On Friday, we met with the nurse who works for the new psychiatrist for Sarah.  This psychiatrist specializes in autistic children, while our current one does not (he just has had other autistic patients).  Also our current doctor has recently moved to a further away location, so it confirmed our decision to switch.  Like many things in the autism community there is a wait list.  I called in August.  Friday’s appointment was the intake/ “get to know you” evaluation with the nurse.  Our appointment with the new psychiatrist will be in January 2014, her earliest opening.  So we wait….

I feel like patience is an area I struggle with the most.  I relate with people in the Bible that also had to learn to wait.  Abraham was 75 years old when he received the promise of Isaac, but Isaac was not born until he was 100 years old.  If that was me, with each passing month that turned into years, I would start to doubt myself.  “Did I really hear God right?  Did I imagine this?”  Then there is Joseph.  For two years he waited in prison after the Cupbearer was released, even when he asked the Cupbearer to remember him, to show him kindness and to mention him to Pharaoh so he could be released (Gen 40:14).   I bet the first couple days after the Cupbearer’s release each sound of the dungeon door opening or just hearing a noise from outside world, his heart would beat faster as he hoped it was for his freedom, only to be disappointed.   Then as the months passed with no one coming for him, I bet he felt discouraged and forgotten in that dark place.  Lastly, there is David.  Many years passed from the time he was anointed king to the time he took the throne of Judah, then years later until he took the throne of the entire kingdom.  I think about the years David was an outlaw sleeping on dirt floors of caves when he was hiding from King Saul and I wonder if he ever became impatient or frustrated by his circumstances.

Yet, in all of these men, God was at work and there was a purpose in the waiting.

Genesis 15:1b says, “Do not be afraid, Abram.  I am your shield, your very great reward.” as God’s reassurance to Abraham.  For Joseph, it is Genesis 39:21, “…the Lord was with him (Joseph); He showed him kindness and granted him favor in the eyes of the prison warden.”  Lastly for David, we know he was a man after God’s own heart and when he was anointed with oil “the Spirit of the Lord came upon David in power.” (I Samuel 16:13b).

I think about the time these men waited and how God was with them in the wait.  Each of them grew in character and the time of waiting was preparation for what God had in store for them.  He was preparing them for their callings: our patriarch, 2^nd in command of all of Egypt (and saved his family/nation from starvation) and the king of Israel.  While I am sure it was difficult to wait, they didn’t waste it.

Then there is me.  I am ashamed to say that I want God to immediately answer my prayers and more specifically, to answer them how I want them to be answered.  I pray and when the answer does not present itself immediately, I begin to question the Lord.  “Has He forgotten me? Why isn’t He answering me?  I have been praying about this for a few hours/days/weeks/months now…”  I need to not waste the wait and know God is here, at work and has a purpose in it.

Maybe God is working in my life in areas that need to be addressed during this time of waiting (also known as ‘refining my character’-an on-going work in progress!).  Maybe God is preparing the doctor, the medical field in general, to have something new become available that could help Sarah and by waiting, we will find out about it.  Maybe God is at work in Sarah and by the time this appointment comes her crying and aggressive behavior will not be as much of an issue as it is now.   All I know is that God’s timing is never late, never early, but perfect.

I also look at these verses and see how God is saying them to me.  “Jill, I am your shield, your great reward.  I am with you and over and over again I have shown you kindness.  Lastly, I have given you the Holy Spirit in your life.”  (And I say, ‘Thank You, Lord!’)   He is the God of these men and He was faithful to them, therefore, I know as my God, He will continue to be faithful to me.

So I wait…and maybe right now you are in the middle of something that God is asking you to wait through, as well.  Maybe you are feeling frustrated, alone or forgotten.  I know it is not easy, but with anticipation I hope we both can see that He has a purpose in the waiting.

Isaiah 30:18, “Yet the Lord longs to be gracious to you; He rises to show you compassion.  For the Lord is a God of justice.  Blessed are all who wait for Him!”  

Sarah White would have been 39 today.   I want to honor my dear friend for the impact she had on my life. 

One of the things I have come to realize on this journey of autism is the importance of friends in my life.  God has given me truly wonderful friends whose love and support have sustained me.  An email, a text, a call, a hug means so much to me and sometimes right when I needed it the most.  God has given me friends that love my daughter Sarah and whose hearts ache with us on this journey.

My friend, Carol Kent, in her book “When I Lay my Isaac Down” calls her supportive friends, “Stretcher Bearers”, after the story of the paralyzed man who was carried to Jesus on a mat by his friends in Luke 5:17-26 (page 75). I can see that.  There are times on this journey that I feel I can’t walk anymore and God has given me friends to help, encourage, cheer, and yes, carry us on in this journey.

No one can take autism from us, much like how I would love to take the hardships from my friends’ lives that they are facing but can’t, but God has given us friends to come along side us.  To wrap their arm around us and with the other hand support us as we travel on our journey.  My “come along side” friends, like you, who pray for us, truly mean more than I can ever express.  My heart cannot even begin to tell you of my love and gratitude to you for praying for us!

You truly are Galatians 6:2 “Carry each other’s burdens, and in this way you will fulfill the law of Christ.”

Then there is my friend Sarah White.  My relationship with Sarah was a precious gift.  I met Sarah on my first day at my new school in 4^th grade.  Sarah gave me a friendship pin (which was a safety pin with beads on it that the girls wore on their shoes) that made me feel accepted.  I still remember seeing the pin on my desk and a feeling of happiness washed over me that someone thought of me.  I looked over to see her sweetly smiling at me; a lifelong friendship was born.

As grown-ups our friendship deepened. Sarah had twin girls, too; the younger of the twins also is special needs.  Sarah had other children and was trying to find a balance of helping her one child without excluding the others, as well. Instead of “coming along side”, Sarah was my friend who was on the same journey I was on.  She was the hand tightly gripping my hand from across the table, a tear-filled eye meeting mine and telling me, “I know.  I know.”

Sarah did know exactly how I felt and there was a bond between us.  Another childhood friend (and now cousin-in-law), Suzie Palms, Sarah, and I would meet for dinner from time to time and it was a place to talk about different therapies, specialists and schooling options.  We learned so much from each other as we tried to find answers to help our girls.  Some dinners it was just a time to vent our frustrations and weariness with life and raising a special needs child.  Sarah spoke my “special needs mom language” and was facing many of the same things I was facing, despite her daughter having a different diagnosis.  Most of all, we laughed and for a moment stepped away from our lives and were just lifelong friends catching up.

October 2008, we met for Sarah’s birthday.  Suzie and I both could tell she wasn’t feeling well.  She barely ate and looked exhausted.  Two weeks later we found out the reason, pancreatic cancer.  Even now I am shocked by it. We felt helpless in how to help our friend. I begged God for healing, mercy and more time with my lifelong friend.  Sarah fought hard and the outpouring of people praying for her was amazing.  Sarah touched so many people and had an impact far greater than she ever knew.  Even when she was in such great pain, she responded in kindness and with a twinkle in her eye said something that made us smile.  It was so her.

December 21^st, 2008, Suzie and I saw Sarah one last time here on earth.  Instead of a tightly held hand across the table, it was us tightly holding her hands as she lay in her bed.  We told her how much we loved her and what her friendship meant to us, but I wasn’t sure if she could hear us.  Then, truly a gift from God, her right eye barely opened and her eye met our tear-filled eyes and she blew us a kiss, and then closed her eye again.  Sarah passed away in the early hours of December 23^rd.  She was 34 years old.

Today is Sarah (House) White’s birthday. She was an amazing wife, mother, daughter, sister, aunt, and friend and loved by so many.  She is greatly and achingly missed and one day I look forward to seeing my friend again in Heaven.   I think I will be standing in line to greet her and when our eyes meet; there will be no more tears, but there will be hands tightly grasping each other and a wink from a dear friend who knows.

Proverbs 17:17, “A friend loves at all times.”

Hi Everyone,

This is an update on my last blog:

Today we signed the paperwork for Sarah to attend this new school.  She will start officially on Friday (just wrapping up a few things and getting her new bus schedule set).  It is a whirlwind, but we have a peace about this.

What truly meant a lot to me was her current teacher and our Autism Coordinator for the district, whom we have known since Sarah was 6, were in tears saying good-bye to us at the end of our meeting. (This new school is county based so Sarah will no longer be under our city’s school district.) This wonderful teacher has been through so much with Sarah’s non-stop crying and screaming these past two years.  She has seen Sarah at her worse and yet loves her.  The Coordinator has also been our advocate all these years and has been such a wonderful support.  I am very thankful God placed these ladies into our lives!  While it is hard to say good-bye (I cried, too!), I know they are putting Sarah in good hands at the new school.

Thank you for covering us in prayer!  You made a very tough decision into one filled with peace and reassurance.

Is it going to be an easy transition?  Probably not!  This is Sarah!! 🙂 Sarah might struggle a bit, but we know God goes before us and is in control.

I truly feel like 2 Thessalonians 3:16, “Now may the Lord of peace Himself give you peace at all times and in every way.”

We truly are humbled and so thankful for people praying for our Sarah!  To know we have family and friends lifting us up in prayer during this time is so encouraging!

Thank you and bless you!

 

Today we visited the other, more restrictive environment school proposed for Sarah and I thought I was prepared. I have told myself this entire week that this could be the best situation for Sarah, but being there and seeing the kids walk by, it affected me.  There was a child picking and blowing his nose in his hand just like Sarah.  There was another child punching the lockers as she walked by.   I heard a child sitting on a bench making loud strange noises and we saw other autistic issues that are more severe than Sarah’s.  I looked at David and with this new reality hit me hard; tears came streaming down my face.   I could tell David seeing me like this choked him up, too, and he rubbed my back trying his best to reassure me. I tried to gather myself because I didn’t want the social worker who was going to give us the tour of the school see me crying.  I thought I was composed by the time she came but as the woman approached us she said, “Yes, this place can have that affect on parents.  Do you want a Kleenex?  Do you want to sit down before we start?”

Our new reality had begun.

At first, I thought, “What are we doing here?” I saw paraprofessionals/aides wearing finger-less gloves that went up their arms and saw how these gloves protected them from children who pinched them. I saw a child trying to hit his aide and the aide gently redirecting him. I thought of how Sarah, who mimics negative behaviors, would only digress more if she attended here.  But as the tour continued we saw higher functioning kids, higher than Sarah actually, greeting us.    We saw kids learning and rooms especially designed to meet Sarah’s sensory needs. And while seeing some of things were a bit alarming, there was a sense of overall happiness at this school.  I saw autistic children laughing with their teachers.  Students coming up greeting and teasing the social worker and there was truly a sense of contentment.  Most of all, we saw teachers and aides who truly have a heart for these special children and have a desire and the resources to help them.  (While we LOVE her teacher, Sarah’s current program does not have these resources.)

David and I walked out the school knowing that this is the place God is leading us to for Sarah.

My friend, Lucy, gave me a book several years ago called, “Calm My Anxious Heart: A Woman’s Guide of Finding Contentment” by Linda Dillow.   I love this quote on page 26 of this book:

“Two women looked through prison bars;

One saw mud, the other saw stars.”

 

It is so easy to only see the mud.  It’s there; it’s not like only one had mud and the other didn’t.  Likewise, both also had the view of the stars above them, but only one chose to focus upwards.

 

Hebrews 12:2, “Let us fix our eyes on Jesus, the Author and Perfecter of our faith…”

 

Choosing our focus….I think I had a change of focus today.  Like a lot of things in life, at first, I saw only the negative and was overwhelmed by it.  Yet, God opened my eyes to see how He is leading us here and how this might be a place that Sarah might truly be happy and successful.

 

Changing my focus and fixing my eyes on Him; while this is a new reality for us, a common thread of His faithfulness remains fast and true in whatever circumstances we face.

 

Thank you so much for your on-going prayers!

One of our prayer requests this month was finding the best school option for Sarah.  Currently, she is an Autism Spectrum Disorder (ASD) Middle School class at a local middle school.  This is a wonderful program and we have one of the most experienced teachers in this field as her teacher.  Sarah, if cooperating, swims, cooks, does her laundry and other life skills jobs.  When she started this program when she was in the 6^th grade, I teased she would never want to come home!  We realized this was the best placement for Sarah as she would lose the social interaction of elementary school and Sarah would not be able to handle the hour class schedules of a typical Middle School setting.

Unfortunately, as you know, Sarah hasn’t been cooperating and her behaviors have gotten in the way of her learning and distracting others.  Last spring, the teacher asked us to complete an application for a school that could handle Sarah’s behaviors.  She said we could decide when the time came if we wanted her to go there, but it would be wise to just get the paperwork started since the school has a year long waitlist.  On Friday I received a phone call that a spot is open for Sarah at this school.  In our hearts we were hoping that by the time this school called, Sarah would be getting better with her behaviors and it would not be needed.  I have nothing against this school; it is just that it is for the more severe, in general.  Also, while not set in stone, if you are severe enough to be at this school, you usually don’t leave it to go back to the other programs, say the ASD High School program.  If she enters this school, she will be there most likely until she is age 26.

Again, I have nothing against this school, they do great things with their kids; various field trips and making crafts to sell, but in many ways it is a death of a dream. It is the most restrictive school for the entire county.  The website states they try if possible to find less restrictive situations before this school is selected.  Basically, it is the last option-just saying that is heartbreaking. Friday night I mourned for the loss of another hope for my child.

I know you are praying and we can tell.  Her behaviors are improving, but her teacher said they would have to be drastically different in order for her to stay at her current program and if we don’t take this spot now it might not be again available for another year.   She said with Sarah’s behaviors she certainly would not be able to go to the ASD high school program next fall. We asked for clear direction and we got one.  David and I will be setting up a time to visit the school and if God continues to confirm His leading we will sign the paperwork to make the switch. I thought of the verse in Isaiah 30:21:

“Whether you turn to the right or to the left, your ears will hear a voice behind you, saying, “This is the way, walk in it.”

God is whispering in our ears for the way to go for Sarah. While I cried for the loss of what we wanted for Sarah, He knows what is best.  Maybe this restrictive program is what she needs and she will be happier here.  Maybe He knows I needed this whisper because I wasn’t willing for her to go here otherwise.  I love how He knows where I am at on this journey and He gently leads.  Like Hosea 11:4, “He leads them with cords of human kindness, with ties of love.”

I am struggling with this, no doubt about it.  I guess I need to stop digging my heels and allow Him to lead us with ties of His love.  He has never left us for one moment on this journey.  All along He has been whispering in our ears, “I’m here, I’ve got this, I love Sarah more than you can imagine, stop resisting, let Me bring peace to your hurting soul and follow Me.”

So I am giving Him my grieving heart and walking this new path.  I will continue to listen for His whisper because He has never let me down yet.

Psalm 14:5-6, “But I trust in your unfailing love; my heart rejoices in your salvation.  I will sing to the Lord, for He has been good to me!” (Emphasis mine-the verse ends in a period, but I just can’t end that verse without an exclamation point!)  Thank you for your continued prayers for us!

I am asked often if Sarah talks.  Most of the time when Sarah is in public, she will make noises, cries, occasionally screams, but rarely does she say words.  Even at home, she says very little in the way of communication, but more as repeating words she has heard.  She has a way of repeating us especially if what we said is said with great expression or emotion.   If she really likes the phrase she will keep saying it even months later.  (Oh good!)

An example is when our dog, Pudge, pooped in the house. This dog has very few redeeming qualities.  He looks like a pig, snorts like pig, roots and sniffs around the house like a pig and truly I think sheds his body weight in dog hair each day.  He was named after Pudge Rodriguez, the former Tiger catcher, but now his body shape matches his name.  He is a pudgy pug and I was not too pleased when he had his accident.

“We don’t poop in the house!  Potty outside!!” and with that I sent the dog into the backyard.  Then, a voice mimicking me in exact tone and expression came from across the house,

“We don’t poop in the house!  We don’t poop in the house! Potty outside!”

I found Sarah in the other room and I told her with great inflection so Jack could hear, “Yes, Sarah, Jack’s dog pooped in the house!”

(Jack asked for this dog for his birthday five years ago and we like to tease him that when Pudge does something bad, it is his dog.)

Sure enough, Sarah started chanting, “Jack’s dog pooped in the house!  Jack’s dog pooped in the house!”

Jack with a twinkle in his eye came up to me and said, “Mom, that probably isn’t the best thing to say to Sarah.”  I asked him why and he said teasingly, “I can see the word ‘dog’ being left out of that sentence and that could be very awkward.”

He had a point.  I need to be careful with the words that I say.

When Kendall (and therefore, Sarah, too) turned 13 this year, I had a Blessings Party in her honor.  My sister did this for her daughter when she turned 13 and I wanted to do the same for Kendall.  I asked both sides of our family and ladies from our small group Bible Study to write blessings to Kendall as she entered her teenage years.   I put all the notes into a keepsake book for her to look upon for years to come.  I then surprised Kendall by having all of them waiting for us at a restaurant and I presented her the book.  It was a night of affirmation, welcoming her into becoming a young woman of God and having these women show their support and love for her.  It was just as special for me as it was for her, I think!

The hardest part for me was the words I would say to Kendall.  How can I express all that I wanted to tell my daughter in a few pages of a book?  All my prayers for her, my blessings for her life, my words that when I am gone she will remember me by?  I decided for the last two pages of what I wrote, I would share my favorite Bible verses with her and why they are special to me.

I was trying to find a specific Bible verse and I just couldn’t seem to find it.  I had the “ish” thing going on in my brain.  ‘I think this verse is in Psalms-ish.’ ‘I want to say around Chapter 140-ish.’  I was searching and flipping back and forth through Psalms and instead another verse jumped out at me.  When I read it, it was like I had never seen it before, but it was the perfect verse that summed up exactly what I wanted to say.  I knew it was from the Lord and it became an “instant favorite” and made it into the book.  It was Psalm 141:3.

“Set a guard over my mouth, O LORD; keep watch over the door of my lips.”

I told Kendall I want the words that I say to be pleasing to the Lord, not for Him to assign more guards over my mouth!

Such a good and challenging reminder, especially when I have a daughter who repeats the words that I say.  

I want to be careful how I write this. I don’t want to be too graphic, but it looks like today Sarah started a new phase in her maturity. For years, people have asked me, okay, just other women, if men asked that would be creepy, what I would do when this happens and my reply has always been the same: The Lord is already there and in control. I am going to keep going on this path in faith and pray for grace and wisdom when we get to this point on the path.

Growing up, the Wednesday night girl clubs’ theme verse at my church was Psalms 119:105, “Your word is a lamp unto my feet and a light unto my path.”

When I think of ‘a light unto my path’, it reminds me of the time I went on a camping trip with Kendall, Sarah’s twin sister. The planners of this event called it “rustic”; I called it “one night only” and later under my breath, “never again”. The camp was fine during the day, but once the sun set, it got dark. Or, as my kids used to say when they were little it got ‘dark dark’. One of our nighttime activities was to go on a nature walk to see if we can see any nocturnal animals. Sadly, we saw very little, not just because of how dark it was, but the fact that every animal in the entire campground could hear us and stayed clear. The Gregory girls would make terrible ninjas! The path was barely worn and I relied heavily on my flashlight to navigate my way. My flashlight only gave enough light to reveal the few feet ahead of me. I couldn’t walk too fast otherwise I could walk into a tree, or stumble on some rocks and fall or stray off the path without even realizing it. I had to be very intentional in how I walked.

How true for our own lives’ paths!  If I try to run ahead of God’s path for my life, I will make a real mess of it! And while I might want to see the entire path upfront, I might get overwhelmed and discouraged at how long my path is or if there are any twists or turns, if it goes down into deep valleys or climbs high mountains. Maybe that is why the Lord gives us just enough light to take the next step. He knows us too well! He gently leads with one step, then another and then another.

David was out today and he came home to ask me how Sarah had been, if she was any worse today because she had started her period. I told him the usual crying but at one point this afternoon she pointed to our dog, Pudge, and asked, “Can we eat that?” (Times are not that tough yet in the Gregory household!) Surprised when I realized she was talking about the dog, I told her emphatically ‘No!’ and she ran upstairs to her bedroom giggling. I hope this is Sarah’s sense of humor coming through and not that I need to hide all of our knives along with our scissors stash! (We actually hoped her starting might be beneficial because we think her non-stop crying and screaming could be tied to hormonal changes. Maybe this happening will stabilize her hormones a bit. That’s our prayer!!)

On our weddings bands David and I inscribed ‘Proverbs 3:5-6’.  Which says, “Trust in the Lord with all your heart and lean not unto your own understanding.  Acknowledge Him in all your ways and He will direct your path.”  Trust Him, believe Him when it doesn’t make sense to me, acknowledge He is in control and He will direct my path. Hmmm…I guess the Lord knew I needed these verses in my life so He made sure they are always on me! He has been faithful before and He continues to be faithful, so my plan is that we will continue to follow this path with the small light we have before us as He leads us to the next step, then the next, and then the next after that.

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.”