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....