Showing posts with label Motherhood. Show all posts
Showing posts with label Motherhood. Show all posts

Thursday, May 15, 2014

Would you like some comfort with that chaos?

Living and caring for a child with many disabilities is like living in the middle of a busy intersection blindfolded.  You don't know if taking some steps towards the side will be safe or result in a thwarting strike knocking you off your feet.  Most people sleep at night, wake up in the morning, resume whatever it is their life requires.  Some people know, for instance, that they will shower by 6:30 am, and be to work by 8:00am, have their lunch promptly at noon and leave their place of work at 5:00PM.  They know that they will proceed home, have dinner, watch TV and go to bed.  Throw in some kid stuff, or adult stuff here and there.  Whatever. But with my Daniel I go to sleep not knowing if I will be up again three or four times in the night.  I wake up and have to assess if he is well enough to go to school, and I have to wait to make sure the nurse gets here in time for the bus.  Sometimes the days plans change on a dime, and next thing I know I'm in an ambulance rushing off to one of many hospitals that we use.
 
Does the brain function well in chaos. No, not really.  I think as women, and as Mothers and as people we strive for the comfort of knowing where and when we will rest our butts on our sofa.  Mothers are often talking about the balance.  Finding the "balance" in their lives of work, kids, etc.  Balance is good.  It keeps us level, and when we go off balance we go wacky.  We get manic or we get depressed, overwhelmed and exhausted. 
 
Every once in a blue moon I find a few minutes to sit and think, like now, and I feel like I am roaming through a long hallway of doors, and those doors all have stuff to do inside them, but I don't know which one to open or go into.  Its as if I'm wandering like a lost soul, and then suddenly I am back with Daniel in his room doing "special needs Mother stuff".
 
Tuesday night, May 13, 2014 Daniel was doing well, and nurse Marques was getting him ready for the tub.  Suddenly his temp starts going up up up. by 8:00pm he was 103.  This is the kind of stuff that unravels my warped need for comfort, and balance. Where was I when Daniel had this freak episode which included a significant drop in his oxygen? I was next door at my neighbors house. She lost her 54 year old son, completely unexpectedly and John and were paying our respects and drinking tea. After that,  I thought it would be a normal night at home.  By 10:00pm I was sitting in a crowded emergency room waiting for Daniel to be seen, watching him feverish and breathing laboriously..
 
Its like that.  Unpredictable.  Unplannable.  Chaotic.  Raising Daniel Hasselberger, you see, is a lesson in walking on a balance beam.  With unlimited amounts  of wobbling and bobbling. 
There is very little time in my life for peace and relaxation and friendships.  Having more of that may restore balance in a life that has been falling off balance for so long.
 
I am, to many, a wanderer.  Following the tracks of a terrible condition that afflicted my child.  And quite quite literally I never know which way they will turn. 
 
 
 
 

Friday, February 7, 2014

Grateful hearts, prayers, loving gestures and soup

Today, is February 7, 2014

As a Mom I am often finding myself 
in a flurry of thoughts, ideas, concepts, things "to do", etc when the morning coffee has ignited my awake circuits.  And then the day hits in all its glory.  Get in the car, go do this, go do that, get back home, walk the dog, train the dog, make phone calls, clean dishes, laundry, get Daniels laundry done, make more calls, and then kaboom!  That ignition switch turns off and all of those wonderful little creative animals scurry back into the crevices of my brain to hide away until I can handle thinking of them again.

I get tired very easily.  To be a busy Mom is a giant job in itself.  And then to be a Mom of a 16 year old boy with a deformed brain, seizure disorder, gtube feeding schedule, daily therapy routines, nursing, doctors appointments, diagnostic tests, equipment, medication, and endless worries puts me right onto the ledge of "how much more can I take?"

I can't believe its February already. I truly do not understand where January disappeared to and honestly think there is some kind of cosmic conspiracy going on.  Then again, my memory has been questionable and my focus right there with it.  Those moments frustrate me when I see people in the grocery store who I definitely know and yet can not for the life of me remember why.  Usually hours later it hits me, OH YEAH, that's Jonie Smith, little Johnny's Mom from baseball 5 years ago. 

February has been walloped with snow this year.  This week as a matter of fact and that has been nothing short of a giant white chilly blanket of depression.  When you have a 4 week long sinus infection, and chronic fibromyalgia, the cold just stabs you like knives leaving you longing for a hot fire in the woodstove and someone to hug you. 

Its been cold too.  Not just normal winter cold but "ouch" the air hurts cold.  As I walk the dog along the trails we carve out for his little legs in the snow, the one thing I always notice is how brilliant the stars are.  Beautiful really.  I think it is the silence and the lack of leaves that makes the stars more pronounced.  Tonight the moon looked about half size and the snow was almost blue. No need for a flashlight.  My point, you ask?  By finding and holding onto the beauty and peacefulness I am able to sustain myself for the 5 minutes or less that I allow little Henry to pee or poop.  His feet get too cold.

February is suddenly here spitting out red hearts and chocolate displays for Valentines day.  On my desk of mess, lies a fold called "blessings basket".  Its pretty fat at the moment. It contains copies of checks, cards, gestures I've jotted down, and basically everything and everyone that I want to thank. People who have blessed our life with their kindness and loving gestures back to December, maybe even all the way back to Daniels WONDERFUL Birthday Card shower.  Each time I go into CVS or Big Y I look for pretty thank you cards, and pick up one or two.  I have lots of little kind words pop into my mind, and have so many things to say.  But I can't even get myself to comb my hair every day. Getting through this blessings basket is now my biggest goal.  I saw a billboard today with someone I know advertising their business, and thought to myself, wouldn't it be nice to just put Daniel's picture up there and say "THANK GOD FOR ALL OF THESE WONDERFUL PEOPLE WHO CARE ABOUT US"

Was it a pastor at church that gave a sermon about gratefulness that just stuck in my brain of molasses and fleeting thoughts?  Probably. The extremely important reality is the actual grateful heart that is inside my achy body.  Very grateful.  As I am writing this very blog, I wish I could record the sound of Daniel laughing hysterically on the monitor.  He is just happy, and looking around, like a silly teenager having a giggle fit because they are just so exhausted.  He has been strong this winter.  God's hands have held him with love and protection because not a single cough or fever has presented.  I am so grateful. 

There have been some spectacular miracles in my bubble, or on my "planet" this year.  Many of those miracles are simply people right here in Newtown and Sandy Hook.  People who read my words and realize that they are simply an expression of the love I have for my family.  It is difficult beyond measure to raise children like Daniel.  Some people have a hard time accepting help, accepting kindnesses from others.  But I know that God calls us to care for eachother.  Kindness counts and being thankful counts.  Through caring for others and through receiving care the concept of kindness is nurtured.  It is those who have least that often want to help others.  A thankful heart will do that do a person.  Many people just turn a cheek, because they have their own world to look after.  Each one of us has something.  A sick relative, financial problems, loss of a job, and the list is endless. 

I am digging deep for the words here to express the fact that God gives so much to us.  He blesses our lives with each other, with this place we live, with the food we eat and the clothes on our backs.  Who are we to hold onto everything and turn away from each other when there is need?  I do not just mean giving things, I mean giving of compassion. 

Daniel is a challenge for me.  I am 47 years old and I have dedicated my life to provide him with a life.  I am blessed to have him and he deserves my undivided attention and care.  All of my friends out there also with severely disabled children will nod a giant virtual nod when I say that the world does not help those who sacrifice themselves for the sake of others.  The money is sucked away from some big greedy money vacuum.  The cost of what medically fragile people need, and the stress it puts upon the families causes the unraveling of many families.  Sometimes there is barely money for food and gas.  Other times there is such lack of sleep and illness on my shoulders that I can't function.  There certainly are many days that I just fall down to my knees and pray to Jesus that I can't do this on my own.  He tells me to step out on faith.  I know He is with me.  The spiritual world is all around us.  We can see more miracles with a heart of gratefulness.  Try listing the things you are sincerely thankful for. That list will start with superficial things, and as you go on and on it will evolve into concepts, feelings and emotions.  Suddenly you find yourself thankful for someone who you have never thanked!!!  By thanking them, the karma is fed and miracles can continue. 

To end with a moment of thanks, my friend dropped off a bag full of frozen home made soups today at my door step.  It may sound crazy, but it was very exciting for me to have so many home made soups. I'm not the greatest cook.   But many hands made them, and I think that there is some beauty in that generosity.

We will continue on in the difficult journey.  I know that my pile is high and my burdens are growing.  We don't know where life will take us, because there is no savings plans, or retirement programs, or plans for the future.  There is only tomorrow.  If tomorrow Daniel stays healthy, happy and engaged in life.  Then that has to be enough.  Anything extra is a bonus.  We will probably never have that new kitchen, or leather living room chairs, or get rid of the 1970's wall paper.  But its only a physical house.  As much as I struggle with want, I aspire to being a person who is much more eager to give.  and to thank others.

Tomorrow I will try that Tortilla Soup.  Sounds delicious.














Tuesday, October 8, 2013

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".

Thursday, June 20, 2013

The lighthouse is there, I have NO DOUBT. But Depression will make you jump before you see it

today I have a million things to do but something is heavy on my mind.  Its Thursday June 19 2013.  Raising Daniel, in my life, has been a personal trial of ups and downs.  Emotionally, I have battled with my depression demons, at times it has even gotten to the point where I was almost lost to my sanity.  But deep deep within me a voice calls me out of this sad, dark and panic filled place. I pray for help. I talk and I write about the feelings inside me.  I make the call to my doctor.   I go immediately to seek medical care and counseling.  I have a flashlight to help me out of those dark woods, its batteries are called, Sarah, Daniel, Thomas, and Julie.

Or I have the image in my imagination of the ocean. We are a boat on the ocean and the world is filled with fog. Someone is screaming with anxiety and anger at me because I dropped the navigation tool into the water. As I pray and try to concentrate the frustration in the air escalates, buzzes, makes me dizzy, sweaty.  Then the swears and the threats. Someone kicks the side of the boat. I hold Daniel's hand and keep the inside piece of my brain steady. Steady. Eyes are focused, heart is protecting my focus. And there out of the darkness I see that lighthouse.  The frustrated passenger has long since jumped overboard.  It starts to rain and I have an image of that lighthouse guiding us in.  The children and I hovered over Daniel keeping him dry while we cry tears of joy.

I know that a happy life is not intended to be filled with negative despair.  No matter what you have or do not have, being happy is a choice. As I wrote about in the last two blogs.  Choice. Living a purpose driven life is our God given choice.  There is always hope when you have faith.

But sometimes, depression is NOT a choice. We can be depressed, just like we can have diabetes. It happens.  Regardless of the underlying causes such as childhood abuse, hereditary factors etc.  It happens. BUT ERGH!!!!  It is exasperating when I look at my life as a pursuit of great things, of love, of happiness, of friends, of family, of living the God intends us to live, of laughing, of joy, of seeing the beauty in life, of peace, of teamwork and togetherness.  And then once again, it happens, whatever IT is that falls under the category of either anger, pessimism, frustration, disgust, annoyance, avoidance, isolation, disappointment...  etc etc

I know we have all of these things in life, of course I know. I am seriously not that altruistic. But I do know that being able to forgive and surpass and continue on a road of resolution is what sets apart the dark from the light.  Yes, there is the "choose Happiness" reference again.
I am perplexed and astonished that I have turned a cheek to the depression in my home for so long.  There is no way to excuse or explain it. I am raising a severely medically fragile child, a teenage daughter and a 12 year old son.  Their mental health and emotionally stability is critical as life moves forward.

How can I provide them with the most love and support I can, if I face them with depression, anger, saddness, and hopelessness.  That is not, never will be, never can be a possibility.  I have goals, and dreams, and focus. I know who I am, and where I want to be.   But I have a spouse who is not on common ground with me.   How do we tell the difference between depression and abuse if the person never communicates what is in their heart?   I conclude that it is not our job to define the distinction. It is our job to protect ourselves and do the best WE can to follow the road out of the dark woods. Fast. Even run if we can.  Pushing that wheelchair, over the bumps, rocks and roots I will not let it get my innocent boy.

Look for signs of irritability and bad temper. Depressed men typically don't express their feelings. This leaves them feeling irritable and short-tempered.

Look for signs of withdrawal and isolation from other people. Depressed men tend to spend more time alone, watching TV, playing computer games, and pursuing solitary activities.


I am just Julie. Not a doctor. I can not  diagnose. What I can do is research, read, watch documentaries, talk to my therapist, be aware, and be informed. I know what the symptoms of depression are.  I know what verbal abuse is.  I have 20 years of journals that document these events, as well as the joyful events.

When you love someone , you want so badly for them to be your soul mate, your life partner but they are lost deep in a hole somewhere you just cant reach them.  I'm not sure what to do.  The hole is too deep and they keep taking your rope and throwing it back up at you.

So I've read that I need to take care of me.  Take care of the kids.  Teach my kids that they HAVE A CHOICE as to how they can proceed with life and there past does not have to define their future.  Choose Happiness, is the strength to make a choice to step out of our box and into a world of new and bright possibilities.

Some thoughts, and some facts.  If you have someone in your world who you feel is depressed but denies it, rejects it, is getting worse, and won't listen to you.  You are not alone.

Words can hurt worse than physical wounds people!!!!
Whoever made up that rhyme about “sticks and stones will break my bones but names will never hurt me” was just plain wrong! Words do hurt. They can break a person on the inside just as surely as a whack with a stick bruises the outside. People who are subjected to verbal abuse suffer. People who are subjected to it over time can get so used to it that they lose their sense of themselves as people worth loving. If you see yourself in any of these stories, know you are not alone. There are things you can do.


Some Things to look for, things that make you go, hmmmmmmm

·                      Irritability
Almost everyone becomes irritable now and then. The reasons are almost without number. A headache, a bad night's sleep, an upcoming dentist appointment, an unexpected bill -- any stressor can bring it on. But when there is no apparent reason why the least little thing becomes an annoyance, and the mood persists for days or weeks, look for depression as the cause.
·                      Anger
Anger is irritability pushed to an extreme. In depression, a person may explode over what might otherwise be a mild irritant -- or over nothing at all. It may be a brooding anger that comes to a boil over something seemingly harmless. If anger lasts or becomes frightening or violent, seek help for yourself or your loved one as soon as possible.

·                      Worry/Anxiety
This may present in a number of ways. For example, a person may seize on a few daily items and worry obsessively about them. Do I have enough sleeping pills? What will we have for dinner? Did I put gas in the car? Another form is responding to every issue with anxiety. I have to call the plumber -- what if he can't come today? I'd better leave early for my appointment in case the traffic is bad. Or it could be a more generalized anxiousness, perhaps accompanied by the racing thoughts that are more commonly associated wit
·                      Pessimism Pessimism means taking a negative view of everything. It's going to be another bad day. Nobody likes me. There's no point in applying for that job. In the case of depressive pessimism, the negativity is exaggerated all out of proportion with reality: There's no reason for it to be a bad day, some people do like you, and whether you're depressed or not, you might have a good chance of landing the job.
·                      Indifference
Simply put, indifference is not caring. The laundry piles up, the bills aren't paid, and you don't care. A friend calls with a problem, and you can only make polite noises or sit and listen silently, the words not really penetrating your shell of indifference. In depression, it isn't even so much that you don't care as that you can't care.
·                      Self-Criticism
Everyone has flaws -- but in this mood, your flaws seem magnified and you find flaws that aren't there. "I look tired today" becomes I'm ugly. "I've made a mistake in balancing the checkbook" becomes I'm an idiot with numbers. Forgot to feed the cat? I'm worthless. If you hear yourself or your bipolar loved one frequently saying overly negative things about him or herself, let it be a warning signal to you that depression is taking over.

It's important to know the characteristics of depression so that you can identify them as symptoms of a depressive episode when they occur, whether in yourself or in someone for whom you care or are responsible. Recognizing the symptoms as signs of depression can sometimes help to alleviate them; knowing what to look for means you can seek help that much sooner.h mania or hypomania. Anxiety is frequently associated with being indecisive..



So I am trying very hard to come to grips with this.  Because I love my children more than the air I breathe.  But I have reached the brink where I can't connect with the depressed person in my home.  They deny it. They won't take the rope. They won't listen. They won't talk. They won't try. They simply don't speak of it.  And if I "expect them to seek help, I am sadly mistaken."

And I turn focus back onto to the fact that I am raising Daniel, my sweet severely disabled angel, in a home where there is a spiritual battle going on.  This is a battle that I refuse to lose. I have given my worries and fears up to you Lord. You have continued to help me, to provide, to guide.  So Shall I.

When the day of reckoning comes, and they me to rest, I will be remembered as a woman who worked hard to foster the skills of choosing happiness and stepping upward and forward.  No matter what it took.

And that is enough for today my friends.  If you wish to comment or talk, I am always open.  Hugs and please remember that life is beautiful. We are all as important as the sun and the stars and the moon.

This is by no means implying that I do not love the person I am trying to help. I love him very much.  He just refuses to see my view.  Now, what do I do?  What do I do? I have to keep taking care of my beautiful children no matter what.  That's what. Tomorrow I will once again be saying, what do I do? But I will be a little bit stronger and smarter.





Saturday, September 8, 2012

The Daniel Touch

Daniel does this thing, where you go up to him in his wheelchair or his bed...and he looks at you so intently and then reaches with his left hand, extending a finger and touches your face.  It almost reminds me of a blind person, feeling someone face for a perception mentally of what they look like.   Daniel's world is limited, so via vision and touch he needs to be connected.

Sometimes, like just now, he will grab hold of my hand with both of his hands and hold on tight.  That is a really cool feeling.  I love that.

If you have ever known someone who can not speak, or see, or walk, or hear, etc...  you are given an amazing opportunity to see God work miracles that bypass what we are all blessed with...   For example, He gives my son the ability to touch and feel, to laugh and see, to express pain, joy, and sometimes even fear.  Those are his tools...  that God has given him...and the gift is really being able to watch him collect and absorb the world in a different way than everyone else.  Its really beautiful, really simple, and really a miracle.

Maybe people who have normal healthy children would read this, and a funny quizzical look would come across their face. "I'm glad that's not me, whew"    Well, my children are perfect, and I am totally blessed by God to NOT have a special needs child to cope with.   Who knows.   But...  if you are like me...the most annoying phrase I hear frequently is "God only gives you what you can handle"....  that puts me in a different "category" than the rest of the mothers???     They can say that phrase, look from a distance, and relax in the fact that a larger amount of the stress of life was given to Julie..because gosh, she must be strong and I must be a weaker person because I have been given less problems.

Well...   I certainly can see how easy it is for people to raise me on a pedestal like I am a hero or something. But that doesn't make it any easier.  I have tremendous pain, and pressure, and fear...  I don't WANT to have to handle this...but I have to do, what is necessary.

Yes... God gave me a miracle that is Daniel.  But along with a medically fragile child comes the long list: doctors, medicines, seizures, choking, respiratory frailty, pulmonary oxygen levels, changing diapers and more diapers, tons of laundry, transportation, education, integration, advocacy, financial hardship, and I could probably write an entire blog on what comes along with a special needs child.    So WOW...I should feel like a SUPER person because I have been given what I can handle?   Honest to God..who can possibly handle all of this.  I'm just trying to survive.   So I can really take moments to enjoy the beauty that is my child.

I don't want a million dollars, or a luxury car, or trips to the SPA,or designer handbags, or a luxury home...  All I wish for is blessings of security, peace from financial pressure, God's presence in my life, Sarah and Thomas to be able to go to college, food in my fridge, cars that don't have engine lights one...  just a basic life....   Because, that would relieve the tension in the cables that bind me, and keep me from truly doing the best that I can to help Daniel.  More therapies are out there that he could have, he could swim more, and do more...  But I simply can't get to everything...  Newsflash...Julie can not handle all that God has given her.  I just try to keep my perspective.

Yesterday...  I posted on Facebook my need for bible reference to help me deal with my issues.  I have some amazing Christian female friends, mostly all Mom's who shared with me their favorites...and I was so touched to see that God uses us to remember Him and stay connected spiritually.

Here they are....  ready??

  • Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.

  • And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. (Phil. 4:6,7)

  •  i find that praising Him (psalm 150:1-2, Isaiah 49:13) and focusing on His Truths and promises (Jeremiah 29:11, 1Cor 2:9, Matt 28:20, Phil 1:6, Is 26:3-4, Romans 8:28, Heb 13:5-6) divert my anxious heart. also lamentations 3:22, joshua 1:9 (a fav in our house!), 2thess 3:16, Matt 11:28, John 14:27, hebrews 10:23-24, Phil 4:8, nahum 1:7.....and a huge FAV (joel's benediction that always makes me cry) Numbers 6:24-26! be encouraged, sister!!!

  • Isaiah 40:31

  • add one more VERY important one!!! this is the one i was looking for and i know it brought a VERY dear friend of mine much comfort through great difficulty: Zephaniah 3:17: The Lord your God is with you, He is mighty to save. He will take great delight in you. He will quiet you with His love , He will rejoice over you with singing. AMEN!!!

  • Jeremiah 29:11 For I know the plans I have for you, plans for your welfare and not calamity to give you a future and a hope!

  • Hebrews 13:6, "We can confidently say, 'The Lord is my helper, I will not be afraid; what can man do to me?'" Prayers!

  • Praying for you Julie! Philippians 4:4-8 "Rejoice in the Lord always! I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything but in everything by prayer and petion, with thanksgiving, present your requests to God. And the peace of God, which transends all understanding, will guard your hearts and minds in Christ Jesus. Finally brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable - if anything is excellent or praiseworthy - think about such things."

  • Google serenity prayer, the long version is very helpful to me.

  • Julie, remember to breath. Just close your eyes and breath. I believe you know everything you need to know. People care about you and your family and you are surrounded with love. What you need will come from within.



A very wise person told me once to lay my requests out to God, and have faith that we will receive.  To be calm...   and all of these comments above taken from facebook yesterday, all speak to that truth.  I found peace while going through my bible and marking each one, and reading each one.

And today, when I went into Daniel's room, he instantly reached out to touch me, with very intent eyes looking right into my eyes.  And without fear, stress, anxiety, negativity, etc.  I was able to receive his message loud and clear.  And I was able to return it.

All children are blessings...  but compromised, disabled children need us to help them display their gifts and give their talents to us.

"The Daniel Touch"....   is just one of those things.  










Friday, September 7, 2012

Random thoughts Starbucks inspired on a Friday night...

As I sit here, on September 7th...its Friday..  and across the street Thomas is playing football.  And across the table from me Sarah is doing her psychology homework drinking an iced tea...  and across town Daniel  is in his room with Marques (nurse) relaxing after a very long day.

Across my mind go a myriad of thoughts...every day.  Will I be able to survive the next storm?  What is emotional abuse anyways, and maybe my perceptions are skewed, although my inner me tells me...nope...you are screwed.   And what about all of the financial issues, making survival happen while taking care of Daniel.  Will I get what I need to send Sarah to college?  Why in the world does my face hurt under my eyes when I touch it?  So much pain...  so much ache...  fibromyalgia? or just insanity.  Nope, definitely fibromyalgia. Face? Probably chronic sinusitis.

Its all catching up with me...and once someone told me that I could not sustain my pace forever.  Well, I am going to die trying.

Raising Daniel has been a joy beyond words, trickled and sprinkled with bits of this and that.

Across town, Daniel is probably lying in his bed...with his body shaped like a letter C...or maybe an S because his spinal curve is getting worse. And worse. And worse.  And how fair is that for him?  He is the sweetest, most innocent guy ever..and he endures the worst of the worst.  But maybe it doesn't affect him when Daddy yells at Thomas and Sarah...because he doesn't get yelled at.  He is exempt...  because he is helpless.

Daniel has redirected my life, and that is not to say that I understand or even know which direction I am going in.  I am being steered into a foggy abyss...without a clue as to what each day is going to bring next.

Sitting here with Sarah in Starbucks, while Thomas practices football, while Sarah does her work, while Daniel is probably watching a movie at home...  just sitting here thinking how good this coffee is.  And how much I really don't want to be home right now.



























So now I feel like going into my pictures....  lets see what I can find...and I'll post them here... in my randomness of thought...   Yes...I seriously feel like a mother gone insane.  I hope you enjoy the pictures...

It is a tough role that I face...that we face. Day by day...minute by minute...