Sticky Saturday

Saturdays are hard.  I'm not gonna lie.  Every time the bus driver drops June off on Fridays, I smile and take June's hand.  He smiles, and says, aren't you glad it's Friday?  I smile and say yes.  But it's not the truth.  I'm actually cringing inside because the weekend is coming and that's when I break my back the most.  That's when I yell the most.  That's when I don't really know what to do with my days, because the routine is missing.  That's when I have to stop June from gagging herself and puking about 150 times. I spend the day re-directing hands, managing expectations and wishing I could clean the bathroom, or at least fold laundry.  My family doesn't know what to do with me and I don't know what to do with them.  Tempers run short.  Days run long and for some reason I feel like everyone's happiness rides on me. Well today had happiness built into it, so there was an easy rhythm to our afternoon that was better than average. 

It was Halloween and also time to carve our almost-rotting pumpkins.  As much as I don't look forward to this event, I knew that it meant fun for the kids and and it especially meant that June would get in a lot of messy, goopy play and PERHAPS, wouldn't spend the night gagging herself while we were out trick-or-treating. Consequently,  June ate MOST of the pulp and seeds in her pumpkin, but when your child is usually eating dirt and poop, raw pumpkin pulp actually seems like an upgrade, so you let her. 

 

The night ended with some good old fashioned fun and trudging around the neighborhood.  I will say that I am emotionally exhausted from refusing Resee's PB cups at least a dozen times, but other than that my little butterfly did very well asserting herself at people's doorways and keeping up with the big kids. She has her Mama's blood running through her veins because she was very concerned that I was eating her candy and, at one point, started giving it to her Daddy to hold, because I was suspect.  I really don't blame her.  

My little June bug spent most of her time in the wagon where she gazed at the super-cool skull light the neighbor gave her until the batteries wore out.  She then wrapped herself in a coccoon in the wagon, begged for smarties and deeply mourned the fact that we could not take the fortune teller's ball with us.  Her mourning continued through her bath, and into bedtime where we are still not sure if she was crying from lack of owning a fortune teller's ball or from an upset stomach due to ingesting too much raw pumpkin pulp.  

My big boy baseball player declared that he had enough candy by 7:15 and that we should head home now. This, of course was music to our ears and we basically sprinted the way back to the homestead, only stopping to listen to our elderly neighbors play a shanty on a guitar and accordian.  

Sweet dreams, to the children across America who are going to bed with full gummy tummies, sticky fingers, and chocolate cheeks. 

We promise to bathe you before church in the morning.

They are breathing

I know I speak for at least 100 parents today.  Probably more.  But I am confident that at least 100 of us are feeling the same way.  Today I watched my friends bury their 10-week old son who struggled to survive here on this earth (read story here).  I have so much I could say about the integrity of these two parents, about their love for each other, for their son, for their God and for the human race, but what I really can't get out of my head is this:  

I have a son.
A   S-O-N
Who is alive and well.
He did not suffer or struggle to enter this world.
He spent hours upon hours nursing, sleeping on my chest, being held and snuggled close.
There were no wires or bandages or pieces of plastic holding his life together.
This son who is S-E-V-E-N talked me into playing monopoly tonight.
He WON at 9:30 pm.
I let him stay up WAY past his bedtime
Just because
His HEART was BEATING.

I have a daughter.
A   D-A-U-G-H-T-E-R
Who speaks with the gentle touch of her hands.
She finds peace in the movement and ripples of water.
This daughter opens her mouth and can take food IN.
Then she actually DIGESTS it and it comes OUT.
Where it is supposed to.
For the most part.
This daughter can SEE.
She can HEAR the music, the wind and the vacuum hum hum humming.

And if that wasn't enough,
ALMIGHTY GOD decided to bless me with
ANOTHER DAUGHTER.
She is JOY.
She has rhythm and SINGS
Strange made-up melodies.
She is stubborn and strong-willed.
She HAS an opinion.
A VOICE.
And she IS ABLE to actually DO the opposite of what I want her to do.
She can MOVE her legs.
She can BREATHE FREELY.


I don't know why I get to keep them here on this earth.
They are not really mine, are they?
Thank you God
Seems too small.
And that's really all I can think about.

Six Years Old

It's the Eve of your sixth birthday, Iva June.  Can I say it? S-I-X.  Not sure I can believe that exactly six years ago you decided to disrupt my world, little one.  How did I know we would take such an unknown and unlovely path to learn to love each other? 

I didn't think you had such a remarkable year.  I must have forgotten what the truth was though because I just looked at all the evidence...the thousands of captured digital shots that sit in my phone waiting to tell a story.

This is what I found.

It was your first year at a BIG elementary school.  Your teacher told me you were such a hard worker, maybe the hardest worker she has ever had.  You learned how to color with crayons, walk to lunch on your own, throw trash in the can and put your book bag away.  

Your teacher also told me that you have a couple best friends.  And that when they are sad you reach out and touch them gently.  You will say goodbye to one of your friends in just a few days, but I know the Good Lord will bring you another one soon.

You had a hard Christmas I must admit.  Something was terribly wrong as you thrashed your way through ten sleepless days and nights. You even spent one night in the hospital.  You were brave and beautiful.  You fought to tell us what was going on.  I'm sorry we never found out.  

 

 You gave Winter a good try this year.  It was the first time you didn't cry to come in from the cold.  You pushed the stroller through the snowy streets and swooped down to touch the flakes.  

You giggled as they tickled your tongue.

You were a rock star at the dentist.  

Something about the bright lights, mirrors and attention makes you feel at home.  

 

You purposefully played outside this Spring.  You actually found some toys and brought them to the water.  You did not stim wildly upside-down on your back and eat dirt and leaves.  Thanks for that...all so I could sit there sipping lemon-water, reading a magazine, painting my toenails, texting my friends, planning dinner and hollering at your siblings once in a while.

You said goodbye to your attendants Miss Kat and Miss Leslie and learned to enjoy your time with two new attendants.  This is hard stuff...getting to know someone new.  I know it takes a lot of work.  It's hard for your Mommy too, June bug.  Change is hard.

You participated in your very first Special Olympics taster!  You weren't overwhelmed by the people or noise and were excited to show off your mad skills! Maybe a future sprint runner??
  

For the first time in our lives we were able to bring you to the beach and you didn't eat sand the entire time...just maybe ten times....BUT such an improvement! This made us so happy!

You also learned how to get what you want by communicating, by guiding our hands to the things you long for...in this case: ICE.  You have become even more confident that we will follow your lead and it feels good to see you adamantly sharing your opinion with us.  

My beautiful child, may you rest well this evening.  May you always see the sunlight streaming through your window, may the water always beckon you to come (just don't always jump in), may your hugglepod and soft music always comfort you, may your Daddy always bring you smiles.  May our God warm your heart so you can feel His presence all around, 

within and beyond you for years to come.

I love you, Iva June.

39

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: