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. 


Monday, July 17, 2017

Be Your Child's Medical Advocate

I love hospitals, doctors, and nurses. Not in the literal sense but in the term that I am grateful they are available to help and heal our loved ones. With that being said I am going to touch on a rough subject today and I mean no disrespect to the healthcare industry.  Many of you will remember the situation when Jude was a tiny toddler and I knew he was getting pneumonia. He had all the classic symptoms and for some reason I ran him to a children's hospital in the area that was not our usual destination. That was my first mistake but they were well known and the ER wait showed to be short. We went in for an evaluation and from the start I felt like the doctor was annoyed with the knowledge I had of Jude's medical condition. Anyway, after evaluation and X rays the doctor decided to send Jude home. I protested and the nurse (God Bless her soul and nurses) also protested and in a professional manner told the doctor she didn't think it was wise to send Jude home. Oh man she reaped his wrath right there in front of me which I then turned around without a professional and manner and growled, "If it walks like a duck and it quacks like a duck it's a duck! So I will take my child home but you mark my words if something happens to him this is on your hands." Now granted I am not generally confrontational but when it comes to my children I will speak up. I knew Jude's symptoms and body in detail and I knew the poor baby was sick and the sweet nurse knew it too. In fact she handed me a pen and whispered, "document all of this before you leave." I also knew aspiration pneumonia can present with symptoms prior to showing details on an X ray. 

Sure enough hours later we were being transported via ambulance with an oxygen rate of 71 and a blue Jude.  I cried in the ambulance and told the paramedics exactly what had happened who then lodged a complaint on Jude's behalf. The doctor from the aforementioned hospital called me to apologize, had to apologize to the nurse, and he promised to always listen to the parents after Jude's case. I believe he also had to attend some sensitivity type training ridiculousness or something like that. I can only hope it helped. 

My point of this blog is one of importance and I would like you to read my next lines carefully because you are not exempt from tragedy. Someone posted in my forum that they lost their child when they took their kid to the ER complaining of the worst headache the child had ever had. There was not a CT, there was no MRI, there was only a diagnosis of a migraine. The parents felt uncomfortable with the diagnosis and uneasy about heading home. When the headache continued they contacted a health care office who backed up the ER even though the parent asked for a neurologist. Soon the child was in cardiac arrest from an embolism and it was to late. Under that post are multiple parents saying the same thing happened to them. If you feel you are not getting the answers you need do not be afraid to be your child's medical advocate. Remember that fear may lead to a loss. Looking back I never should have taken Jude home and even though I spoke up I should have pressed for more answers or taken him myself to another ER at that very moment. After Jude's surgery in July of 2014 when he was not getting better I finally spoke up.  For 13 days Jude threw up and couldn't keep any liquids or food down.  They continued the Iv's to hydrate his body but he was slipping away and I knew it. I insisted they transfer Jude to the hospital I knew his neuro and GI could take care of him. They could not perform the surgery at that hospital but they could find out why he wasn't getting better. I laughed when the current hospital said they would call CPS if I moved him and told them go ahead and then handed them the phone where Jude's neuro scolded them profusely and said put him on an Ambulance! Within days Jude was finally better and I was relieved to take my smiley little Jude home. 



So don't be afraid. Speak up for your child if you feel you need to because their life could depend on it. Most doctor's and nurses will always tell you they listen to the parents first because you know your child better than they do. 


Friday, July 14, 2017

Breakdown and Batteries.

When you lose a child people have a habit of telling you how strong you are. It's not about being strong it's learning how to cope and move along with life. I am not always strong and I have said that multiple times. For example this week has been extremely stressful. I am busier than I have been at work since I was about 28 years old in the insurance industry. Our rates are great since we can write through multiple carriers and the amount of quotes coming in leave me little time to call everyone back that has servicing questions. Along with Mike's back issues and Emily's illness I was mentally and physically exhausted. Yesterday at work it was like 13 months of hell just caught up with me and I had a complete exhaustive breakdown at work. I looked around my desk piled high with work that had to be completed and I could barely lift a file. I went into my boss's office shaking and trying to keep from passing out. I muttered I had to leave and prayed I would get home. I was giving myself a panic attack on top of being exhausted because my heart felt like it was trying not to give out. That sounds dramatic but it's the only way I can describe how I felt. Like I was going over roller coaster hills and my heart would keep dropping. When I got home I took a long hot bath where I discovered an infected bug bite on my leg which could have played into the exhausted panic attack. I took a very long nap and then slept on and off throughout the night. I feel about 50% better today but I am getting there. 

While at home Emily let the AC repairman in sent by my warrant company because her upstairs AC had gone out. The AC had been serviced right before we bought the property so I figured it was out of Freon or needed charging. Nope the entire system needs to be replaced along with a lot of other items they are working up a price on. However I didn't feel comfortable with this company the warranty program sent out and when I looked up their reviews they were terrible. So I called a friend that works in AC that is going to look over the estimates and possibly look at my system. I got upset at first that it was just another thing to deal with but then I realized there were other options. In addition we have a downstairs where Emily can sleep comfortably if need be until she leaves for college. 

I had to put myself first yesterday and today I woke up with a bit of renewed confidence in myself. I am tired of worrying about money so I am not going to worry about it anymore. I believe God will provide. I am tired of things going wrong and worrying about a solution so I trust a solution will always be found. I am a diligent and hard worker but I learned if someone has to wait an hour for me to catch up it will be okay. I learned if I need to tell my boss I have to leave then I have to go and take care of myself. 

I mentioned that I am looking forward to my time away in West Virginia to catch my breath. Mike really isn't looking forward to it and doesn't consider a pageant a break but I do and it's something I enjoy. So I am going to take this time to let myself enjoy life and recharge my batteries. T minus 2 weeks!