Depression, when sad doesn't need a reason

One day you sit in your house and feel like there are a hundred things you should do, and people you should talk to, but you are frozen.  With no particular reason, the world just feels empty and flat.  Its hard to motivate yourself to do anything.  So you try to sleep.  Then the pretending kicks in. Pretend to smile.  Pretend to be busy.  Pretend to be "OK".  But you are sad.  Sometimes.

The medications help most days. But not all days.  Its just not that simple.  Most people say they understand but they really don't.  They expect that you should be behaving normally and being cheerful if you don't have a reason to be sad.   But even with reasons to be sad, those reasons are not necessarily why a person can feel like they are in a thick cloud of goo.  Just stuck.

When your brain doesn't have the right chemical balance, your perception of life is a direction reflection of what your brain is doing, or not doing.  Depression is not a choice.  It is an illness.  It makes you feel like a failure when you realize you have forgotten to do so many things of importance.

And then you reach hard for that ability you have worked so hard on. To meditate and be in the present moment.  To find joy and love all around you. To be grateful.  Its all work, but one slight change in perception can truly make a difference in your day.

I imagine everyone who suffers from chronic depression has people in their life who simply don't understand, or believe that it is even a "thing".  They consider you lazy, or "out of it", and tell you to "cheer up",  and "take a pill".   So you go to your therapy session, and after years of therapy you sit down, take a deep breath and wait for whatever is ready in your head, to just expel itself.

It does not mean you don't care about people.  It does not mean you don't love your family.  It does not mean you are incapable of living a happy functional life.  Because with treatment, and care, you can.  But it does mean that there will be rough patches.  And it does mean that there will set backs and things that just derail you.

The battle with choosing happiness over darkness is a daily game for someone who is depressed.  When you can win most days, you have developed great skills, and the medicine is helping.  And maybe you will be able to go for a walk that day, and actually get through your piles and piles and piles of insurance paperwork.  Feeling accomplished.

Other days, you have a crazy strong desire to be creative, to paint, or play the piano, to write poems or songs, to experiment with make up, to color in a coloring book, to buy a guitar even though you don't know how to play but want to.  Reaching out of your funk to have faith in "what can be"  Just allowing "whatever" to guide you.  Its all a possibility.

In some ways, depression is a way of slowing you down.  Because life can flitter by, just like that, and all you have done is paid bills, cleaned your house, done your work, and gone to the doctors. Day after day.  And you have not helped anyone, or laughed much, or created anything, or made a change in the world.   Depression requires that to make a happiness choice, you have to push through the walls of that "BOX" that society puts us in.    For me, I did that on the day Daniel was diagnosed as completely disabled.  My BOX blew up actually.   So I am making my way.

I never mean to forget things.  I love so deeply and care so much, but sometimes I forget to tell you.  I want to be better at that.  Sometimes depressed people hurt and anger the ones they love the most.  And they have such guilt about it.  Sometimes depressed people seem like the masses...  moving along like lemmings headed toward a cliff.  But they step out and turn around, and go back home.  They put on the TV and watch a Nicholas Sparks movie, and cry for 2 hours when they should be productive.   Altered reality I guess.  But it doesn't mean they are crazy.  They are just coping.

Some people in my own life do not know the extent of my depression, nor do I tell them.  Sometimes I talk about it.  But mostly, now, I deal with it.  My spouse will not come to my counseling, despite years of almost begging, because he could really help in my treatment.  But I think he's more depressed than I am, and afraid to face his own reality.   And he thinks its a stigma and that medication is a weakness.   So his anger stays, and my depression heads to the doctor, and the therapist.   Everyone has their own coping choices.

On my journey, I choose to find joy.  On the worst of days, I force myself to be grateful and joyful for a God who loves me, and a family that adores me.  There is joy everywhere.  With each little moment of joy, I find a peace that is warm, because its like following a path.  Or follwing little lights in the forest, they lead you to a new perception and a new way of looking at things.  And that leads you to more joy.  If you choose to follow, you are choosing to move towards light and happiness.

There are negatives and positives in life.  Sometimes, the things we think are the most positive, are actually toxic and dangerous for our hearts.  Sometimes things that seem hopeless and negative, are really opportunities to grow, to change, to learn, to feel joy, and to connect with humanity.

Finding joy in the journey.  Every day.  And sharing it. With you.

Moms misery

In this journey called life, sometimes you find yourself not well. I have been struggling with so many ailments over the past few months. Sinus infection being the worse.  

Tonight I have a roaring headache. I am aching all over with sharp painful twinges. Lifting Daniel is tough. Focusing is tough 

I am starting to think i am losing my mind. But I know I am not. I just wish someone would help me.  Help figure why I ache all over. Why even my elbow bones hurt. Exercise they say. So I try. Eat better.  So I try.   

I am on Effexor, Wellbutrin, Klonopin, lyrica and tramadol.  Endless advil. It's a pretty strong bunch of meds. But when I ask if they can cause any of my symptoms I am told probably not b

This is a Mom who wants to get better. I'm sick of feeling sick. I have been febrile since November.  Oh well. 

Tomorrow is a day of new chances to heal. 

Here on Bennetts Bridge Road,Sandy Hook, CT where "raising Daniel Hasselberger" comes from..... please read

It is part of things.  You know, history.  Things that happen.  And as much as we become soldiers of resolving to choose love, and to be kind, history can not be changed.  Each moment, becomes history.  We are creatures, who for the most part, want to live a life of love.  A life where we fulfill whatever our interests are, and support whatever our goals are.  And then really bad things happen.

Here, on Bennetts Bridge Road in the small town of Sandy Hook, CT we had just moved across town and into this house when September 11, happened. My youngest was only 6 months old.  It was such a profoundly horrific thing that all life just stopped as we knew it.  People, being people, got back out there and back to their lives.  But I'm sure there are many, directly affected, who are never ever going to face the day in any way remotely close to how it was on September 10, 2001.  I remember so many shocking and strange memories and feelings from that day.  But I didn't see the smoke, hear the crashing of the planes, see bodies falling from the buildings, feel the earth shake as the towers fell, or stand for weeks with a lit candle praying for a lost loved one.  

On November 8, 2008, a beautiful young man, at the tender age of 13 was taken from us too suddenly.  A neighbor, a friend, a vibrant and smart young man.  He had ridden the bus with my daughter since we had moved here, and she started first grade.  His passing altered her reality and security, for the rest of her life.  I know that there was so much pain not expressed, but it was not supposed to happen.  A 13 year old boy, sudden and tragic, doesn't die and leave his family.  We miss him.  We think of him.  We pass his family's home every single day.  And I recall shuddering and crying for his Mom.  And I recall that my daughter would never again ride the bus to middle school without him there anymore.  History.  A moment in time that didn't just mark an event, it marked a significant change in the path of a plan for a happy future.  Sandy Hook, CT mourned the loss of this child, but time went by.  He has been remembered, and honored.  And will always be a part of who we are.


But, last December 14, 2012, when Adam Lanza, a neighbor, decided to take his family guns and go on a murderous rampage in a quiet sleepy little town, history became black. Dark. Painful. A black hole of confusion. Wonderful families with plans of great futures, losing their 6 and 7 year olds.  And teachers, just doing their jobs and supporting their own families, became heroes, and loss lives too.  All right here.  All within a few miles of where I sit and write about "Raising Daniel Hasselberger".   As I drive down my road now, I pass the home of our friend who passed in 2008, and I pass the homes of 4 or 5 neighbors who buried a child less than a year ago.  And as much as we pull together our healing resolve, trust me, this is an incredible town, it still hurts us.  We all remember where we were that morning, what we were doing, where we were driving.  There is always a sickish feeling when I pass the Sandy Hook fire department and the road that lead to that school.  Because my kids went there.  And it was a happy wonderful place for them.  And its now a black, solemn place, hallowed ground.  Evil walked there.  And no one else wants to.

I was tending to Daniel then, who was very ill and in the hospital.  Now, he is quite well.  And we are so pleased with how much better he is as we face this Fall.

But history, even though it is the past, pulls at our hearts when we least expect it to.  Sandy Hook, CT sometimes feels like just another town, roads I pass to get to the bank, gas station, grocery store, schools...  And other days, there are reminders that you see in the form of remembrance stickers and magnets on the back on almost all cars.  Green.  Green and white for Sandy Hook.   It will never be the same here.  How could it ever.  Nor should it ever.  History changed the road.  But we still live here.

And in my house on Bennetts Bridge Road I raised my daughter, and did my best to give her as much as I possibly could.  Even though we struggle and scrape, her future was so very important to me, to get her out of this town, and somewhere else with new history to make and face.  And in my house on Bennetts Bridge Road, I am watching this young man named Thomas, emerge.  He is brilliant at music, bass instruments likes Baritone sax and Trombone.  Great kids, a part of the flow of the school system, participating in so many activities, mostly related to music and the arts.   And also in this house, we are raising Daniel.  Daniel who will never speak words, who will never express to us how life is affecting him.  He just watches.  His eyes absorb. His ears hear. His hands feel.  And I admire his never ending smiles that come at the times when you think he really should not be smiling now.  All of those surgeries, all of those physical and mental impairments, all of those seizures, and spasms, and cramps, and pains.  And he laughs like he has just heard the best joke ever, every day.

Does history change a child like Daniel?  I don't know how much he is mentally aware of bad things. But I do know that he senses my physiological changes.  He participated in activities designed to help the kids heal and persevere.  He met the Giants!!!  Did he really know who they were?  Maybe.  But they treated him like a king and it made me feel included that day.   Daniel wakes up to the same routine, pretty much every day.  And most of his day is spent monitoring his physical status.   I never knew if he understood fully the change to our community, but I do know that the dogs who came into his room significantly affected him.  There were a few who like him particiularly alot.     And next thing we know, to make a long story shortened, a beautiful dog was donated for him from Ohio.   History made that happen.  Without 12/14 we would not have had dogs in school.  Without Dogs, we wouldn't have seen how much a service dog would change his life, and now that we have Henry.  Well, he is just this beam of joy and intelligence.  He has a calming effect on all of us.   Because raising Daniel in the sense of surviving financially is stressful. Painful. and just plain crappy sometimes.   Henry, has lightened the load, except for the vet bills and the expensive dog food.

History.  Loss.  Pain.  Shock.  Grief.  The sun comes up, the sun goes down.  We who have faith believe that God is holding us up, somehow, as we say good bye.  Like we did to our friend Ryan last week.  Daniel's only friend in school.  So soon. Too soon.  And I am no longer questioning if Daniel is mentally aware when changes happen, I am certain that he is aware.  He has missed Ryan so much.  And the energy from that wonderful boy is now in another form.

So here, on our road, on Bennetts Bridge Road, in Sandy Hook, CT we have experienced 9/11/01,  me being terminated because I had a disabled son, financial hardship in great form, countless surgeries for Daniel, seizures, pneumonias, many late night 911 calls, the loss of dear dear Brennan, the loss of my brother in spirit, Ed Muratti, more sickness and exhausting sleep deprivation, and December 14 of last year.  And now, most recently, the loss of our friend Ryan, also a Newtown student now in Heaven.

So we release an orange balloon into the sky.  We see the balloons marking special birthdays.  We cry.  We try to be joyful.  It's really pretty damn fucking confusing for me, most of the time.   I'm happy, I'm sad, I'm inspirational, I need help, and I do not have a choice.   I must get up.  I must change that diaper and smile at the sunshine filled boy's face.  And carry on.   Because I believe that if we do not live our life with JOY then evil wins.

And joy, is a part of history too.  Far more than we give it credit for.   That is why I do what I do. I am a Mom, with a goal of happiness for the future of my family.  I know its a big pipe dream to think we will ever rise above the clog of beaurocracy and neediness, but as long as I see that smile it puts wood on my fire.

How do you perceive history.  Sandy Hook, CT has become somewhat of an anomoly.  And I end this by saying that losing a child or a close family member is horrible.  And the pain still feels fresh forever, and prayers are needed.  For those who are quietly suffering from what one evil moment in time did to shatter their lives.

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.

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

Mommy's Pain

OK world. This is a real illness.  I was diagnosed many years ago, and it has been getting worse and worse with stress.  Making it hard to do anything.  My family thinks I'm lazy because suddenly during the day I need to lay down and sleep.  I can't help it...it feels as though someone pulls the plug on your energy.

I have pain on all 18 of the tender points...  the worse ones today are my shoulders, back and really bad pain on the back of my head behind my ears. My neck is swollen... and my entire body just aches like I have the flu...  almost constantly.

Caring for Daniel never stops...  but it hurts my body

It gets exhausting that so many people do not recognize that this exists...  they just tell me to exercise, lose weight, take vitamin D, and it will go away.  Those things help reduce the pain of symptoms...but Fibromyalgia is Chronic.   HAH!!!  even the spell checker does not recognize the word.

 Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.

A TYPICAL Julie Chronic Fatigue Nap attack

Symptoms sometimes begin after a physical trauma, surgery, infection or significant psychological stress. In other cases, symptoms gradually accumulate over time with no single triggering event.

Women are much more likely to develop fibromyalgia than are men. Many people who have fibromyalgia also have tension headaches, temporomandibular joint (TMJ) disorders, irritable bowel syndrome, anxiety and depression.

The pain associated with fibromyalgiaoften is described as a constant dull ache, typically arising from muscles. To be considered widespread, the pain must occur on both sides of your body and above and below your waist.

Fibromyalgia is characterized by additional pain when firm pressure is applied to specific areas of your body, called tender points. Tender point locations include:

• Back of the head
• Between shoulder blades
• Top of shoulders
• Front sides of neck
• Upper chest
• Outer elbows
• Upper hips
• Sides of hips
• Inner knees

Fatigue and sleep disturbances
People with fibromyalgia often awaken tired, even though they report sleeping for long periods of time. Sleep is frequently disrupted by pain, and many patients with fibromyalgia have other sleep disorders, such as restless legs syndrome and sleep apnea, that further worsen symp

Anyhow, I just felt like writing about the fact that each day of my life I wake up in pain.... I take Lyrica, Ultram, Effexor and Wellbutrin along with alot of advil...  and once it kicks in I can function.   Depression and feelings related to the stress of home often put me into a hopeless cycle of not exercising and getting tired.  But if I force myself to just walk...get fresh air...  I feel better.   I really know what helps....but I have to manage three children including Daniel.  

It is stressful even just trying to de stress the stress.   And a life of pain becomes a physical life of pain.  Makes you really wonder why sometimes.

Just keep going Julie..  Just keep going.

College and the Future

Lean on me Always Daniel

Well.....  last night I attended a very excellent seminar at Newtown High School entitled "How to Fund College" ....   Sarah is a Junior, and I have to learn all that I can now.  I started envisioning her, walking around a campus, laughing with friends, sitting in lecture halls, studying in a library, and even working...  and I know that my daughter is going to find her place in this world.

And then I thought of Daniel.  Daniel would have been a FRESHMAN this year. And yet he is on a different path isn't he.  He is with us...  just always.  He won't graduate from anything, drive a car, get a job, or get married.  As a man, he will be with us.  And I wouldn't want it any other way.  But the "what ifs" of the future are puzzles that just can't be solved right now.   My sweet boy, who needs me for 100% of his survival...  is not a part of any "plan"....   I am lucky each day that he wakes up, and has a good day health wise.

This is where being the parent of a disabled child really warps reality.  The love they teach goes beyond what you can ever envision when you first learn their diagnosis and the shock sets in.  The journey is riddled with trauma and tribulations...  struggles and sacrifices...fear, confusion, decisions, and so much pain.   And yet when triumph over comes, and healing begins after surgeries, or bankruptcies, or whatever happens...  there is a sense of enormous satisfaction that fuels the resolution to be stronger and even more prepared next time.

Because there will be a next time.

College.  I know we will make it happen somehow.   But for Daniel...  we can not even plan past tomorrow.

And life doesn't care.

Sarah Rose Hasselberger my bright shining inspiration