Matthew 7:7-8 “Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. For everyone who asks receives; the one who seeks finds; and to the one who knocks, the door will be opened.”
Against all odds and uncertainties, HOPE is in our everyday lives. HOPE flourishes , succeeded, believes and is more than alive! I have worked hard to look for signs of HOPE, and signs HOPE I have found.
After a long hiatus from in person church; we walked in two Sunday’s ago to see the “HOPE Revealed” series name on the screen. I felt tears come to my eyes as I realized I was where I was suppose to be.
After learning how to sign “Hope” in sign language… Pastor Susan Kent shared the story of the angel who appeared to Zachariah regarding his long-time prayer to the Lord. A prayer he prayed for years without seeing action, a prayer he was giving up on.
I related immediately. I would lie to you if I didn’t say doubt rises more in the pit of my stomach than ever before. After working on a treatment for Will for nearly 12 years and his 18th birthday fast approaching, I’m uncomfortable and in a constant state of uncertainty. Not because I don’t believe in our research efforts, on the contrary… our science is excellent. But more because, finding a treatment is much harder and taking much longer than I could ever had anticipated. Road blocks at this point are particularly gut wrenching and COVID has definitely slowed the whole process.
My immediate feeling every morning, when I wake up in the wee hours of the morning, are overwhelming full of hope. My mother blessed me with a positive, glass half-full attitude. It is my default. And most, days no matter the circumstances, I reset most mornings.
But lately, my true reality creeps in and my fears manifest.
I am on FB group for families dealing with Batten, and my heart breaks with and for them. I remember being a young batten mom and not knowing what to expect as Will aged. Now, we are in the middle… a foot in the world of typical and a foot in the world of special needs. There is very few people who can relate… it can be a lonely place; looking back at what was, and looking ahead to what could be or will be without treatment. My heart bears the burden of the weight of mind’s wandering and while I should be rejoicing in the present; fear is ugly, overbearing and all encompassing. But, then I think of how far our efforts have come and how HOPE has guided our every move. It fuels us and I believe it is the reason Will is who he is.
Pastor Susan finished the sermon with a challenge for us that week: to share a sign of Hope. I prayed for a sign. A huge, big, light flashing sign that would knock me off my feet, fill my heart and re-guide me as I enter the new year. I decided to be still and wait.
The next day, I took Will for our daily walk with his dog Buster. Waking the pathway of the closed golf course by our house granted Will the opportunity to walk without a sighted guide (my arm) for a few steps at a time. I enjoyed watching him walk, the beautiful clear blue skies and sun shining on his face. He is so happy, so content all the time. I snapped a few pics to remember the moment and while I flipped through the pics… I was stopped in my tracks. There he was. Walking, strong and tall, unassisted, down the cart path, just a boy and his dog. I don’t know if it is the way the sun was shining or the look on Will’s face; but this was my sign of HOPE. This day, this moment was my sign. I looked at him so differently than I had in years.
I don’t see a blind boy; I don’t see a terminal illness, no batten disease, no seizures. Just a really amazing young man, so appropriately named Will.
When I think of what “healthy, non- Batten” affected Will, as an almost 18 year old boy, would look like…. this is exactly how I would picture him. I don’t think that way often. My heart won’t allow me to think of what might have been… but this year, the year that would be his high school graduation year, fear had allowed more thoughts of “what if” than I would like.
But this was different. This wasn’t my mind showing me all he could be. This was a photo, showing me all that he IS, right now, in the present. The Lord blessed me with a glimpse of what might have been and what still could possibly be, on a simple dog walk. He showed me a beautiful, breathtaking sign.
I believe the sign tells me to: continue believing in the impossible; to continue my 12 year long prayer; to believe in my heart he has heard me praying and will continue to listen; to encourage me to cast away fear and share the light; to look differently at my current situation. When I thought deeply, the signs are surrounding us. They are everywhere that I allow my eyes and my heart to receive them.
As we close 2020 and begin 2021, our family, foundation and team here at HOPE thanks you for your incredible support of Will and our research efforts for juvenile Batten disease. Will is a product of your prayers and we could not be more grateful for each of you!
Blessings for an amazing 2021!
