Dear SLOS

Dear Smith-Lemli-Opitz,

When the dr. sat me down and told me “Your daughter has Smith-Lemli-Opitz”, I was shocked.  We’d been in the NICU one week.  I’d barely recovered from my c-section and I was incredibly unprepared for a NICU stay, since I had two kids at home and a husband who couldn’t drive.  When I looked at my baby, I didn’t see the issues that made the drs in the NICU tell me that my baby maybe would never do anything. I just saw a little preemie baby; a girl who was much loved, wanted, and soft. I certainly didn’t see the ‘funny eyes’ that my husband had seen, and then, much to my chagrin, had brought to the nurse’s attention.  My husband had called me and told me the drs. wanted to test for you, SLOS, but I wasn’t hearing it.  I distinctly remember telling Tim, “I’ll deal with it” and laughing you off. When I agreed to let them test, I was completely convinced it was a waste of time. But then the test was positive.

I had at least heard of you, Smith-Lemli-Opitz Syndrome, since my niece has SLOS, but I never expected you to touch my children. I didn’t expect to learn the world of special needs, that of tube feedings and bath chairs and sensory needs and immunodeficiencies and AAC devices.

I cried the day you came into my family.  I think I would have held it together, but my dad showed up right as I was getting the news, and his tender hug broke down all my tough walls, and I cried as I told him.

I was lost that day.  You stole the child I thought I was getting; and the child I thought I was meant to have disappeared before my eyes.  You took so many possibilities, and you took them right away.  You didn’t give me time to adjust before hitting me with everything.  I read things online and I saw pictures that scared me.  And sure enough, my very tall three year old can’t walk yet and she can’t talk much either.  You prevented her from sitting up on time and from being a good sleeper.  The sleeping is what I dislike most about you, SLOS.  You took the ability to feel comfortable at other people’s houses, because I can’t put Ilse on the floor due to her immunodeficiency.  You took our ability to feed her normally.  You took her future wedding.  

But as time has gone by, I’ve learned about you, SLOS, come to peace with you, and dare I say it?  I’ve even become a little thankful to God for you. While it’s hard to know exactly how much you’ve affected my daughter-- how much is her normal personality and her normal looks versus how much is the syndrome, I like to think that a lot of Ilse is credited to you. You gave her the soft little body that I love to hold.  A healthy child would be more muscular and long ago would have grown out of wanting to be cuddled by mommy.  You gave her the mouth that turns down on the sides and the little pug nose.  You gave her the light red birthmark on her nose and the tiny toes that are slightly webbed.  You gave her the bird like hands that pat me ever so gently.  You gave her the sweet, childlike personality that won’t ever grow up.  You gave her the dancing wobble when she stands and her complete need for me. Even her disturbed sleep cycles have their good side, because holding my sweet daughter in the nighttime hours while we sit softly in her room is one of my favorite ways to spend time with her.  

Without you, SLOS, I never would have helped start a nonprofit, JourneyFEST, to help other special needs families not feel alone.  Without you, I’d still look down on parents who let their child with special needs be the center of attention.  You made me a better person. You made me a better mom.  

You’ve ensured that as long as my daughter is alive, she’ll need me-- I who was infertile for seven years and longed for the love only a child can give.  You’ve given me happiness and entertainment for my old age. You’ve brightened our family with the Joy that is Ilse Joy.  Even though you came to destroy us, God used you to make us stronger. I thank you for that, Smith-Lemli-Opitz. I thank you for that.

Sincerely,

Emily Joy Minich