Navigating a New Normal
Updated: Mar 13, 2019
Grappling with our emotions and seeing life from a new perspective in the weeks following Brooks's SMARD diagnosis.
Two days before Brooks was born I received this Bible verse in my YouVersion Bible app:
Jeremiah 1:5- Before I formed you in the womb I knew you, and before you were born I consecrated you; I appointed you a prophet to the nations.
The very next day, I received another verse....
1 Peter 5:7- ....casting all your anxieties on Him, because He cares for you.
For me, the amount of rest and reassurance I felt the morning he was born was amazing. I knew God had spoken to me about my boy. Little did I know that He was calling me to REALLY trust him in the months to come.
It's amazing how when things don't automatically go our way, all the negative and useless emotions begin to surface, trying to lie to us and convince us that they are the truth. It's as if we have this innate entitlement that all of our "ducks have to be in a row" or else something is wrong and God is mad at us or something. Silliness. Silliness and lies. In reality, no one has their ducks in a row! If you think about it, what a tragedy it would be for everyone to have everything go right for them all the time...it sounds foolish when we put it that way, yet this is the silent expectation some of us have about life, including myself.
When our son was initially diagnosed with SMARD, I was nervous. It was the great unknown. A rare genetic disease that affects about 100 people worldwide??? Wow...what do we do with this? How did this happen? Why did this happen? You know, all those useless yet normal questions that pop into our heads anytime something "wrong" happens. After the initial shock, I began to remember what God had spoken to me about him.....
He knew my boy before he was born and that I was not to be afraid. He has a purpose and His plans always prevail regardless.
Then I began to remember the amazing community of other SMARD families and children we had just connected with....
Then I began to remember how amazing our family is and how they literally have done everything they possibly can to help us....
Then I began to remember the community of doctors and nurses over the last 4 months that have almost become like family to us....
Not to mention all the love from social media, my business associates, friends near and far, etc.....
It's incredible. We are loved. We are going to be OK.
Brooks is literally the happiest 4 month old you'll ever meet. When I read a quote from one of our new friends, Brittany Stineman, founder of the non-profit smashSMARD, it totally gripped my heart and mind. She said "How can I sit and cry about my son's disease while he is smiling himself to sleep every night?"
And there it is. The key to life itself...Perspective.
Though the future remains uncertain, here's what I CAN tell you about the Howell family:
- We WILL be happy
- We WILL praise God in all circumstances
- We WILL raise children who understand they were created for destiny and purpose and have amazing value
- My wife and I WILL have a marriage that is full of love, passion and respect for one another
Our life has been beautifully interrupted, and in a weird way I feel grateful for that. We have purpose and destiny to fulfill. We rest in God. We move forward.
And in the meantime, we search for a cure! There's promising research coming down the pipe that you can read about on the smashSMARD website. However, whatever happens, we will continue in faith and love and know that God keeps us and knows us intimately.
Brooks has greatness hovering over his life. How do I know? Well, God told me! And I will do everything in my power as his Dad to facilitate that. You can be certain about that.