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 3^rd, 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.”

 

I asked my husband to pick up a package of Depends for Sarah when he was at the store and he gave me this horrified look.  I told him, “Look, no one is going to think they are for you!  How do you think I feel carrying the economy size package of ‘Depends for Women’ around the store?”

The smile on David’s face showed me I got him on that one and he agreed to pick up the package.  Wise man!

It reminded me of the time a few weeks prior that I was at the store gathering food for our ‘Pig Out Day.’  We have ‘Pig Out Day’ for major sporting events, like Bowl games or the Super bowl.  I buy a variety of appetizers and snacks and just set them out on the kitchen island on the day of the game(s).  It is a free-for-all day and the kids say ‘Pig Out Day’ is one of their favorite family traditions.  Some families have rich and beautiful traditions, such as being married with a Bible that has been in the family for five generations or each Thanksgiving eating a pie that was great grandma’s recipe; for us it is a couple bags of chips and a deli tray. To each their own!

I was in the checkout lane at the grocery store and the man behind me in line watched me as I put shrimp, meat and cheese trays on the conveyor belt.  He made a comment that I must be having a party.  I smiled and nodded.  He saw the veggie and fruit trays and bags of chips and he joked about coming over to my house to eat.  I explained to him ‘Pig Out Day’, but was trying to keep the small talk to a minimum because I knew what I had hidden in my cart.  I was embarrassed, but it got to the point that I had no choice.  He continued to make comments on the items in my grocery cart, until that is….I took a deep breath and with two hands pulled out the economy sized package of Depends for Women with a huge sticker on the package announcing “Now available in Soft Peach!” color.  He looked at the package, looked at me, and then turned around and didn’t speak to me for the rest of the transaction.  Maybe I should have pulled the package out sooner!  I felt like pointing to the package of Depends and saying to him, “Why miss a moment of the game?”

Ahh…having an autistic child can really humble you!

It’s humbling. It’s embarrassing.  I had no problem buying diapers or pull-ups because no one would think they are for me.  Yet, now I feel like saying loudly as I carry the enormous package of Depends throughout the store, “These are for my autistic daughter.” or “My daughter really loves these in this new soft peach color!”  I look around to see if I recognize anyone because I am sure this will be the one time I run into someone I haven’t seen in years.  It is a pride issue.  I care more about what others might think.  So what?  There are worst things in the world and tougher battles that people are facing than incontinence issues.

I Peter 5:5, “God opposes the proud, but gives grace to the humble.”

Pride is an inward focus of making sure to promote oneself while a humble spirit is an outward focus of servitude.  When you are humble you are broken down, all ego is laid to rest.  You are open and willing to serve and maybe that is why the Lord gives grace to humble.  You are finally ready to receive His grace.  In my pride, I am too rigid and stiff necked, but once I am humbled there is softness in my soul and a pouring out of oneself to be able to be filled with His grace instead.  Grace to do the embarrassing, grace to do the uncomfortable, grace to go beyond myself and be stretched more than I thought possible, but do out of love.  Grace means unmerited favor.  God gives us unmerited favor, HIS unmerited favor to do the difficult and challenging things we have placed in our lives right now.  He knows that on our own we can’t, so He equips us with His grace to firm up our feeble legs and steady our steps to do what He has called us to do.

God’s grace!  I’ll take that in the economy size any day!

“Brr! It’s too cold! Brr!” – this is the phrase that Sarah says almost every morning as I give her a shower.  What is funny is that she is actually trying to say the water is too hot for her.  Our hot water heater is very temperamental and it takes a while to get the perfect temperature for Sarah.  Usually, I turn the hot water dial too much for her liking and she blurts, “Brr!  It’s too cold! Brr!” and I tell her, “No, Sarah, it’s too hot! Ouch!” but she never understands that.  Thankfully, I know better when she says her phrase and I turn down the hot water dial, turn up the cold and make it the perfect temperature for Sarah.

I know better.  This is not just limited to decoding Sarah-isms.  Sometimes when I get down from the heaviness of autism, I throw myself a pity party.  I wonder why God has allowed autism in my family and I take on the role of party planner, except I am the sole attendee at the party (I always win at the party games!).  I break up the pity party by reminding myself of His promises and recalling His continued faithfulness to me because….I know better.

I love II Timothy 2:13, “..if we are faithless (guilty of that at times!), He will remain faithful, for He cannot disown Himself.”  He is faithful; it is His very nature.  Just like my freckles that I couldn’t remove even if I tried because they make up who I am.  For God, He is the very definition of the word ‘faithful’.  He couldn’t stop caring, loving and being here in the midst of this because it is who He is.  I remind myself of these truths because… I know better.

So why I don’t understand, just like Sarah never seems to understand that I want her to tell me the water is too hot, I know my loving Heavenly Father knows what is better for me.  He is at work in our lives and in Sarah’s and while I only have this tiny piece of my life that I can see right now, He knows better.  In fact, I can say with tears in my eyes, HE KNOWS BEST and I continue to walk (okay, let’s be honest, sometimes ‘flat on my face’ belly crawl) in faith on this autism journey.

Isaiah 55:8, “For My thoughts are not your thoughts, neither are your ways My ways, declares the LORD.”