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! 

Wednesday, July 12, 2017

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. 


Tuesday, June 27, 2017

Migraines and Moms

Years ago after I had Emily I started suffering from Migraines but over time they went dormant. Now that Jude has passed I have started suffering from them again. They are infrequent but still hit me occasionally and when they do it's like the depths of hell just runs over my head. I think it's hard for co-workers and friends to understand what a migraine really feels like. My co-worker Chandi suffers from them so when I text her today she knew exactly what I was going through. However this migraine also came with swelling to my left side of my face so the general consensus is a sinus infection. Anyway, this was the best photo I found to demonstrate what a migraine feels like. 



Last night I sat down and watched Moana with Emily and it was like old times again. We were watching a Disney movie together and enjoying that time together as a family. I am going to miss those times when she goes away to college. It hit me last night that she is really going away but I know she will be back.  I guess we just raise them the best we can to send them off into this world. 

Monday, June 26, 2017

The Bereaved Mom

Well I am on my blog to share a blog which I will link in a second. Last week a 14 year old teenager in our area asked a friend at a park to watch her dog for a second. She walked off and was found less than 48 hours later in a landfill murdered. She was taken from the area I grew up in just miles from my old high school. The details of the case have not completely been released and the situation haunted my dreams. I had a nightmare I couldn't find Jude and he needed his medications. I looked everywhere for him and was desperate to find him. So then today I read this blog posted by a mother in my loss forum. It is the very best description of the panic and fear a mother has when dealing with the loss of a child. I just sat and cried at work. I am not posting this to make anyone sad but to help express the emotions and true feelings surrounding someone that's lost a child. My heart aches for the mother of the teenager who is now a part of the club no one wants to join. 

https://bereavedparentsblog.wordpress.com/2017/06/14/grieving-mom-to-non-grieving-mom/?iframe=true&theme_preview=true&calypso_token=c082eb16-2f0b-43b4-830d-0a8d48830caa