Introductions:
So I am happily married with two beautiful daughters. Our first is 3 and a half while our youngest is 21 months.
Our first daughter is healthy and happy, strong and brilliant. Our second girl is happy and miraculous but unfortunately not healthy. Our second daughter, Lumina, has a rare terminal illness called Walker Warburg syndrome.
I like to say she is not normal but she is perfect.
Love is Scary:
She has a very rare form of childhood muscular dystrophy. It results in peculiar brain development, seizures and early onset muscle breakdown.
Most kids her age dont live to three years old.
So when we recieved her diagnosis prenatally we were justifiably terrified. But through that experience I began to really understand the vulberability of love.
You see, after we learned about her health I wanted to shut down, close off, disconnect from my child before she could leave me. My wife and I began considering termination and all our doctors encouraged it.
Love is Worth it:
Fortunately, by God's grace, my wife and I realized that though we were scared closing off wouldnt make us whole again. And that we needed to try to love Lumina despite our fears. We needed to be excited for her life, however long that might be. Then of course if we lost her quickly we would be broken but at least we could say we didnt deny ourselves the chance to know and love her by shutting off early.
It might seem unimagineable to consider closing your heart off from a child but when faced with the mortality of your child you feel completely broken.
So anyways I just wanted to share that the greatest gift Ive ever received is the courage to try and love our lil Lumina. The strength it took to say I dont care if she leaves me Im going to put my heart out for her and hope and pray against all odds for an hour, day, or year, in which to hold and know my baby.
The bible says: "...do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble." Matthew 6:34
This message was, and is, a great anchor for me.
Thank God we risked our hearts. Thank God Lumina was born and still lives and that she despite all prenatal assessment is relatively healthy compared to other kids with her illness. Thank God for our eldest as well and that her health seems excellent.
Thank the Lord for my wife, and that we came together instead of falling apart during the drama, fear and doubt.
We are so grateful for today. We are so glad to have our two daughters, Hazel and Lumina.
Loving Lumina was, and is, really scary, but man is love worth it.
To love at all is to be vulnerable. Love anything and your heart will be wrung and possibly broken. If you want to make sure of keeping it intact you must give it to no one, not even an animal. Wrap it carefully round with hobbies and little luxuries; avoid all entanglements. Lock it up safe in the casket or coffin of your selfishness. But in that casket, safe, dark, motionless, airless, it will change. It will not be broken; it will become unbreakable, impenetrable, irredeemable. To love is to be vulnerable.
C.S. Lewis, The Four Loves
