Yesterday, I pushed a cart around the store, grabbed coffee with friends, indulged in pizza with my husband while overlooking the blindingly sparkling Pacific, took my recyclables to their new home in big blue bins, picked my daughter up from school–that yesterday…in that span of 24 hours, two mamas lost their boys.
I got home from the day, checked my Facebook feed, and came across the news. This creeping, insidious, relentless disease. Those boys’ lives were interrupted again and again by MPS until the end. It is not just news to me, for my older daughter, Anni, has the same disease (a mucopolysaccharide disease also known as Sanfilippo syndrome). It is degenerative meaning that all skills that she has acquired in her short 6 years of life will slowly be stripped from her. In all averages for life expectancy for her type, she has already lived 1/3 of her life.
So, why do I keep up with other MPS families? Doesn’t it make it harder on me? To see the progression of that disease in a stage that is later than Anni’s?
Yes.
Some days feel overwhelming enough with my own problems and I don’t feel like sharing in the grief or hardship of others. I want to very carefully wrap a cocoon around my heart and block out their hurt, not let it touch me too closely.
But.
I won’t. I won’t avoid living in the hard places. I won’t avoid the sorrow of others, or be removed from their stories.
“For he grew up before him like a young plant, and like a root out of dry ground; he had no form or majesty that we should look at him, and no beauty that we should desire him. He was despised and rejected by men; a man of sorrows, and acquainted with grief; and as one from whom men hide their faces he was despised, and we esteemed him not. Surely he has borne our griefs and carried our sorrows; yet we esteemed him stricken, smitten by God, and afflicted. But he was pierced for our transgressions; he was crushed for our iniquities; upon him was the chastisement that brought us peace, and with his wounds we are healed.” Isaiah 53:2-5
Heart-wrenching description of Jesus: a man acquainted with grief. He not only knew His own, but He bore ours. He knew sorrow, but also carried ours. To become more like Christ is to get right in the mess of other’s lives. These beautiful heart-wrenching descriptions are just some of the reasons it’s so easy to love Him.
There is a balance I find very difficult to maintain. How do I get in there emotionally without borrowing their sorrow for myself? It is a close grief to share with others, when I know that eventually that grief will be ours firsthand. God is continuing to teach me that He gives grace to handle the present moments. To be worried about how things are going to go in the future is to be asking for strength to do something I’m not doing yet. I don’t want to sorrow-borrow myself out of loving others to the utmost.
“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
Morgan and her family of four live on the Oregon coast. She stays at home to care for her two daughters, Anni (6) and Emma (3). Anni has a rare genetic disorder called MPS IIIa that is degenerative and dramatically life-shortening. Morgan and Ryan are continuously learning how to lean on God for comfort, wisdom and peace. They have challenges regarding health decisions for Anni, and how to teach Emma to live life with a disabled sister. In all things, they are confident that this life, however long or short it is, is a small portion of their eternal relationship with Jesus. Visit Morgan’s blog at morganmotz.blogspot.com where she updates regularly with updates on Anni’s condition, lessons learned about being a wife, mother to two very different children, and, most importantly, a woman who desperately needs Jesus.
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