Messages By: jazzsmom

I, too, am a stay at home mom with a special needs child.  I am single and unable to work.  My little guy has a genetic spastic paralyis.  He cannot speak so others can understand him, has to wear leg braces, is behind in school and development, etc. etc. etc.  And I could not agree with you more about not having a "normal life!" 

It gets very lonely.  I am one of the lucky ones who has an angel of a mother who helps out tremendously.  I also have access to ChildServe, a non-profit organization that really takes care of his needs like therapy, respite, etc.  Not every community is so blessed with an organization like this! 

But it still does not take away from the pain of having a special needs child.  We, as parents, are in mourning everyday and feel gulity because of our grief.  We wish our children could be "normal" and yet love them so deeply just the way they are.  But we wish they could run and play and enjoy all of the things "normal" children do and fight so hard for them! 

As an example, I received a note home from his school telling me that he was no longer allowed to bring any sort of toys from home.  I simply asked them if other kids were able to do this?  I was told, yes, they were, but that they knew the toys they brought went into their backpacks.  So I told the school that my son would still be bringing toys and that THEY could teach him to put it into his backpack when he was supposed to.  Needless to say, they did not argue and he nows has a new skill about appropriateness..... 

But it is this type of "little" battle that comes up all of the time....not to mention the HUGE ones as well.  We special parents have to be warriors and defenders, interpreters and comforters, we have to be educated on our children's rights, services available and even the educational process...we have to stay on top of it all....  Then, there is the whole medical education process...of knowing our children's disabilities as well as medical doctors.... 

We don't get to go out or take a walk...or go to aerobics classes....going to the grocery store is HUGE!!  We have to face dirty looks from strangers when our children act in a way that is appropriate for toddlers, but not for a ten year old child.... We face financial, emotional and spiritual challenges everyday... 

But yet, we are the luckiest people on earth.  We have been given the gift and responsibility of a special needs child!  What an honor! 

My son gives me so much laughter and love!  Most boys at his age start to pull away from their moms when a kiss or hug is flying their way....not my boy!   He is still so affectionate and loving....just like a five year old!   

Every parent out there wishes their child could just stay a little longer at the stage they are in....I am lucky!  My son has been at that "cute" 3-5 year old stage for twice as long as "normal" children....he is still so innocent and funny...everything is amazing to him! 

So, here is to all of us parents...who are special...who are chosen for this incredible and near impossible job of having a special needs child!  You are all so special yourselves....  And we are the richest people on earth.... 

Dr. Phil and Robin, 

The light in both your eyes was a gift in itself.  I could really tell how much joy you felt in being able to give away so much!  And isn't that what the season is all about? 

I had trouble signing on myself, but I have to tell you, that while the giveaways would be nice to have, I feel pretty blessed this year. 

I am unemployed and have been for awhile because my ten year old son has disabilities....so we don't have much....but what we do have is incredible!!!  I worry about making ends meet...about my mother sacraficing too much to help us out (she needs a new stove and has for some time!)....but then I hear my son's laugh and see his smile and get his kisses and hugs and I realize how lucky I am.  While most people wish their children could stay little and innocent forever...my little boy has extended those years....he is more like a 3-5 year old than a ten year old!  We get to know the magic and excitment of Christmas and Santa for years to come...no matter how big his body gets, his soul will always know that innocence! 

There are times where I wish I could afford to buy him a house or to take him to Disney World....but he doesn't miss those things and doesn't know any different.  He doesn't know about brand names or X-box toys...he is happy with a basketball or a toy backhoe!  So I am lucky! 

The only thing I wish I could get for him is a service dog, but I don't know where to start.  They are so expensive!  He has a dog who is 12 now and she will probably not be around a lot longer...she is his best friend!  He has trouble making friends because of his speech difficulty.... 

But a SERVICE dog...now that would be a miracle!  I could see that dog helping him with his speech...helping him to keep his balance....to keep him safe and from running in the street...who would inspire him to learn to read....to increase his independence....just so much.   

So if I had a wish today...that would be it!  (And maybe a new stove for my mom....) 

Thank you for sharing your joy of giving with all of us.  I really could feel it and see it!  It reminded me of how much I really have! 

Marsha in Iowa 

It seems that while most parents may sort of realize their children are out of control, they simply do not want to admit it.  It SEEMS as if it is a problem with pride or fear.... 

My brother's daughter is an absolute brat!  She never had a set bedtime...and kept the whole house up for hour upon hour...  She screams and yells and then sneaks.... 

But then, when I look at the entire house, I see that she is merely a symptom.  Their whole house is disrespectful...loud...and out of control!  Nothing is sacred! 

I am no expert, but I honestly feel that if children are not shown and taught respect, then they will show none!  If they learn to respect others, then they learn to respect themselves.  And how do we teach them respect?  By example...and by being PARENTS....in other words, showing them where the line is and not letting them cross it!  If we say something, we had better mean it...even with punishment....that is showing respect!  We need to show manners and to teach them.  We need to respect others and to teach our children to do the same. 

Take a lesson from the military...and tell your sister to do the same....everytime those twins act up....have them do pushups...have them do a chore....  And no second chances!  Put them to work...no matter how young they are!  They will learn. 

Believe it or not...this is something people use in training aggressive dogs as well!  If you teach a dog a trick, everytime they show aggression, you make them do that trick.  It teaches that dog who is the master and they eventually back down.  Now, why I am not saying that children are like dogs...there is wisdom in that technique!  Children who own and run a household need to be reminded who the parents are.... 

THAT is respect! 

Barb, 

I have to beg to differ here on a few points you have made.  First off, grief is individual...believe me!  I am one who has also dealt with a tremendous amount of loss, just like our original friend.  Because it is individual, please do not TELL people what to do or how to deal with it....no specifics.  Everyone has to get through it in their own way and the best thing we can tell them is that whatever they choose to do...is simply okay.  If she wants to scream....then scream.  If she wants to dwell on the past for awhile...then dwell on the past and cry and cry. 

Dwelling on the past in the midst of grief is NOT engrossing yourself in self pity, as your AA program may so incorrectly say.  Dwelling on the past, for a time, can be healing....it forces out the emotions that need to come out.  It can bring on the tears.  The dangerous part is when we get stuck in that past...and that is only for a professional to diagnose and treat....not an amatuer, sit-around-the-tables person in recovery. 

Sorry if I sound like I am down on your recovery process....if it works for you...so be it!  But, as a person in recovery, I found AA to be the most dangerous place for me to be while dealing with my grief....too many obsessive, compulsive people that wanted to replace their own addictions with "helping" me....and if I was just grieving, then I was wrapped up in self pity.  If I was angry at God, at the person who left me...then I was committing a HUGE no-no....people in recovery do not DO THAT!!! 

Well, bull!  People in grief DO!!  Grief has so many stages and we have to move through and experience them all....There is shock and denial, anger, depression, sadness...so many stages that FINALLY move us to acceptance.  And no one can move you through it....it just happens.  And it sucks all along the way.... 

We get in real danger when we start believing that just because we have gone through treatment, or because we have gone through things, that we are now qualified to be arm chair psychiatrists.  That is arrogance at its best!  And, yeah, I have been guilty of it myself.  And it came back to bite me hard.  When helping others with grief, it is best to behave as if you are at an AA meeting with no cross-talk...no suggestions....no nothing....just listening and acceptance. 

And actually, the very best way to help ANYBODY with grief is to simply tell them that whatever they are feeling, whatever they want to do, whatever it takes....is OKAY!  Do it.  If you want to scream and stomp on your sister's grave because you are angry she left you....do it.  If you want to plant a tree to remember your friend...do it.  If you want to lock yourself in a room for a couple of hours, surrounded by photo albums and old letters....do it.  Cry.  Scream.  Yell.  Laugh.  Beat your chest.  Throw things.  Curl up in a fetal position and sob. 

Do it.  But....the only thing I will say is something we all already know....do whatever it takes for YOURSELF...but do not force these things onto other people.  In other words....don't scream at the kids to get the screaming out.  Don't throw things at your boyfriend.  Don't force others to remember the past if they are not ready to. 

Grief is a very lonely and selfish process.  We have to do what feels right for us....and others may not be there yet.  And we cannot force them.  We have to let them deal with it in the way that is best FOR THEM. 

Just embrace the grief.  It is yours.  And it may be painful and lonely and awful....but it is STILL YOURS...and yours alone.  So embrace it and feel it and do whatever it takes to get through it. 

That is my 2 cents worth.... 

I can relate to your mother.  I was there, about three years ago. 

The best advice I can give you is to let your mother grieve in the way she needs to.  Let her do whatever she feels.   

There are exceptions...but reality is, you cannot force her to move through this quickly.  We have to go through stages....denial, depression, sadness, anger....all just to get to acceptance. 

When a friend of mine was dying from leukemia, I made the statement that I wished I could take all of the pain of it away from her and her family.  She smiled, very wisely, and told me that was selfish.  Dying is a part of life, as is grief.  We grieve because we are human.  She said to embrace the grief, the sadness, the pain....because it is blessing that we can all FEEL! 

So, help her embrace the grief.  Her grief is proof of her love for him.  Her pain is equal to the amount of love she feels.  Celebrate the fact that your mother got to experience that sort of love in her life....most people don't. 

And maybe putting it into that sort of perspective may help her understand and not get "stuck" in the stages...  Maybe if she saw this overwhelming pain she is feeling as a reflection of the love...and that it is OKAY to feel it.....maybe she will learn to embrace it herself and to move through it. 

You absolutely cannot take this away from her.  It is HERS to own.  But you could help her understand what it is she is feeling and let her know that it is simply okay that she is dealing with it in the way she is. 

I was told it takes a good three years to move through grief...and I believe it.  It is not a fast, simple process.  But the more I told myself that it was okay to feel, think or do things...the stronger I got.  And having others reassure me that I was not crazy, that it was okay to be sad, to want to isolate (for awhile), to be angry as hell, to beat my chest, to scream and yell and cry and cry and then cry some more.....well, having them tell me it was okay, was the greatest gift of all. 

Give your mom a hug from me and tell her it was wonderful to hear about a woman who obviously loved very deeply....you are lucky to have such a lady for a mom. 

Take it easy on yourself.  Just because you watched him go through this does not mean you have gone through the stages of grief.  So don't rush it! 

Whatever you need to do to get through this, do it.  Embrace what you are feeling and just go with it.  Five months is not that long ago! 

Do what you feel.  If you feel like hiding under a blanket on the couch....do it.  If you feel like screaming and yelling and throwing things...do it.  (Probably best when no one else is around!)  If you feel like mindlessly playing solitaire on the computer....do it.  The more you give yourself permission to feel whatever you are feeling, the stronger you will get.  And the intensity of what you are feeling is a direct reflection of the intensity of love you felt for your husband....so embrace it!  Use that pain to honor him and the love you shared together. 

You miss him.  You loved him.  That is true and real.  Just because he is not here anymore doesn't make those facts any less real! 

So feel what you have to feel...do what you have to do....walk through it with your head up and your shoulders back....be brave and just embrace it.  I promise...if you just keep moving forward, you WILL get through it! 

It will not be easy...and it will hurt like hell...but you can do it.  And what is more important, is that you actually earned it....you earned that wonderful pain because that is how much YOU LOVED HIM!  And it is a wonderful pain....because it is a blessing that we can feel at all!  So embrace it....pull it right up to your chest and hug it tight....that pain means you are healing and that you WILL survive and that one day, it will be better. 

Going through grief really IS the worst pain you will ever feel in your life. 

I wrote several replies yesterday about grief and woke up this morning to find out that a beloved aunt of mine has passed away.   

It does get easier because after you experience grief the first time, you sort of know what to expect the next and the next and the next. 

And that is why I chose to respond to you.  As painful and awful as it feels, grief is a part of life, just as much as death is.  There is no miracle drug that will make it easier...  We just have to go through it. 

Everyday you WILL cry because that is how much you loved them.  And everyday you will wake up and believe it is a terrible dream...that is called denial and it is one of the many stages we have to go through. 

But if you embrace it, no matter how much it hurts, no matter how much you want to run away from it....you will get through it.  There will be shock, denial, sadness, anger and finally, acceptance and peace.  You will never get over losing them, but you CAN celebrate the fact that you had such wonderful people as part  of your own life. 

So everytime you cry....remember that it the tears are a sign of your love.  And don't shove away the good memories!  Nothing ever dies that is remembered.... 

If you feel you are stuck, you may need to see a grief counselor...but don't worry....It is still fresh and new and you are exactly where you are supposed to be.  As hollow and empty as it sounds, it really is true that time will ease the pain.  It may never go away...but it will subside.  You are okay.  What you are feeling is okay.  And anyway that you want to deal with this overwhelming pain that is probably located right around your heart....is okay....cry, shout, beat on a pillow, look at old pictures, write it all out....do whatever you need to.  You will walk through this and come out stronger on the other side. 

Hang in there and take it easy on yourself.  It is not a fast process.  There is no time frame of when to get over it or when it will stop.  You just have to embrace it. 

Could not disagree with you more!!! 

There ARE miracles...every single day!  All you need to do is look for them... 

Do you realize that it is simply a miracle that the sun rises at all?  That there is life on earth?  That you can even have the ability to think and feel and analyze?  Let a snow flake fall onto your arm and look closely at it.   

Maybe you can explain it all away scientifically...of how the ice particles formed, how it came to fall right there on your arm and at just that moment.....but explain to me how there was water on this planet in the first place?  Explain to me how, more than likely, the water that it took to form that snowflake was probably the same water that ran down the Nile in Egypt...or under a surfboard in Hawaii.... 

"The cemeteries are full of people who left the living praying for some sort of miracle...." 

To that, I say....the cemeteries are simply full of PEOPLE....period.  And there are souls who left this world happy and those who left sad...there are those who lived their lives to the fullest and those who filled their moments with cynicism....  Which were the better lives? 

It sounds to me as you have already placed your own soul into the grave by choosing to no longer believe....and that is sad.  Somehow you have lost that childlike innocence....some awful event maybe that took it all away.... 

Lives ARE improved by belief in miracles.  And there is scientific and medical evidence that this is so...  Those who believe live longer and fuller lives....   

Here is a miracle you can sink your teeth in....  It is your RIGHT to believe whatever you believe...but the bottom line is that you DO believe in something....your own freedom of choice.  So where did that reasoning that you express come from?  After all, you are just a bunch of atoms, clumped all together...you should have no thoughts, no reasoning, no nothing....you should not even be able to communicate... 

But you do.  Because, you see....YOU are a miracle.  If you believe in yourself, then you, too, are believing in a miracle.... 

More power to you....   

I don't have to TRUST you on that...I, too, have an education.  And if I were just to TRUST you on that, well, that would be an act of faith, now wouldn't it....contridicting yourself there. 

Faith and belief in miracles is not just attributing it to God or the Supernatural.  It is just simply believing that there is a higher power out there....it is an act of humility. 

To believe that there are no miracles is demonstration of arrogance...that we are the almighty.  That arrogance is what gets us in trouble.  It is what gets religion in trouble as well.  Those women were put to death because HUMAN BEINGS arrogantly believed they KNEW what was right....it was not because of religion or the love of God....or whatever you want to call that Higher Power.  It was human beings making their own arrogant interpretation and subjecting or even FORCING others to believe the way they did. 

The bottom line is, we, as humans, simply have no control over this world.  The healthy birth of a child is called a miracle because we have no control over it.  We can do all of the right things that we know may contribute to a healthy birth...but in the end, we really have no control.  We just have to believe it will happen and adjust if it does not. 

When you sit down in a chair, do you stop before doing it and wonder whether that chair will hold you up?  Probably not.  It is an act of faith.  You do not think about it.  You just do it.  In essence, that chair has become a higher power for YOU...because you completely surrender yourself to its care.  That is not religion.  That is not a belief in God.  It is faith. 

Now, you can explain all you want on why that chair will hold you up.....but you don't KNOW if one of the legs are broken and will collapse under you.  You just sit down...without wasting time worrying about it. 

I am reminded of a commercial for the lottery.  If you don't play, then there is no possible way you can win.  It is the same with miracles.  If you do not believe, then there is no way they can ever happen to you.  So why sell yourself short?  Why NOT believe in miracles?  What has anyone got to lose by doing so?  Are we so wrapped up in the fear of disappointment that we would give up the faith of believing? 

I can tell you what you are losing by NOT believing....peace, joy, happiness....that wonderful, magical feeling you had as a child on Christmas morning that maybe, just maybe...something magical happened during the night and Santa really did come down the chimney and leave presents under the tree....   

When you trade that happiness and joy for disappointment and reason, you are not making a good trade at all.  You are being short changed!  You are giving your own power up to something that is really not worth it. 

So why do it?  Why not believe?  Why not live with childlike wonder and joy?   

Sometimes, it is not the "miracles" that are the true gift anyway...it is the simple joy, faith and happiness of just BELIEVING.... 

I don't have to TRUST you on that...I, too, have an education.  And if I were just to TRUST you on that, well, that would be an act of faith, now wouldn't it....contridicting yourself there. 

Faith and belief in miracles is not just attributing it to God or the Supernatural.  It is just simply believing that there is a higher power out there....it is an act of humility. 

To believe that there are no miracles is demonstration of arrogance...that we are the almighty.  That arrogance is what gets us in trouble.  It is what gets religion in trouble as well.  Those women were put to death because HUMAN BEINGS arrogantly believed they KNEW what was right....it was not because of religion or the love of God....or whatever you want to call that Higher Power.  It was human beings making their own arrogant interpretation and subjecting or even FORCING others to believe the way they did. 

The bottom line is, we, as humans, simply have no control over this world.  The healthy birth of a child is called a miracle because we have no control over it.  We can do all of the right things that we know may contribute to a healthy birth...but in the end, we really have no control.  We just have to believe it will happen and adjust if it does not. 

When you sit down in a chair, do you stop before doing it and wonder whether that chair will hold you up?  Probably not.  It is an act of faith.  You do not think about it.  You just do it.  In essence, that chair has become a higher power for YOU...because you completely surrender yourself to its care.  That is not religion.  That is not a belief in God.  It is faith. 

Now, you can explain all you want on why that chair will hold you up.....but you don't KNOW if one of the legs are broken and will collapse under you.  You just sit down...without wasting time worrying about it. 

I am reminded of a commercial for the lottery.  If you don't play, then there is no possible way you can win.  It is the same with miracles.  If you do not believe, then there is no way they can ever happen to you.  So why sell yourself short?  Why NOT believe in miracles?  What has anyone got to lose by doing so?  Are we so wrapped up in the fear of disappointment that we would give up the faith of believing? 

I can tell you what you are losing by NOT believing....peace, joy, happiness....that wonderful, magical feeling you had as a child on Christmas morning that maybe, just maybe...something magical happened during the night and Santa really did come down the chimney and leave presents under the tree....   

When you trade that happiness and joy for disappointment and reason, you are not making a good trade at all.  You are being short changed!  You are giving your own power up to something that is really not worth it. 

So why do it?  Why not believe?  Why not live with childlike wonder and joy?   

Sometimes, it is not the "miracles" that are the true gift anyway...it is the simple joy, faith and happiness of just BELIEVING....