Everyday Miracles

[Guest guest]

Everyday Miracles

by Silvia Lawniczak

The miracles of everyday life with our

special-need children not only

reflect the challenges that our children surmount to be able to accomplish

everyday tasks, they also mirror the challenges that we as parents surmount

to be able to take care of our children.

It's almost like our children teach us in no

uncertain terms that life

is precious. And taking one day at a time means that tackling one challenge

at a time, like our children do, makes life a little less complicated. It

also means that we fully accept the struggles and the pain associated with

our work of love, and we can willingly seek out the help we need, accept

the

help of others, learn how to pray, learn how to hope, learn how to handle

every emergency as it comes and learn how to seek the care that our

children

deserve. We truly do God's work when we advocate for our child's best

interest and we become our children's miracles.

Our children's miracles may be small on the grand

scheme of things, but

they are huge to us. We know how to embrace the smallest accomplishments.

We

know the absolute joy it brings in watching a 7-year-old master toilet

training. We know how special our child's laughter is, especially for a

child in pain. And joyful smiles that flow over a person like a magical

breeze. We know the thrill of our child when he is so proud for having been

able to walk a short distance by himself, or eat something he never could

eat before.

All of these are miracles of our child's life, but

also miracles for

us. When our child is happy, it is music to our heart and soul. Our

children

are the most special gift from above, a precious miracle that has entered

our life to teach us that life is best savored when things are taken slow,

that we need to savor each moment, that we need to fully taste each morsel

of happiness and even how to endure the bad days slowly and without much

dwelling on the bad parts.

Raising a special need child is a blessing, and

many parents feel that,

looking back at their entire lives, this was their most worthy

accomplishment. Learning about our miracles and the miracles brought into

our life by our special children makes us cherish our life more, and

celebrating life and families should be something done often and with all

our hearts.

DENIAL... FRIEND OR FOE?

Denial is often a feeling associated by

professionals with the stages

of grief, as a part of adjustment to our children's disabilities. I've

often

thought and believed that denial per se was a foe, simply because it meant

that we as parents did not recover from the initial grief and could never

channel those energies into working with our child and learning to live with

the handicap. It also meant that the child could never count on us to be

honest and open with him about his condition and could not count on us to

tell him the truth.

But I think it is important to go through that

initial denial stage,

because it allows us time for healing and gives us a break from the

overwhelming problems and situations we will be facing. If the denial goes

on too long, however, it blocks a healthy acceptance of reality and creates

new problems that are difficult to solve because they are based on a

fictional reality. Denial of a problem erases any chance of finding proper

solutions and answers, and it denies the use of our creativity and

intelligence. While denial is a great coping mechanism, it can be overused

and abused. Some get stuck in this phase for too long. But is denial all

that bad? Sometimes it can be our friend.

Some parents, those in true denial of their

child's condition, may push

for certain education and treatments that others who had accepted the

reality of their child's disability might not have attempted; hence, in

many

cases, improving their child's life greatly.

At times even with those parents who readily

accepted the condition,

denial can resurface as a way to cope with their depression or a defense

mechanism to help them through the difficult times. To help them forget,

even for just one day, all of the pain and fear. Denial becomes a way to

protect yourself from being overwhelmed by anxiety, and it can be an

extraordinarily effective defense.

Parents of special needs children have very

extreme demands on their

resources-personal, emotional and financial. They have a lot to juggle on

top of all of the other things that everyone has to juggle. That may be the

reason so many parents seem to cycle in and out of levels of denial as

necessary-to allow them to do what has to be done.

Maybe at times the reality is that we need denial.

SURRENDER

One of the most challenging aspects of parenting a

child with a

disability is surrendering to the fact that our child's condition is one we

cannot control. Surrendering does not mean that we are defeated, but, put

simply, that we are completely facing the fact that our child may never

talk, walk, have a day without pain, go to college, go to work, or have

children of his own.

Embracing these feelings can set the tone for the

future because

acceptance is important for our well-being. It is important for our

children

's well-being as well, because our children sense our sense of acceptance

and grow up with confidence and understand why they are different. That can

make all the difference in the world. That doesn't mean that we don't have

our days of anguish and sadness. It just means that on the whole we accept

our children for who and how they are and love them unconditionally.

Once we surrender to this fact, we are opening our

minds and hearts to

the concept that we have other choices, other things we can control.

Remember that poem " God, give me the serenity... " ? Yes, this is

about

accepting the things we cannot change, having the courage to change things

that can be changed and, of course, the wisdom to know the difference.

Most parents I know do not have the time or the energy

to change or try

to change anything. They do not want to hear that they can become

advocates,

or that they are brave, or special, or that they are pioneers-experts on

their child's disability. They just want to be normal, to lead a normal

life.

No matter how we slice it, truth be told, we are

and always will be all

these things. We deserve those flattering adjectives simply because we have

to live our daily lives in a different way from other parents. We cannot

take the regular advice given to other parents; we have to modify them to

fit our needs. How about articles in parenting magazines? Most of us do not

subscribe to them because we simply can't relate.

Change things that can be changed-what does that

mean? It means that we

can change the way we care for our children, fight the good fight against

the school, insurance companies, government programs and the like. It's

true

that it's not fair. Not only do we have to spend many hours a day caring

for

our children, we have to spend countless others writing letters or making

phone calls just to get a prescription or a referral. It can also mean that

we can help others. We can write books or join support groups to encourage

and inspire others.

We may not be able to change the future and help

our children walk or

talk, but we can improve their and our existence in many different ways.

LESSONS OF LOVE

Before our special children came into our lives,

caring for a

special-need child may have seemed like a lot of work. Indeed, special-need

children require a lot more attention and caring than any other child. We

will probably need to feed our child well beyond age 1; either help or

completely dress our 10-year-old, help him with the bath or carry him

everywhere the wheelchair does not fit; and attend to his every need, as

there are many things these children may never be able to accomplish

themselves. What pushes us forward, gives us the energy and makes it all

worthwhile is the completely unconditional love we have for them. We would

walk to the end of the earth for a cure and completely surrender ourselves

in caring for our children. Is this an innate quality or do our children

teach it to us?

Most parents love their children in a selfish way:

They enhance our

lives, make us relive our youth, give us an opportunity to brag. New

parents

of disabled children often wonder in what ways we will be able to love a

child that deviates from that perfect dream. Time, and our children, will

teach us the true meaning of love.

Certainly parents had particular feelings toward

disabled individuals

before they became parents of one. Some might have always had protective

and

warm feelings towards the handicapped, while others might have felt

uncomfortable in their presence. Having a disabled child inevitably changes

those attitudes, even the most negative ones, into positive ones. Many

incorporate some positive experience they had with the handicapped into

their lives, while others will feel terrible for perhaps being mean or

cruel

to them, which is something they will need to learn to live with or somehow

make up for.

When all is said and done, nothing is more

precious and loving than

caring for our children.

There is no deeper love than sitting by the bed of

your child for hours

to make sure he's okay.

There is no deeper love than helping your child

get dressed or changing

his diaper (even if he is 7 years old).

There is no deeper love than placing food

gently in his mouth or

preparing the feeding tube.

While some parents may feel overwhelmed at first,

they will soon learn

that is what love is all about. And since most mothers do end up taking

care

of their children full time, I'd like to share an old saying that goes like

this, " Some people think we put life on hold to raise a child, but we

know

that to hold a child is life. "

CONTROL

Having a disabled child means that we are

constantly struggling to

control something. Sometimes we are successful, but other times things are

not within our power. Our control issues are basically focused on making

life resemble some sort of normality, whether it is regarding your child's

life or your own. We are in constant conflict and always fighting. Who are

we fighting? Who is our enemy?

The answer may very well lie within us. Are we our

own worst enemy? I'

ve seen many parents making mountains out of mole holes and causing

themselves undue stress over things that would best be overlooked or just

dealt with as quickly as possible without much dwelling. We have enough

things that cause us stress without blowing things out of proportion. Yes,

it is indeed easier said than done, and this is a realization that might

take years to take in.

Truth be told, I used to be one of these people. I

used to let

everything bother me. If an agency refused services for my child, I used to

leave the nastiest messages on someone's (anyone's!) answering machine,

just

to get things off my chest. If a relative or friend would sit in judgment

because my child was not potty trained yet, I used to literally blow up.

That went for people who were inconsiderate and not understanding about my

child's severe condition. I made many enemies, and many people hated me for

it. At the same time I felt I was standing up for myself and for my

beliefs.

While that may have been true at the time, it took my energies away from

what was really important and needed my full attention. My child has taught

me to be more forgiving, to let things shrug off my shoulders, not to let

things bother me so much.

What will always cause me stress and make me feel

the need to control

it somehow, someway, is my child's health. I believe it is a good thing, as

I am focusing my worries in the right place, and my child's life depends on

it.

Other things that are not so important, however, I

have learned to deal

with in such a way that they do not become real life struggles and take my

focus away. They might be dealing with the day-to-day struggles of getting

my child to do simple things, like take off his pants, or brush his teeth;

or teaching him how to open the refrigerator; finding time to care for the

other children; being frustrated about the system, or criticism that comes

our way from other parents, relatives or friends; appealing the denial of

services for our children, or the latest power struggle with the advocacy

or

support organization which we belong to.

The element of control is a human characteristic,

and it's best if we

realize sooner than later that we cannot control everything. We cannot

control other human beings, their ideas or convictions, and we can only

control a certain part of our children's conditions. Instead of wasting

time

being worried and struggling with things that we cannot control, our

energies are better focused on what we can control, what we can be

effective

at changing to better our children's lives and our own.

THE HERE AND NOW

Parents of children with special needs don't have

the luxury of

dreaming about their child's future like normal parents do, which is

perhaps

one of the greatest losses of all, and a loss that needs to be recognized

and understood. We truly do not know what the future may be like for our

child, and the normal dreams of a son that would become a doctor or the

daughter who will become a lawyer are replaced with other, more simple

dreams.

Simple dreams are defined by the most basic human

aspects of our lives.

We may simply dream that our child will be happy, or that our child might

stay healthy as long as possible. We may dream that he or she might

graduate, even perhaps attend college, and in the extreme that he may find

someone to love, if that is possible. While it is true that parents of

healthy children dream of these things too, they are not as clearly defined

and as specific and full of hope as what parents of special need children

dream.

While some of us can still dream of a future for

our child that is

somewhat in the normal range in the grand scheme of things, unfortunately,

on the other end of the scale, some of us may fear that our child might not

have a future at all, because the condition can and will be lethal. For

these parents, there is no future to daydream about and the here and now,

living for the moment, becomes the most important aspect of their child's

and their own lives.

Others live in a sea of uncertainty when it comes

to wondering what the

future might have in store for their child-wondering if the adult with the

same condition we met yesterday is a mirror to our child's future life, or

if it will be better or worse. The future, which is usually seen as a

peaceful place, becomes a scary place, a place we don't even want to think

about. These parents are probably better off living in the present, and not

projecting too many fearful possibilities onto the future, into the

unknown,

because, simply said, what might be may not even come close to what will

be.

Living in the moment accomplishes many

things-things that help us enjoy

every moment, which in turn helps keep us healthier and happier in general.

As Anne Lamott once said, " We do not need to see our destination, or

everything that will pass along the way. All we have to see is two or three

feet ahead of us. "

Silvia Lawniczak is a freelance writer.