Wednesday, August 30, 2017

Tears and Floods

I have taken on some new roles with the work I do and I am so busy that people aren't hearing from me much. Just know I am still here and love you all! Because I have been so busy Mike took me to dinner last night. While at our table there was the most adorable little girl sitting next to us. She had big beautiful brown eyes and the cutest bob haircut. She was with her grandparents and kept playing with her grandmother laughing out loud. At first I smiled because she was so infectiously adorable. Then the tears that generate out of no where just fell like Niagra Falls and I could not stop them. Mike joked that we couldn't get the waitress to pay for our bill. I said, "well hell no she's back there thinking I am NOT going to that table." And then we both laughed which is all you can do. 

Many of you know I am in Texas just merely four hours away from the devastating floods affecting the great state I live in. I've seen such horrible devastation and Mike and I both have family and friends affected. We ask that you pray and donate to those in need. This catastrophe will take years to recover from and we don't need to forget about those in need!  

I am currently watching the movie, "John Q" and man I can so relate! I would not go to those extremes but having a medically fragile child and trying to get medical help with insurance can be that frustrating. 

We are leaving for our short trip to celebrate Jude's life and his birthday on Friday. I am leaving our animal sitter with all our bad babies and I have informed him they're much worse than Marley on Marley and me lol. 

Have a good night! I am blogging on my phone so forgive my grammar.





Friday, August 25, 2017

The Circle Theory.

What does Graham Allen say?, "Watch out America because this one's going to sting!" It stung me but I learned from it. 

I have taken on a new position at work so I don't have much time to blog anymore. However I decided to take a mini lunch break today to check my Facebook and update my blog. 

About a year ago I posted a blog with the link to an article about the circle theory. Basically it works like this. If a person is affected by a tragedy or major situation then you place that person and their immediate family (spouse and children) in the inner most part of the circle. Then you draw additional circles around the middle which associates to the next closest people. So a circle for family, then friends, then co workers, etc, etc. You cannot dump anything negative into the inner circles and you need to refrain from getting involved more than you have been asked to with the inner circles. Even though last year we were the inner most part of the theory I decided to adopt this way of thinking in my regular life and I can report a year later it's been amazing! I figured this circle theory could apply to more than just tragedies and personal struggles. 

In other words I withdrew myself as much as possible from any negativity, drama, or tragic situations that I should not be personally involved in. If I have a friend or family member that has a situation going on then I let them know I am here if they need me and I step back until I am asked for help. I have realized people's personal tragedies and circumstances are not my own personal drama's. So if there is a divorce, a drug situation, a death, problems in a marriage, school issues, a separation, a child drop out of school, or other issues I realize it's not my personal drama.  Nor is my opinion needed or requested unless it's been personally asked for. My friends and my family know I am there if they need me but me sitting around participating in dramatic conversations that only lead to further frustrations doesn't help. Me sitting around being worried and stressed over a situation out of my control, does not help. So I take care of what I can in my own immediate family's life, I realize before I judge that my mirror is dirty too, and I let those I love know I am there is they want and need me there. 

I am not saying I won't speak up if someone is being abused or mistreated because I will. However eliminating situations out of my life that my opinion and decisions have no bearing on has had a significant difference in my personal stress level. I for one really like the circle theory! 


Monday, August 21, 2017

The Seconds

When I first lost Jude I heard parents who had lost children say that the second year is the hardest. I personally thought they were insane and disregarded their comments. I can now admit that the parents that told me this information were very well versed in grief and were spot on.  I think you spend so much of your life right after losing someone very close in deep shock and you don't truly FEEL anything. I personally ran from the situation and immersed myself into work, traveling, or having multiple glasses of wine. Now that I have a reign on my grieving process I feel very very alone. I'm not lost but I do feel alone and almost a bother to those around me. Simple tasks seem like MT Everest to me and require a lot of patience from others.

It's mostly all based on my own hang ups but I do see many other grieving parents struggle with the same feelings I do. The "seconds"'seem to far exceed the "firsts" in emotional turmoil. The second birthday is fast approaching and even though we are getting away it's still extremely sad. I realize that the tiny baby face I remember so vividly in my mind never really stood a shot at life as we know it. I also realize I am older and cannot have anymore children and I am not sure I want to adopt so I'm conflicted. While I watch everyone drop their children at the first day of school this week I realize Jude would be 9! He would be in the fourth grade and probably amazingly smart like Mike. This week of back to school has been a hard but one I share in joy and sadness with those around me. I watch your children with a smile while I try to cover my true pain but still smile in admiration at you're triumphs.

Some might think it's because of Emily is gone but it's not because I am so incredibly proud of Em! She rushed Delta Gamma this week (story for another day) and she's called me multiple times. Even though today's call was to find her laundry detergent, lol. I do miss Emily and seeing her beautiful smile each night on my couch but I know she will do so well.

I think in the second year I have also become more aware that we all have personal tragedies going on and I realize that even though I need people sometimes they just don't have anything to give and vice versa. Sometimes I'm not sure how much I have left in me but then I email or text a friend late at night and someone is always there with a smile.

So what's been the hardest part of the second year?
1. Not knowing where Jude went
2. The anger! Ugh I'm so mad sometimes especially at what I perceive as stupid pointless arguments in the world. So forgive me if I get wound up
3. I can't sleep... ever. I am still just tired
4. The doctors just say "this is normal"
5. Saying the words, "this isn't any easier" even though I thought it would be.
6. Eliminating those that just continue to drag me down
7. Realizing my life is just to much for others at times and respecting that
8. Realizing what's important to me may not be as important as I perceive it to be

So thank you to those that continued to understand. That knew I was fragile and didn't expect anything in return. I may be sad at times but you are appreciated.

Tuesday, August 15, 2017

Emily's At College and Jude's Birthday

So this past weekend I flew with my BFF Gina to get Emily's dorm set up. I seriously owe Gina like 400 hours of babysitting or whatever she needs for the past two weekends. She flew all of Emily's luggage to West Virginia for Emily's competition and then she turned around and helped me fly all her luggage again to Alabama. 

I am happy to announce that Emily was second runner up at the Teen International competition!! We were absolutely thrilled she placed so well. Her friend Carly teen CA won the entire event and she was just a doll!! 





So now skip forward to the past weekend and it was a whirlwind. Gina and I flew out very early on Saturday morning and got to Birmingham. From there it was about an hour drive to Tuscaloosa where we had to hunt Emily down in sorority rush week to get the key to her dorm. I made a joke to Gina that I hoped Emily's dorm wasn't on an upper level since we had so many items.......it was on the 5th floor, of course. Anyway, we set the entire room up while she was rushing and we joked via text that we didn't care if she didn't like it. When she got back she was thrilled and extremely grateful! We then took her to dinner and when we dropped her off "Aunt Gina" got a little teary saying goodbye. 



I on the other hand kept myself pretty composed until I shed a few tears on the plane. Not because I am leaving Emily behind because I know she will thrive but because it's another new normal. I should be going home to a son that I would be getting ready for the first day of school but I am not. There are no children scampering around my house this year getting ready for the fall full of Halloween and parties. So that's why I am sad. Emily I am proud of and I know she will excel. She will also be flying back in for the Emily's Smile Box Day in September. I will most likely throw a birthday get together for her at our house after the Smile Box event. 

Speaking of we are scrambling a bit to raise another $2500 for Emily's Smile Boxes for the fillers for the boxes for the event. If or your company would like to make a tax deductible donation we do accept paypal at Emilyssmileboxes@yahoo.com. It's getting to that time of year where we have to place the order for all the boxes, labels, postcards, and fillers for the event. 

So I also have some exciting news coming up that I will share with everyone soon but I will say it's a positive thing. :) 

Mike and I heading to Pagosa Springs CO for Jude's birthday to have some quiet time alone and relax with nature. I am looking forward to some time with him. 

Monday, July 31, 2017

Emily

Tonight I decided to revisit my blog from earlier today. Although I am okay with Emily venturing out to her new path I am still very much her mom. I worried so much about her infection that I texted her to the point of being annoying last night and today. If you're a mom you will understand that worry you have for a child that's not feeling well. So I apologize to her director who is housing Emily until I can get there Thursday. Thankfully Emily reports that the prayers have worked and she feels much better!!! Regardless I panicked a bit but Emily did an amazing job of being a responsible older teen and keeping her dramatic mom in check.  

Even though Emily has lived a life with little to want you can mark my words that she has lived a tough life. When Emily was 10 years old she was basically forced to grow up very quickly! I had to work to provide for our household while Mike stayed home with a baby that had seizures on a constant basis and a baby that refused to eat until he became tube fed. By the time Emily got home from school in the afternoons Mike was spent and frustrated. Yet Emily found a way to help and not take things to personal. This wasn't just through her charity but through Emily's character and heart.  Luckily we gained our amazing nurses who helped Mike go back to work and Jude maintain a daily schedule. Emily became SO close to our nurses that Allan has been praying for her healing and abilities this week while nurse Candice sent out a hearty "YOU go girl!" I can hear her say that in her New Orleans accent and that makes me smile. As a teen Emily would venture home on summer nights just to talk to Jude's nurses and that speaks volumes about her character and about Jude's nurses.

I consider our life blessed that Emily decided to compete in pageants as a teen. I remember when she first started training for mental management and interview lessons, her teacher asked her to describe what it was like when Jude was diagnosed. Her teacher was sitting across the table from us and Emily got very quiet. I didn't speak I just simply watched her reactions and quietly Emily began to speak. She said, "My mom brought me home that night from the hospital and I remember everything was very dark and very quiet and she told me we needed to talk. That's when I realized my life would never be the same again. I realized my brother was very sick and that made me very sad." Her little head fell down when she was talking and her teacher looked at me in tears and we both had to regain our composure. We realized how much Emily was truly impacted by her brothers illness. At times I am sure Emily felt alone but somehow she never showed it and she never got angry or jealous of Jude. Emily never screamed wanting me to hold her when I was holding Jude because somehow she just knew he needed it more at that time. She had a strength about her that many of us lacked and she still does.  When Jude passed she was flooded with this ability to help soothe us with her words about Jude and she was confident in everything she shared with us.  

The other night when I was asking Emily practice questions for her pageant I asked her what her life's motto was and she  replied, "Like Cinderella says, Have courage and be kind." I couldn't ask more than a child that believes in that saying. I have two amazing children! Both of which only seemed to make the world a better place and that may seem boisterous but it's true.  Someone recently asked me if I moved away what I would have to take with me. In my mind I knew I would take my trunk with Emily's items but I replied, "Jude's boxes of shirts and his hand imprints." I think Emily felt a little left out but she didn't know she is automatically included in every decision I make.

As stated Emily is in West Virginia competing for Teen International and honestly I hope she remembers just how amazing she is and shows that to the judges. I think Emily would thrive traveling and meeting others to spread smiles and hope. One song I always share with her is Tim McGraw's, "Humble and Kind," and I think she lives like this song.



but I cannot help feel like this song is more fitting and I know your dreams are about to explode. Thank you for putting up with your mom who could direct a Hollywood feature because she is so dramatic. You're pretty amazing. Whether you win this event or not you have far exceeded any goals I had at your age. I am very very proud you!








The Weekend and Pageant Time.

This weekend was a tough one but we made it through! Mike has a very complex painting job with his crew that wasn't finished on time. Mike worked until 2am on Saturday morning after working at his regular job all day Friday. He then got home about Midnight Sunday morning and slept until 6. He went back to the painting job and didn't get in until 5:50am this morning, I am not even kidding. He never went to sleep and went to his regular job. He says he isn't doing that bad but I am afraid he is running on adrenaline. 

On Sunday morning I dropped Emily off at the airport because I thought her flight for the pageant left at 8:55am. I had her flight mixed up with my flight and the poor thing got dropped off super early but she adulted well and made due. It was a bit of a lonely weekend at my house but I got a lot done. I did a lot of laundry, cleaned up, and watched multiple movies. I think it's a common misconception that I am going to fall apart on the 10th when Emily goes to college. People keep trying to console me and I want to point something out very clearly. Emily is just going away to college Jude is dead and is never coming home. I very much appreciate and know the difference and I will be just fine with this. I am not saying I won't miss her but she will be able to call me, visit me, and will be home multiple times before the end of the year. So I have a pretty good grasp on this and even though it will be lonely at times Emily is only a phone call away. Plus she is starting a new major adventure which is so exciting. 

So I don't want to go into to much but Emily is in West Virginia preparing for her pageant. Interviews start tomorrow and Emily is battling an infection. Last night super late we were getting medications called in so a few prayers for her would be great. She is going to have a great time though I am sure of it. She gets to meet girls from all over the world who are competing and I think it's great she will learn about others cultures and lifestyles. Win or lose this is an amazing opportunity and she can handle most any situation with grace. I told her I feel like the devil keeps attacking us about this week and she replied, "yes but we are going to overcome it!" 


Thursday, July 20, 2017

The Dragonfly

I haven't written poetry in years so bear with me. 



Oh my little dragonfly 
who lit up every piece of sky
Your smile so precious and
 held dear to all of those so near. 
We miss your laugh we miss your life
although filled with constant strife. 
Beyond the heavens you reach and sing
with echos of a happy ring
A life cut short but a time to die
left us all the need to cry
We celebrate you with unending joy
a beautiful precious little boy
A teacher to those who were willing to hear
how love will always conquer fear
A life full of ups and downs 
with mostly smiles and very few frowns
Led to an angel watching above
taking care of all he will love
Not a marker or place in the ground
but the sun, the moon, and stars abound
All around you can feel his name 
like a rise to unending fame
Hey Jude, we say when we feel him near
his ears must perk up with fulfilling cheer
Hold on tight for it won't take long
to be together in an after song
A song filled with heavens light of family
friends and a beautiful night. 
Gone from our sight you flew away
but we will see you again one fine spring day.

Tuesday, July 18, 2017

I Post A lot On Social Media

It's true. You just laughed because you know it's true. I am sure over the past few years I have had people unfollow me by the dozens on social media. It could be because I post to much, my posts are sometimes sad, or because I speak my mind. Either way my social media depicts who I am and I am proud of the person I have become.

Throughout Jude's life we were so blessed to watch him grow but the older he got the more confined to home we became. I grew very fond of the situation, so much so that I still am very much a homebody. When we got off work we had to go straight home to relieve Jude's nurse and get ready for his nightly medications and rounds of therapy. We did this for years until we got a night nurse and even then we still had to be home at 5 until the 10 PM nurse clocked in.  This also applied to the weekends. We had a set regimented scheduled that rarely deviated off course unless a special occasion arose but it's one we loved. We enjoyed being with Jude and watching him grow and snuggle him in our arms. However sometimes as special needs parents we felt rather disconnected with the outside world. I tuned to social media on a regular basis to admire the photo's and updates my friends and family posted to various social media outlets. I felt connected to my friends and family by watching their updates and adorable pictures. I laughed at your adorable Halloween costumes, I smiled at birthday milestones, I cried at the first heartbreak, and I felt your sense of pride at graduation. I felt like I was there with you even though I wasn't physically. I still have issues connecting sometimes but I appreciate all the times you allowed me to be involved from a far.

So yes I post on social media a lot sometimes and so do many other special needs moms but don't you see that without that connection we would have been alone. So thank you for your patience, your understanding, and your ability to share. It's both refreshing and appreciated to not be judged and allowed to be a part of something special.