My Perspective: Bekah, Mother of Titus

A New Set of Eyes

It’s taken me a while to hunker down and write a new post. Life as we know it is changing, fast. Each time we adjust, change happens and we have to adjust again. We are living in a stark reality that there is a timeline on my son’s life… it isn’t assumed, it is a fact. And the fact is that it’s too short. Or at least that is how I’ve always thought, my brain never thinking there was another way to operate. We are supposed to live long, die old, getting to experience great things! Titus should be able play in his first soccer game, graduate, get married and be a dad! That is really living! Right?

This disease has stolen a lot from us in a short time. I find myself in tears over the “lasts” we’ve experienced that I didn’t even know were “lasts”. The last time I would hear my son proudly state that his name is “TITUS!”, the last time I would see him run to the park up ahead of me, the last time I would know for a fact that he saw me smile at him, the last time I would hear him say “love you”. As this change has happened, I’ve had to figure out how to relate to my son in a new way. His vision is almost gone. How do I help him still see? What does that even mean? He is going to go the rest of his days blind, so does that mean he has to miss out on the beauty this life offers?

And then I read this out of One Thousand Gifts, by Ann Voskamp. “The only place we need to see before we die is this place of seeing God, here and now.”

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Taken yesterday on Titus’ bike, love the glimpse through his eyes to his soul

My son doesn’t have to score a goal to fully live. He doesn’t have to live to be 92 with grandkids and great grandkids to fully live. My son doesn’t have to be able to see everything around him to fully live. My son is fully living here and now and I know this because I see his spirit. I see his joy. Joy does not have a physical prerequisite to be able to experience it. We do not have to physically see God to know he’s here and working… We see him through our spirit.

This aha moment had given me new eyes too. No longer do I walk blindly through the day doing my momma thing only to have my eyes opened by some majestic landscape or some huge miraculous happening. My eyes are always open. And so are Titus’s. We breathe in the daily beauty, the smiles, cuddles, hugs, encouraging words from others, the times we play fetch with Sunny, the times when we go outside on a walk, when we simply lay still, and through all of that and more, I find reasons to be thankful. And out of thankfulness for all God has done and continues to do, I find joy.

We aren’t operating in bucket list mode anymore. I don’t think to myself, “someday when we can do this again, we’ll really be living”. That is a dark path for me to walk right now. No, instead I choose to see life through the eyes of joy in the here and now. Through the eyes of thankfulness in the here and now. We don’t ever completely grasp what God has done and is doing until we learn how to live in this way. How to see through new eyes.

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Thankful for this goofball, Ely, always giving us a reason to laugh

So today, I saw my son’s spirit as he pursed his lips and spit, egging me on to do a giant raspberry on his tummy. And I will see his spirit in the way he calms as I hold him. And in the way he pounds his arms up and down to feel his world and how he still laughs at his brother because he just knows what Ely is doing. And when my son can no longer show any of this through his physical body, I will still pick him up and dance with him, I will still sing to him, pray with him, hold him. I know that he will still see God even through the limitations set out for him. Today, I choose thankfulness and joy, here and now and for that I see through new eyes.

Read more on Bekah’s blog, Can’t Steal my Joy.

Learn more about Batten disease.

One thought on “My Perspective: Bekah, Mother of Titus

  1. Anonymous says:

    Bekah, you are an amazing mom. Even though you only have a short time with him, God has trusted you with Titus for this time. Mary was chosen by God to care for Jesus just as you were chosen for Titus. Titus is so lucky to have you in his life and will always see the beauty of life thru the love you show him everyday.

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