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 see before we die is this place of seeing God, here and now.”
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.
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.
Titus on his adaptive bike 
Ely in his happy place – outside!
Thanks for listening…
Bekah
You are amazing! Very blessed to read your posts and will continue to pray each day for you guys.
Bekah and Danny, please know your family remains in our thoughts and prayers.
I couldn’t comment the other day because I was just overwhelmed with emotion. The comment about Titus not being able to see you really touched me. I immediately thought of the commercial where kids are blindfolded and brought to a line of moms and asked to find theirs by all their other senses- and they DO! God knit us together in our mother’s wombs. You are taking such wonderful care of His treasures. Remember you are also His treasure, and so is Danny.
I’m lifting you all up in prayer throughout my day. Thank you for sharing all so we can support you.
<3
Oh that commercial made me cry!! Thank you for your message Ashley!
Me too!
You certainly have the right attitude in how you are dealing with your son’s disease, and it’s not of this world. God has given you this insight, & I pray that you continue to feel his Spirit and guidance thru all the days ahead. I, too, had a son with Batten Disease, the Juvenile form. He went home to Jesus on Feb. 9, 2014, so after 15 months without him here, I would give anything for just one more day, or even an hour with him. Our children are so special, not just “special needs”, but SPECIAL, because they walk so courageously thru their journey here and give so much to their families and anyone who is blessed enough to know them. I recently began my own blog if you’d like to check it out, http://www.chadsgarden.wordpress.com. Thanks so much for sharing your heart and your son with everyone! — Debbie
Debbie, I am so sorry for the loss of your son. You are in a place in this battens journey that I can’t even imagine right now, it hurts! Thanks for sharing about your blog. I’m praying it is for you what this blog has been for me… therapeutic and redemptive as our warrior boys change lives through the way they carry and carried out life through their difficult journey. Sending so much love!
I love your faith! It is shines brightly, sister in the Lord! My prayers are with your whole family each day.
This is a beautiful post. With your permission, we would love to repost this on http://www.battenblog.com. Thank you for sharing!
Of course! Thank you so much for asking. Thankful for how God uses those of us in the midst of this battle to encourage each other.
Bekah, I know Titus’s grandparents from college days, and I’ve been asked to pray for Titus. I have watched him grow up on facebook and I have to say Titus’s smiles have always made me smile. Titus may not know that his life is not normal, but he knows he is loved and loved well, and this is his life now. It’s a dark journey you all are on, but you are choosing to follow God to light your paths. God bless you all.
Your words sharing Titus with us are touching lives ~
Thank you so much!!
Titus is adorable! Titus will accomplish what God’s plan for his life is. ……and God knew the brave Mommie and Daddy that would be able to help him do that. Thank you for allowing us to walk this journey with you. ……
Thank you so much, and thank YOU for walking this journey with us!
I believe as Titus sees this world less, he will see God more.
It’s just like God to show up big in the places we feel are the worst scenarios… like the ability to see more of him in the face of such physical illness and handicap. Thank you for this!
You are a AWESOME mom,Titus is so cute! Thank you for the update. Praying for you all😇
Aww, thank you so much!
What a wonderful perspective. Enjoy what you are given. God is still in control. This is the day the Lord has made, let us rejoice and be glad in it.
Bekha,
Your motherhood is true and pure as God intended. I continue to learn from you, things I could not otherwise know. Like a sheet with a great musical peace laid out upon it, your journey has a been carefully penned out. It has a beat, stops, timing crescendos and decrescendos. The Master Composer is woven all thru the melody as He seems to breathe across the strings ever so consoling the breaking of your precious heart. May you know from this onlooking, praying mother, your precious boys are touched by this LPVE and touching in turn MANY lives you do not even know. God bless you Bekha.
This is beautiful Mary! Thank you for this! So encouraged by you!
I understand your “new eyes” approach and I am praying for all of you.
Love
Judy
You have the most beautiful spirit. I don’t know you, but I feel as if you are a close friend. Praying for Titus and all of you and I am inspired by your words. Much love.
Thank you so much, Cayla! You are so sweet and I appreciate, in a huge way, your prayers!