Thursday, September 10, 2009

My mom was one of those very lucky people who was able to cultivate many long-lasting friendships. Her oldest and dearest friends were a couple whose daughter is my age. The girl and I didn't stay friends but her parents and my mom were able to stay close until my mom died. One of the saddest tasks that I had the afternoon she died was to call them and let them she had passed. Many calls were made for me but calling them was the one I chose to tackle. The moment Laura answered the phone she knew why I had called. She was expecting this, as we all were, but was nevertheless shaken by the news. I don't remember much of that conversation but do recall both of us laughing, crying, and trying to comfort each other. Laura and her husband Greg were just two of the people whose lives were touched by my mom. Another such person was her friend Michelle. They knew each other for a slightly shorter length of time but had a bond that was a wonderful thing to see. For nearly a quarter of a century my mom and Michelle together went through all that life threw in their direction. My mom was there when both of Michelle's daughters were born, as well as one of her granddaughters. They worked together, played along side each other, and had an uncanny ability to finish each others sentences. Michelle was right there with my mom throughout her illness and took her to all of the appointments that I was unable to take her to. She was also the person who was with her when she passed on. On the Saturday prior to my mom's passing Michelle began to feel ill so she stayed away for a few days. She felt well enough on Wednesday to come over and visit. I had been there all morning long, only leaving for a short while to visit a friend who was leaving town. When I knew my mom was in good hands with her closest friend I decided to go home for a while to see my boy. It was when I went home that she passed away. Her friend was meant to be there to witness that, not me. I had told her when I left that afternoon that I was OK with her leaving and that I only wanted her to be at peace. I had begun to say that to her each time I went home over the previous four days. I didn't think she was waiting for my permission or anything, but I did think it was important to let her know I was ready to let her go.

I think it's such a beautiful tribute to the friendship that my mom and Michelle had that she chose to leave while her friend was at her side. Some may argue that we don't chose that but I disagree. They experienced all the cycles of life together prior to my mom's passing and with her being there for that they truly did go full circle together. I don't see Michelle very often anymore but I do feel like I am experiencing a bit of my mom still being here with me when I am around her. Even hugging her feels like a hug from my mom.. that warm, enveloping feeling that only a mom can give to her child.

Today is the nine month anniversary of her passing. The pain is still there on a daily basis as is the feeling that something very vital is missing from my life. I sometimes wish I was one of those people for whom the passing of a parent was a fairly easy thing but I think it's a tribute to how close we were that it has not been an easy transition. I do my best not to dwell on my sadness, I really do, but on each monthly anniversary of her leaving it feels like the wound opens up just a little. I'm really dreading the year anniversary in three months. I know she wouldn't want me to dwell on her death but celebrate her life instead. I am hoping that will become easier in the years to come. The old adage about time being the best healer is true but it is so slow. William Shakespeare said that grief makes one hour ten and that is something I can definitely relate to. I don't expect to ever be completely free of sadness regarding her passing, but I do hope that when I come to point of acceptance - the final stage of grief - it will become more real to me and going on will be easier. Time not only heals but it will tell, I suppose.

Thursday, August 20, 2009

I came across a list recently that I really wanted to share here and comment on.

The Nine 'Rules' For Parents Of A Child With Special Needs

1. Take one day at a time, and take that day positively. You don't have control over the future, but you do have control over today.

Such an important thing to think about.. as a parent of a special needs child I worry about his future perhaps a bit more than the parent of a typically developed kid. Truth be told, there isn't a damn thing I can do about beyond giving him access to the therapies he needs, doing my part in implementing their teaching tactics, and providing my son with all the love and encouragement I can muster up.

2. Never underestimate your child's potential. Allow, encourage, and expect your child to develop to the best of his abilities.

I hope I do that consistently, especially the first part about never underestimating him. I think that if he were to ever see me do that he will follow suit.

3. Find and allow positive mentors: parents and professionals who can share with your their experiences, advice, and support.

I need to work on this.. I do have a great friend whose son is the same age as mine. She and I have been on this journey together for a long time. More about her later though..

4. Provide and be involved with the most appropriate educational learning environments for your child from infancy on.

This is one rule that I pride myself in being a stickler on. I have been involved in each aspect of his education thus far and have accompanied his classes on each of their field trips. I think I have just as much fun as the boy does and it gives me to chance to get to know and talk with his teachers and aides.

5. Keep in mind the feelings and needs of your spouse and your other children. Remind them that this child does not get more of your love just because this child needs/gets more of your time.

Ok, ok.. I'll concede that I am guilty on this one. The needs of everyone, including myself, have all taken a back seat to Nick.

6. Answer only to your conscience; then you will be able to answer to your child. Allow yourself jealousy, anger, pity, frustration, and depression in small amounts whenever necessary.

This is another hard one.. I don't like to allow myself to feel those feelings too often. When I think of my son's disability I honestly try to see it only from his standpoint and how it effects him. Yes, I am effected by my son being autistic but not in the same league he is. To feel those feelings mentioned would make me feel like I am being ungrateful for just what an amazing guy he is.

7. Be kind to yourself. Don't focus continually on what needs to be done. Remember to look at what you've accomplished.

I honestly do try to work on this one. I know that Nick is happier when I am too so taking that in account makes me wish to do things that benefit us both.

8. Stop to smell the roses. Take advantage of the fact that you have gained a special appreciation for the little miracles that others take for granted.

I really like this one and totally agree. I am ever grateful for anything my child says and praise him for every attempt at communication.

9. Keep and use your sense of humor. Cracking up with laughter can keep you from cracking up with stress.

Also, very true. Anyone who knows me knows that I have a goofy sense of humor. I truly believe that wit is an important element in keeping ones sanity.


I'd like to post something here about a great lady that I admire and love. Five years ago I met Taria on an online baby site. We're clear across the country from each other yet became great friends. Our boys are the same age and are both autistic. She's been my partner on this journey through diagnoses, therapies, and the tracking of our boys progresses. I am grateful for her sense of humor and kindness and think she's an amazing person. This afternoon she gave birth to her much wanted second child and I couldn't be happier for her. Welcome to the world, Justin.. you are a lucky little man indeed. Love ya, T :)

Monday, August 17, 2009

First day of school

Nick went back to school this morning after a month and a half long break. His old class was merged with another special needs class at a different school than he had been attending. Budget cuts forced the school district to combine classes and now he's back at a school he attended for the half of his kindergarten year. That particular class wasn't a good fit for him so I arranged to have him transferred to one that his teacher and I felt was a better match. It was a gamble that paid off as it proved to be an environment that was better suited to his particular needs. He will still have the same teacher he's had for the last year and a half and I am so grateful for that. Sadly none of the aides that he'd become used to and fond of made the switch to the new campus so that will be an adjustment for Nick as well as his classmates. I drove him to school this morning to help make the transition easier for him. He seemed a bit confused when we first got there but smiled and hugged his teacher when he saw her. I think as long as Nick has some familiar faces he will be fine. Thankfully he does well with change, for the most part. He adjusts fairly quickly to new situations and people as well.

I was bound and determined to take a couple of pics of my now second grader this morning.. as you can see he was not making it easy for his snap happy mama:









One can tell from looking at these pictures that he was tired and just not in a cooperating mood today. I show them here because I came to a conclusion a long time ago and that is this - my child is so photogenic that there is no such thing as a bad picture of him. I'm insanely proud of him hence the constant sharing.

Thursday, August 13, 2009

Happy Birthday baby boy!

Consider some stats here..

Tuesday, August 13, 2002

7:48 PM

7lbs 9oz, 20 inches long

Black of hair, blue eyes

Lips the color of cherry kool aid

A very proud, exhausted mama there to gape at him in amazement when he was handed to me for the first time


Thursday, August 13, 2009

50 lbs even, 47 inches

Light brown hair, eyes a lovely mix of gray and green

Still in possession of the nicest set of lips known to man

A very proud, often tired mama who still thinks the sun rises and sets on that little dude


I cannot believe my baby is seven years old today. That doesn't seem possible at all. Sometimes if I really try I can remember how it felt to have him living in my body. All that time spent connected, literally and in every other way you could possibly imagine. I wasn't one of those women who loved being pregnant but I enjoyed that connection with my child while he was still my passenger. I recall laying there feeling him move and imagining how different my life will be when he would be moving on the outside instead. Looking back I don't think I had a clue. I knew of love before I met him but not of this strain. I suppose my first aha moment of how things were to about to be so different from before was that feeling I felt when I finally got to meet my boy. I was dumbfounded, for sure. A completely surreal feeling washed over me.. It was amazing to think that this person I was holding had emerged from my body and was my child. I'm a highly emotional person by nature but I was too overwhelmed to cry when I first saw him. The tears and realization that he was indeed here and mine came later on that night. I remember trying to feed him and looking down at his little face and having it all hit me at once - the love I felt for him and the feeling of total bliss and contentment.

Seven years later those feelings are still there, magnified times ten. He has brought so much to my world that I could spend the rest of my life thanking him for making it a better place and it wouldn't be enough. His smiles are my own form of Valium; soothing me when not much else even stands the chance. There has never been another person who has made me feel more loved and valued than that little man. Since the night he was born we've had this amazing bond. People have often said that we are each other's world and I happen to agree and that fact is one of the things in life that I am most grateful for. I've always seen some good examples of how good the mother/son bond could be and I am so grateful I was given the chance to forage that with my little man.

Life has thrown us some twists and turns in the past seven years and the only constant has been the great bond we've had. When he was diagnosed with Autism I honestly didn't know if I was capable of raising a special needs child .. I often wondered if I could rise to the task for him and give him all that he needs to thrive. I still have my days where I wonder that. Supermom I am not, but I am a very loving one and make it my goal that my child is on a constant drip of love from me. It's paramount to me that he knows I accept him as well. I am grateful for each of his abilities and hold out hope that the remaining areas of deficit will show progress. I am thankful that he only has Autism and not an incurable condition and I am so acutely aware of how lucky I am that he is able to express and receive affection. With him not being verbal enough to say "I love you, mama" it would be quite hard if he wasn't the type to express those sentiments with endless kisses and hugs. Thankfully he's a total mush box and I am the lucky one who reaps the benefits of that the most. As I said before, I don't let myself wish he was typically developed. He is who he is and I happen to think that he's amazing, sweet, very smart and simply the cutest boy ever. Bias much, right? You bet!

One of my favorite children's books is one called "I Love You as Much..." Each page of the book shows a baby animal with its mother and is told in a lullaby rhyme form. The mother whale says to her child, "I love you as much as the ocean is deep" and the mother mountain goat tells her baby that she loves him as much as the mountain is steep and so forth. Beautiful sentiments in all but my favorite passage accompanies a depiction of a human mother and her sleeping child and the last line of the book is as follows:

"Now sleep, child of mine, while the stars shine above - I love you as much as a mother can love"

I cannot read that line without tearing up. Such heartfelt words that I completely agree with. There is nothing like that love and I think.. no, I know that I lucked out being given this child. A great person recently said to me that Nick got a break when the big guy handed out moms. Quite flattering but I think it's very mutual. I couldn't ask for a more loving, sweet boy to call my son. I'm so proud of him and intend to spend the rest of my life making him aware of how special he is to me and everyone who knows him. Part of that is because it's my job as his parent and another reason is that I know it is exactly what his Nana would have wanted to do if she had not been taken from him so soon. This is his first birthday without her and as with every first, it's painful. She was always a big part of his birthday and came over for dinner each year on that day to celebrate his day. Her chair may be empty this year but her spirit is with him, I know that.


Happy Birthday, my beautiful bubbalicious boy. Mama loves you!

Here is a video montage I made of some of my favorite pictures of my boy.


Thursday, August 6, 2009

Losses all around

This afternoon I found out that a friend of mine lost his mom to cancer. Matty is a great guy with a heart of gold and my own heart is breaking a bit thinking of what he's feeling now as well as what is to come for him and his family. I can do nothing to help, except to let him know he's in my thoughts. Sad :(

Just a while ago I found out that one of my favorite filmmakers of all time has passed. John Hughes died today at the age of 59 after a sudden heart attack in NYC. His movies defined my generation and provided me with countless hours of enjoyment. He had a knack at crafting stories that just about anyone in that age bracket could relate to. He understood teenage angst and had the ability to craft iconic characters from each gender that no other filmmaker was able to do, in my opinion. I am certain that tonight there are many people who are going to watch a movie of his and remember how great his talent was. I know I will be doing that.

Looking at a list of the movies that he is responsible for during his 80's heyday is astonishing. "National Lampoon's Vacation","Sixteen Candles" "The Breakfast Club", "Weird Science", and "Ferris Bueller's Day Off" are just a few that come to mind. He tried a more grown up take in the late 80's with movies like "She's Having a Baby", a movie I later watched a couple times while pregnant with my boy. He was responsible for writing one of the biggest blockbusters of all time, "Home Alone". He pretty much faded out of the spotlight following that, only doing some screenwriting under pseudonyms.

My favorite of his movies, without a doubt, is "Sixteen Candles". It tells the story of Samantha Baker, whose 16th birthday is forgotten by her family in the midst of her older sister's impending wedding. I really have no idea how many times I've seen that movie; if I had to guess I'd say 20 or so. Of all his movies this one has the the most memorable characters and some of my favorite dialogue of the movies of this genre. Some of the characters that made this movie unforgettable are: Farmer Ted, the geek; Jake Ryan, the total hottie; the oddball set of grandparents on either side of the family and of course, the Chinese foreign exchange student, Donger - Long Duc Dong. Two of my favorite dialogue sequences that always made me giggle are these:

The Geek: You know, I'm getting input here that I am reading as relatively hostile
Samantha: Go to hell.
The Geek: VERY hostile

Grandpa Fred: Dong. Where is my automobile
Long Duc Dong: Otto-mo-biiiile?

After hearing of his passing I searched Youtube for a clip of this gem to watch and found the original trailer.





RIP John Hughes and Rosemary Barnett
:(

Wednesday, August 5, 2009

Coping and Hoping

My son has begun to receive respite services from the county. Respite is a service provided to give parents of special needs kids a break. The provider is trained in the particular disability of the child and acts as a babysitter. They either take the child on a community outing or sit with them at your home. We've had both lately and it's proven to be a huge help to both the boy and myself. I get some free time and he gets to go out and experience an adventure with his new friend. He is now 5 weeks into a seven week break from school and we really haven't had a whole lot of time apart from each other in that time span. I think, for Nick and I, breaks are essential. We have a great bond and I know that I am the key person in his life as he is mine so him needing time away from me isn't something I take personally. As much as I love my child and revel in my role as his mama, I need more that that to fuel me as well. I have always thought that the moms who stayed home with their kids full-time were the real unsung heroes of this world. And I have always known that wasn't something I either wanted or would be good at it. Today is my son's third outing with his awesome new pal. He has behaved so wonderfully each time they've gone out. She's taken him to a few movies and he just sits there with a huge smile on his face the whole time, watching the movie and chomping on his popcorn. I am SO proud of my little man for being so wonderful for her! I was a bit nervous about how he'd fare with her the first time out but my fears were unfounded as he sailed through that with flying colors. I really think this respite will be good for the both of us, I only wish I had taken advantage of the opportunity a while back when it was first offered to me. Before she got sick my mom was my de facto respite provider. She cared for him so I could work on Saturdays and often when I just needed to go off and do something for me. I used to ask her often if she felt I was taking advantage of her and she'd assure me she did not. She loved to care for the little man and no amount of time spent being with him was too much for her. I appreciated that so much and always made sure she knew it. I was very secure in the knowledge that my child was being well cared for when she had him. This is one of the things I miss the most, not having her around - that security.


When my mom passed nearly 8 months ago it was such a crazy time for us. Christmas was on the horizon some two weeks later and I was so worried about how Nick was going to react towards losing her and seeing me in a sad, confused state. I went on automatic pilot following her passing and bottled alot of emotions. My major concern was making things as normal for Nick as I possibly could. The problem was simply this - my son and I are so connected that even if I tried to pretend things were ok on the outside - and I did - he knew better. Even if I wasn't outwardly showing emotion it was below the surface and he both felt and reacted towards it. His reactions were puzzling to me because they totally went against the grain of his nature. My sweet, loving boy became very agitated and rough with me. I understood that it was the pain and confusion that was causing him to do that but it hurt all the same. That lasted for close to two months before he began to behave like the Nick we all know and love. I felt so badly for him, knowing he had to have many questions that he was unable to ask. Kids always do in death situations and the fact that he couldn't just ask me when she's coming back or tell me how badly he missed her had to be terrible for him. I know he understands what I say to him but still must have wanted more clarification. Try as I might I cannot fathom how hard that was for him. Thinking about how hard he struggled with that is still hard to do.

Since I am no longer as worried about him I am now focusing on me a bit. I began to go to grief counseling to focus on helping me come to terms with the finality of her loss. It's not just kids that have a hard time with that, apparently. I am convinced that grief over such a profound loss is a life-long process. You never get over a loss like this, despite wanting to. Coping, accepting, and learning to live without that person become your main focuses. I think I have been in a kind of denial about just how differently my life would play out without her. Sometimes I worry that I am still not in a place where the full realization has hit me yet. For comfort I still cling to some material things that bring me peace - her old theater sweatshirts she loved, even a sweat-jacket of hers that I wore home from her house the night she passed. I even still have all the numbers she could be reached at in my cell phone and cannot bring myself to erase them yet. Maybe that is me hanging on to the past but since the past is when she was here, its more preferable to the present where she's not. Another reason her loss was so hard for me to take was the fact that my father isn't a part of the lives of my son and I. Sadly, even when he was he was more a peripheral part of my life. The role he played in my life was that similar to a distant uncle or cousin.. we never had a real father/daughter relationship. I think that fact has made the loss of my mom even harder to take. She wore many hats with me, for sure, and strived to be the same way for Nick. The saddest part of her loss is the simple fact that her passing robbed him of that. That makes me even more sad than the fact that it was I who lost my mom. I was lucky enough to have her for over 39 years - my boy only had her for six.

I truly hope that this counseling aids me in coming to terms with this. I'm committed to do what I need to do to both deal with the lingering pain and move past it the point where it dulls and is more manageable. I recently read the book "Motherless Daughters" and was left with the feeling that my feelings of fear, ambivalence, and sadness are so very appropriate and all too common. The book asserts something that I wholly agree with - that some women, myself included - are as profoundly changed by the loss of their mom as they were by the life they lived. One way that resonates with me is how I have been called upon to to assert myself a bit since she passed. I'm a softer person by nature than my mom was. She never shied from a confrontation whereas I tend to run from them. When she passed it dawned on me how I had always been dependant on her to provide me with the added backbone I was sorely lacking. I know her well.. she would want me to carry on and try to stand on my own and face up to people when the situation called for it. Things that were easier to tolerate before have become harder since that realization. Weak as I sometimes feel, I have begun to feel bolstered by what defined her - that ornery, fighting spirit. She used to tell me that I always underestimated my own strength. In the letter she wrote to me to be read after she passed she reminded me of that again. I used to think that was just her, as my mom, seeing me in a more favorable light that I do myself. Sometimes I'm not so sure she was wrong. Maybe it's her spirit guiding me now. Whatever it is, I have been altered and will never be the same.

Next week we are facing another milestone, the first birthday of my son since she passed. It's hard for me to imagine celebrating something like a birthday without her because she was so integral to those celebrations. Just like with any first it will be hardest but we'll solider on and get through that day. I know she's still with us in spirit, especially with Nicky. She may not be there physically but she's still there. That is where the coping comes to play - having that be enough when all you want is her there in body too. A great learning lesson for everyone involved, I think.

Monday, July 6, 2009

Something I just wanted to share..

Recently I came upon a quote that really resonated with me and I felt the urge to write about how much it affected me here. As far as I am concerned, truer words have rarely been spoken.

"Making the decision to have a child - it's momentous. It is forever to decide to have your heart go walking outside your body"

A very simple passage but one that really stuck with me. Beautiful words to describe a parents love for the child they helped create. Since I only have the mother's perspective to go with here, I can only speak as the person who grew a child in my body. I know a fathers love for his child is strong, no doubt about that, but there is something that seems magical and powerful about a mother's love for her baby. Since I lost my mom I have given alot of thought about maternal love and how it's affected me as a grown woman and the role it has played in how I express love for my boy. Stating the obvious here I will have to say that there is just nothing more gripping and life-changing than that kind of love. Other types of love fade but that one just seems to strengthen over time. Struggles with how difficult parenting can be are forgotten when you look at your child and know how it's all worth it. All of this is just from my point of view, of course, but I am sure these feelings are universal in nature.

Love, in any form but parental love, is something that is hard to explain. Either you feel it or you don't. The love a parent has for their child is the most profound form of it but that's not to say that those who have never reproduced are incapable of feeling something just as strong. Speaking as someone who loved a pet profoundly, I can say that kind of love is in the same ballpark as the one I have for my son. The main difference is this - I have been able to live my life and go on without my dog; I don't think the same could be said if I was without my son. Gizmo touched my heart but Nick owns it. He owns it because he IS my heart - it's as simple as that.

I've always been a big fan of letting pictures tell the story so here are a couple of pictures of what I think love looks like.

The below pic is one of all time favorites. This picture never fails to warm me and make me smile.




This picture was taken last summer at my mom's house. The look on her face as she looks at him is so sweet. His smile as he basks in that attention is just as wonderful. I love this picture and am so very glad I have it.