In honor of school picture day tomorrow……
When Sarah was three years old her therapists worked diligently with her teaching her how to use scissors to work on her fine motor skills. Now I look back and think, “What have we done?”
It is a rite of passage for many kids to cut their (or their siblings’) hair. I have heard horror stories of one pigtail being cut off and siblings giving each other haircuts. Sarah has made this an art form. A female Edward Scissorhands, Sarah cuts her hair in some fashion every 6 months or so; cut off her bangs here, a chunk of hair from the back there. When Sarah started scalping all her Barbie dolls’ hair, we hid every pair of scissors in the house. I feared she would give herself a matching haircut like her Barbie dolls and cut off all her hair.
Easter Break, April 3rd, 2013: Sarah comes downstairs from being in her room where she had been coloring and ALL of her hair is gone. Not just a little, but her whole head down to the scalp in some spots. I screamed, “Sarah! Where’s your hair?” Sarah repeated me giggling, “Where’s your hair?” I ran upstairs to her room. No scissors. I looked around frantically to where all her hair could have gone. “Sarah, where is your hair?!?” Sarah followed me upstairs and was elated by my reaction. She began clapping her hands and saying, “Where’s your hair? Where’s your hair?”
I ran into my bedroom and heard a low hum. I opened up my closet door and saw the small battery operated Wahl groomer/shaver that I use to cut the boys’ sideburns. I kept it high on the closet shelf in a case, but now it is out of its case, turned on and sitting on a pile of ribbons of brown hair on the floor. My heart sank. I found myself kneeling on the floor with her hair in my hands. Tears filled my eyes as I cried out to God, “Why does she do these things?!”
It was my worst case scenario coming true; my daughter is Sinead O’Connor, or for a younger reference, Brittany Spears. Either way, it wasn’t a comforting reality.
What could I do? I can’t paste her hair back on her head. I sat on the closet floor in shock. Sarah was outside the door giggling and very pleased with herself. Her siblings joined the pursuit of helping me in the search for her hair, a late Easter egg hunt of sorts gone terribly awry, and were taking turns rubbing her head in disbelief. I can’t change what she has done. I can’t fix this. As my Mom says, “It is what it is.” I walked out of the closet and tried to show no emotion. Sarah loved my first reactions, so I stayed calm and told her we don’t do this. When Sarah saw I wasn’t fazed by this anymore, she calmed down and went back to her room to color, muttering to herself, “We don’t cut hair!”
I went back to the closet and threw away her hair and hid the Wahl razor in a place she would never find it. As I composed myself again, I rationalized it is just hair and it will grow back. While I feared this would happen, it did, and guess what? Life goes on. What I thought would be an earth shattering event is just another “Sarah story” (one of so many!) and not as devastating as I once believed it could be. Unfortunately, I do find myself singing Sinead O’Connor’s song, “Nothing Compares to You”, when I wash her hair now, even months later. I can’t help it.
It has been a long journey and sometimes a slow realization that if I believe that God is in control and He is sovereign that it will reflect in my attitude when things don’t go according to my plans and desires. I say I follow Christ, but it is easier when the path looks good, pleasant and I agree with it. It is a refining and true test of my faith, when I continue to follow Him when the path looks hard, tough and not according to my plans for my life. In I Corinthians 15:20, the first two words of the verse are ‘But Christ’. I underlined them in my Bible because truly those two words are the answer to any worst case scenario I can think of in my life. “What if (fill in the blank)? But Christ continues to provide, sustain, and is faithful, with me, in control, has a purpose, etc.” ‘But Christ’ is the trump card to all my ‘what if’s’ and anything I do face. In fact, my “worst case scenario” could be the very thing that draws me closer to Him and I would not be the person I am today without it. Hmmm, challenging thought!
Tomorrow is school picture day and schedule pick-up for Sarah. Michigan schools start school after Labor Day. My plan is for her to wear pink to look as feminine as possible. I failed to mention Sarah scalped parts of her hair again, this time with a pair of blunt scissors she found in her school supply box. The photography studio order form says, “Memories-the moments you cherish”. For some reason I don’t think I will look back and say fondly, “Honey, remember when Sarah shaved her head? Good times! Good times!” I don’t know how Sarah will behave tomorrow. What if it is like last year when she had a full-fledged meltdown in line with kicking, hitting, screaming and rolling on the floor? But Christ does know and I know He will be there to get us through another ‘what if’.
I Corinthians 2:9, “No eye has seen, no ear has heard, no mind has conceived what God has prepared for those who love Him.”
Jilly, Jilly,
Prayers are with you and for a patient photographer.
I am riveted by your Sarah stories. Thank you for sharing them. “But Jesus” sings that same song over you, I bet.
Just another reminder how God is good ALL the time, not just when things all line up with how want them to go, or when they turn out how we want them to, when it’s all good and rosy, when the hair hangs in long curls with pink bows attached. Nope. God is good all the time, in messed up plans and when the “pink” is the scalp showing thru’. Love you Jill!
Jill you make me want to be a better person…I will continue to pray for you and the family and if you need anything please let me know.
You have a way of putting everything in perspective. I am learning a lot from you through your stories. Praying for a good picture day. 😀
Jill, your stories continue to nourish my faith. Thank you for the gifts you share born out of pain, sorrow and challenges that I can’t even begin to imagine.
I love ‘But Christ’ is the trump card! That’s it!!! Oh, I see it in a fresh new way and like never before. What a central nugget of truth you presented in visual terms that’s like bells and whistles going off in my head. I remember fond childhood memories of watching my parents play ROOK with their best friends (John & Florence Wright) and ‘Uncle John’ would always accuse my dad of being a cheater and then dramatically throw his cards down in staged protest and the women would crack up and the hilarity would roar on and on until they all settled down over a delicious piece of pie….but the simple truth, that even I as a young child could see, was that winning was all tied up in who held the trump cards and the coveted ROOK card (aka ‘the birdie’) cause THE ROOK trumped ALL! Thank you Jill, by God’s grace I am going to walk through life more visually and mindfully conscious of knowing in every moment and situation that I hold THE ROOK card and that is the total game changer…….But Christ trumps all.
I echo what your mom said. Awesome testimony! I’m sorry you have to go thru such deep valleys. My prayers are with you.
Jill I was so helped and encouraged by your story and your trust in God’s love and understanding.
God has given you more to deal with than most of us will ever know. The roller coaster of emotions, how to understand and respond, and then to trust God. Most marriages can not hold strong with the amount of turmoil you both deal with. Your family is a testimony, and many are watching, as you live out your faith as to how God carries and supports you. These experiences would make a great book, not just the autistic arena, but would touch the hearts of many people going through difficult times.
Thank you all for your encouraging words! So blessed by great friends! She cried and picked her nose, but we managed to get one photo! Thank you so much for praying!!
***Debbie, Gayle is my second cousin. We have two Gail/Gayle Butlers and two Sally Butlers in the family! How fun! 🙂
So glad that Sarah took her picture….last year was a lost cause, I remember. We prayed so much for you this morning, honey. I am sorry that Sarah cried etc. Cameras seem to really upset her.
Thanks Gayle for you insights and stories and that someone gave credit to me. But then Jill had to fess up and I couldn’t take credit after all! Still, loved your story and your teachable spirit.
Gail….Jill’s Mom