Grief - Put it on a leash

I have been meaning to sit down and write for the past couple of days. However, I just haven’t been able to find the time. Although that is not completely true. I can find the time to surf the net or play my stupid games. I find the time to sit and watch a movie with the family. I find the time to play with my little ones. So, I would have to change that to I have been avoiding it.

I have written this blog in my head about 20 different ways. I just go blank when I sit down to type it out. But here goes…

Father’s Day – A day that I always wished would somehow disappear. It was a reminder to me of what was gone, what I missed out on. It took me awhile to reframe how I was looking at the situation. While it still makes my heart ache that my father never was able to see me grow up, walk me down the aisle, or will never hold his grandchildren, I know that he is with me and sees all.  

As a therapist, I know that grief is sloppy and there are instructions of how it works. From experience, I know that grief can be like a ninja and sometimes just attack when you least expect it.  This was what I experienced on Sunday. 

For reasons that are still not clear, I was on the verge of tears all day. I decided I needed to go for a drive when Jillian went down for her nap. To give David some quiet time, I took Gage with me. On the drive, Reba McEntire’s song “The Greatest Man I Never Knew” came on. That was it….water works time.

 I was (and still am) sad that my children will never have experiences the grandfather that I was so lucky to experience. Both of my grandfathers were amazing people. Grandpa Robinson would take us to the corner store and buy us candy. Then he would piggy back carry us to the car and say to me “Who’s gonna carry Carrie”. I hated it then, but would love to hear it one more time. Gramps (Hooks) would sit and tell us stories. Since I love history, this was great for me. I am so glad he did because I now have those stories locked in my memory to tell my kids.

My point to all of this is that my children don’t have this chance to make these memories. I can’t bring my dad back...if I could I would in a heartbeat. So on that drive, I made a promise to myself. Grief will come and I will let it. However, I will keep it on a leash. If it has to be around, it will be on my terms.  Yes, it may still sneak up on me when I least expect it and that is ok. I realize that we never really “move on” and that time really doesn’t make it better. It just becomes more bearable. We learn how to “leash” our grief.

 I will help create memories for my children. They won’t be like my memories and that’s ok because it is their life and their experiences. I know that they will cherish those memories just as I cherish all of my memories from childhood.

Until next time…

Progress

I know it's been awhile since I've posted...life has been busy. Gage is doing well. He has made such progress since starting school. I have so much gratitude for his teachers. He is talking...ALOT! He is doing great with potty training. We still have our issues here and there but overall he is making great progress.

I look at my sweet boy and can't help but wonder how he would be if he could fully communicate with us. There are days I want to pull my hair out and I hate Autism. But I also understand that without Autism I wouldn't have my amazingly unique little guy. He helps me see the world differently. He reminds me that it is ok to do things differently. He has the most amazing smile and it can instantly change my mood.

Jillian is doing great as well. It is amazing to me how different she is from Gage. She loves her big brother. She gets so excited when he gets off the bus. It's the cutest thing. She is 15 months now and isn't really saying any words. This of course is a scary thing for me. I see vast differences in her development from Gage's. She is babbling and trying to say words. She shows interest in everyone and everything. If she isn't saying anything in a month I will have her evaluated for a speech delay. Hopefully she will start talking soon. I know I will regret that at some point.

I have learned that it is easy to get caught up in life and forget or miss the little things. I am still trying to figure out how to juggle that. I don't want to miss those little things. Tomorrow isn't promised to us and I want to "see" all the little things. It's the little things that add up to make the big things. I am grateful for. This path. It's not always easy but it's no different than someone else's path. We all have struggles. It's those struggles that make us who we are. I am far from perfect. I make mistakes...all the time. I just want to be the best parent and advocate for my children...like every other parent. Our struggle is Autism...someone else's struggle might be cancer or mental health. The paths are different but the same.

Until next time...

Celebrating

Today we celebrated the kids’ birthdays. We held the celebration at a nearby park. I was hoping that this would be beneficial for Gage. I’m not sure I fully thought that out. After several days of “cold” weather, I think everyone was at the park…ok not really. However, there were several parties going on at the same time as ours. This turned out to be very interesting. Gage had no problem going into all the pavilions and helping himself to what they had.  He ran up to virtually everyone at the park and interacted with them on some level. For his dad and me, we cheer this. Luckily, there were understanding people at the park. To everyone at Royal Palm Beach Commons Park today between the hours of 1-4 pm, I thank you from the bottom of my heart. There is always so much anxiety that I have going out because I never know how Gage is going to react to situations.  I mean I can try to anticipate and control for as much as I can but I am not always able to do that 100% of the time. So, to all those people sitting on the grass as Gage came running onto your blankets – Thank you. He loves to run and be chased. Unfortunately, he doesn’t always understand when to stop. To the couple with the bicycle who allowed Gage to play numerous times with the bike never becoming frustrated with him – I thank you. To the party that was going on in Pavilion 19 – thank you for allowing him to “crash” your party. I cannot begin to explain how thankful I was for all the understanding.

Gage has been doing amazingly well. The words that he is using every day have multiplied. I can’t even begin to remember all the words. Some I didn’t even realize he knew. While this helps with us being able to communicate with him, he still has his moments where we have no idea what he is trying to tell us. He has also started to be more social. He will tell me “hold hand mommy”. This generally means he wants to show me something. Just hearing my sweet boy say “mommy” will never get old. I waited almost 3 years to hear that word. I had said I wouldn’t complain when he started talking and I won’t. I love every word that comes out of his mouth.

Jillian turns 1 tomorrow. I am not sure I will have the time to write this tomorrow so I am writing this tonight. I can hardly believe that my little girl is turning 1. She truly completes our family. I will never forget the day I gave birth to her. When I looked at her, I knew immediately she was “Jillian”. I will always remember calling Jill after her birth to tell her the name. She had taken such interest in naming this little bundle of joy…She even mailed me a long list of names. In the end, we decided that Jillian was what suited her. Jill’s reaction was normal Jill and will stay with me forever. While she never met Jillian, I know she is with her every day. I miss her.

Until next time…

It takes a Village

I have learned a lot throughout my life. As a rule, I try to learn something new all the time. However, what I don’t like learning is things that affect my life negatively. One of those things is that I can only rely on myself. I know I say that with the absolute word “only”. I don’t mean 100% of the time. I would say 98% of the time. I haven’t been able to figure out why that is exactly because I always try to be supportive of others. It’s why I do what I do for work.

Personally, I have always had a difficult time asking for help…in other words I pretty much don’t ask until I am hanging by a thread and it is unraveling. I understand how important it is to take care of yourself and your relationships. I also know that divorce is VERY common among parents with children that have special needs. We have a child that needs extra support and understanding. Therefore, it makes it difficult to leave him with “just anyone” for extended periods of time. With Gage, things have to be done differently. You can’t reason with him like every other 3 year old. We pick our battles with him and usually those battles are for BIG things. For instance, right now we are focusing on potty training. That is the one area I don’t back down on with him even if it results in a 45 minute (or more) meltdown because he does NOT want to sit on the potty.  Anyways, I seemed to have digressed. My ADHD is kicking today.

I realize that support is imperative when raising any child, especially a child with special needs. It can be very stressful and you need that reconnection with your spouse. For example, Gage just started Pre-K (which he is adjusting fairly well…that’s a whole new entry) this week. It has been very crazy getting him adjusted to a different schedule. It has been nothing short of a miracle that I have been able to have him in bed AND asleep before 9 pm every night (thanks Melatonin). My point is during our days there is never really any time for my husband and me to connect. He leaves the house early for work and usually is gone until late in the evening. By the time he gets home, its dinner time and then he is ready for bed to start the whole routine over again the next day.

My question is what do people do if they have limited support? Because I am trying to figure it out.

Until next time…

Happy Birthday Gage!

Well I am 2 days late posting this but better late than never. January is my month of birthdays. It all starts off with Gage, then David, and finally Jillian. I am seriously considering celebrating the kids half birthdays.

I can't believe that my little boy is 3 already. I don't think I will ever forget his birth. He gave me quite the scare breaking my water 6 weeks early. Luckily, he only had to spend a few days in the NICU. At the time, I would have told you I was not going to go through that again. I have never been so scared. There were seriously more hospital staff in my room that day that I wasn't sure if we could fit anyone else in. If there was one thing I learned that day is that God is definitely in control. Well maybe I didn't learn it just then, but I was definitely reminded of it. I am not sure I have ever prayed so hard. My little guy came into this world all 4 lbs 14 oz with his own agenda and he has lived up to that. He definitely is not taking the road more traveled. He is carving his own way and teaching me along the way. He never ceases to amaze me. He has gone from not saying anything at all to saying words that I didn't even think he knew. He can count to 20 (with a little help). I would not trade it for anything in the world. He may not look at me all the time but when he does it makes me all the more happier. I never take for granted the little things. I waited to hear him say "Mommy" for almost 3 years and now I can't hear it enough. I always smile even when I feel like I could lose it. He does the sweetest stuff and says the most adorable things.

This week marks another chapter beginning for him. He will start a Pre-K class at an elementary school. He will be in an Autism class and I only hope that it helps him socially. I am starting to see him interact more with us and with other children as well. But he continues to stay to himself. He is also engaging in more pretend play.  David got him a little grill for his birthday and he immediately started to play with the food and prepare it. I know that God has great things in store for him. He has certainly already taught me a lot.

Until next time...

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....