Who Are These Special Moms?

As the mother of a son with special needs, I have often had people tell me that they think God gives special children to special moms.  While I realize that this sentiment is meant to be encouraging and kind, I also must say that I think it’s misguided.  A big reason I think this is because I know me.  I know me better than anyone else knows me, except God.  I know that I’m no more special than any other mom out there.  This isn’t fake humility, either.  It’s just the truth.

All moms need God’s grace for each day.  We who are His children need His grace for our own children in so many different ways.  How amazing is God’s grace, too!  He promises this undeserved favor to us over and over, greater grace for greater needs, along with His mercies that are new every morning.  He has all that I need.  He has all that any mom needs.  I asked God many times to give me grace for the challenges that I faced as a mom to all three of our children.

Having said all this, let me also say that I have a great respect for the moms that I know who are walking this life alongside their child or children with special needs.  My heart goes out to them, ones I know and ones I don’t know, as they face demands that they never dreamed they would encounter as a mother.

So as Mother’s Day approaches, and we see the beautiful cards…….heart tugging commercials…….perfect mother and children photos…….and all the lovely images of motherhood through the years – let me give a “special” shout-out to all the “special” moms of special children.

Those dear Moms:

  • Who spend hours researching your child’s diagnosis rather than hours researching what sport for him to play.
  • Who pray for your child’s teacher to be understanding of meltdowns, bluntness, and a zillion other things that have nothing to do with her grasping of educational facts, and yet have everything to do with her ability to learn.
  • Who dread with a passion those IEP meetings.
  • Who dread having to once again explain your child in every new setting.
  • Who dread high school graduation because……then what?
  • Who try to ignore the stares from others in public places instead of basking in admiring glances.
  • Who are learning how to use your child’s feeding tube rather than planning his fun pizza party.
  • Who are searching for the best wheelchair rather than the best bicycle.
  • Who watch their child being marked for radiation rather than getting a cool tattoo.
  • Who are shopping with their daughter for a wig to cover her bald head due to chemo instead of shopping for the perfect new hair products.
  • Who are driving their older child everywhere because he can’t have a driver’s license due to seizures or other medical issues.
  • Who hurt because their child doesn’t have many, or any, friends.
  • Who are signing guardianship papers instead of college admittance papers.
  • Who are scouring the internet for the latest medical treatments instead of scouring for the best college scholarships.
  • Who know more drug names and side effects than they ever wanted to know.
  • Who spend far more time finding caregivers than finding cool vacation spots.
  • Who are adept at rearranging schedules due to unexpected medical issues.
  • Who lay in bed at night with the sound of your husband sleeping on one side, and your adult child breathing heavily in the baby monitor on the other side as you listen for seizures.
  • Who read your adult child the same book every single night of his life.
  • Who keep waterproof mattress pads on your child’s bed – your adult child.
  • Who have a hard time finishing a conversation with your husband without being interrupted over and over.
  • And who, for some, will find themselves looking at a gravestone on Mother’s Day instead of looking into the eyes of their child.

 

So to all of you amazing mothers of special needs children, I give you a huge high five!!  I hope you know that you are loved and that God does have special grace for you every day.

And may you, as my friend Atha would say, be established in your purpose……this God-given purpose……of raising one of His very special children.

 

 

 

Mother’s Day……Aaron’s Way


 I was sitting at the kitchen table on this beautiful Mother’s Day morning when I heard Aaron yank his bedroom door open upstairs.  Down the stairs he lumbered, and then across the family room he walked with his usual heavy steps.  He didn’t say a word to me as I so obviously sat there, but instead loudly said, “Dad!  I’m ready!”  As Aaron walked by the table where I sat, he glanced over at me with his darting eyes.  He was nervous and had no time for small talk with Mom as he hurried by me, glancing quickly at me again and then looking away once more.  
Aaron hurried downstairs, and then soon he and Gary were both upstairs again, hurrying off to the nearby guest room.  This time Aaron didn’t even look my way, but instead just followed Dad as he kept his focus on Gary’s back.  I heard a little rustling and then back came Aaron, carrying a gorgeous flower arrangement.  He walked over to my chair while I exclaimed my surprise and my delight. 
“Oh Aaron, they’re beautiful!” I said.  “Thank you so much!”
“Uh-huh,” Aaron flatly replied to my thank you. 
By this time, Aaron was off again, walking once more toward Gary who stood in the little hallway.   He took two cards from Gary’s hands and once again came over to where I was as he handed them to me.  He was turning to head off again from all this embarrassing pleasure of Mom’s, but I reached out and pulled him toward me.  
“Wait, Aaron,” I said.  “Let me open the card from you.”
He gave a little half-hearted chuckle, not really wanting to stand there any longer, but he did stay as I opened his card.  I knew that Gary had helped him pick it out.  One of the captions had been whited out by Gary and replaced with a more appropriate word.  The card was perfect and I laughed as I told Aaron that I loved it, and I thanked him again.
“Uh-huh,” he repeated.  And this time I let him walk away after I grabbed a quick, uncomfortable hug………more me hugging Aaron than him responding much.  
This is how Aaron celebrates special days.  Quickly, with as little fanfare as possible, and hopefully no gushing emotion.  Yet he clearly wants to recognize special days…..just on his own terms.  Short, not necessarily sweet, and then we’re done.  
He was ready to cut out coupons that he knew were there waiting on him.  His routine needed to be restored.  And please don’t ask me to talk a lot about this Mother’s Day business, he was thinking, or to say you’re welcome and DEFINITELY not “I love you!”
OK, we’re done, right?  Can I just cut out my coupons and talk about the movie I’m watching or the one I want to watch?  But no!  Dad came in the family room and sat on the couch, and had to mention something else that we were going to do on this special day that’s getting a tad stressful.  
But going out to eat IS pretty fun, and so Aaron agreed to go with us.  Honestly, Gary and I had been unsure about taking Aaron with us, but I was very glad that Gary invited Aaron along…….and even happier that Aaron agreed to go.  We later made our way to the restaurant, where there were a lot of people there celebrating Mother’s Day just like us…….well, like Gary and me.  Not Aaron so much.  But a meal out is worth celebrating, so Aaron didn’t even complain about the crowd.
The host told us that the wait would probably be 20 minutes, so as we stepped to a quieter area to wait, Aaron asked what time it would be when we were called.  Gary gave the time that was about 20 minutes away, and immediately Aaron checked his watch.  Here we go, I thought.  If we don’t get called by just that time we might have a problem, Houston.
I told him it didn’t mean that we would be called at exactly that time.  Aaron said he knew that…..as he checked his watch.  We talked about this and that……he checked his watch.  We discussed an issue he’s been concerned about……he checked his watch.  We talked about the service dog that walked past…..he checked his watch.  I reminded him of the time issue not being exact and he said he understood……as he checked his watch.  I was getting a little nervous……and he checked his watch again.  WHY DID WE EVER BUY HIM A WATCH??!!
Finally, before the 20 minutes were up, we were called and a crisis was averted.  A frustrated Aaron is not a pleasant Aaron to have around a huge, happy crowd of Mother’s Day celebrators.  Thank you, Lord, for small blessings that to us are huge.  As we sat at our table, the server came over and we all agreed on coffee to drink.  Then immediately Aaron asked, “Do you know where the bathrooms are?”
Our server laughed and said, “Of course I know where the bathrooms are.”  I realized that she didn’t quite understand Aaron, but I knew she soon would.  So Gary took Aaron to find the bathroom per the server’s instructions and soon returned, with Aaron not far behind.  We placed our orders, and then Gary and I watched as Aaron took his napkin and began wiping up all the stray coffee and water splashes on the table.  
Soon the table was satisfactory to him, and he proceeded to scarf down his first of several cups of coffee.  Plus his omelet, his hash browns, his biscuit, his water, and more coffee…..in that order.  He only eats one food at a time until it’s gone, and then moves on to the next item, not even wanting his biscuit buttered until he was ready to eat it.  There is a method to all things, you know.  People are silly if they don’t understand this.
Before long, we were on Kellogg driving toward home.  His biggest concern at this point was whether to cut out the page of Burger King coupons that were in the paper or to just leave them together on the sheet.  Are we on coupons again, I thought?  
We passed by one of Aaron’s favorite places, where at least for a time he was distracted from coupons.  Resthaven Cemetery.  Not that Aaron is obsessed with death, but you have to admit that a cemetery is rather unusual and you know how he loves the unusual.  
“You know what they do at that ceremony place?” he asked.  I didn’t even correct him about ceremony versus cemetery.  I wanted to hear his insights his way.  
“What do they do?” we asked.
“They do cremations and burials and one other thing, but I don’t remember the other thing!” he exclaimed.
“Cremations are when you burn yourself!!” he then informed us.
So Gary stepped in at that point and corrected that mispereption as gently as he could, and off we drove to the house, well past the ceremony place and all those things they do there.
I talked Aaron into letting Dad take a couple pictures, barely.  He was so ready to be done with all this Mother’s Day hoopla, and hugging, and thank you’s, and mushy stuff.  Finally he was free to finish a couple lingering coupons and then bounce between his room and the rest of the house, comfortable once again in his world done his way.
I enjoyed calls from Andrew and Andrea, with Aaron trying to interrupt, as usual.  I’m thankful for my three children, thankful to be their mother and to have their love as they have mine.  I’m very thankful for a husband who makes it all possible, and who loves and leads us all still after all these years.
And I’m thankful for celebrating another Mother’s Day…..Aaron’s Way!  
I’ll grab another hug before bed, just watch me!

Mother’s Recipes


I’m a child of the 50’s and 60’s.  It was for the most part still a time of innocence and good old fashioned values.  Growing up on North Third Street in Princeton, West Virginia was an experience that I dearly treasure.  There at nearly the top of third street sat our house, with large maple trees out front and apple trees in the back.  We were surrounded by neighbors, most with kids the age of us King kids.  I remember riding bikes, skating, playing hop scotch and jumping rope in the street, sledding in the winter down the Lockhart’s hill, climbing trees, having sleepovers with friends, and playing kick-the-can until our parents called us in at night.  It was a wonderful, carefree childhood. 
Certain sounds and smells carry me back to that time.  When I smell fresh mowed grass, I think of Saturdays when Dad or John would mow the lawn.  Then I can almost smell Mom’s pinto beans, onions, cornbread, and fresh tomatoes out of their garden.  That was a summer Saturday routine at our house.  So many of the highlights of my youth seem to end up in our kitchen where Mom worked her magic.  Our kitchen was the heart of our home.  We cooked and ate and talked and laughed and cried in that one room. 
Of all the things that my mother did so very well, I think her cooking is the thing that we and others remember the most.  Mom was an expert seamstress, a great organizer of our home, a responsible director of the school food service programs in nine WV counties in later years, a college graduate, and she was a beautiful soloist.  But oh, her cooking……
I can still see our kitchen table overflowing with her homemade rolls, ready for her to package and put in the freezer.  She cooked in bulk and cooked ahead because she was just that organized.  Down in our basement, there were two upright freezers full of all sorts of goodies and essentials.  Not only did she freeze, and also can, garden vegetables and fruits, she also made endless dozens of cookies and then froze them in empty coffee cans.  Who can count the number of trips we kids must have made to those freezers, where we would open the door, crack open the coffee can lid, and snatch a frozen cookie…….and then breathe into it as we held it in our mouth, our breath thawing each bite just enough as we ran back outside to our play.
Inside those freezers were stacks of her homemade pizza crusts, each crust separated by waxed paper from the one underneath.  There were little bags of frozen homemade pizza sauce in just the right proportion for each pizza, as well as bags of frozen toppings such as cooked hamburger or sausage, pepperoni, and cheese.  Her pizza was the best!
I’ll never forget how she would bake hamburger on large sheet pans and then cut our hamburgers into squares.  And because you shouldn’t put a square hamburger on a round bun, she made her own square buns.   She even made hot dog buns, and somehow got the recipe for Dairy Queen chili, to boot!
Who of us can forget preparing for Thanksgiving dinner?  Mom’s Cranberry Jello Salad was a staple every year.  She would let each of us kids take a turn at her food grinder, dividing up the cranberries and the whole orange slices equally between us.  We would then turn the handle of the grinder as we listened to the popping of the cranberries and the squishing of the oranges.  The experience is just not the same now with the whirring motors of our food processors.  But it all comes back to me in a rush every time I taste that salad in my own kitchen.
Sunday dinners were always a large affair, with a roast or maybe some fried chicken, and all the fixings.  Often we would have a pastor or a visiting missionary eat with us.  Then we would eat in the dining room and use her good china.  She even had autumn china that had leaves on it, which I thought was pretty amazing.  She taught us the proper way to set a table…….fork on the left, knife on the right with the serrated edge facing the plate, and then the spoon. Drinking glass on the right, above the knife and spoon.  We all knew Mom’s strict rules, too.  Do NOT take seconds until the guests have had seconds.  Do NOT put your elbows on the table.  Do NOT interrupt the conversation.  And by all means, do NOT look at each other and start laughing during dinner!!  That was the hardest one to obey, trust me!  Laughter was always just seconds away at our house.  
  
Sometimes when money was low at the end of the month, Mom would make fried mush for us to eat.  We just loved it, all buttery and soft.  Mom was embarrassed, though, and we never understood why until we were older.  And sometimes after church on a Sunday night, we would all sit around the table and drink her wonderful hot chocolate while we ate buttered toast.  
We never left for school in the mornings without breakfast.  But it wasn’t only breakfast that Mom made sure we had.  She would also have us open our Bibles with her, and she would then read the devotional Our Daily Bread with us before we left to hurry off to school.  We would follow along with the scripture in our Bibles as she read, and then we would listen to her read the devotion, and we would pray.  
I have some of my mother’s recipes.  Actually, I have many of her recipes.  I spent a year at home between college graduation and marriage, so I took lots of time at home to copy her recipes.  Most are in my hand writing.  
I especially treasure the ones that are in her handwriting.  They are bent and stained and are becoming hard to read as they fade with time, but I would NOT trade them for the best typed recipe in the world.  Not at all!  For her handwriting makes me feel that I have a part of her with me each time I use that recipe.  
Our mother gave each of us, however, the most important recipe there could ever be.  She taught us how to live, teaching us about the proper ingredients and the instructions of living life in the right way.  It went far beyond how to behave at the dinner table when company was there.  It was much more than how to cook a meal, clean off the table, and wash the dishes in the unique way that she followed………and that I bet each of us girls still follow today.
Our mother taught us how vital it was that we ask Christ to be our Lord and our Savior, which we each did at an early age.  She made sure that we knew the importance of beginning our day with time in the Bible and in prayer.  Dad left for work very early so it was up to Mom to be sure that happened……and she faithfully did just that, even when she had to go to work as well.  She taught us to consult the Bible about decisions; to let God have the final say when we wondered what to do about all the issues we faced as we grew up; and to be faithful in attending church, not letting any other activity be more important in our lives.
She taught us girls to be modest, and what to look for in a husband.  Her favorite quote, which she shared many times with me, was – “God gives His very best to those who leave the choice with Him.”  She taught us to handle life’s good times with thankfulness and the bad times with trust.  And she showed us how to handle any situation…….ANY and ALL situations…….with humor.  
Her recipes for life are hidden in our hearts, not written on a card and tucked away in a file.  Her five children, and hopefully our children, carry those values with us every day.  Those instructions are seen in our decisions, our values, our attitudes, our hopes, and most certainly in our laughter.  
Our mother doesn’t know us now.  She doesn’t remember Dad.  She is struggling with some health issues and with Alzheimer’s.  But the ingredients with which she raised us are, and always will be, a part of us.  Her life is bearing fruit in her children, grandchildren, and great grandchildren.  It’s a sweet savor, more wonderful than the smell of her fresh baked rolls.
            “She looks well to the ways of her household, and does not eat the bread of
            idleness.  Her children rise up, and call her blessed.”

Happy Mother’s Day, Mom.  We love you.

FADING AWAY

 

I called my mother on Sunday afternoon – Mother’s Day.  The phone rang a few times and her answering machine picked up.  Just as the familiar recording began, I heard Mom’s voice faintly say hello.  I knew then that I had awakened her from a nap.  I waited for the recording to end, for the beep of the machine to subside, and then I spoke to her.  She was confused for a minute as she tried to clear her mind.  Being roused from sleep always causes her to be very confused.  I told her who I was and that I just wanted to call her on her special day – Mother’s Day.  She was pleased, and as always, her ingrained politeness kicked in as she thanked me for calling.  It was almost as if she was talking to a casual acquaintance and not her daughter.
When I asked how she was doing, Mom told me that she had been in bed for awhile and that she really didn’t know why.  As we talked and her mind cleared, she was still very uncertain about herself.  Each time I talk to her, I can read between the lines and I know that she is failing mentally.  Actually, I don’t even have to read between the lines.  Her end of our conversations are most often very vague and this vagueness speaks so clearly of just how unclear she now is mentally.
We didn’t talk very long on Sunday.  Once the answering machine went off, she couldn’t understand me.  We said goodbye and hung up.  I called Jan then, and she told me that Mom was suffering from a bout of her severe colitis.  Bob and Jan, and John and Jeanie, take care of Mom as she lives in the beautiful assisted living center that she has called home for nearly two years.  They know all too well how her mental state is changing.  One of the saddest things that Jan told me was when Mom opened her Mother’s Day card from John and Jeanie, and she asked who John and Jeanie are.  It’s not the first time that she has shown that level of forgetfulness, but it’s always alarming to see.
When I call Mom and tell her my name, I’m not so sure that she always knows that this Patty is her daughter.  Her realization seems to come and go as we talk.  She never asks about our children by name but will instead ask me how the family is doing.  She is always pleased when I give her a report on Gary and each of our children.  Mom has that social politeness that is a part of her fabric, so she exhibits happiness as she hears about Aaron, Andrea, and Andrew.  But does she even know that these are her grandchildren?  And this polite conversation lacks the depth of familial closeness that we always shared.  Something is missing.
What’s missing is………Mom.  Her very being has slowly been drifting away as the effects of her dementia increase.  She is living and breathing and talking, but MOM is fading away.  We still have her with us, and yet we don’t.  It’s a different sort of death.  We watched Dad fight cancer for eight years……….eight mostly good years.  He kept his mind all through this time.  His kindness……his wit……..his dear humor and sweetness and awareness never left him.  We could still share life with him, hard as it was, even as his own life was slipping away.

But with my dear mother, there is very little sharing now.  There is surface talk and politeness, but the soul and the connections are mostly gone……..from her side.  For us – her children and grandchildren – we are always connected to her in ways that she probably no longer feels.  We must accept, though, that the motherly affirmation and expression that even as adults we still long for……..are for the most part gone.

So many times I have found myself thinking that I would call Mom and ask her for some advice……….ask her how she made a certain dish……..ask her for a bit of family history that I wonder about.  But then I know that most or all of this part of her is gone.  Forever gone.  This is a sobering realization.  My totally competent, amazingly organized and gifted mother, is now the one who needs Jan or Jeanie to organize and manage her daily life.

 

She no longer looks at her calendar and knows that March 20 is her anniversary or that May 2 was Dad’s birthday or that September 14 is her own birthday.  This past Christmas, Jan wrote a note that was taped on each of  Mom’s presents under her tree.  The note simply said, “Do Not Open.”  Yet shortly before Christmas day, Bob and Jan walked in to Mom’s apartment and found that she had opened every single present……….and was ready to put the tree away.  We smile as we see in that episode a side of our organized mother that is still there.  Let’s get the show on the road and then clean up the mess!

 

Mom’s wit and her love of jokes and puns is almost legendary.  Yet now, at least when I talk to her, she seems rather flat.  Conversation lags between us because she has trouble with making important connections.  It’s hard to find something to talk about when she can’t even remember what that thing is that her cat, Princess, sits in front of………and I gently remind her that it is a window.  “Oh yes!” she says.  “The window!”  And I am struck with just how deeply she is affected……….and how deeply then we all are affected by this fading of her mind and memory.

 

I love this picture of her, though, still working at The Hunger Challenge at Johnston Chapel.  Still serving and smiling and enjoying being able to help.  That part of our mother is still there, as is her kindness and her concern for others.  This exemplifies my mother to her core, and I’m thankful that she can still physically do these things, though somewhat limited.

 

This gradual letting go…….this sitting on the sidelines of her life and watching her gradually slip away……..is heartbreaking for all of us.  There is really nothing we can do but be there for her, as Bob and Jan, and John and Jeanie, are every day.  We can tell her about our families, even as we sense that she’s not sure exactly who we are talking about.

 

And we can, and do, tell her how much we love her.  Someday even those words won’t really reach her.  But we reach into our hearts and into our memories, and we recognize her value to each of us in so many different ways.  Our love for her is not based on her memory or lack thereof.

 

I also realize how important it is that I say to my children the words that I want them to hear from me.  Someday I may not be able to say them, even though I may still be here physically.  Words of encouragement, instruction, family history, and love………words I hope they store away in their hearts forever.

 

Our sweet little mommy is fading away, but her example and influence is as strong as ever.  In fact, her impact in our lives is eternal and we are all so thankful for that fact…..and for her.

 

We can smile through our tears and be thankful for all that she was…….and still is today.