When I used to see people wearing “awareness” bands, I always became curious and would try and see what or who they were supporting. It was almost like a tattoo to me in that it seemed trendy and cool. Truthfully, I had never had anyone close to me have anything worthy of getting those bands for, so it never really hit home.
Meet Jarred and Hannah. They are a young couple, who, like many couples their age, decided they were going to have a baby approximately a year and a half ago. Hannah became pregnant, and, like many other couples, they went ahead with visions for what their family was going to look like. We all do it. Whether we realize it or not, we have somewhat of a picture of what we think our lives are going to hold. As the future becomes the present, however, at some point reality and our dreams meet.
Jace McCoy Williford. Their beautiful, loved baby boy. While Hannah and I’s hearts will be connected forever, the only in-person memories I have of Hannah are as my friend Nick’s little sister. When the girls were around 7 months or so, Hannah sent me a facebook message after reading one of my recent blogs on the girls. Her son, Jace, had also been diagnosed with hypotonia. As I have said before, hypotonia tends to not be a diagnosis in itself, as there is almost always a lingering cause. The therapies and doctor’s appointments began for Hannah and Jace, and as someone who had been walking a similar road, I attempted to help them navigate the challenging road of finding a diagnosis. I remember the first time they drew blood from Jace. Hannah and I had been messaging about how sad she was that they were going to have to stick Jace. Just like any parent, no one ever wants to see their child in pain. It is a helpless, horrible feeling.
On April 14th, I received a message from Hannah asking for prayer for Jace. He had a bad respiratory infection and had been admitted for dehydration. The days going forward were nothing shttps://m.youtube.com/watch?v=suIeoR2Wilshort of a nightmare. Jace was diagnosed with SMA type 1, and through a chain of heartbreaking events and the unimaginable, he went to be with Jesus 5 short days later. Now, many of you either know pieces of their story already, or you hear this story or others, and feel sad for the family but never put yourself in their shoes. Believe me, I have been there. I have watched the commercial of the starving children in Africa, and my heart hurt for a second before I was distracted by the next thing in front of me. I have read the blog of the women suffering from cancer, or the family that lost a child to disease or car wreck, and read until it made me uncomfortable; only to find something “happy” to focus on after. I get it. When you go to Africa, however, and that starving child is close enough to touch, you can’t pretend it isn’t real. Once your family has walked through tragedy or suffering, you can no longer look the other way because you know it exists. As we have walked through this undiagnosed journey with the girls, I have had to put myself in the shoes of numerous diagnoses, and have played the stories out over and over again in my head. The girls were also tested for Spinal Muscular Atrophy, and I spent two long weeks picturing what that would mean for our family. While I encourage you to go to http://www.fsma.org in order to learn more about Spinal Muscular Atrophy, the main purpose behind this post is to talk to you about watching our Father walk people through the hards, while also bringing up some reasons on why I think awareness matters.
Back to Hannah. Remember when I told you about the mom who didn’t want to watch her son be stuck by a needle? That same mother looked down into the crib of her baby boy, held his hand, and trusted God to take him back into His loving arms. That same mom continues to walk, some days stumbling, to the cross; knowing that God all too well knows what it is like to sacrifice His Son for a kingdom cause. I have watched Hannah be nothing but brave and faithful during a time that is unfathomable. More importantly, I have watched our God give her strength for whatever the day holds. Do I think she feels excited about this part of His plan? No. Do I think that every day is filled with gratitude and thankfulness toward God for this unexpected story He is writing? Absolutely not. But this I know: God has a hold of her and He is not letting go. He has a hold of you, and He wants to walk with you through all your moments. The ones that make you smile, the ones that make you cry, the ones that you anticipate and the moments you never could have imagined. He is here, friends, in it all.
Those of you who have children that participate in sports teams spend many days at practice or at games. You watch your children excel on the courts, and you watch them mess up. You wear their team colors proudly, and when your children are mentioned, you talk about those accolades. While I know the Willifords would love to say this is what their future holds with Jace, raising awareness for him has become their new banner. You would do the same. You see, raising awareness is sometimes just as much loving those affected and reminding others about their loved ones as it is finding a cure. Yes, if God chooses to present a cure to SMA or other diseases, I know many would be ecstatic. But if He doesn’t, I know they will continue to make others aware of what has now become a part of their family’s story.
The PRAY bracelet is something Hannah sent me a couple months into our friendship, not knowing anything about where either of our journeys were headed. The blue bracelet (that could in no way ever compare to the gorgeous blue eyes baby Jace was given!) also has the verses from Psalms 139 that read,
“For You formed my inward parts; You knitted me together in my mother’s womb. I praise You, for I am fearfully and wonderfully made. Wonderful are Your works, my soul knows it very well.” (verses 13-14).
When I wear this bracelet, it is no longer something I do to be “trendy”. No, it is much, much more. It reminds me to pray for the Willifords, and to pray for the families, too many to count, that walk through the hard, unexpected journeys this side of heaven holds. I have committed to raising awareness for SMA and a couple other diseases, even after we receive a diagnosis for our girls. You see, when you have to imagine what life would look like with a certain diagnosis, your eyes are opened and you cannot look away any longer.
If it has not happened already, someone you love or yourself will be hit with the hard. You will watch family or friends battle the unfathomable, and suddenly, that cause will become worthy. You will want to make others aware, not only to find a cure, but also out of pure honor and affection. I hope to one day (soon!) be able to proudly sport my bracelet for Ally and Bailey Grace as well; to be able to cheer them on and love them through making their challenges known to others. Friends, we do not know what tomorrow holds, but we do know who holds it. His ways are mysterious, but He is always good. And, here is our hope: one day, He promises us this:
“He will wipe away every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away.” (Revelations 21:4).
Furthermore, the incredible thing is this: Yes, He brings the unexpected hards. But, He brings a million good surprises along the way, too. For as many tragedies as their are, both on the news and in our own lives, they are all trumped by the grace and eternal hope we are offered in His Son. His plans for us are more than we could possibly dream up or imagine, and only He can bring beauty from the ashes of brokenness. Beyond that, because of Christ, we can shout triumphantly, “Where, death, is your sting? Where, death is your victory?” (1 Corinthians 15:55). For those of you that wonder why God allows all that He does, there is something to find comfort in. He has overcome it all, and is working it all together for good. He also brings us tinges of this heaven right here on earth: the unexpected friendships, the devotional you needed to read right at that moment, the call or text with just the right words. All is grace.
Praise God! Until then, let’s choose to serve Him and love others well by rejoicing what they rejoice in and grieving what they grieve in. We do not know why He has chosen to write our stories the way He has, but we do know He is wise in it all. Let’s start today. August is SMA awareness month. Won’t you head over to fsma.org and learn more about the disease that affects so many families around you?