The essential purpose of this post and this blog site is threefold:
- To leverage the power of the interwebs to bring awareness to a broader audience about an extremely rare disease (ADSL) and hopefully provide an opportunity for connection to those in a similar situation;
- To provide a forum for our friends and family, who we love so dearly but don’t see often, to keep up with our sweet Willa’s progress in managing our new reality with a rare disorder; and lastly
- To share some of the lessons we learn along this journey about life, about suffering, about joy, about love and what is real.
Life-Altering News
Those that know me know that I’m a relatively curious individual, both intellectually and spiritually alike. Over the past few years, I have spent somewhat of a shameful amount of time working on myself in a number of ways. I ran a couple of marathons, did a handful of triathlons, joined the crossfit movement, etc. I started reading. A lot. And listening to podcasts and audiobooks even more. I plowed through every bit of content from Tim Ferris (Tools of Titans is a must read by the way) and his friends. Full disclosure: I was a bit of a Ferris junky there for a while. I began approaching mindfulness through a regular practice of meditation. I developed a morning routine with a “priming” exercise at the recommendation of the great Tony Robbins by inviting gratitude, the presence of God, and focus to my day. I was journaling regularly with a sprinkle of daily affirmations like my friend (and I use that term loosely here) Scott Adams suggests in How to Fail at Almost Everything and Still Win Big. I even followed Debbie McMillan’s advice on How to Design a Life by writing a descriptive essay about a-day-in-my-life 10 years from now. Why? Because writing things like this down works like magic in bringing them to fruition. So I confess–I have been a bit obsessive about personal development.
At the same time, my career has thrived as well. I have spent the last several years working as in-house counsel for a Fortune 200 company. During that time, I got promoted. Twice. Labeled a top performer. And offered an opportunity to move out of the legal group and into the business to lead a couple of important business functions.
I had a beautiful wife (and still do) who is smart and full of life, and two incredible miracles in my children, Rowe and Willa. As we say in the south, I am truly blessed.
Looking back over the last many years, it has almost been too good to be true, frankly. It’s as though I’ve been in the driver’s seat of life. Complete control. Owning it. Sure I have been far from perfect in more ways than I care to discuss here (for example, by being consumed by work and embarrassingly selfish at times). But those were mere side effects to doing pretty good at life.
And then, like a dark thunder head eclipsing the sun, everything changed. And rain it did. I came home for lunch on a Monday, which was unusual, but my parents were in town visiting, so. Sarah was crying. She had just gotten off the phone with the doctor. Willa’s geneticist. We had a diagnosis.
A diagnosis is good right? This is what we had been hoping and praying for for more than a year now. We knew something wasn’t right with our sweet Willa before she reached six months old. We didn’t think she could see at first. She didn’t make eye contact. Then she couldn’t stabilize her self well enough to sit up on her own. She didn’t rollover. She didn’t crawl. She couldn’t bring food to her mouth. She was drastically delayed developmentally. We saw every specialist imaginable and kept ruling things out. One by one.
So here we were. One year later. A diagnosis. My heart pounded on my chest like a hammer.
ADSL. Adenolysuccinate Lyase. That’s it.
It’s a rare genetic disorder, a metabolic disease. There have been fewer than 100 cases ever in the world. Most of those are not in the US. There are no proven cures, treatments, or therapies. There is a spectrum of severity. However, it’s too early to tell where Willa falls on that spectrum. In the worst cases, it’s life threatening. In other cases, typical life challenges include psychomotor retardation, chronic seizures, and autistic behavior. You can read more about ADSL here.
Suddenly every abnormality we ever questioned about Willa’s development and behavior made sense. Then nothing made sense. I consider myself an optimistic person, but this was too much. We spent the following several weeks trying to come to terms. Trying to accept the devastating news as real. Fixating on pain and loss. For Willa. For ourselves. For her brother, Rowe, who’s too young to understand.
I write about this as if these are some distant emotions that have passed us by. That is misleading. This is still very fresh. And we are still very much in the ditch. This news hit us just over four weeks ago. It is, without a doubt, an ongoing effort in acceptance.
To add to the wreckage, Sarah is pregnant. Due to the genetic nature of this disease, there is a 25% chance that the new baby will experience ADSL as well.
I don’t know what to say really. I cannot explain why these things happen to people. I won’t try either. It’s simply devastating. But I will attempt to learn something from it. If I’m being honest, it’s the only way I know how to deal with such realities.
The Lesson You Don’t Want to Learn
The simple lesson in all of this is, don’t wait until tragedy hits your life like a Mack truck to reevaluate everything. I am a testament of what that approach looks like. Trust me when I tell you that it is not pleasant.
So do it now. Re-evaluate everything. And I mean everything. Who. What. Where. When. How. All aspects. But be careful. If you are like me, even if you are brave enough to engage in an intentional exercise like this, you will overlook things. And what might those things have in common? Again, if you are like me, it will be the things over which you believe (subconsciously or otherwise) that you have the most control. But these areas of perceived control are the most important pieces of our lives to consider, or reconsider rather.
If you care to take something away from Willa’s story and our experience with a rare disease, do this reevaluation exercise. And do it with pen and paper in hand. In my experience, there is something almost magical (seriously) about writing these kinds of things down.
Try listing exhaustively everything in your life that has significance, value, or that gives you meaning (large or small), and particularly anything in which you find security or a sense of control. It could be your home, your car(s), your job, the relationship with your spouse, kids, or friend, your health, their health, etc. What if they were gone? Maybe just one of them or perhaps all of them.
What would you do differently? Where do you spend more of your time? Where do you spend less? What do you appreciate more? What do you appreciate less? Who do you lean on? And what does that relationship look like today? Have you invested in it? Do you find yourself suddenly leaning on a God or a friend that you have neglected? How would you reshape your life? What obstacles are preventing you from achieving those things tomorrow?
I would suggest you write the answers to these questions with as much specificity and clarity as you can muster. If taking the steps to make these changes in your life starting tomorrow seems too daunting or complicated (which I would argue is really not the case; that’s just your mind justifying your current state), you can at least do this. Put your list and your answers to the questions above on a page, in a book. Put that book on a shelf that you pass by relatively frequently. And pick it up and read it at least once per year. I’m working through this now and would ask you to join,
This is not so dissimilar from a process called “Fear Setting”, which Tim Ferris recommends. This is the opposite of goal setting. It teaches us to recognize that sometimes the outcomes of our greatest fears are not so scary after all. So therefore go conquer them now is sort of the point. Read more about fear-setting here.
I feel compelled to point out that this is my first ever attempt to write publicly, particularly about such personal things. My tendency is to lean on privacy before publicity. Honestly, the vulnerability in something like this is excruciating. But my hope is that such vulnerability provides opportunity for connection and learning.
For Willa.
Lessons Learned from a Brain Injured Child 
Mark, this was beautifully written. My heart and prayers go out to you, your family, and especially Willa. I know no words will ever bring true description to what you and your family are feeling and attempting to process but take comfort in knowing that it’s all in God’s plan. It is amazing how much our purpose in life changes once we have children. How they experience and adapt to life changes our world (our perspective) daily. The Wilson family I grew up with and loved was full of fighters and I know Willa will be the same!
Thank you for challenging me this morning. Your words were the wake up call I so desparately needed and have been subconsciously searching for.
I truly send my best to you and your family and will be keeping you all in my thoughts and prayers. Thank you for being that “open book” this morning. It (you) has made a difference.
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Carter – I cannot adequately express my gratitude for your kind words. They are immensely encouraging. Thank you. I hope you are well, friend.
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My thoughts and prayers are with you Mark and Sarah as well as your family. Thank you for making me open my eyes and heart as no one has done in a long time. Your heart felt blog is such an inspiration to me and I hope more can read and share with you and Sarah as you travel this road called life. I know God will bless and comfort your family as only He can. Your passion for living a life for God is very evident.
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Mark, Thank you for opening your heart in these words. Coach Smith and I certainly prefer for all “our players” to stay close to home so we can keep up with their lives easier, but we know that some do not. For those that do not, we often feel badly that we do not know enough about their lives to be able to remain in an encourager role in their lives. We certainly feel this way about you and your current situation. Please know that we are with you in thought and in prayer as you walk this journey. Regina and Ernie Smith
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Thank you for responding, Regina. I cannot stress to you how great it is to hear from folks like you and coach Smith. I hope you are so well.
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Mark, Thank you. I am so blessed and proud to call you son-in-love. I know you and Sarah are the perfect parents for my sweet Willa Jane.
I love you dearly. Jane
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Jane, Mark, Sarah and Family,
Thank you Mark for sharing your heart with us. I am praying for Willa and all of you daily. Love to all, Monty
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Mark, you, Sarah, Rowe and Willa are in our deep deep prayers. I have No idea what you are going through but my heart breaks for all of you..and god also know that the Lord does know. May he comfort your heart. Love you guys and hope to see you soon.
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Wow, I have prayed and wondered how Willa was doing for some time. I live all of my nieces and nephews but that little girl had a special place in my heart from day one I met her. She has a very loving heart and personality. Is it funny how God knows what we need before we know ourselves. God knew that Willa was a special child and need to be given to special parents who could live and care for her. Again I say WOW… I know what every the future holds for all of you… God has got this..and believe it to and all will work out for you all and him… Though all that we are and do. Do it to HIS glory. I pray for you all…and give my sweet niece a kiss from her Aunt Renee😘
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Thanks for that Mark. My prayers are for Willa, You, Sarah and Rowe. So glad God placed you all in my life. May God continue to bless you all
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Beautifully written. Thinking of you all as you navigate this journey. Willa is so lucky to have you and Sarah as her parents.
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Mark, you have shared with us your heart in every word, so beautifully written. Lifting you, Sarah, Rowe, and your precious Willa in daily guidance and sweet prayer. Bubba and I have a grandson with Autism, so we truly see the daily struggles that parents and siblings have with precious special needs children, Love to you all!
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You are all precious to me and my family. Thank you for allowing us to walk alongside you in this journey through this forum.
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Hi Mark, my name is Kari. My son was diagnosed with ADSL two years ago. Your words are beautifully real. Thank you for putting into words, something so many of us have experienced. I have reached out to your wife on Facebook and hope to connect with your family soon.
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Kari – Thank you for reaching out. Sarah has enjoyed chatting with you and learning from you over the past couple of days. I am grateful for the connection. I hope we can stay in touch regularly. If there’s anything we can do to support you, please let us know. We all need it.
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Mark,
I am the grandfather of Kari Browns son with the same rare disorder. And I thank you profusely for helping raise awareness about ADSL, and doing it in such a way that it will help many others with other challenges they may be facing at the same time it helps you and Sarah, and Rowe and Willa. I do urge you and your wife to respond to my daughter Kari as she and her husband have been dealing with this for some time and they’ve discovered a lot that can be of help to the family of one with ADSL. We send our love and prayers from our family to yours and I’m sure you will face this challenge with love and courage. We wish your family all the best and most of all love and happiness.
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Darrell – Thank you for reaching out. My wife, Sarah, and Kari have connected, and I am so glad for it. It has been so helpful already. I mentioned this to Kari, but if there is anything we can do to support your family, please let us know.
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Mark and Sarah, I admire your approach on Willa’s diagnosis. You took the bull by the horn and found a diagnosis. That in itself is hard for many parents. She is very lucky to have you both as parents. In my opinion, the only reevaluation is learning a new kind of “normal”. Rejoice in your new acceptance, humbleness, and simplicity as these will carry you far on your journey. ∼ MamaBecky
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Hi Mark,
Kari shared your wonderfully written piece & I felt a lot of emotions reading it. I am the mother of a 13yr old with ADSL. We live in Ireland. I remember those early days so clearly. 13 years on & we still struggle but focus on making the best life possible for our boy… he’s brings so much joy. Sending you & your family best wishes & strength. Avril
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Mark, my best thoughts and prayer are with you and Sarah as you journey through life with your precious family. Knowing Sarah, and Jan e and Jack- and after reading your words, I realize Willa will be in the best of care. May the Lord hold all close in his arms.
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Beautifully written! I’ve only know your wife as a little girl but have kept up with you knowing you needed prayer and prayer you will get!!?! Read ps 91 daily ALOUD and make it personal! I’m doing that for you as well!!! You are a strong young man and I admire your openess! Your family is precious!!!
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Oh no Mark & Sarah,
I had no info on this & just read your words so marvelously & lovingly written !
I pray God will bless your family with added strength to give positive energy & encouragement for Willa’s life 😘
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My goodness, wow…I’m just now reading this first blog , after reading Sarah’s addition to the blog this morning, and thinking I wasn’t comprehending what I had read. I am truly touched by yours and Sarah’s willingness to share your family’s journey through this. My heart aches for you, for my friend, sweet Sarah , for that rambunctious, Rowe and for that precious bundle of plump cherub cheeks and mile wide smiles, Willa. Through the tears, a pile of used Kleenex, a cup of coffee, now turned cold, I am praying for you both, the kids, ya’lls parents, the doctors, nurses etc. If I read it correctly, did I see that baby #3 is bebopping and growing along ? Congratulations you two, and prayers for the health of both Momma Sarah and Wee#3. You’re a courageous, brave, strong, caring, loving, kind and smart Christian man…you’re a provider and the protector/keeper of your family as a husband and father; your strengh, honesty, love, support, caring heart, kind soul, integrity, genuine sincerity and bravery to share with us your lives so openly in a blog while dealing with these fears, unknowns, what ifs, etc with the news of Willa’s diagnosis is admirable and commendable. God is moving through you, through the blog, your marriage , your journey and touching all of our hearts , our souls with lessons of wisdom, love, education, sadness, as well as the laughter through the tears….it truly shows,. I’m grabbing pen and paper to do your suggested exercises. We are all here to support y’all in whatever way you may need. Many blessings to you and your family. Seriously, if there is anything you or Sarah need please do not hesitate to contact me and ask me. I am way the heck up here in Kentucky however, I have more free time than ever before , no mortgage and that enables me to offer my help. From prayers ( which I will be doing already) to….whatever A to Z just ask, please!
Take care, God Bless and BIG LOVE to yall! -Roger Tison
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