Wednesday morning, staring spells, the Hallway of doors and keys to resolution

Wednesday 8:01AM     November 6, 2013

Today started out with me so grateful to have Thomas offer to take the puppy outside.  I woke up, said a prayer, found a nice video prayer on YouTube.  Meditated for a few minutes.  Took my daily pile of medications and went to get some coffee.  Typically in the morning, I get up quickly and take the puppy outside right away, then I come in, feed the dog and make sure Thomas is all set.  Thomas is pretty independent.

Before I even take the dog out, I always check on Daniel and change his diaper because 99% of the time its a badly needed situation.  Today included.  After Thomas gets himself on the bus about 6:40am I begin getting Daniel ready for school.  I get him dressed, lift him into his chair and if the nurse isn't there yet I will start the meds and prepare the feeding pump for the day.

Today, Daniel was having one of his "bad" mornings where he cries alot and just seems very uncomfortable. The dog, Henry, was wandering the house but I couldn't get him because Daniel was so upset.  Then I heard screaming of my name coming from upstairs. I will refrain from the obscenities but the dog had a poop accident on the floor next to Daddy's bed.  Of course I was screamed at, did you feed him, did you take him out, do we have any carpet shampoo, get it for me now,  you know.  It's stressful I guess when the dog poops while you are trying to get dressed for work.  But really, why do I have to be the one at fault for every single mishap.

I decided that I didn't care.  And kept tending to Daniel who was acting kind of weird.  And by that time Henry was sitting at my feet looking kind of sheepish.  My gut tells me that when Thomas took Henry out, Henry did not fully do his "business".  He probably rang the "bells" on the door but no one was around to hear it. It's not his fault.  He is 5 months old.

My day flipped upside down in the blink of a flash and now I've got that sad sick feeling in my stomach again.  That "no matter what I do, you will never stop the mean nasty tone and lack of compassion for what you do to me" feeling.   And yet, today I have many things to do, including some work for Allstate and getting groceries.  That's a laugh.

Daniel was looking a bit bizarre once I wheeled him into the kitchen, just a funny look on his face so I took a video of him.  At the end of the video he fell into a short staring seizure, or spell, whatever you call it.  I wasn't comfortable sending him to school today.  It's good to have video coverage because you can send it off to the Neurologist.

Daniel.  I have to get back into the mood I was in, when I first opened my eyes today.  As always I check my stupid bank account, its an obsession of fear.  AND then I prayed via a prayer I found.  Through writing, as I am doing now, I can journey my way back to peace and out of the sad sick feeling that I have.  I will take the goodness of the universe and place it in my hands, hold it to my heart and let it warm me and fill  my mind with positive thoughts.  Positive focus.  Positive healing.  We all have a choice.  Choose Happy?  Choose sad??  Choose ANGRY??  Choose complacent?  Whatever.  As human beings we are actually strong enough to make the choice.

It's not designed to be easy.  Sometimes you even need to get some help to "choose" your way, to a better place.  But denial locks the door to choice.  Seals the deal.  Cuts the life line.

I have to call doctors today, schedule things like a sleep study for Daniel and a review of the EEG that we had done recently.  Positive results will come from my efforts.  I have to do this.  I have to push away the mean things, the hurtful things, the anger, the sarcasm, the lack of money, the lack of resources, the lack of independence, and do ALL that I can, to make the light shine bright on the things I have control over.  And also turn on the light to the hallway of doors where the keys to resolution can open them up, only if, and I mean ONLY if you have a positive heart and a spirit of faith and optimism.  I don't thing negativity ever brings anyone closer to a better life.   So, that being said, I'm grateful that I am a positive person.

Shine bright my light Lord.  Please keep my spirit and my faith strong.  I am only a 47 year old woman.  Not anything more.  It's your love that makes me strong and special.

Hey,I am a Mom, too.

I AM A MOM. 

October 7, 2013

I am a Mom.  I have three kids.  They are 17, 15, and 12.  Lot's of people are Moms.  There are thousands of kids just in my town alone.  And of course, they all have a Mom.  Typically.  Not always.  But they have someone.




Being a Mom to a disabled child in a wheelchair is just another way of being a Mom.  But instead of enjoying PTA (who has time for that?) meetings, going to Yoga class, meeting friends for coffee, and preparing meals for the family I have a long list of responsibilities.  I don't feel like I am always very good at organizing myself, and that is because I feel like I'm stuck in quick sand, gasping and grasping to get back onto the solid stuff.

If you asked me at this moment, What does taking care of Daniel entail, I will spill out whatever is in my head...  here goes! Spilling off the top of my head.  This is not a complete list.

• Gastroenterology for nutrition and stomach related disorders.
• Pulmonology for breathing, asthma, aspiration risks, making sure Daniel doesn't get congestion.  Pnuemonia prevention.  Need to get that Flu shot!!
• Neurology. Seizures. PMG causes seizures.  They are the silent demon.  Need to go for EEG's and blood work, because seizure medications are tricky.  Must monitor blood levels in association with growth.  Neurology is my right hand with Daniel.  
• Endocrinology. The bone doctor, as we call him.  Crap, need to get the blood work there too.  Daniel's bones are demineralized and endocrine helps us monitor calcium and phosphorus in the bones.
• Orthopedic surgeon. We have two.  One is for the hips and general ortho needs.  Two hip surgeries, and the liklihood that eventually the hips will go dysplasic again.  Every 6 months the x ray tells the story.  
• Spinal orthopedic surgeon.  Now that Daniel has a back full of metal straightening up his spine, there are concerns and continual monitoring of the bone fusing, and any possible issues of infection in the site.  Scoliosis would have probably killed him eventually.  But this surgery was risky.  
• Physiatrist.  What they call "Pediatric Rehabilitation Medicine" helps us with muscles and spasticity, recommending and prescribing surgery, writing scripts for equipment needs, and inspecting braces, botox injections.
• Therapy.  Monitoring what is going on with Physical therapy, Occupational therapy, and speech therapy both at home and at school.  Researching additional therapy, music, aqua therapy, etc.
• Social Services and Katie Beckett waiver program.  Daniel's insurance is acquired via social services and the waiver is his title 19 waiver.  I have to make sure appropriate forms and paperwork are completed on a timely basis.  When things are not approved, appeal.  Call for help.  Request nursing hours.  It's pretty confusing because I do not have a case manager per se.   We have two different agencies providing home services.  

• Equipment needs. 
• Supplies ordered. Medications renewed and picked up. 
• Issues resolved with broken equipment from the equipment repair department. 
• Special needs BED breaks, must contact New Hampshire.  Same for the lift system. Prism Medical
• Mri's, x rays, EEGs, blood work, barrium studies, endoscopies,   
• ATG Rehab. 
• Professional Home  Care.
• Byrum Health care.  Order diapers. 
• Buy wipes.  Buy diapering products.
• Lift van.  6 month maintenance.  Repairs. Ride-A-Way in East Hartford is one hour away.  
• School Education program.  IEP's and PPT's.  
• Drooling. 
• Hand biting. 
• G tube changes. 
• Appropriate toys, and activities.  
• Home standing.  
• Apps.  
• Laundry, pads, bedding and keeping his room sanitary.   
• Monitoring him while sleeping. 
• Financial concerns for his future.

WHEW!!!

And hey what about this too.  I am also the regular Mom. Taking him to the dentist (needs antibiotics first).  Hey we have a "regular" pediatrician too for "regular" things like immunizations, physicals, and general illnesses. Daniel needs new clothes for the seasons, and he also needs to have hair cuts and a little bit of shaving.

Watching Thomas play football

And now, we have Henry the "service pup" in training.  A wonderful thing, but to me, like a newly acquired child.  Not just a dog as a pet, but a very special companion trained to be with Daniel and bring him support, friendship, comfort and more.  Woof.

Motherhood is about unconditionally loving your beautiful children, and providing them with everything they need to grow into adults.   Special needs Motherhood, is unconditionally loving and caring for a completely dependent individual for the REST OF YOUR LIFE, or the CHILD's LIFE, whichever comes first.

Daniel, Henry and me always right there...

I am a Mom.  I am a wife.  Since I don't work full time, or much time, or any time sometimes I am expected to manage all of the finances, manage the home repairs, manage the auto repairs, grocery shop, cook, clean, dog duties, go to the dump, and everything else you can think of  regarding a home. I am a Mom.  Just like so many other Mom's.  I don't sleep much.  I have health that is deteriorated. I dream about not worrying about money.   I wish I would stop signing into the bank app to make sure checks didn't bounce. I rarely have "enough".  I always have to juggle.  I hate the anxiety on top of everything else.

I try to make ends meet. (help)  Daniel's expenses completely tip the scale. (help) The "normal" things like lessons, football, school lunches, and new sneakers I could handle.  Look at my list above, it's not even everything. Daniel is an expensive child.  Many things are compromised.

Some days I cry.  Some days I rally like a freaking soldier out to save the world. No going out to dinner, no second honeymoon by the sea, without a nurse I can hardly take a shower.  I love my kids.  One is successfully off to college, she's beautiful and smart.   The youngest is 12.  I'm still going to be doing all of the above listed things, year after year, while most Moms can find new hobbies, new jobs, buy new cars, and shop for clothes I will be sitting here trying to find ways to keep Daniel healthy and safe.  Special Needs Mom's are like that.  Our kids, don't leave.

This Pup is my best friend

Fundraising has helped so much. I need to pay for so much.  As I sit here today, writing this, I am worrying.  Costs here monthly are thousands above a normal home. People who realize the dark hole that this life can be,  reach in try to provide relief.  Sometimes it's money to Daniel's account.  Sometimes its a sunny yellow plant on my doorstep.  Sometimes its a bill from the plumber that says, amount due ZERO.  Sometimes it's just another Mom treating me like a regular Mom, but that doesn't happen much.  Because I'm special.  Inspirational. Strong. A role model. Incredible. Super Mom.  And then SuperMom asks for help.  Do you know that it's really hard to ask for help?  Now I've realized that God sends miracles in the form of connections.   People want to help.  And in turn they develop a relationship with a very special boy and his very not "normal" Mom.  I think Sandy Hook, CT is a nice place to raise my kids, I want to stay.

My children.

Well.  I am a Mom.  All Mom's have challenges. This is my challenge. "Providing Daniel with the best quality of life possible, while also keeping a roof over our heads and a safe car to drive, and food on our table."  

I am a Mom.  I am not super human.  I am lonely. I am depressed. I am hurt. I am stressed. I am happy. I am sad. I am exhausted. I am mad.   I am whatever God gives me as my daily dues.   I love my kids.  My kids love me.  This is not the Me I signed up to be.  It's all just fine, it's got to be.  Please, just remember "me".

My motivational Moment of the day

Facing the Giants - It's all heart from here

Everyday when I wake up, there are giants looming all around me.  Waving weapons of responsibility, advocacy, fixing things, bills to paid, phone calls, piles of papers, things to review, appointments to get to, procedures to schedule, earn money$$$, work harder, house is falling apart, kids need clothes, therapy, college, mortgage, utilities, doctors, supplies, medicine, laundry, manage it all giants.  Giants each wearing a jersey that says what they are. They intimidate me and make me want to pull the covers over my head.

But I have no choice but to face them.  There will be a day when the giants become virtually insurmountable and the decision to push will not be an option.  We are that way, when we protect a child.  Nothing else matters.  And when you have a child with special needs, who is incapable of doing anything for themselves for the rest of their life, indirectly that is a giant you have to dance with for the rest of that child's life.

This video is not about a highschool football team.  It's about the gift of leadership.  This coach pushes Brock farther than he ever thought he could possibly go.  Because Brock couldn't see, and he just had faith in himself and in his coach.   "It burns", "I know it burns!!!".... "It's all heart from here"

I feel like life does that to people.  People go about a life, that is safe, controlled and comfortable.  They have what they need, and they proceed in a routine way.  No disabled people, no sick people...just normal life.   

And then there are the people who face great trials. The birth of a severely disabled child, cancer of a loved one, loss of a child, losing a job and all security, and whatever Giant "Giant" falls upon them.  

You then put your faith to the test.  It's then that you realize the true meaning of  "its all heart from here".  Blood, sweat, tears, pain, and you just keep on pushing.   Putting yourself out on a limb and leaving it all in God's hands you just keep on going.  Then you fall down.  It's give up time. It's time to just say forget it, I'm too weak, it burns, it hurts too much, I can't do it.  And while you lay in your defeat a voice says to you...  "Give me your best Julie.  This is NOT your best.  Get up.  Don't stop. It's all heart from here.  I'm here for you. I am with you. I love you. I will sustain you. Get up. You are better than this. Don't fall to despair and don't fear, because when you get to the end of this difficult road, it will simply turn into another difficult road.  Winding and winding and winding.  But I will be here.  Don't stop.  You will be rewarded.  I know it's hard.  I know.  Don't look at others.  Their choices are different.  You have no choice.  I know you won't stop. 

So, I take a shower.  Drink 3 cups of coffee.  Pull my messy hair up in a clip and sit down at my desk, facing those giants.  Or sometimes I just ignore them.  Or sometimes I just pray for help.  Or sometimes I need help.  But I don't go back to bed. I don't sob into my pillows until Daniel comes home from school.  I make calls to doctors, I call about bills, I negotiate with creditors, I figure out the oil price plan, I order more diapers, I order more medicine, I schedule a 6 month assessment with DSS, and then I go outside to walk my little dog Henry.  We practice his commands, and we take a walk.  I am definitely not alone.  

Faith lifts me back up, every time I remember to ask God to please please please lift me up.  

I can't wait until Daniel gets home from school each day.  It's a gift that he's healthy and with me.  And it's all heart from here.

Florida Morning wake ups Life with Daniel

September 17, 2013

This is an example of the true joy and beauty that is my Daniel.  We had just arrived in Florida, where we stay at a family member's home.  Daniel was sleeping in the guest room, in a queen bed, with me so I could make sure he was ok and didn't fall out.

When we woke up. He was so cheerful.  He was absolutely thrilled at the fact that above our heads there was a ceiling fan.  Of all things.  Just a regular white ceiling fan, turning and turning.  He thought that was just about the coolest thing he had ever seen.

People work so hard to fill their lives with as much materialism as they can.  Forgetting what true joy of the heart is.  For Daniel, its about as pure as it gets.   He likes the breeze of the fan.  He likes feeling of swimming in warm water.  He laughs and smiles when things please him with no reservation at all.

It's beautiful.  He's such a blessing.

PAIN-cre-a-titis Happy New Year Wahoo

December 30, 2012

It is Sunday evening, the 30th of December.  While so many people still have their holiday decorations lit up and plans with family and friends, we are just managing life between here in Sandy Hook and where Daniel is at Yale in New Haven.

This morning he was wretching pretty badly again.  And after just having learned that his pancreas enzyme numbers were trending back upwarrd, it was honestly pretty heart wrenching.  Daniel has been in that room since Monday afternoon December 17, 2012.   And after 2 weeks, his illness still has not resolved.

In the meantime, John has had to go back to work.  And Sarah and Thomas have lives that must carry on.  As I sit day to day in the hospital the days all blend into one, while at home people are helping shuttle my kids around and meals are being delivered.

I recently just learned that a friend of mine, who hired me to work in his AllState office in Monroe, CT passed away suddenly from a heart attack on December 26.  Leaving his two little girls behind.  So sad.

It's a world of hurt out there.  And I don't know about alot of other people, but I still can't seem to lift the fog off of my brain.  It just hasnt been  holly jolly time at all.

This morning at the hospital I met a family whose little baby was born with a severely deformed face. The little tyke had these adorable cheeks, blue eyes and red hair.  So many surgeries, and the results were amazing.  So sweet that baby.

I can't even wrap my head around all of the emotions that I am having as a mother right now.  Especially a mother here in this town where we are raising our kids.  But like I said I feel like its a fog.  A fog I can't get out of.  And I have no time to try because my energy is spent on trying to find out how to get Daniel better.

A random act of kindness came upon me yesterday.  As I sat in my room, watching the snow heavily fall outside, I knew not a soul would be coming to visit us.  Suddenly a bag with a shiny balloon was delivered from the giftshop. In that bag were magazines, cookies, fuzzy slippers, a GET WELL Teddy bear, crossword puzzles, etc.   A wonderful friend, who knows how it feels to spend extended stays in the hospital had it sent to Daniels room.   I am so touched...  I just want to do the same for someone else.

I had wanted to do the same for you my friend Jon Haydostian, but Heaven had other plans for you.  Rest in Peace.

I'm sad and disorganized in my thoughts tonight.  Probably the Sandy Hook syndrome.  I just feel like the sun needs to come out and dry up all the pain.

This hospital stay is a killer on my family.  In everyway possible...but I am home for my two nights of resting and sleeping before heading back to the hospital again. 

So with that said, as I lay here resting without the sounds of beeps and pumps and nurses coming in and out, I will lay my head to rest. 

 

Christmas and a PIC line



At the ER on December 17 wondering what was going on.



Well.  It's December 26, 2012 and we just spent our second Christmas in a row as guests in one of our state's prestigious homes of healing, other wise known as hospitals.  Yale New Haven Hospital has been treating Daniel for Pancreatitis since we were admitted on December 17th.  Just having come home from his spinal fusion, it was not thrilling to end up back here.

In a nutshell, Christmas Eve... I stayed home with Sarah and Thomas. Got the gifts done, set it all up, missed Daniel and John terribly. Lit a luminary to remember the ones lost on December 14. And felt sad as a light mist of snow fell upon the town.

Christmas morning at home with Sarah and Thomas

A light snow gave a Christmas feel to a very sad Sandy Hook

Christmas was special simply because we all have eachother.  Even if we can't completely be together we know that we are going to be soon.  I hope.

Daniel went into surgery to have a pic line put in (into his arm) so we can feed him nutrition through an IV.  He did much better with the pic line procedure than he did with the Central line procedure last week.



After I finally got my PIC line put in on December 26, 2012



9 days in the hospital and counting. 





Amazing Artwork in the lobby




 I've had to deal with many emotional mind fogs.  I was lost and couldn't pray.  The hospital sent me an angel, her name was Kristin the hospital chaplain.  And she brought me a book of Psalms and the New Testament to help me cope.  Its been helping...

Yale New Haven Childrens Hospital.  We have spent most of December here.  A December the world will never forget.   And we are still here.  Daniel is still in great pain with re introduction of feeds.  And this hardship on our separated family is making us grow weary.

"Come to me, all you who labor and are heavy laden, and I will give you rest.  Take my yoke upon you and learn from Me, for I am gentle and lowly in heart, and you will find rest for your souls.   For My yoke is easy and My burden is light."  Matthew 11:28-30

Spinal Fusion Journey to Recovery Days 5 and 6

Friday, December 7, 2012

Here I sit, in another room, in the quiet.  Well, there are some annoying beeps and buzzes coming from somewhere. Typically once you get to the floor after the ICU there is a culture shock adjustment. The level of care is good, but the attention you get is much different.  And that is good, because rest is needed.

Yesterday, I was beyond exhausted and decided to head home to see Sarah and Thomas and get some much needed sleep.  A friend brought by a fabulous hot cooked dinner just as I pulled into the driveway after picking up the kids.  We ate dinner, and all three of us were sleeping by 9:00pm.

Then the coughing started.  From Sarah.  By morning she had been coughing in her sleep most of the night, keeping me awake.  So much for much needed sleep, home was just like hospital.  She had a fever in the morning and I kept her home.  Waited for Thomas to get home and then headed back here to Yale to switcheroo with Daddy.

Daniel had a rough first night on the Pediatric Floor, his respiratory situation went south and his oxygen levels were going into the mid to low 80's (this is bad).  But the respiratory people came in and suctioned him like crazy (this is good) and he began to breath better.

His eyes were itching him like mad, and John didn't know why or how to help him.  They gave him benedryl (which he isnt supposed to have due to how it affects seizures) But he slept well once it kicked in.

I got here today with Thomas who was anxious to see his brother finally.  Took one look at Daniel's eye and told the nurse to get the doctor in here because its pink eye.  I was right, they ordered the antibiotic drops.  Dr. Mom strikes again.

Pain is still an issue, as it will be for a long time.  Daniel will be in his wheel chair again tonight (the reclined one) and its good for him to be up in the chair.  His pain meds are all via the g tube now, and he has restarted his g tube feeds today.

It's Friday, and over the weekend they will watch him, take more x rays, and make a decision about discharge possibly Monday or Tuesday. 

This boy is a super Trooper.  I can tell you that.  I know he is probably wondering what the hell did they do to my back!!!   But, God willing, it all turns out for the best.

I really wish someone in this hospital would silence that alarm before my head explodes.

So its day 6.  Its been a long scary, exhausting, emotional week.  And now we are facing the rehab part at home, which will be somewhat daunting as well due to the fact that transfer requires two people VERY CAREFULLY lifting him so as not to pull at the hardware in his spine and anchored to his pelvis.

I never should have had a large coffee so late.  I'm jittery.  Just waiting for our nurse, Hope (nice name) to come in and help me get him into the reclining wheel chair.  I can't do it by myself.

I'm still wondering how many inches the surgery made him grow. I'm guess about 3 or 4.  It's wild.

Mom and Tom arrive at the hospital to relieve a very tired Daddy