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!" 

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.

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. 

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. 

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! 

Mike's Back and The Family

I feel like the family that people look at and say, "really???" Actually I know we are the family that people look at and say, "really???" On 5/3/2017 Mike was rear ended......yes after the softball size hail ruined my car he got hit on the highway. I was eternally grateful the accident wasn't worse than it was. I am not sure I could handle another loss. A lady had stopped on the highway to help her friend that had broken down.  Her vehicle was not easily seen because Mike had to come over a hill first. Once he came over the hill he slammed on his brakes and missed her.  However the next person that came over the hill plowed into the back of Mike. Mike nicely scolded the lady for parking on the highway and instructed everyone to move to the shoulder. Just then a semi came over the hill, blaring his horn, and luckily swerving into the other lane. They were all very very lucky. Anyway, Mike was injured but we thought it was mostly soft tissue injuries. Well he had been complaining about how his back was hurting when he was driving and when he was sitting on the couch. On Sunday Mike stood up from bed and just collapsed and I do mean collapsed. I had to use a belt and a chair as a hoist to get him back into bed. He has been in excruciating pain. We took him to a friend who is a chiropractor who also does acupuncture and he got Mike to where he could at least walk with the assistance of a walker. Prior to this Mike's pain was so horrible that he couldn't even walk to the bathroom, it was terrible! The pain did not let up so last night I took him to the ER. Mike has a degenerative disk disease, bulging disks, and other issues regarding his lower lumbar. We knew Mike had a few issues but nothing this bad and the thought process is either the accident caused new problems or made a flare up of an existing condition. A horrible terrible flare up!  Either way he is a mess. So he has a host of medications that do seem to be helping today, PRAISE THE LORD. Our hope is he will be back to work tomorrow and then he can start some sort of therapy for his back. The ER doctor mentioned a back surgeon but the nurse seemed to think therapy would help. After my experience with Jude I tend to lean towards nurses opinions first. 

So when I walked through the door today my co-workers could tell I was once again tired. I am so very tired I have been tired for years now. Anyway, I told them the update and sweet Paula said, "It does get better. I promise it does." I told her I keep waiting on that moment but she is right it does get better. Mike is with us and that's what matters. The expenses piling up from the accident will in time be taken care of and we will keep moving forward. Emily also has strep so a little prayer for her too would be great. 

In 2 1/2 weeks we leave to watch Emily compete as Texas Teen for Teen International. I am looking forward to the time away. I may sleep until noon each day in the hotel :). 

Yesterday I went to see Jude and I was overwhelmed by all the "decorations" left at his site. So many rocks have been left to symbolize a visit and a prayer. On top of that there were flowers, superman items, and more. I saw and talked to him for a bit and let him know that I don't really like being here without him but keep on going. Thank you to everyone that visits him.