Until I say Goodbye: My Year of Living with Joy is a beautiful story of a woman, Susan Spencer-Wendel, who makes the most of her final days after discovering she has Amyotrophic Lateral Sclerosis (ALS). It is such an inspirational memoir and I wanted to share my favorite quotes with you all here.

One night in the summer of 2009, I looked down at my left hand. It was scrawny and pale. In the palm, I could see the lines of tendons and the knobs of bones.

I held up my right hand.

It was normal.

“You need to go to the doctor”, John said.

The doctor thought it was carpal tunnel. I went to then see a neurologist.

And thus began my year long odyssey of doctor’s visits. Of attempts to explain my withered limb. To find an answer other than the one John found on his own: ALS.

“What’s that?”

ALS, more commonly known as Lour Gehrig’s Disease, is a neuromuscular disorder wherein the nerves to muscles die, causing the muscles to die as well. It is progressive, meaning it always moves forward. There is no known cause. No treatment and no cure.

ALS would mean that the death in my left hand would spread to my arm. Then through the rest of my body. I would weaken piece by piece, until I was paralyzed. And then, usually 3-5 years of the first symptom, I would die.

I saw 4 specialists in 6 months. When nothing turned up, I stopped having tests and entered into a year of denial.

I was alive. I had a year. Maybe more, but I knew I had one more year at least of good health.

I determined, right there in the Burger King parking lot, to spend it wisely.

To take the trips I’d longed to take and experience each pleasure I’d longed for as well.

To organize what I was leaving behind.

To plant a garden of memories for my family to bloom in their futures.

Lou Gehrig was an athlete. ALS took his talent immediately.

But I was a writer. ALS could curl my fingers and weaken my body, but it could not take my talent.

This book would become a record of my final wonderful year. A gift to my children so they would understand who I was and learn the way to live after tragedy.

With joy.

And without fear.

If Lou Gehrig could feel lucky, then so could I.

So should I.

The trips were part of a larger plan: a year I dedicated to living with joy. A year in which I took seven journeys with seven people central in my life. To the Yukon, Hungary, the Bahamas, Cyprus.

I cannot walk.

I was rolled to the lagoon in a wheelchair.

I cannot support my own weight, even in water.

John carried me from the chair and held me so I would not drown.

I cannot lift my arms to feed myself or hug my children.

My muscles are dying, and they cannot return.

I will never again be able to move my tongue enough to clearly say, “I love you”.

BUT I am alive today.

Her son,  Wesley, began having behavioral issues at 3. He slammed doors over and over. Flipped light switches on and off compulsively. Ignored everything we said.

Then that Christmas it reached a head.

We took him in for an evaluation and the psychologist said that he had Asperger’s.

“What’s that?” we asked.

It’s a form of autism.

I reached for the Kleenex, already crying.

That was and shall remain the worst day of my life.

I still can’t drive past the building where Wesley was diagnosed.

With the ALS, muscle fibers break down.

In normal people when that happens, it repairs itself stronger.

That is the biology behind exercise.

When muscle breaks down in an ALS patient, it never recovers.

It is gone forever.

Accept the life that comes.

I recently read this article and it resonated so deeply with me that I just HAD to share it.

I see you.

And I don’t mean I physically see you (though I do). I mean I see inside you — I see the storm that’s tearing your soul apart, bit by unimaginable bit.

I can see you because I am you. Not now you, of course, but rather future you. And I’m here to say, I understand.

Whether you’re sitting in a hospital NICU or your car after a visit to a specialist’s office, your mother’s living room or your cubicle at work, I know your pain: a primal cocktail of fear and sadness and desperation and anger.

A feeling like none other you’ve experienced to date.

“They” have told you the second worst thing you could hear as a parent: Your child has special needs. Your child will never walk, talk, hear, see, process, understand, feel, be able to [insert physical/cognitive/functional ability here]. Your child is “not normal”.

And whether your child has suffered a sudden brain injury or suffers from a congenital disease doesn’t matter. The end result is the same: This child’s future is not the one you had imagined. This child is not the one you had imagined.

This child will not have the adolescence about which you have spent hours and days and months and maybe even years fantasizing. This child will need far more than you have anticipated. This child will become at once a trial and a blessing.

You feel guilty for having these emotions, I know. What kind of parent perceives her child as a trial? You should, after all, be glad s/he is here at all. And OHMYGOD you are. You are so indescribably thankful. You are so filled with love for this child, you could burst at any moment. But you are also worried. Very, very worried.

You feel guilty for questioning how you might possibly give this child the care s/he needs. You feel guilty for wondering how you will provide your other children with the attention they require. You feel guilty for fretting about how you will pay for all the medical expenses. You feel guilty for contemplating what all this will mean for your family routine and dynamics.

Some judgy types will jump to curse you for thinking of your child as a burden because that’s all they see in your raw emotion. They will ignore the undying love you have for your child. They will ignore how incredibly grateful you are to have your child. They will ignore your desire to do whatever it takes to ensure your child is safe and happy and healthy. Instead, they will preach about how they would never ever ponder these questions, or worse, if they’re special needs parents as well, how they have never had these same feelings.

Forget them. They’re liars. And perhaps convincing themselves that they would never is just their way of coping.

You will mourn for your child in the same way one might mourn a death. And you are mourning a death, if you think about it. The death of the hopes and dreams you had for your child. The death of the plan you had imagined for your family.

So go ahead and mourn that death. There is nothing unnatural or heartless or improper about it. It is part of the grieving process. It is necessary.

You will be bombarded with “God only gives special children to special people” and “This is God’s plan” from well-meaning people who think they’re doing you a service or simply don’t know what to say.

Grit your teeth and bear it. None of it’s true, so don’t worry. God hasn’t specially selected your child to suffer a lifetime of physical and emotional pain. He hasn’t chosen you out of many to live in agony on purpose. God isn’t that cruel.

You will see parents with “typical” children in the grocery store and at the park. You will see pregnant women smoking or drinking caffeinated beverages. You will see parents abusing their children, both verbally and physically. And you will hate each and every one of these people with all the darkness and malice your soul can muster, for how do they, with their carelessness and ungratefulness, get to escape your child’s and your living hell?

You are perfectly justified in having these feelings. But remember, it isn’t their fault. And while we’re talking about fault, it isn’t yours, either. So indulge in these emotions privately. Most importantly, don’t let them eat you up inside. They are perfectly natural but also potentially dangerous. Entertain them with caution.

Your child will grow and flourish and defy expectation. The cloud of depression and anxiety and despair in which you live will thin. You will feel better. Much better. Many of your initial fears will be allayed as your child comes into him/herself and his/her body. Some of those fears will remain, but they will not burn as hot in your heart.

Some may mistake your poise and grace and got-shit-togetherness as a sign that you’re “over it.” They may expect you to be just as social and able and willing and available as everyone else. After all, parenthood is hard for everyone, so what’s the big deal? What makes your life so much harder than theirs?

Just remember that they don’t know — can’t know — what it’s like to live your life. They don’t know just how many therapists and doctors your child must see, each with his or her own separate set of “homework” assignments to tackle. They don’t know that every play date is just another therapy session in disguise. They don’t know how much time and energy it takes to get one’s shit together every day. Their jobs are hard. But yours — yours is hard in a different sort of way.

The fact that your job is hard does NOT, however, make you a saint or a superwoman or a better parent. It simply makes you capable of doing what needs to be done, just like everybody else. What needs to be done for you and yours may take more time and energy. That’s the only difference between you and them.

Eventually, while you may still ponder the what-ifs on occasion, you will mostly be unable to imagine life any other way. You will be comfortable in your routine. You will be well.

So let me remind you, newly inducted special needs parent, that I see you. I see inside you at the storm that’s tearing your soul apart, bit by unimaginable bit. And I promise you, it will get better. It will be OK. You will be OK. Most importantly, your child will be OK.

And I know this because I am you. Not now you, of course, but future you.

Original article here.

I am a HUGE reader and typically have anywhere from 2-5 books on my nightstand at a time.

Each time I read a book that I believe has a great message to share or I just really enjoyed it, I am going to share it here on “Book Joy” and write a few favorite quotes or things I liked from the book.

I recently read this book, Bounce Back, I really enjoyed it because it was a short book that had a lot of great points in it.

1. Denial and Isolation

“This isn’t happening to me”

2. Anger

“How dare this happen to me”

3. Bargaining

“If this doesn’t happen, I promise to…”

4. Depression

“I can’t bear to go through this”

5. Acceptance

“I’m ready; I don’t want to struggle anymore”

Remember when you were a kid and you could work on a sand castle for hours?

Your imagination was stimulated, your focus absolute. All that mattered was the task at hand.

This is called “FLOW”.

People are seldom happier than when they are in the “flow” says psychologist Mihaly Csikazentmihalyi, who has spent more than 25 years researching this phenomenon. He once described flow as “being completely involved in an activity for its own sake. The ego falls away. Time flies. Every movement, action, and thought follows inevitably from the previous one. Your whole being is involved and you’re using your skills to the utmost.”

                                         I asked for wisdom…and God gave me problems to solve.

                                         I asked for prosperity…and God gave me a brain and brawn to work.

                                         I asked for courage…and God gave me danger to overcome.

                                         I asked for love…and God gave me troubled people to help.

                                         I asked for favors…and God gave me opportunities.

                                        I received nothing I wanted, but I received everything I needed.