And around & around it goes…

It was a gorgeous, clear, sunshiny morning here in Northern Manitoba. It actually felt….(dare I say it)…summery! (Don’t worry, I knocked on the wooden table when I typed that out!) The warmth of the breeze, buds in full bloom on the trees in the forest just beyond our back yard, and coffee on the deck with our best friends. Our children played, our dogs raced to fetch things in the forested area, ah yes….that’s the life. Happy hearts and smiles all around.

My best friends sweet little girl, whom I tend to call my “niece” (because I’m blessed enough to be “Auntie Lacey” to her), headed over to the swing-set with a spring of joy in her step. Since she, like Evy, is only 3, she realized she needed some help; she yelled “Daddy, push me!” with her lighthearted & happy little voice…

And just like that, it was back. It almost always comes back around….

The grief. The sadness. The gnawing feeling in the pit of my stomach as my mind anxiously whispers “will Evy ever ask for our help that way?”, and “will he ever learn to swing on his own, as all children should have the right to do?” I swallow hard, and silently answer that voice: “YES. He will, all in his own good time“.  I take a deep breath in, and re-focus on the love that I feel in that moment for my best friends and the memories we made this weekend. (Go away grief, you are not needed here!) But man….the work of talking oneself down off of that ledge is taxing. The effort of re-framing things is not in endless supply. It drains bit by bit…

And just as I have realized so many times before…it hits me again: parenting a special needs, or extraordinary needs (thank you, K!), child is not at all for the faint of heart. Not that I want such a title, or that I am putting myself on any sort of proverbial pedestal….I assure you, I am not! Any parent/guardian knows that the lifetime job of parenting is no cakewalk. I suppose that’s why people say that bringing up human beings is the hardest job in the world, because it’s so very true! However…what hit me hard in the gut again this morning was that the cycle of grief is going to circle around continuously…possibly forever.

Scott & I sometimes need to grieve the loss of whatever sort of parenting life/family lifestyle that we took for granted we would have. This is not a one-and-done type of situation. Just as we reach acceptance about one thing in Evy’s journey, the playing field may shift, and we will find ourselves struggling once again. Adapting once again. Grieving once again.

Later on in our day, an email arrived on my iPhone from the soccer club Cody will be playing for. His season begins tomorrow, and this is the first time that our little spunkin has ever asked to play a team sport…so we were pretty excited to sign him up! When that message came…guess what came along with it….more GRIEF. “Will Evy ever be able to play such team sports? Or will he be forced to sit on the sidelines and watch?….”

And around and around the grief goes…

I tried my best to muster up the energy to re-frame those thoughts, to acknowledge and allow those feelings of saddening uncertainty about what Evy’s future holds and then let them pass…I tried, I truly did….but as I mentioned earlier, that re-framing bucket is not magically refilled. And by that time, the bucket was running dry.

By this evening, once all of our sweethearts were in bed, I finally got the chance to let that wave of sadness wash over me. Once I spoke the words to Scott aloud about how today had felt for me, and he quietly admitted that he (for once) felt the same way, the tears began to fall. And not just a a drop here or there, but in a full-on downpour. I just laid there, sobbing, from what felt like the depths of my heart. There was no stopping it, until they ran dry.

Some people reading this may think “but Evy’s future could hold AMAZING things too! Did she not think of that?” And let me just say that I absolutely DO think of that!! I think of that as often as I can. However, sad days like this one are inevitable on this journey. The healthiest, and BRAVEST, thing that I can do is to allow myself to experience them. Of course I wish that such times weren’t a regularly recurring part of our family life, but as my mom tends to say: “it is what it is”.

I know that this journey is going to be a hard one, in ways that I can’t yet even imagine. I know, too, that the glorious things Evy will accomplish in his life will blow me away!

And, I know that the cycle of grief will be nearly endless for me. For Scott & I both.

And around and around it goes…




~Thank you for reading, and for supporting our darling Bug on his journey.  It would mean the world if you would help show support for our darling Evy, and help raise awareness for rare diseases, by following & sharing. If you have a helpful, positive, or supportive comment in mind, please leave one for us! We deeply appreciate you taking the time to be here.

Warmest wishes on your own journey.


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