I almost feel like I should apologize because I haven't written in a while. To be honest I have been putting most of my left over energy in preparing for the class I am teaching. I have also been a bit under the weather, and so was Scott and Sam. So the very little energy I had left went to resting a bit.
I thought it would be interesting in this post to share a little of what I am teaching in my Early Intervention class. One of the lectures I gave focused on the seven stages of grieving. These stages are only partially sequential and I say that because any little blip in a person's universe can knock them right back down to a depressed state or an angry state or even to the very beginning stages of shock. So here are the stages...
Shock –shock is a numb, distancing feeling that engulfs the parent when bad news is being delivered. Parents often report that they didn’t hear a word the doctor said or that they didn’t understand what the diagnosis meant.
Disbelief – During this stage, parents do not believe the diagnosis given for their child.
Denial – Parents may refuse to even consider that their child has a disability. During this stage, they may “doctor shop” for another professional who will recant the original diagnosis. Professionals become frustrated during this stage. Often “students” of EI spec. ed programs want to know how to hurry the parent along through this stage. The only approach that works best is to listen to the parent, accept their emotions, validate them, and be available for support when the parents conclude that their child does indeed have a disability.
Anger – As denial breaks down and the child’s condition becomes more real and apparent, parents begin to experience angry feelings. It is helpful for the parents to recognize anger as a potentially positive sign that the parents have begun to accept the child’s condition.
Bargaining – The parent makes a mental wager with a higher power and/or decides that dedication to a task or work will somehow alleviate their child’s condition or negate it altogether. The parent becomes very busy during this stage and this time leaves little interactions with personnel.
Depression – Parents will make statements like what’s the use? Why even bother to come to the center anymore – nothing is going to change. Part of what causes the depression is that the parents have moved through some parts of the previous stages and are now confronted with the child’ s disability for the rest of their lives, and they may be worried about what will happen to their child after they die.
Acceptance – The stage of acceptance is often misunderstood by professionals and parents alike. Acceptance means that the parent can look past the disability and accept the child as the child is. It does not mean that the parent would not change the situation if it were possible but rather that the parents can envision a life for themselves and their child, in spite of the disability.
These are not pretty things to experience at all. But at some point in every one's life you do have to deal with the unfortunate instance of losing a loved one or going through some awful tragedy and in some way shape or form you experience these stages of grief. Some more intense then others. Certainly it is no one's place to be as presumptuous as to tell you that they know what you are going through.
What's interesting is that some people are naive enough to tell me that they feel my pain or know what I am going through. To be honest even other parents of special needs kids may have a little more of a clue but every one's family is different and every one's circumstances are different. So when people tell me that they are going through my agony with me that they feel my pain, "maybe not to my extent but close enough," I have two words for ya... FUCK YOU!!!!
Oh yes I did...
When such a stupid comment is thrown my way it completely invalidates every piece of my being. How could someone possibly even come close, even feel a thumb nail of what I am going through. HOW, HOW, HOW.... Tell me I would like to know???? No one and I mean NO ONE can possibly feel or even come close to feeling what I feel. That includes, friends, grandparents, siblings, therapists, doctors, nurses, etc... Yeah sure, hurt maybe, sad maybe, helpless maybe... But not what I'm feeling no way. I am even going to go as far as to say that Scott doesn't go through what I go through every single day. He definitely comes to a close second, but its not the same. Only now can I say that because I now know what it feels like to leave the house for half a day. Only now do I know because I am working on Sundays.
Did you know that EVERY single time I hear my child take a breath I constantly feel like I am being stabbed in the chest because he sounds like he's gargling and breathing through a straw?
Did you know that every time that stupid suction machine goes off (at least 4-5 times an hour) my son gets so scared and upset that it just completely makes my heart bleed still? The guilt is overwhelming.
Did you know that every time I have to pick up the phone at least twice a month to call Sam's medical equipment company I pray and compromise my limbs, sight, and hearing to make sure that they don't tell me that the warehouse is out of feeding bags or his very special kind of formula so god forbid I can't feed my son.
Did you know that every time I see a child running, playing or eating on TV or in the present it takes my breath away in absolute horror because my son may never be able to enjoy any of those things?
Did you know that every time I take a bite of food or a sip of water I feel so overwhelmingly guilty that my son can't endure the same benefits from oral nutrition that I often thought I should get a feeding tube and stop eating all together because if he can't eat then why should I?
Did you know that every time a therapist has to cancel on us my heart completely breaks in half because its just one less chance that Sam has to function normally?
Did you know that when Sam is having trouble sleeping I stand over his crib to make sure he is not going into respiratory distress and pray that we don't have to go to the hospital?
Did you know that every time I have to change, bathe, and dress Sam I pray that his tube doesn't pop out and we have to go to the hospital?
Did you know that almost on a daily basis I have to fight with either my nursing agency, nurses, therapists, insurance company, doctors etc... to ensure that Sam gets all of his needs met?
Did you know when I went to the mall to go holiday shopping I cried the entire time I was there because all I saw were moms running after their kids in the mall waiting on line to take pictures with Santa Claus?
Did you know that I never have a minute of privacy in my own home because we always have nurses, a housekeeper, visitors, therapists, etc..?
Did you know that my husband and I can't even have sex without someone else knowing what we are doing because there are always people in my house and the walls are very thin?
Did you know that my husband and I can't even have a fight like normal couples without the rest of the world knowing because there are always people in my house?
Did you know that when I am in a pissy mood I have to have 50 people ask me what's wrong or get mad at me because I am not filled with shits and giggles 24/7?
Did you know that every time I see a therapist, doctor, or nurse my stomach is in knots because at some point during their visit they say at least one negative thing about my son? Not in a bad way, most of the time they don't even realize but it bites me in the ass every single time!
Did you know that at the beginning and at the end of the day instead of loving and enjoying my baby I have to have a full on wrestling match with him to make sure he gets 3 nebulizer treatments so that he doesn't die?
These are just a few small things that I go through on a daily basis. So the next time you decide to tell me you are going through what I am going through or you feel my pain or you have it tough too, try stabbing yourself in the chest about a thousand times pour acid all over the wound and then maybe, just maybe can I accept that you understand a little more then a hang nail of what I am going through.