Reflections

As I sit here watching the New Years Eve specials on TV, I am reflecting on 2013. This year has been one wild roller coaster. Some of the twists and turns were expected. Others took me by complete surprise. In January, my sweet baby girl joined this world and made my family complete. She has been my ray of sunshine when I have needed it the most. I never could have known then how profound her birth would be.

The months seemed to fly by with all the craziness of life. Gage had his therapy to help with his speech and I wasn't ever sure if I was ever going to hear my sweet baby boy say "Mommy". I now hear it daily a million times and I don't think I will ever tire of it. His speech has improved significantly. Everyday I hear new words. Tonight, he counted to 20 with me. Gage was evaluated in August for Autism. I fought the diagnosis but in October I relented in order to get him the services that could help him. I am excited for the road that lies ahead of him in the coming year. I love him more than anything in the world and I only hope I can help him grow into an amazing young man.

In July, I lost a very dear friend, Jill Balboni. She had lived with Cystic Fibrosis her whole life and struggled to breathe daily. Jillian is named after her. I am so happy that Jill was able to see this. I am saddened that she never was able to meet Jillian in person. I do know that Jill is with us everyday. I look at Jillian and all I think about is Jill. Oh and it helps that Jillian has taken to shoes and sparkly things. These were some of Jill's favorite things. With Jill's passing, I was reminded that life is short. I know we all know this but I think that sometimes its easy to forget in the hustle and bustle of life. In Jill fashion, she reconnected many of her friends. I was also able to get to know others that I never had the opportunity to for whatever reason. I am grateful for that. Jill taught me so many things. I am not sure if I could even recall all of it. Jill was an amazing person. I am so lucky to have had her in my life.

Reflecting on everything that has occurred in 2013, I am excited to move into 2014. I feel like there is so much  opportunity ahead of me and my family. I am excited to see how my children grow and flourish. Life is  a journey not a destination. Happiness is not something you search for...you create it in yourself. No one can make you happy but yourself. The experiences we have in life are meant to teach us and help us grow. It's all about perspective. With that said, this year my resolutions are going to be for me to live in the moment and slow down. I don't want to miss a thing with my children and family.

I hope everyone has a safe and Happy New Year!

Until next time...

Eligibility

So today was Gage's eligibility meeting for services through the school board. David and I were very happy with the results. He will be going to a PreK program at an elementary school for a full day starting in January. He will also get speech during his day. This is a huge relief to me. I know that he will get what he needs on a daily basis and hopefully he will start to interact socially more. Overall, Gage is in the average range for his intelligence. He continues to have a big discrepancy between is receptive and expressive language. He understands far more than he can express. Every day it is getting better.

I know that we are lucky. Gage is not severe. This has definitely opened my eyes not only as a parent but as a clinician. I am very careful not to label anymore. The diagnosis does not define who you are as a person. Gage is not autistic. He has autism. There is a big difference. Gage is an amazing child who loves cars, trains, and planes. Autism never will define him as a person. He will learn to cope with the symptoms and do great things in life. As will every other child with Autism.

Until next time....

Little things

Well November is over and of course I failed to list what I was grateful for daily. I realized that even though I didn't acknowledge out loud (or in writing)  what I was grateful for didn't mean that I wasn't thinking about it. Actually I thought about it all day pretty much everyday...I was just too Exhausted to write it out.

I think this is the most valuable thing I've learned an I am thankful for.  I've learned to stop and notice the little things. Gage has taught me that. Tonight I was brought almost to tears by Gage. We were driving (ok I was driving) and all of sudden he says "red light stop" "green light go". I couldn't believe my ears. You see Gage never says anything when we are in the car even if I try to engage him. Most times I end up having a conversation with myself. So hearing him say 3 words together brought tears to my eyes...to be able to communicate with my son is so precious to me. I don't take that for granted. So to carry on any type of conversation with him is more valuable to me than anything else in this world.

November has been an eye opener for me. I have done a lot of soul searching and realized a lot (although I could do without the anxiety and mini panic attacks). I know that there are lessons to be learned in all of my experiences and I am trying wholeheartedly to open myself up to it. I am really trying to let go of what I can not control. It is definitely a daily struggle. I just know that is have to live with myself and my decisions and if I'm ok with that then nothing else matters. Life is constantly changing. We all have our paths that we must take. Just remember to try not to judge others unless you have walked in their shoes. I am trying to remember this for myself.

Gage has definitely taught me so much more than I have taught him and I am so thankful for this gift. Life is short and I have been reminded of this all to much recently. Make the most of each day given to you.

Until next time...

What I have learned (so far)

I realize everyday that I am constantly being reminded that I really don't know anything and I am always learning. Here are just some of those things that I have learned.

• ...that life with kids is fast and there is no way to slow it down.
• ...that planning can sometimes be a complete waste of time because there are times when nothing will go as you planned it and it really is OK.
• ...that perception is everything to a person and I may not be able to help them (or myself) see things differently.
• ...that relationships are fragile and sometimes we have to handle them with care.
• ...that it's really easy as a mom to get lost (and I don't mean sense of direction).
• ...that I really miss those who are no longer here very much.
• ...that sometimes my kids are way smarter than me. 
• ...that sometimes (ok most of the time) I take myself to seriously.
• ...that I need to remember to play.
• ...that I may be wrong sometimes (not often).
• ...that tag teaming can be very effective and helpful to a parent's sanity.
• ...that I don't always have to have the answers.
• ...that some people will never understand until they walk in your shoes and my shoes are small so they may never understand.
• ...that as much as I would like to change the world I have to start with myself and trust God to do the BIG stuff.

I have slacked on the whole grateful thing, but I realize that I am grateful everyday for everything around me both good and not so good. I am grateful to have the experiences I have everyday and I have had thus far in my life. I have been so lucky to come across amazing people who have taught me so much. I know that I have taken for granted those experiences.

I feel so privileged that God chose me to be Gage's mommy and every time I hear that sweet word come out of his mouth, I melt. I think the most important thing I have learned and I am reminded of daily is to not take the little things for granted. And I think it is this that I am most thankful for.

Until next time...

What I am Grateful for

I can't believe that November is here already. I am not sure where the year has gone but it's almost over. Usually during the month of November I do 30 days of what I am grateful for. I have always just posted this on Facebook. This year I am going to blog it. I know I am a day behind so I am going to talk about 2 thing that I am grateful for.

Day 1 - I am grateful for my family. My family is amazing. I knew that this was what I always wanted. We are not perfect but we make it work. I would not trade this for anything.

Day 2 - I am grateful for my education. My education allows me to give back and help others. It also helps me to advocate for Gage.

I know that I should take time daily to acknowledge the good in my life and what I am grateful for. I always try to consciously do that. But like all things life seems to take over. It's easy to get wrapped up in what we are doing on a daily basis. I have realized that I need to look at those things more often because it helps me to remain positive when I tend to want to bitch and complain about the little things.

So for the next 28 days I will (hopefully) put up at least one thing I am grateful for.

Until next time...

Grateful

I just got home from Trick or Treating with Gage, Jillian, Brionna, and some of her friends. I have to say as much anxiety that I gave myself over it, it actually turned out pretty good. Gage was bug. He doesn't like anything on his head or his face so we had to get creative. His grandparents (David's parents) got him a shirt that had a hood on it and it was a bug. So we used that and put him in black pants. I was not really caring what anyone thought and I dared them to say anything. I was very surprised and happy at how the whole experience went. We went to the first house and Gage wanted to just run right in. He eventually figured it out and it was really cute. He would run up to the door and put his pumpkin down. Then he would knock on the door and wait by his pumpkin. He would then attempt to say "Trick or Treat". If the people would let him pick the candy he actually would only take one piece. Everyone was so nice and would actually give him more. I am so relieved. I was afraid I was going to have to "educate" people. Luckily, it went smoothly. The plan was to only go for a few houses and we ended up going for almost 2 hours. There were no meltdowns and he followed directions.

I am one happy momma. It's the little things. Things that not every parent thinks about that mean the most to us. It's put life in perspective for me. We only have one life. We need to make the best of this journey. It's very easy to forget that with the hustle and bustle of life. But we need to remember to SLOW DOWN and take time to smell the roses and everything else around...even if it's not pleasant. Life is about the experiences and the memories...good and bad.

So with that I want to say Thank you to all those wonderful people we came across tonight that were understanding when Gage tried to come into their home, when he didn't look at their faces, when he used his sign for "thank you" instead of saying the word. I am grateful that this was a good experience for Gage and his sisters. That is what it is all about.

Until next time....

Perfection...

As I sit here trying to think about what to write, I want to say Thank You. Thank you to all that have reached out to me and said kind words. Thank you for supporting me and my family through this. Thank you for not saying anything because sometimes there are no words and just acknowledging that can go a long way.

Life is about all the moments we have and experience. Every path we walk is put in front of us for a reason. Sometimes we just have to get out of our own way. We spend (myself included) so much time holding on to crap that just needs to be let go of. That crap only hinders the person holding on to it. It has absolutely no effect on the other person. Gage has taught me so much and I am continually learning from him. I realize that this path we are walking down is full of unknowns and I'm learning to be ok with that and to get out of the way.

We were carving the pumpkin last night and David asked me if I had the stencil. I looked at him and replied. I'm not perfect and neither is Gage so we are going to have an imperfect pumpkin. He proceeded to draw the pumpkin face with no stencil and you know what...it's PERFECT! Gage smiled and laughed when we lit it up and that my friends is perfection. That is what it's all about. I was not really into Halloween this year and that changed it right there. Who cares if Gage is not wearing costumes like all the other kids. He's doing his own thing. I a going to cherish every moment and educate all I come across. If they want to be judgmental, that's on them not me. 

This journey is not at all what I expected but in life do things always turn out how we expect them to?   I am going to learn to let go of my expectations and I will follow his lead. After all it is his life, I am merely the guide God chose to help him along the way. Ultimately, Gage will do what he was sent to the Earth to do...not what I want him to do. I ask for strength on this path because I know it's going to test me, but I am ready

Until next time.....

The Appointment

I woke up this morning wishing I had slept more. It seems Jillian is liking to wake up for a bottle in the middle of the night or like last night 2 bottles. Luckily, Gage slept great. He also woke up fairly easily (usually he is a grump if I have to wake him up). So I got everything together for the appointment. I got Gage up first and made sure he ate breakfast. I wanted no issues.

We left right on time and made our way down to the Dan Marino Center. We got there early because I'm afraid of being late. I had packed everything I could think of to entertain Gage. It seemed I didn't need any of it at first as there was a train on the wall and he played with that for awhile. We were finally called back and met with the neurologist, Dr. Carlos Gadia. He immediately started to try to interact with Gage. He was even on the floor with him! I was very impressed.

After observing and interacting with him for a bit, it was time to talk. Gage was diagnosed with Autism Spectrum Disorder. The doctor said he is high functioning as he is very intelligent. He pointed out the decreased eye contact and him wanting to really play on his own. These are all things I see. He did order an MRI, EEG, and some blood work to rule out anything medical. We will see him again in January after he starts school.

I haven't really had time to process it all. It's overwhelming. I realized today that this isn't about me. This is about making Gage's journey through this life his! His path is just going to be different. I know that God doesn't give us more than we can handle. He also has plans for each of us. I may not understand now, but I trust Him. I just ask for strength on this journey. "Sometimes what we can't change ends up changing us."

Gage will always be my perfect little boy. I wouldn't change him for anything in the world. I love seeing the world through his eyes because it's different than my view and I learn new things. Thank you to everyone who reached out to me today. The support really helped.

Until next time...

The Night Before

I'm sitting with Gage in his room waiting for him to fall asleep and I am thinking about tomorrow. When I scheduled this appointment for him 2 months ago, I didn't realize the date I had scheduled it for as I just took the first available appointment. I know now that Jill had to have a hand in it...tomorrow marks 3 months since she left this Earth in her body form. I say it that way because I know she is still here. Life sometimes gets so busy we miss the subtle signs and then BAM! In your face...she doesn't let me forget. So as I sit here thinking about what tomorrow's appointment for Gage might bring, I'm reminded that no matter what it will be ok. It's just a word, right.

We've had some small successes with Gage this week with eating. He unfortunately is like his mommy with his eating...very picky. His diet generally consists of pancakes, peanut butter and jelly sandwiches, chicken nuggets, bananas, applesauce, and Mac and cheese. On Sunday, he asked for an egg. I thought he was kidding, but he kept asking. So I asked. Him if he wanted to eat the egg and he told me yes. So I made it crossing my fingers that he would eat it. Sure enough he ate at least half of it. I wanted to do a dance. Then today I came home and noticed an almost gone granola bar. It would seem that he asked for it as well and ate it. I'm so happy. It's the small things that everyone else takes for granted that I celebrate and cheer when I see them. Over the past several weeks, Gage has become more affectionate with us. I notice that he is interacting more often than he had in the past. This too I celebrate.

Life is short and I'm reminded not to take myself so seriously. Somewhere along the way I forgot that I need to have fun. Life and responsibilities have put up road blocks. Sometimes we all need reminders....I have Jill.

So I sit here the night before I know it is going to be ok.

Until next time...

Waves

Where do I start? I celebrated another year of being here. I really haven't had much time to reflect like I've always done around my birthday. Time seems to slip away from me these days. Jill's mom texted me on October 10th to wish me a Happy Birthday for Jill. It made me smile. That was always her thing with me. It had to do with the date of her lung transplant. I've been really emotional the past few days...really missing her. Since her passing, I would sense her all the time. It seems that recently I don't feel her presence as much and that makes me sad. I don't ever want to forget. That grief I have kept bottled up is seeping to the top waiting to come out. I feel it. I'm not sure why I won't allow myself to fully feel it. I know I will feel better. I think I'm afraid if I let go of it then I feel like I'm letting go of her. I miss her and I know that will never change. I will always have my reminder of her in Jillian. I just wish she would have been able to meet her and hold her.

Jill wanted to write a book about her story...I think this might be the one goal that she didn't obtain. I want to do this for her...even if it takes me years. I think her story should be told. She has been such an inspiration to so many people.

Switching gears...Gage is talking more now. He is saying all sorts of things. He even will talk when we ask him. Those are the sweetest and best sounds I could ask for. I waited almost 3 years to hear them and I love every second of them. We have the neurologist appointment next week. I am nervous but ready to have a definitive answer. He is the most amazing, sweet, loving, animated little boy. I couldn't ask for a better little boy. Nothing I hear at the neurologist will make a difference in who he is as a person. I know he is destined to great things. His path is going to be a little different than everyone else. My job will be to guide him on his journey.

I have spent many nights in the past couple of weeks having difficulty sleeping. I know I'm allowing my anxiety to take control. I just can't seem to turn off my brain. I lay in bed and think of so much to
write but never write it down. I think I've probably written 10 blogs in my head the past few weeks. I refuse to let the anxiety take control. I have to remember to let go of what I can not control. On two different occasions I was in the car and just scanning the radio stations when a song caught my attention both times. It's called "Blessings" by Laura Story. It really speaks to me. I need to start listening to music again. It really is my peaceful place. It's the way I process life. For me it is very therapeutic.

I think this blog is one of the longest I have written. I could probably keep rambling but I need to stop for now.

Until next time...

Roller Coaster Living

It's been a little bit since I have had some time to write. Things have been a bit crazy in my house....more like a roller coaster. Hmmm that pretty much sums up my life right now. Although sometimes I feel more like ping pong. Anyways.

Gage is doing better since we pulled him from daycare. Although I go back and forth about that decision (mostly because I want him to be socialized around other children his age), I know it is what is best for him right now. I have noticed a huge increase in his vocabulary. He is also trying to put together more than 2 words at a time to try to communicate his needs. This is still an area he is having difficulty in...which leads to temper tantrums. We also have been to an ENT and she seems to think that he has REFLUX. Really is that what all the coughing is about. We started him on a daily dose of Prevacid and now limit the amount of milk he can have in a day. We have also started to give him soy milk which he is not all that fond of. But a huge plus is that he is eating more and drinking less!!! I am hoping that this is the root of some of the problem. Only 3 more weeks until his evaluation at the Dan Marino Center. I am not sure what to expect but all I want now is answers and solutions. I want to be able to help him reach his full potential.

I have been trying to balance work and being a mommy...that is definitely not an easy thing. I wish there was a solution that made it easier. For now I am lucky to be able to have flexibility.

Changing gears...my favorite month of the year is here - October. This also happens to be my birthday month and I missing Jill a lot. My birthday is the 5th but Jill always seemed to think it was the 10th. That day coincides with her lung birthday (April 10th). It has been 14 years since she has been doing that. This will be the first one that I don't hear from her on the 10th. I am hoping she sends me a sign of some sort as she has been doing for the past couple of months.

It's late and I should probably try to sleep.

Until next time....

One step forward two steps back

So this week has been rough. Gage was very difficult at daycare. He had several tantrums. He had one today. I got a call from the director saying I needed to pick him up. What is a parent supposed to do? Don't two year olds have temper tantrums?! I understand where they are coming from.  I just wish I knew how to make it better. Gage does have some tantrums but at home with us we are able to manage them. They are mostly because he can't quite communicate what he wants.

I am so frustrated and just want to scream! Giving up is not an option! When did this nation become some self centered. It seems it is all about self preservation. I miss when people actually looked out for one another. I'm so afraid to see what it's going to look like in 20 years.

I wish more than anything right now I could stay home with Gage and Jillian, but that is just not an option. I don't know what else to do. I don't want to send him to daycare where they are ill equipped to deal with him and I don't think they want him back. I wish I had the solution. I don't think I will be coming into a small fortune anytime.

I just want to make it better for Gage. I know those tantrums are his way of trying to communicate even though it is less than effective. I watched him play tonight. He is such a wonderful and sweet child. I love the way he looks at me or comes up on the couch to snuggle. His giggles and words are the best sounds in the world. I love it when he helps Jillian by bringing her her binkie. He is perfect.

I have to trust that there is a reason for everything. I don't have to like it. The sun always comes out after the rain.

Until next time...

When did I grow up?

In attempting to de-clutter my life I was going through the boxes I have in the garage. I found some old CDs that I had burned while in college. I decided this morning it would be a good idea to listen to one if them. Afterward I wasn't so sure that was such a good decision (at least not on my way to work). Open flood gates. It's amazing how music holds so many memories for me. I forgot how much I really love it. I really connect through music. Gage seems to enjoy music just as much. It must be my dad coming through. College seems like an eternity ago but I remember it like yesterday. And when I put that CD on it took me right back to that moment in time.

Today was a rough day for Gage at daycare. I'm not quite sure why. It is so frustrating for me to have to drop him off everyday. I wish I could just stay at home and still be able to do my job. I guess in a perfect world. I was talking with David tonight dreaming about hitting Powerball. I swear if that .should ever happen I would immediately open a foundation of some sort to assist families with children that have any type of special needs. A parent should not feel like they are helpless. Obama should take that on. There are bigger fish than healthcare. I bet if one of his kids had an issue he would be taking that on and fighting for changes.

Our children are the future...the next generation of this country. I feel like so much has changed since I was a kid. Things are just different and I know that technology has a lot to do with it but I think just how we raise and parent our children has changed. Children are not in charge but somehow that has happened. Somewhere along the line we gave them that role. My children will not have everything they want. They will have to earn things. Everything in moderation right? I will never understand taking everything to the extreme.

I guess I have rambled enough tonight but I find that this is extremely therapeutic for me (that's the therapist in me).

Until next time...

Decisions

I am a bit delayed in writing about the memorial for Jill. I think I was trying to absorb it all. It was nothing short of amazing. Friday night we (Kelli, Jessica, Shippy, and I) paid tribute to Jill in her her own Ash-n-Dash. She would have been so proud. Thanks to the ladies at the Tri-Delta house for watching little Jillian so mommy could play.  Saturday was beautiful. Jill was an amazing person. We had a balloon launch of black and gold balloons. It was pretty cool. I was so happy to reconnect with so many people.

I have realized so much recently. And I wonder why it took such an event to open my eyes. No longer will I make any excuses. Fear will no longer be the reason why I don't do something. Jill never let fear consume her (even if she felt it). I will embrace the feeling and run with it. I am sure it can fuel me just as well as hinder me.

I know this to be true:
1. Life is short so embrace it.
2. Jill may not be here physically but she is with me everyday.
3. Fear will not live with me any longer.

I want Gage and Jillian to grow up confident adults. I don't want them to think they can't do something. Failure is a part of life. It's how we get back up that defines us. In today's society we need to allow our children the opportunity to fail. How else will they learn. I am not the perfect parent. I mean how else can I teach my kids about picking up the pieces. Life is about the journey and the waves we make along the way.

Thank you Jill for being a part of my life and showing me all that it has to offer. You will never know the full impact you had on this Earth. My life will never be the same. Thanks for the waves...keep sending them to me.

Until next time....

Signs

I am just jumping right in today. It's been a crazy couple of weeks. I don't want to seem like I am complaining because I am not. I just wonder when I will get a break. Today I would have given anything to be a stay at home mommy for no other reason but to be with my children and help Gage. (I really need to win the lottery but that is another topic for a different day).

Let me start with work today...Thursdays are usually a day full of meetings for me. I started with my morning meeting as usual. At this meeting there is usually a video of some sort shown. Today it was about Richie Parker. This guy was born with no arms. Just watch the video. I wouldn't do it any justice trying to explain it. Well with everything going on in my home right now with Gage, it totally hit home.  Then I go to my office where I have another meeting with all the managers. Just like the first meeting, we generally watch a video of some sort. Today it was Kathryn Schulz talking about being wrong. I know the video is a bit long but take the opportunity to watch it. It took all my power to not completely lose it at work.

 OK I GET IT!!!!!!!! I just need a break. I totally felt like Jill was with me all day while all this was going on. I know what the message is. I am just not sure I am able to fully accept it without further evaluation. I have to remember that the things we can not change end up changing us. I know I am being presented with this path for a reason. I need to stop fighting it and open myself up to it. I am still going to have him fully evaluated by a neurologist and I also think I am going to get a Sensory Evaluation. I just want to make sure there is no other possible reason.

When I got home, it was time to get ready for the weekend. I am headed to Orlando tomorrow for Jill's Memorial at UCF. I know it is going to be good. I am just afraid that all the strength I have had in the last month is not quite there. I think this is going to be one big giant cry fest for me. I am ok with that. I think I haven't allowed myself to grieve fully. I have so much swirling around my head right now.

I know that I am not the only person to have shit (for lack of a better word) happen to me. I know it makes me who I am. I am trying to look at these situations differently. I am not perfect...I am human...I am a mom and I only want what is best for my children.

It's late and I could ramble on for hours about the same thing so I will stop now.

Until next time....

A Walk Down Memory Lane

On Friday, I went UCF and visited the Tri Delta house. I hadn't been back since I graduated in 1998. I was meeting with the Chapter president about some details for Jill's memorial. It was surreal being there at first. Although the house has been remodeled it was still the same. I could see rush and all the shenanigans that went on while I was living there. I could also feel Jill. I realized that although it's been a long time since "coming home", it never really changes.

I sat and chatted with the Chapter President for a while. I am thankful that she listened to all my old stories. I wanted to try to give her a glimpse into who Jill was. I am not sure that I really could give her that in the little time we had. But she listened and they have come up with a wonderful banner to honor Jill next weekend. I can't wait to see it hanging in front of the Tri Delta house. Jill would be so honored.

It was interesting talking with Chapter President. Things are so different now. They no longer do any skits for rush :( that totally bummed me out. I talked about all the shenanigans we would get into. She was surprised that some of what I was talking about was true. She thought they were just myths or urban legends. LOL. While the Greek life at UCF has changed quite a bit, I realized that the sisterhood is still the same and always will be. While we all join a Greek organization for different reasons, we stay for one....SISTERHOOD! It isn't just for four years, it is forever. Sometimes life might get in the way but we will always be there for each other. Thank you Beta Lambda for all the memories.

Until next time...

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...

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...

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....

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...

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...

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....

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...