Saturday, December 29, 2007

To You, My Sisters

To You, My Sisters
By: Maureen K. Higgins

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the internet, on playgrounds and in grocery stores.I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring with experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.We were initiated in neurologist' s offices and NICU units, in obstetrician' s offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.All of us have one thing in common.

One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's.

We have mutual respect and empathy for all the women who walk in our shoes.We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and physiatry.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.We have learned to deal with the rest of the world, even if that means walking away from it.

We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us in line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.

We've mourned the fact that we never got to relax and sip red wine in Italy . We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs.

We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

Thursday, December 27, 2007

"It's a Wonderful Life"

Well... We were all ready to watch. Sam was sleeping, we set up a nice spot on the living room floor with a great bottle of wine and some really good snacks... As soon as the movie started Scott said "What the hell are we watching, a black and white movie???" So I said "Come on honey I heard it is a great movie, just give it a chance, pleaseeee." So we got into about an hour of it and I have to say it was really painful, LOL... It must be me, I must be totally corrupted by modern cinematography. All I heard was wah wah wah wah wah... I couldn't stand it. Maybe if the movie was redone starring Brad Pitt and Julia Roberts or something it would be easier to get into. I couldn't understand a word they were saying. The actors spoke so quickly, scenes were jumping all over the place. Scott and I couldn't really follow it at all. I know its what most would expect of me, I am known to be a little slow on the uptake at times. But Scott is actually quite brilliant and even he had a hard time following. Well, we ended up changing the channel and watching my most favorite Christmas movie, "A Christmas Story." I am going to give "It's a Wonderful Life" another try and rent it so we don't have to deal with the commercials. But thanks anyway for the recommendations...

Thursday, December 20, 2007

Christmas Cheer!

Yeah I know, I know... but I was brought up celebrating Christmas what can I say. Christmas for me was never about Jesus anyway, its always been about spending time with family, baking great cookies, eating, and watching lots and lots of movies in our living room by the fireplace. I miss having a fire place, and I miss being able to lay down all day watching movies. So in the spirit of the season what is your favorite Christmas movie ever. I am sure my favorite movie may be mostly everyone elses too. Let's see...

Tuesday, December 18, 2007

I Feel Your Pain... HA!!!!!!!

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.

Monday, December 10, 2007

Saturday, December 8, 2007

Sam and Ramon

During Sam's sessions with Ramon Cuevas our pediatrician Dr. Koplow came to visit and video tape some of the session. This all took place on Thanksgiving morning. If you click the link below you can see a small portion of what CME consists of. Sam has been doing very well since his sessions with Ramon. Also a special thanks to Sam's PT Yoni, who really put a lot of effort into making sure Sam got in to see Ramon. Sam really enjoyed his CME sessions. Ramon was incredibly gentle, kind and engaging. Sam just loved it!