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Thirty-nine years ago my mother pushed me into this great world of unknowns.  I was fat with frosted hair, colicky, strong-willed and creatively searching for ways to make my mother's life just a little bit harder.  I was a difficult toddler, but mercifully when school started, things fell into place, and my dear mother could breathe again so she could take care of the rest of my five family members.

Today is the day of my birth and yet, for my mother, it was the day that changed her life forever.  It was the day she would realize what selfless truly means.  She would know what it means to be riddled with pain, with flu, with anguish, but yet, still have to rise up and wear the crown of mother.  She would know the term sleepless, and spend countless hours praying for her children to grow up and know God, be responsible and caring human beings in this broken society. She prayed for them to be loved well by their spouses and be emotionally stable in a very wayward land.  But sometimes all good plans don't succeed.  Sometimes the dreams for your children are broken by depression, destruction, pride, abuse, and death.  She didn't know she would be crying along side every one of her children begging God for mercy and respite in times of great need.  She didn't know she would be the comforter, giving chicken soup for not only the soul, but for actual healing when days were long and hard and sometimes disastrous.  She stood and wrapped her arms around each one as the pain seeped from our veins into hers as she felt what we felt, grieved what some of us had lost.

My Mom and me

 Today I celebrate her,  because I have a small glimpse of what she did for me and am now only beginning to understand what it means to be christened mother.  And when the days come that seem to rip at the seams of my flesh, and when my children have days that are seemingly awful, and when I think that this mother-thing is not for me, because I don't have any answers anymore, and when the sticker chart, positive incentives, dicipline and re-teaching has all failed, I will  (try to) raise my hands to the sky and thank the Lord God Almighty that He has given me this grand opportunity to minister to the needs of these hopeful little beings, to hear them out when nobody else will understand, to speak words of life into their little ears, to spur them on to kindness.  Today I will hope with them when all seems riddled with fear, tainted with bitter words, or when lips are mute, legs are unstable, when hands can't form signs, or when hearts can't bend toward love.  

I don't know if I can do it but today I feel inspired.  It's my day of birth, after all. 

Yesterday, we spent the afternoon in Cape Charles and dined at the Shanty. It was a sweet and welcomed Mother's Day/birthday gift.   VERY Miraculously, all three of my kids sat  angelically in their best post-beach state sipping water and basking in the ocean breeze while listening to cool indie-jazz music. June has been doing this funny thing where she sits behind us and moves our arms to what she wants...kind of like we are her robot...or servant. For a child who hasn't communicated much to us in five years, we have been off-our-rocker intrigued and equally excited!
In this case, she wanted ice:

 Sunshine, communication and giggles.  These are good gifts.

Happy birthday to me!

Stomp and the Angel-Usher

I bought five tickets to see the broad-way show STOMP.  All five of us would go, have a wonderful time, and every one of us would be equally entertained.  I was sure of it.  So the big day came yesterday.  I could hardly contain my excitement...we don't often do things like this.  I packed bags, made sure we had the appropriate provisions and we waltzed in to the middle of the orchestra section with our small children in tow.  They seemed amused with the lights.  Everyone was rather loud anyway...in fact, there were people with cerebral palsy in wheelchairs all around us making funny noises...we would hardly be noticed.

The show started and my kids were mostly captivated and literally on the edge of their seats.
Everyone except June.
June was squirming around, waving her arms in the air, being unusually loud.  She ended up on the floor.  I thought...fine, she won't swat someone in the head.  Not ten minutes in, she started crying...the crying you can't ignore.  I picked her up and very inappropriately shoved my way through the audience making my way for the sidelines...where all the people in wheelchairs sat.  I thought we'd feel at home there.  I was wrong. The door-usher informed me that we couldn't stand and she opened the door and basically shoved us out.

I exited the show area and realized right then and there I had forgotten some very important things:
June's shoes and socks
My purse and cell phone
Which had diapers and wipes in it.

June had poopy pants.

I tried to be strong, I did, but as I rounded the corner I burst into tears uncontrollably.  This wasn't how things were supposed to go.  We were supposed to do something as a family. For fun.  Without attendants. June was supposed to love every minute of the thumping and tapping of the show, not hate to be in there.

At that moment, a very kind  angel-usher appeared, grabbing both my hands and telling me that there were televisions we could watch and that he would help us find a seat in the back...I smiled and nodded and followed June as she was heading up the stairs.  I knew where she was going...to obsess over lines, angles and light bouncing off of glass.  The angel-usher meant well, I thought, but he doesn't know my daughter.

I pulled myself together and followed June up to the second floor where we sat in a chair, and June stuck her legs over the railing.  The lady-usher below told me that she couldn't do that.  I whisked her away to the third floor.  She made her way in between a bench and the side of the glass wall where she felt secure, I guess, looking around at all the lines, squares and rectangles.  Again, an usher came up to me and said we couldn't do that. Well what in the world can we do without shoes, socks and a fresh diaper?

By now I was crying hard.  Mascara was running down my face, my hair was all disheveled and I was positive I looked crazy.  I told the usher that I really needed to get my purse (I didn't tell him that my daughter has a history of eating poop).  He sent me on the elevator down to the first floor where the bless-ed angel-usher was waiting for us.

He took both of my hands again and said, "Don't you worry about this. Everything will be okay.  I will watch your daughter while you go find your purse. Then we will find you seats in the back."

I left my daughter with the angel- usher-stranger while I made my way back into the pitch-black sea of sitting bodies.  I couldn't see.  Plus, the door-usher was getting irritated with me.  I came back out.

The angel-usher saved the day and busted  into the show with his flashlight,  miraculously finding my purse.  He handed it to me with a big grin, totally acting like he was Superman...and he was.  Thanking him profusely, I grabbed June and found a bathroom where I could change her pants, wipe my eyes and pray for vision...the vision to see why my afternoon was spent in The Sandler Center Atrium...not watching the show.

I came back out and watched some of the show on the TV and when it was almost over, I ran again to find the angel-usher.  I asked him his name.  He said,  "My name is Joe."  He went on to explain to me that he had a 14 year old profoundly autistic grandson and he knew how hard it was. It had gotten to the point where they were putting him in a group home.  He believed it was the best place for him.  I understood.

I said, "Thank you for blessing me today. I know why I had to leave the show now.  So you could bless me."

And then I walked away...

The Gift

A couple of weeks ago my friend said to me, "Katie, I don't know how you do it, because honestly, I would possibly think about institutionalizing my daughter if I were you.  I don't think I could handle it." She looked me in the eye and tried to back paddle and said she was sorry if she had offended me.  I nearly cried.  I was not offended at all.  I was actually deeply touched.  Finally.  Someone empathized with me.  Someone understood that it was HARD raising this little girl of mystery. Yes, I told her.  I think about it almost weekly.

This person who said this was my dear, dear friend.
The same person who gave me a gift three years ago that I will never forget.    

The gift was her Nanny.

Kat, June and James, 2012

I've been dreading this day for a while.  June's "Miss Kat" is leaving us.

Kat has been working very hard and recently earned her nursing degree and is taking a job as a psychiatric nurse.  This was not originally her plan. She wanted to do something more glorious like work for labor and delivery, but just like God prepared my heart long ago for loving a child with profound needs, Kat's heart was prepared for this new job through the unexpected gift of June.

February 26, 2015

June has grown to love Miss Kat with her whole being.  She practically squeezes her as if to say, "Don't leave me. Not now..." June will wonder where her friend has gone...the one who keeps her safe, feeds her, braids her hair, bathes her meticulously, reads to her, gives her music to listen to, holds her tightly, and soothes her weary soul when she is anxious.  She is the one who protects her when she is thrashing violently, who tends to her when digestion is rough, resulting in back-bending pain.  She is the one who sings to her, prays over her and kisses her so that she knows she is loved.

James will wonder who will take him for "treats" on gloomy days, and who will lie in his bed at night, listening to his dreams and plans, and hug-tackle him when he pretends he really doesn't want it.  It wasn't like this at first...but now they have an inseparable bond because Kat refused to give up on this little guy.

And Charlotte has never known life without Miss Kat. While she was in the womb, echoes of Kat's laughter filled her chamber and it was music to her very being as she was christened with JOY.  It was as if Miss Kat's personality was etched into her DNA.  Charlotte doesn't know the difference between a black person or a white person.  She doesn't know the difference between Miss Kat and her Mommy either.  It is likely that when she wakes up from her nap, the first thing she will call is, "Miss Kat! Miss Kat!".  
And Miss Kat sadly won't come running with June-bug on her back.

But perhaps the one who will mourn Kat's loss the most is this Mommy right here.  Yes, Miss Kat is excellent at what she does with all her child-watching skills, flexibility, role-playing abilities, patience and treat expertise, but one fact remains.  I am losing my best friend....my friend who spends half the days of her week gracing me with her presence.

And maybe what I needed all along was not just someone to take care of my June-bug.

Maybe I needed someone I could talk to and share all my deepest secrets with.  I needed someone who would uplift my spirit and encourage me to be a better person.  Maybe I just needed someone to listen to all the things I've been scheming about in my head.  I needed someone to tell me how awesome I was. And then maybe I needed someone to tell me God loves me even though awesome I was not. I needed someone to just show me some really cool new songs, or bring me a salad from TASTE or an ice cream treat. Maybe I just needed someone to go on a walk with.

Maybe I just needed a friend who would learn to understand and empathize.

Someone who would choose to walk in my shoes, choose to grab hold of my family and not give up on the hard ones.  Because the hard ones are the easiest ones to give up on.

Thank you my dear friend.  You are the gift that I am passing on to Norfolk General.  You are entering the dark and weary land with all the hard ones.  But I know you.  You won't give up on them until you have won them over with your joyous smile, engaging personality and your contagious laughter. You will pursue them until you have found a thread of hope, pulling it gently until they see a glorious rainbow. You will nurture and nourish their souls until they feel full, understood and even loved.  You will set their feet on a higher place where they can reach out and possibly touch heaven.

You have turned my world upside-down, Katharine.  I love you forever.
I refuse to say good-bye.

The Sun came out

It was a few days ago. A day where your lips are chapped and you keep licking them because you're too tired to go digging through your purse to find the Chapstick at the bottom where the telling receipts of the day hide and keep track of all the secret places you've been.  Places like the emergency room, the hospital cafeteria, the drugstore, the grocery store, and one last place: the chiropractor's office.  Because maybe, just maybe, when you're on vacation, a random chiropractor can fix your crippled back, give you fifteen minutes of respite, and heal you and send you on your merry way so you can pick up your baby girl once again who is not such a baby girl anymore.

It was the Eve of this night, January 2, 2015, when I was driving the dark streets of Connecticut on a "holiday" that was anything but a holiday where I slammed on the brakes, because I stumbled upon this.

This was enough for me.  The peace beyond understanding rushed in and I knew things were going to be okay.  That we would all live and thrive through the hard.  That the hard was good.

I have a story to share.  About twelve days ago, we packed up our family and headed to Connecticut to celebrate Christmas.  A few weeks before we left, June had started experiencing some resistance to sleeping, and lots of waking in the night.  She had also started thrashing more during the day, seemed generally unhappy and was biting her hands a lot.  Spitting obsessively.  Playing with her spit obsessively.  She seemed considerably anxious.  We had started giving her tryptophan during the day which calmed her, but then the nights would come and she couldn't sleep.  We arrived in Connecticut and things got progressively worse.  We took her off the tryptophan and no amount of melatonin mixed with hydroxixine and essential oils diffused would touch her insomnia.  She started taking about 2-3 hours to get to bed, and if we put her in her tent, she would thrash and bang her head against the poles until she was bruised.  Once she was asleep, she would awaken around 1 am to do it all again.  Often, she would fall asleep at 4 am from sheer exhaustion.  We had to stay up with her so that her head wouldn't hit the wall and she wouldn't beat her body with her hands.  The days were hard because she was tired and cranky all day from lack of sleep.

By day 10, things had taken a toll on her, on us.  We were, essentially all suffering from her insomnia.  We were yelling more, short with our kids, short with each other.  Forget love. We were jumping through the hoops of the day, and as the darkness would approach, June would somehow sense its haunting and start whimpering as night time consumed her.   

January 1 rushed in and June seemed extremely upset.  She was crying on and off all day, not eating a whole bunch (very strange for her), and had started the same routine during the day that she was doing at night.  Thrashing, head banging, crying, and of course, she couldn't tell us what was wrong.  I gave her ibuprofen thinking that maybe she had a sickness of some sort.  She seemed a little better, but then around nightfall, everything started over again and no amount of consoling or ibuprofen would help.  At around 7 pm, I was holding her and she flew back and knocked my chin and I felt my lower back give out.  In the next hour, we made the decision to bring her to the Emergency Room.  Something must be wrong.  For four hours in the emergency room she did this:

My sister Christine and my friend Kat were taking turns holding her down because we couldn't hold her anymore because all of our backs had given out on us.  I watched helplessly and whispered to her while the doctors and nurses ruled out any real medical issue.  No offense to the medical world, but I could have done a better job examining my daughter than the first doctor.  Her recommendation was to give her benadryl. Ummmm...okay.  Next. Her supervisor thankfully was quick to see that something was quite wrong and ordered an initial dose of valium.  She didn't respond to that.  An hour and 20 minutes later it seemed obvious to give her a second dose.  By the time they got in there to administer the second dose, we had finally gotten her to sleep by all three of us patting her at the same time and pleading with God to give us some respite.  She passed out from exhaustion.  It was 1 am.  My husband arrived and we wheeled her up to the PICU where they could watch how she responded to valium for the evening.

She woke up at 4:30 am.  Although she was tired, she seemed pleasant and ate breakfast.  By noon of that day, we were out of there with an rx for Valium and a plan to get us back to Virginia.

Since we got that initial prescription, things have gotten slightly better, in that we have a heavy-duty drug on our hands which can promote sleep.  The question is, how much, when to administer, and a guessing game of sorts.  Last night she finally got to sleep sandwiched between my husband and myself, at 12 am with a second dose of medicine.

I want to thank you for praying for our sweet June bug.  Tonight, January 4, 2015 at 7:00 pm, hundreds of you across the country prayed for us.  That would have been enough. That you chose to stand with us and care so deeply.  I'd like you to know that tonight a miracle happened as you all stormed the gates of Heaven.  It was the sweetest bedtime ritual ever.  I have never seen June go down that easily....not for years.  I prayed over her as she slipped off into dreamland, hot tears rushing down my face.  The warm wind sent a chill down my spine.  I could feel God's hand on her tender body and over my heart.

                         And I could sing it from the mountaintops:

Stooping Low

I found out at least TWO amazing things today.  The first one is this. The city of Norfolk NOW allows a person to raise chickens in his/her yard with a permit.  This information was received from a VERY reputable source and I can assure you that she does not lie.  How very very very exciting! All these city chickens roaming around is gonna put Fresh Market out of business.  I am positive that I will join the citizens collecting eggs from the back corners of their yards as soon as my handy hubby builds me a cool coop.  I CANNOT, however, guarantee that he will not move into the coop instead of the chickens...thus, his obsession with tiny houses continues. 

And the second piece of news is this.

My friend came over to my house today. My friend's husband JUST HAPPENS to work at June's school.  This husband JUST HAPPENED to be in the same area as June today because it was picture day, and he just HAPPENED to see June- Bug waiting near the picture line on the floor, probably wildly stimming, chewing on the plastic comb they give you, and messing up her perfectly smooth hair and adorable peach and white polka dot blouse. 

Well, THIS HUSBAND reported some VERY shocking news. 

THE PRINCIPAL, (YES I SAID THE PRINCIPAL!)

was on the GROUND playing with JUNE BUG!

THE PRINCIPAL (YES, I SAID THE PRINCIPAL!) who has 1,000 students to look after and, who consequently must make 2,000 parents happy was on the floor exchanging giggles with my daughter!

I cannot believe it.

Was he sure he saw the right woman?

I have been believing all along that this school was a good fit for my little MD (multi-disabled) Kindergartener, but that information, right there just sealed the deal.

So, even though I don't personally know you, THANK YOU Ms. Nichols.  Thank you for coming away from your desk, leaving the piles of papers and files, cyber-files, parental concerns, big computer and shiny phone, and taking time to sit on the GROUND with my June Bug.  Thank you for INVESTING in the child who will never score well on any written test, or make you proud with her academic or creative achievements.  THANK YOU for reaching out and reaching low, so low that you had to sit down on the ground to go out of your way to make my child feel special today.  THANK YOU for loving her just because...
even when you think nobody is watching. 

Crossroads

This morning I sent my first-born baby girl off into the unknown world of Kindergarten.  She woke up early like she had been waiting for this day all her life, gobbled down her usual breakfast of oatmeal and waited patiently on the porch for the bus....

Like she knew exactly what was coming. As if to say, "Yellow bus, where have you been for the entire summer?"

And here she is with her cute outfit and same-old, same-old backpack and matching lunch box for the third year in a row....because I am one of those Moms who refuses to buy a new backpack every year.  Or maybe I should say, I GREATLY resist the temptation to buy a new backpack, because when Pottery Barn Kids and Hanna and Garnet Hill Kids catalogs shows up on my doorstep, I can assure you June and I pick out a new backpack in our heads. 
Every year. 

And so June got on the bus with great ease and I about cried because her bus driver and the attendant were so nice and she had her own little princess seat while her wheel-chaired fan club in the background sort of smiled and nodded sweet and gentle gestures her way.

So we quickly sent off big brother James and got Char out of this ridiculous white onesie (which she always seems to be wearing every morning lately) and were on our way following June's bus to school.  And of course we passed a thousand buses and Char assured me that June was on every single one. 

James, First Grader this year, Charlotte, pre-school 2 days a week. NOT in that outfit.

And we arrived at Crossroads Elementary (K-8 in case you were wondering) and my friend Kat said, "It looks like a big school for a very little bug..."

The word Crossroads means: a point at which a crucial decision must be made that will have far-reaching consequences.

And yes, it was BIG, but to me, it looked like sunshine, and fun, and everything wonderful and academic tightly wound in a colorful candy wrapper. And I watched her get off the bus, walk her way to her classroom confidently, with her precious teacher and two attendants, and I secretly rejoiced because I felt like June was the lucky one this year. Or maybe she was placed here, in this school, with these teachers by the Almighty Loving God of the Universe.
She is going to LOVE it here.

Seven new friends

But first...these lines on the carpet.

This chart below pretty much sums it up.  Yay! for happy days.  If somebody can tell me what "try harder" means in a room where most of the kids are disabled, let me know. ;) I have my theories...


Happy First Day Friends!!

And now on to other things...Like potty training this joyous firecracker as she potty trains her doll.  Mercy.

Rise Up

A year ago my friend gave me a phone number. She said, "You need to call this woman. She has a daughter who reminds me of June."

I wrote the name and number in my journal and said I'd call.

A few weeks later, she asked me if I had called her yet.

Again, I told myself that I really should call.

I never called.

Yesterday I learned of the tragic events of a woman in Norfolk who took her own life and then took the life of her daughter, ending it all. All the pain, the misunderstanding, the grieving over what could never be. All the back-breaking moving of a body, the emotional planning, the Super-Mom facade. Gone.

This woman was the woman that I didn't call.

I sobbed almost immediately when I heard the news. Not because of guilt. But because the whole story was much too close to my heart. Because I never did meet her. Never shared a moment of understanding with her. And I knew she was a woman probably much like me. I knew she went to church, had friends, seemed happy and put a smile on for the general public.

I am assuming a lot here because I don't know her story.

But this I know.

We, as a community need to understand how hard it is to raise a child with special needs. Many times we, as Special Needs Moms look super confident and friendly, because how else would we want to appear if we were seen in public?

If I have actually gotten it together to enter the world with my very different and unique daughter, then you can bet your bottom dollar I want everyone to like me, to be my friend and also think I'm generally amazing and wonderful. I want you to think that I could meet you by the fountains at the zoo on a Friday morning for fun and games. I refuse to look like the needy, sobbing Mom in the corner with the wildly stimming and special needs daughter. Because who would want to spend time with me then? Who in the world would want to get to know me or my strange family then?

Sometimes I wonder...
How many more years can I enter the public realm successfully?
How long can I use the changing table in the public museum for my daughter who is five years old?
How long can I push her around in an umbrella stroller before I have to switch over to a wheel chair? The answer is...about 5 more pounds.
How long before she gets too loud to take to dinner, where her thrashing is too hard to control while she is slung over my knee at the dinner table?

So, I'm begging you all, on behalf of the special needs community to rise up and help the ones who seem to be happy.

Although you mean well, please don't empathize by saying that your child does the same exact thing. He or she may actually do the same thing...like, for example, chew on a toy. But it is a stage. He/she will outgrow it. My child will quite possibly chew on a toy into adulthood.

Although you mean well, please don't offer to help unless you really mean it. Don't say in passing, "Hey, I'd love to watch your child one day so you can go get a massage."...and then never call.  Actually, you can in fact, pick up the phone, call, and say, "Let's schedule a day where I can come and watch your child for the afternoon. Right now. Look at your calendar."

Although you mean well, please do not invite me to your house and say there is nothing that my child can get into, and that I won't have to watch her. I will. I promise. I will hardly get to talk to you. You may however, invite me to your house and watch, interact, hold and love on my daughter for a while I follow you around and we chat about things that matter.

If you see a special needs child in public, it is meaningful when you kneel down and greet him with a smile and words, knowing full well that it may not be reciprocated.

If I look like I need help, I needed it 5 minutes ago. Take one of my children's hands and walk me to the car, open the door for me, take a bag, fill a plate, feed my daughter.

I know you mean well, but please don't recommend a new drug, book, therapy, food or vitamin that my child should or shouldn't be eating. I can assure you that I know my child well and I am doing what I believe is best for her.  I also know myself and what I can handle in the world of remedies.  I am busy being a good Mother. Cooking meals, cleaning the house, reading books, wiping butts, potty training, folding piles of laundry. Can't be therapist, teacher, friend and doctor too. I know there are moms out there who do that. I'll admit to you right now that I am not one of them.

If you MUST recommend a remedy, pray about it for six months and then if you still feel the urge to share some info with me, then by all means, share it.

Please do not compare my child to other children with special needs. Do not tell me that you know of a child who didn't talk and all the sudden she is talking because she did x, y and z. Not helpful. One of my attendants said it best. My daughter has something called elfism and they are still trying to figure out her treatment plan.

When you see a child out in public who has an outburst, try not to stare or judge the Mom. I know it's hard. I do it too. You have NO idea what is going on with the child or the parent. You know what you can do? Pray for the Mom or Dad. Pray that he or she will have patience in dealing with the situation.

Do what one stranger did. My husband was at the beach playing with my daughter in the sand and water, obviously struggling to keep sandy handfuls away from eyes and mouth.  The stranger pulled my husband aside and said something like..."I see you. I see you loving on your daughter. Thank you and bless you".

I want you to know that I am not necessarily speaking of my general experience...although, all of these things have happened to me.  I have had an amazing support system of friends and family and feel completely blessed most of the time. But other times, I grieve for my life without a special needs child, or I can certainly be at my breaking point. I am the Mom who has to be "on" at all times emotionally. Many people are watching me. My kids, my attendants in my home, therapists in my home, educators and social workers in my home, friends and neighbors in my home. By the end of the day I can be so drained from just being Super Mom. Especially in the Summer. Especially. 

Thank you. Thank you. Thank you for those of you who love my June bug on a regular basis. You are pouring in, friend. And filling up my cup. You are.

East Beach, July 27 (by Kim Olson)