Tuesday, August 27, 2013

Celebrating!

I think the greatest sound is hearing Gage try to say words. He has been trying more and more. Usually only myself or David can understand him. His favorite word is "cars". Today while driving him to daycare he said "purple"! He was holding a purple car. It was clear as day! PURPLE! I wanted to cry. I was so happy. I asked him to say it over and over.

There is some relief in seeing him to try to communicate more with words. I've spent the last week really observing him and I see him interacting with us more and making eye contact. I wonder if it is possible that there could be another explanation for his behavior other than Autism.  I know we will soon have answers. In the meantime, I am keeping an observation log of his behaviors from my perspective and from what others tell me as well. I am also seriously considering having a sensory evaluation. I have been really watching him. At times, he will cover his era but not for long and generally there is nothing loud. He also touches things to his lips and not just food. Tonight we had to go buy him bigger shoes because his we're too tight. When I took him into Marshall's, initially he started to cry but he grabbed his car out of his shirt pocket and held it. Then he was fine. I thought maybe there was just too much stimuli in the store. We did not have any behavioral issues at all. I was by myself with both kids.  

Maybe I am just in denial. But I really feel in my heart that I need to explore everything before just putting a label on my son. I want him to have all the best opportunities he can have. If there is no other explanation for his behavior then I can accept that. I just want to make sure.

Until next time...

Friday, August 23, 2013

Grieving

It's funny how life has it's way of teaching you things. I have been going over the last week. I realize that I have been going through the stages of grieving in more than one way. First in coping with Jill's passing and secondly in hearing Gage's diagnosis. I never thought it possible that one could experience more than one or two stages of grief at the same time. Right now I feel like I am experiencing all five of them. Elisabeth Kübler-Ross identified the five stages as denial, anger, bargaining, depression, and acceptance.

I think in my heart I have always know that Gage was "different". He didn't do any of the things that "normal" babies do. He never really babbled. He never really responded to my facial cues or expressions. In watching Jillian do things now, I realize how much he didn't do.

I am going to bluntly honest right now and I know that this doesn't make me a bad mom...it makes me human. I would be lying if I didn't tell you that I am heartbroken, angry, and lost. No parent wants to hear that their child has a disability. Don't get me wrong I love Gage more than anything. He is perfect in my eyes.

I know I have been in denial this past week. I am trying to get to a point where I can accept this. Right now I don't want to. But I had a meeting with Gage's daycare and the reality is he does have difficulties that I don't see. Maybe I don't want to see them. Maybe I see them and I don't want to accept them. I don't know.

This is not a pity party. I am hoping by writing this I can not only help myself process this but maybe I can help another parent who might be going through the same thing. It is hard to even know where to start. Gage will be seeing a neurologist to get a full evaluation. I will do what is best for my child. I know that he will be successful in life. His path will just be a little more difficult. This will only make him a stronger person.

As I write this, I realize that life is amazing. God knows what he is doing and I have to trust that. I am not perfect. I am human and I make mistakes. I only pray that he gives me the wisdom and the strength to help Gage.

Until next time...

Monday, August 19, 2013

Coping

As I sit here, I've been trying to figure out what to write. I've had a rough couple days....not that I am complaining I am alive and relatively healthy. I guess I am just tired and really wish God would give me a time out. I know that he doesn't give us more than we can handle but right now I feel so overwhelmed.

I've been thinking a lot (which for me can be a double edge sword). The other day after Gage's evaluation I picked up the phone to call Jill. I knew she would know what to say. Then I realized she wouldn't answer. She always knew what to say...even if I didn't want to hear it. I respected her opinion. I would give anything right now to hear her tell me to stop feeling sorry for myself and to put my big girl panties on and advocate for Gage. I know I don't like what is in front of me but it is the path that God has given to me. I can accept that.

My little boy is special this I know as every parent knows that their child is. I wouldn't want him any other way. He just has a different path to walk. Life was not meant to be a straight a narrow path...that's not interesting enough. He will carve out his own way and create a path that is unique like him. I only hope and pray I can guide him along the way.

Until next time....

Wednesday, August 14, 2013

Labels

So my 2 1/2 year old has been work with Early Steps for the past year. Early Steps is Palm Beach County's early intervention program for developmental delays. Gage was delayed in the area if speech. He has made a lot of improvement but still struggles. I see him trying to communicate more often.  At his first evaluation last October, we were told that he needed to be further evaluated for Autism. Here is where I am going to go off on a tangent.

As an LMHC, I understand what a diagnosis or label means.  I am starting to think that society has forgotten what it is like to be an individual. This goes for so many other things outside of a diagnosis. On sports teams, I have heard of occasions where everyone on all the teams are getting trophies, schools wearing uniforms...those are just a few. What happened to the days where we were able to have our differences. Because a child doesn't act like the "norm" does that men there is something wrong with them. Couldn't there be another explanation?! Why are we so quick to slap a label on people nowadays. I hear all the time "my child has ADHD" or "I'm bipolar". News flash these are not great labels to have.  I feel like people want a label so that they have an excuse a reason to blame their behavior on.

I am in no way undermining the diagnosis or saying that people don't really suffer from these disorders. I am just saying that how can one be diagnosed with something after only seeing someone for a very brief time (1-2 hours). I understand what goes in to gathering the background information. I am just not sure we mental health providers have it right. Shouldn't we be using the least severe diagnosis until there is more diffinitive information. I mean at least see the person or child more than once and in different settings. God made us all unique and we seem to be taking that away from our children.

Ok I think I've said my peace on this for now. I will continue to fight for my child and the services he needs with the least severe diagnosis possible.

Until next time...

Monday, August 12, 2013

Perspective

As I sit here on the floor of my little boy's room waiting for him to fall asleep, I find myself thinking...thinking about Jill and life. I spent the last few weeks reading my blog, reading Jill's blog, looking through boxes for pictures. I want to find anything that I might have that has Jill's mark on it. As I look back on those actions, I realize that I don't need any of those things. Jill will always be here.  She has made it known to me and others that she is here. The day after her passing the Today show had on Barry Manilow and used the Copacabana to introduce him. You see Jill absolutely LOVED the Copa. She had named her car in college Lola the Corolla. She was letting all of us know that she is still here. As I think of stories or explain to people about Brett McSundy, I find myself saying it was just. Jill.  She had this way and one can not explain it. She had nicknames for everyone. She knew what she was doing. I am not sure I will ever be able to call the hospital anything but the "klink". I think we could write a book just on Jill-isms.

Thinking about this gives me some perspective. Life is short. We all know this and we all say this. But do we live this. Jill did. She lived everyday to her fullest. We are all going to die one day this is a fact of life. The only difference will Jill was she knew that it would be sooner than most of us. She made every moment count. So I challenge everyone to not hold on to the past and to look in front of you. There is so much that we miss. It's easy to get caught up in the craziness of life. But we all need to take a moment to BREATHE and get some perspective.

Until next time...

Sunday, August 11, 2013

I have been trying to think about what to write for the past week. Life for me has changed so drastically since I started this blog. I spent the last week or so re-reading my blogs and I came to some conclusions.  The main conclusion is that I was SO unhappy. I am not quite sure what about. I think that life teaches us many things. I also think that things happen in your life as it should. We go through things to teach us and if we aren't willing or haven't learned the lesson, then I believe we become "stuck". This is where I think I was back then...STUCK. I believe that my surgery was my turning point. I am in such a different place. I am married with 2 beautiful children. Life is far from perfect but I enjoy every second of it...even when I am frustrated and tired as hell.

Since Jill's passing, I find myself re-evaluating life and the way that I look and live it. God has a plan for all of us and I believe that when we have served our purpose that is when he calls us home. I will never be the same. I know that Jill is still here. I believe that she will always be with me and Jillian. I only hope that I can help Jillian know who Jill was and what she meant to so many people. I will never forget calling her the day Jillian was born to tell her baby girl's name. She cried. She was so honored when really I was the one who was honored. Naming Jillian after her was only a small way of me letting her know what she meant to me. Jillian has some big shoes to fill (and lots of them).

I am not sure I have allowed myself to really grieve Jill's passing. I am not sure she would want me or anyone sitting around crying. I have had my moments. I want not to be sad but to celebrate her time on this earth. I was lucky to have had her in my life. I want to help her legacy live on through me and others. I know that she wanted to write a book and I would love to make that happen.

Until next time....

Saturday, August 03, 2013

A Long Time

It's been a long time since I've been active on this blog. In actuality, I forgot about it for some time.  After I moved back to South Florida, Facebook really took off and I stopped blogging. It was a recent event that caused to me find this  site again.

In past blogs, I wrote about Jill. On July 23, Jill passed away. Jill fought a long and hard battle while here on this earth. She had Cystic Fibrosis (CF).  I am not sure she truly understood the impact she had on myself and so many others.  I only hope I can help keep her memory alive. I have struggled over the past week to find the words to describe what I am feeling. However, I don't think there are any words. As a therapist, this is difficult for me. Maybe I should do a sand tray.  I think I am just finding it difficult to even organize my thoughts.

Jill was an amazing person. When I found out I was pregnant with my second child, she took an interest in helping me name her when she found out it was a girl...suggesting I name her after her.  When I was getting close to the end of the pregnancy, I realized that naming my little girl after Jill would be a gift I could give to both Jill and my baby. On January 27, 2013, Jillian was born. I will never forget calling Jill and telling her the baby's name. Little Jillian has some big shoes (and lots of them) to fill.

I am hoping that by returning to this blog I can not only cope with the loss of such a wonderful friend and person but also keep her legacy alive.

Until next time...