Saturday, December 29, 2007
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
Thursday, December 20, 2007
Tuesday, December 18, 2007
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
This one is from the very first session. http://www.vidtest.com/view_video.php?viewkey=bb0c9b8a3bf979d3b917&page=1&viewtype=&category=mr
And this is from the fourth session.
Saturday, December 8, 2007
Friday, November 30, 2007
Thursday, November 29, 2007
Today I got a huge bitch slap right in the face. I can't elaborate on the specifics due to legal reasons but try and follow the best you can. So someone who I trusted and who I did beautiful and over the top generous things for decided to take tremendous advantage of my kindness and is really putting my entire family under a lot of stress. Knowing the heartache and burdens that I have to live with on a daily basis this person is still doing a very terrible thing to my family. How this person can live with themselves is beyond me. In my eyes it is the equivalent of drowning poor innocent puppies. Only a monster would behave like this and think of only themselves. Only a really god awful poor excuse for a human being would kick a person while they are down like this. My first reaction was certainly to call, harass, yell, scream, cry, etc... But now as I think more and more about the situation I know I am a better human being. I took a deep breath and I prayed for this person. I feel sorry for this person.
Half of me wants to never be kind again, never trust again, never be generous again. But I know that whether I am kind or not, generous or not, trusting or not, there will always be someone out there looking to take advantage or hurt or abuse. So I want to do my part for the good of humanity and not be spoiled by the sourness of this situation. I will hold my head high and continue to be kind, to be generous, to be trusting, etc... I know who I want to see when I look in the mirror everyday and I think I do a damn good job of working hard to be that person. I am not saying I am anything close to perfect but I do have integrity and I do have a heart.
With the upcoming New Year and all of our new New Year resolutions could we all maybe try to be better people (whatever that means) with the hope that it will spread on to others and we can all have a better year to come...
Saturday, November 24, 2007
Wednesday, November 21, 2007
Friday, November 16, 2007
I am really excited to say that we did get the appointments with Ramon Cuevas for this upcoming week. So we will be in NJ tomorrow through Fri. I'm not sure if I will have computer access but if I do I will keep updates on Sam doing his Cuevas MEDEK Exercises. So far all of Sam's therapies have been helping him progress. Today he sat up several times for prolonged amounts of time and was able to play with a toy while sitting and maintaining balance. This is a tremendous feat for Sam. The task would be equivalent to you and me juggling while balancing on a high wire. Not easy to do yeah? Sam's disposition is also getting back to normal, sweet and tolerant.
Also another reason why I have not been able to write in some time is because as of Dec. 2 I will be teaching a graduate course and I have been preparing. To be honest I didn't realize what I was getting myself into but I think it will be really good for me. I love the idea of molding fresh young minds (can you see me rubbing my hands together and laughing like the wicked witch of the west hehehe...). The course I will be teaching is Early Intervention with Assistive Technology. How appropriate is that? I am really excited because I think I will be able to give the students something that many of my professors were not able to give me and that is the perspective of the parent and the clinician. Anywho I am off to pack and get ready for NJ.
Friday, November 9, 2007
Wednesday, November 7, 2007
http://amazing-amelia.blogspot.com/ This little girl is Sam's twin.
http://ilovegiuliana.blog.com/ This little girl is a newbie and is doing really well.
http://www.jasonandval.blogspot.com/ This little boy was Sam's neighbor in the NICU at NYU
http://ccfb.wordpress.com/ We share nurses with this adorable little boy.
http://johnmurphy-barbara.blogspot.com/ And this little boy we met on the internet and mom is an awesome writer that I just had to connect with.
So last Sunday both of our PTs called and invited myself and Sam to attend a CME conference http://www.cuevasmedek.com/ . They wanted "The" CME guy Ramon Cuevas to use Sam at the conference to present examples. This is really an amazing opportunity and one that hundreds of families wish they could do for their children. He is some what of a miracle worker when it comes to helping developmentally delayed children acquire gross motor skills. After those few hours Sam came home and sat up for 20 minutes completely unassisted!!! Now Ramon will be treating children independently after the conference is over but the waiting list is insane. We are borderline on whether Sam will be seen by him or not and we will have no idea until late next week. So my anxiety level is through the roof because if I can't get Sam to see him I feel like I have failed my son. This man has gotten children with half their brain missing to walk. And trust me money is no object with us, but that is not how this gentleman works. So in the mean time I am going to take what I can get in terms of letting who ever use Sam at the conference. But there is always a penalty... First of all there are other children there too and where there are children there are germs. Sam is just getting over a pneumonia. Every time Sam gets a lung infection it develops scar tissue once the lungs develop enough scar tissue you go into organ failure then there will be no more Sam. So they invited Sam to come back yesterday morning. Sam was one of the only children there for the first part of the morning. But as the morning progressed more children came and Sam started to become really agitated. I took this as a sign to get out of there especially since some of the kids were coughing. But after I left I couldn't help but to feel like Sam missed something. Of course Sam's health is the most important but it is really terrible that I have to make these kinds of decisions.
In the mean time Sam is scheduled for a bronchoscopy, a neurology appointment, feeding clinic, pulmonology, and I have health appointments for myself as well. In addition Sam has a very important annual meeting coming up to keep and increase services and get additional equipment. I know I am going to have to fight at this one because this state is starting to hold back money for early intervention. So if we do get in to see Ramon it will be for six sessions over a six day period. Which means cancelling and rescheduling. But I am stuck in limbo right now because I don't know when and if I have these appointments. And if I don't play everything right Sam looses.
It kills me to have to put Sam through all of this chaos to just make sure he has a chance to walk, eat, talk, live... Scott and I have to fight for every little aspect of Sam's health and development. I am so tired of everything we have to do every day. People talk about how strong I am I'm really not. I am just like everyone else. The only difference is I got dealt a really shitty hand. So how does that make me strong??? Would anyone else not do the same things that we do. Maybe most people would not know exactly what to do but you all would know how to get the help you need. You could always ask me, right? Then you would do what needs to be done. But does this all really make me strong??? I don't think I am that strong. If I were strong then I would take Sam to other kids parties or to the play ground. Other families that have children with special needs are much stronger then I am. They don't let any negativity stop them. They take their kids on the subway, go to public places, go to parties, travel long distances, etc... Sam is strong, not me. We can all learn from Sam, not me.
Thursday, November 1, 2007
Andrea and Alise if either one of you put Scott Baio I am going to get really sick LOL...
Wednesday, October 31, 2007
Tuesday, October 23, 2007
OK, so Scott was supposed to write all about his fabulous week at home with Sam and I. But as I am sure you all know there is never a dull moment here so he has not had a second to write. We had a really great week last week being all together. We brought Sam to the zoo and the aquarium, we had music therapy, played and had a lot of fun. It really was so nice having Scott home with us. I know how difficult it is for him to leave us every morning. Scott so badly wants to be a part of Sam's daily activities so it was nice for him to have the opportunity last week.
But now its this week and all hell broke loose. Just when you think you are in the clear and Sam is no longer in any danger of mega crisis you get slapped in the face hard with some very close calls. It all started Tuesday night at about 9:30pm. Sam was sleeping and literally woke up crying a cry I have never heard before. It was this awful raspy breathless cry that makes you want to gasp for air yourself. And his chest... His chest was totally convulsing. So we immediately gave him a double nebulizer treatment and he began breathing close to normal. But four hours later the same thing happened. Then the intervals between nebulizer treatments became smaller and smaller. We obviously took Sam straight to his pulmonologist the next morning. The doctor was on the fence about admitting us to the hospital but we decided to play the wait and see game with precautions of mega medication and breathing treatments. Well, pretty much as soon as we got home things started to spiral down hill fast. We thought that if we gave Sam a breathing treatment we would be able to take him to the ER ourselves. I contemplated calling 911 because if they saw Sam in enough distress they would have taken us to a really yucky hospital instead of the one his doctors are at. So after his breathing treatment he seemed OK enough to make it to our hospital. BIG, BIG, BIG MISTAKE!!! If you get anything out of this blog please get this. If your child is having some sort of respiratory distress call 911. DO NOT take your baby to the hospital yourself. It is just not safe. Once we got to the hospital Sam was in a really bad place. We pulled up in front of the ER I grabbed Sam and ran straight into the ER screaming my baby is in respiratory distress. I basically threw Sam at the attending and collapsed crying. This is the first time I really lost control. The ER staff worked so quickly and calmly Sam was fine within seconds. But we were not out of the woods. He continued to have these crazy distressing episodes for a few more hours. After his meds kicked in he started doing much better. We are home now but Sam is still pretty sick. Stable but sick and miserable. Scott and I basically have not slept since Tuesday night. Sam has some serious lung issues that need to be addressed within the next few weeks after his illness clears up. We will keep everyone posted when we know more. But for now if anyone comes to our home we need to be on super OCD mode about cleanliness and illness. So our rules are the following. Shoes off the second you come into my house, hands washed, if you even think you have a cold stay home, if you think you were near someone with a cold stay home. We do not want your germs here. All therapists leave your toys in the car. Only use our toys and books, gloves, equipment etc... Sam's lungs cannot handle any kind of irritation so no perfume either. We need to be as careful as possible. Thanks for all of your support.
Friday, October 19, 2007
Tuesday, October 16, 2007
We appreciate that no one has ever given up on us. When Sam was first born I was in a very dark place. I wanted to take my child and hide in a closet some where. I didn't want to see anyone and certainly did not want to talk to anyone. And those of you that I did reach out to came running to me. And those of you I didn't stood back and waited patiently for the word. Sometimes just standing back and being patient takes more effort than actually doing something. I acknowledged that.
Some days I am just so positive and some days I am so negative and some days I am in between. On the very negative days I pray that god gives me the strength to get through those moments. And then a tremendous gesture from one of you let's us know that we are not alone. Sunday I was having a little bit of a down day. Scott's parents came over and brought lunch from my favorite place. I worked at this restaurant through high school and College. When David (the owner) found out that the food was for us he insisted that he treat because he knew how hard it would be for Scott and I to go there. This act of kindness touched us so deeply. It let's us know we are not alone. It reminds us that no matter how hard our struggles are you all are holding our hands through each and every day. The love that you all have for us is so incredible it helps carry us through each moment with hope and with out fear. So on behalf of Scott, Sam and myself we say thank you all so very much!!!
Friday, October 12, 2007
Tuesday, October 9, 2007
Here is a sample letter for you to pass along.
Please send letters to:Living with Cerebral Palsy Project
c/o Alicia Khlass (please include my name on the envelope)
6093 Sunset BLVD #132
Hollywood, CA 90028
Please contact Alicia at (323) 962-7405.Please address the letters to the following:
US Senate ~ US Committee on Health ~ Senator Edward Kennedy, Chairman
ABC ~ 2020 & Good Morning America with Diane Sawyer
Oprah ~ Oprah Winfrey
NBC ~ Dateline NBC & The Today Show with Ann Curry
CNN ~ Dr. Sanjay Gupta & Larry King
Form Letter Here:
Dear (type in each name listed above 9 letters.)I'm writing on behalf of ( name of the child or all children), who (has/have) Cerebral Palsy. I support the Living with Cerebral Palsy Project! Please tell her story and the stories of the other children and their families living with Cerebral Palsy everyday!I support increased CP funding from Congress for the CDC CP surveillance system, research for Cerebral Palsy, education for the public, continuing education for doctors and medical professionals, more therapy equipment, prenatal care & education and early intervention services for Cerebral Palsy.(Please add your personal sentences here, I got involved because..............) (Write anything additional that you would like here..) Did you know that more than 800,000 American children & adults have Cerebral Palsy right now? Cerebral Palsy not only affects the infant/child/adult, but it affects their family, friends, and our entire community. There is no cure for Cerebral Palsy and it symptoms are different in every child. Did you know that there are many children out there with symptoms, but they may go undiagnosed for years? They may not receive Early Intervention services that are crucial which can help to minimize their disability. Early intervention is the key to success. It is the most effective way for a child to overcome developmental disabilities and/or for them to learn new ways to adapt and succeed with everyday tasks. Please let their voices let their voices be heard!!
Your Address & phone number
You can find all the information about our project by clicking on this link:http://www.cafemom.com/group/7064/boards/read.php?post_id=1057011
Friday, October 5, 2007
Wednesday, October 3, 2007
Tuesday, October 2, 2007
Friday, September 28, 2007
What is the best 1/2 hour sit com ever made and why do you think so???
Thursday, September 27, 2007
Sam is an amazing baby. He is deeply intuitive and incredibly strong. Sam is also very intelligent. He is playing ball rolling it back and forth, in the best way that he can. He says "go" better and better everyday given a "ready... set..." cue. He is socially smiling now very easily and he rolls to me for comfort when he doesn't want to be annoyed by someone else (Grandpa Dave). My cousin Oren is visiting with us from Israel and we took Sam to the Aquarium yesterday. Sam was completely enamoured with the sharks and the fish in the tanks. But he really showed a special interest in the sharks. In my professional opinion this is a clear sign of cognitive ability. Unfortunately Sam's physical ability is really delayed and it impedes on what he needs to learn and explore cognitively. Which means that I have to assist him with everything. I know, I know... he will get there. Well no one really knows that for sure. But what I do know is that if people keep telling me "oh don't worry Sam will surprise you," or " he will be fine," I am going to go postal. It is so unbelievably presumptuous for anyone to tell me that. Besides if I listened to all of the know it alls then what am I supposed to do sit around with my thumb up my rear and wait for it to happen. No! We have to keep doing what we are doing.
I will post more pictures soon. My camera has been kind of out of commission but now its working again so pictures will be coming around soon.
Tuesday, September 25, 2007
Monday, September 10, 2007
Wednesday, August 29, 2007
WELCOME TO HOLLAND
byEmily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Wednesday, August 22, 2007
Mine is and probably will always be Cracklin' Rosie. Why? I have no idea. Maybe because I have no voice and you can't do that much damage to a Neil Diamond song. Or maybe because it is just a lot of fun to sing about a guy and his inflatable love doll. Who knows??? So what would you sing???
Monday, August 20, 2007
Scott and I celebrated our 4th wedding anniversary. It was actually on Thursday the 16th but we went out to dinner on the 17th. We went to the River View Cafe in DUMBO. For those of you that live in the city I highly recommend crossing to the dark side over the Brooklyn bridge and experiencing this really amazing and beautiful restaurant. The wait staff was friendly, attentive and unpretentious. The food was fabulous and so was the wine selection. There is a dress code, but it made the evening that much more special. Scott and I have not felt comfortable enough to leave Sam to go anywhere and enjoy ourselves. So this was a first in a year. Our last anniversary we spent in the hospital. Its crazy to look back and see the difference a year can make. The evening was a lot of fun, much needed and well deserved. Happy Anniversary Scooter, I love you!!!
Tuesday, August 14, 2007
The phrase once you have children its not about you anymore has taken on a very different meaning in this household. For the last week and a half Sam has not been himself at all. He has been crying non stop and has refused to do any kind of interactive or therapeutic activity. To say the least it has been really tough emotionally and physically for the both of us. Sam needs a lot more stimulation and motivation then most other children for everyday activities. Life is just too difficult for him. It would be much easier for Sam if I allowed him to just lay around and do nothing. I try very hard not to do that, but sometimes if he is really out of sorts you kind of just have to let him be. Kids can get burnt out just like adults. It is scary though to see your baby regressing a little.
Tuesday, August 7, 2007
10. Our scenic view is of our neighbor's bloomers hanging on the clothes line.
9. We learned that the f--- word can be used as a noun, verb, adjective, and a preposition.
8. I can see all of my neighbors on the entire block in their yards at the same time by just looking out my bedroom window.
7. There are real life mafia dramas going on in the back of my house. Goodbye Sopranos hello Cropsey Ave.
6. Fat male butt crack is in style in my neighborhood.
5. Nathan's (the real Nathan's) is 5 minutes from my house, and you know we go there for breakfast, lunch, and dinner.
4. Everyone's car is sparkling clean. If not you'd probably get shot.
3. You have the best of China, Italy, and Russia without having to leave your block.
2. No one speaks English yet everyone gets along.
1. Scott can go outside to throw the garbabge out in nothing but his tighty whities and a t-shirt, spark up a conversation with our neighbor in front of all Cropsey Ave. and not think twice about it and this is totally acceptable.
Tuesday, July 31, 2007
Monday, July 30, 2007
Wednesday, July 18, 2007
Friday, July 13, 2007
Thursday, July 12, 2007
Saturday, July 7, 2007
conforming to the standard or the common type; usual; not abnormal; regular; natural.
Serving to establish a standard. I think getting to the level of acceptance when you are faced with issues such as ours is establishing your own set of norms. Many people in our lives including my husband and I often say phrases such as "Well, if this was normal..." or "If Sam was a normal child...." This is our normal. We don't know any different and neither does Sam. Normal to us is Sam's feeding tube, suctioning machine, floppy body, crooked smile, open mouth posture... Sam's milestones and successes may be different from other children's, but its 100% normal for us. We relish in the fact that Sam is reaching and sitting even if its for very small amount of time. Every tiny bit of progress is a miracle in our eyes. Yesterday Sam sat unassisted while I sang the entire song of "Down on Grandpa's Farm" using four different animals. Today while Sam was in the exersaucer he started to get fussy so I said "Tell mama out" and sure enough he said "ou" while reaching up.
Thursday, July 5, 2007
Yesterday Sam stood with very little support with one of his therapists. He was always able to bare weight on his legs but never for this long and certainly not with this little support. Sam also was never able to hold his upper body up like you see in the picture. We had another small miracle last night as well. Sam said "more" perfectly while we were playing peek-a-boo. He has always voiced a pseudo more but was not able to say the "m" sound. But he did last night, YEAH!
Wednesday, July 4, 2007
Tuesday, July 3, 2007
Thursday, June 28, 2007
About St. Jo's...
St. Jo's is an excellent feeding and swallowing center for any child with feeding issues from texture sensitivity to situations as severe as Sam's. In my experience with feeding and swallowing disorders I have had a lot of families that went to St. Jo's and some loved it and some hated it. They are very set in their philosophy which I can understand may be a little scary for some parents that do not have a medical background. To my understanding they do not give up easily on even the most difficult situations. I think they are very knowledgeable and unpretentious. Anytime I have called with a question or concern my call has been returned that same day. I will add a link if anyone is interested in the program.
Tuesday, June 26, 2007
Monday, June 25, 2007
Saturday, June 23, 2007
I actually wrote this right after Sam came home from the hospital in October. My pediatrician thought it would be a good idea for me to type up a history and hand it to any new Dr. Sam might see so that I would not have to relive our experience over and over again. God bless that man!
Things are very different for Sam now then they were 7 months ago. We know that Sam's hearing is normal, he does not need as much suctioning, his vocal cord paresis probably resolved as he has very strong vocal quality, his face is more symetrical, and his movements are much stronger. We still have a huge road ahead of us. There is so much we still do not know. But what we can tell you is that Sam has the BEST team ever!!! We are very lucky that all of his care givers are so dedicated and competent this of course includes all of his therapists, nurses and doctors. So we are just going to keep on keeping on and do the best we can.