well with her. We found so much joy in those adventures AND in daily life. True joy.
We chose joy in the midst of our grief. Sometimes the emotions coincided as we realized that she wouldn’t be with us much longer, but joy prevailed most days.
In retrospect, we are so thankful that we were able to complete most of those adventures before she was on oxygen, before the decline really started to happen. As exhausted as we were from all the traveling and activities, we wouldn’t change a thing.
As her care intensified sometime around mid-February and her “blue episodes” became more frequent, we grieved anew and lived each day in a constant state of being alert. Each time she went blue I felt such panic wondering if this was a dress rehearsal or if this was the final curtain call.
On Easter, as Tori was healed and no longer trapped in a broken body, most of the heavy burden of grief I had felt for so long was lifted. She wasn’t struggling any longer. She wasn’t fully reliant on our vigilance to keep her airway clear from saliva. She was healed!
As her mother, as the one who was her full-time caretaker while Brennan worked so diligently to provide for our family, I felt – and feel – relief that my baby is now healthy. She is free from Krabbe. She can SMILE!
God’s Word is truth, and His “peace that surpasses understanding” (Philippians 4:7) has truly filled our hearts. We can’t explain it except to give God the glory.
I have yet to suppress my emotions and I will not allow myself to do that, ever. It isn’t healthy and it goes against everything I am.
Additionally, if I am being fake, how is that going to help anyone in our shoes who might come across my blog and need encouragement?
I have no idea what the future holds, and I don’t know what our journey of grief may look like.
But, I do know that I will continue to take each day as it comes, and I will continue to live fully in each moment, whether in joy or in grief. And I will continue to blog as transparently as ever, because truth is what changes lives and encourages hearts.
Even So, Joy 
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