Is Being Nice A Lost Cause? Does social media change us?

It's raining again today. I believe it's pretty much rained every day since Jude died. We have a few breaks with some sun but I am ready for some steady sunny days. It helps keep your emotional well being more positive. 

This past weekend there were several topics that arose within the news that sparked different reactions from people across social media. The reactions ranged from differing opinions to threats of violence. I have a habit of opening my mouth when I believe people are being treating wrong or unjustly. This would be considered my "opinion". I think it's fine for people to discuss their opinions and it's even healthy to discuss differing ones in a mature respectful manner. However when did our population adapt to such an angry and violent society? When did we start judging others from afar without looking in the mirror? Judgment seems to come easy and swift from those behind key boards pounding away their thoughts one strike at a time. Threatening acts of violence and ruining others lives based on social media news stories has almost become second nature. 

My uncle used to be in law. I once asked him why he chose to become a criminal defense attorney. His response left me breathless when he said an estimated 10% of people on death row are innocent. We fragile humans wrapped in our naivety are so easily swayed by the media, We tend to try and hang a person just based on what we have heard versus what we know is factual. Some media outlets lace their stories with information that may not have been confirmed just to capture the most recent scoop. Their job is to focus on drama and obtain internet views and shares which in turn gives little regard to the person in the story itself. Isn't our job as a responsible society to have all the facts before condemning another party? Our actions as a whole have driven people from social media, from their homes, and from their jobs. When do we accept responsibility for how we treat others? Regardless of your "opinion" on a subject the fact still remains that America is an innocent until proven guilty society. We should give individuals that respect. 

Is it so hard to learn to be kind to one another? Is it a lost cause?

A Happy Memory

Today I watched video's with a smile because they brought back sweet memories. When I pressed play I noticed Jude's smile but I also noticed Emily administering medication and hooking up the feeding tube. It's amazing all that she learned. 

What a blessing it was to care for someone that was so fragile. We will never take for granted our ability to eat, walk, talk, or sit up. 

I have decided to run off next weekend and take Emily to Miss USA in Vegas. It's a once in a lifetime opportunity so we are seizing the day. Another lesson from Jude. 

Miss You Jude

So one would think our lives are getting a bit better but it's not really. We thought we were moving in a forward direction but suddenly this week is extremely difficult. We are angry, irritated, snapping at each other, and it's just overall rather crappy. I think we have reached the point that when someone asks "how are you doing......you doing okay?" that we could angrily respond "My kid died......no!". It's not their fault because they just mean well but let's just say that might not be the best question to throw our direction. I think it may be that it's just a reminder to us and we are trying to be normal. We still are trying to keep ourselves busy because that seems to help the most. We have been working diligently on the Emily's Smile box day that's coming up in September and the Pediatric Stroke 5k. So that helps. The good thing is we have each other and we are thankful for that every single day! 

I think when the house sells and we are able to focus on a move that will also create a big distraction. The good news is that Jude's book is moving forward. We are excited and will have more news on it soon. 

I miss Jude. I miss walking in the house and seeing his little face and kissing his big cheeks. I miss him being a baby and holding him close. I cherish the memories though and that I have them with me everyday. 

Part of grief is getting back to a routine. We have done that but it still takes time to start processing life in a normal fashion. We are getting there. 

Losses and Races

I am a member of an online support group for parents that have lost their child. It's hard seeing the stories but you feel a connection because of the loss. One thing I have learned is to again be eternally grateful for my blessings. Most of the children have the same sort of passing. Car wreck, childhood illness, going to sleep and not waking up for no known reason, and it seems #1 is the flu. So maybe my passing that along will help others be aware of situations to watch and to seek help if needed. It also seems like it just started as a mild illness and progressed very quickly like 24 hours quick. 

People are still asking how I am. It's a natural question. I take things day by day. Sometimes I feel like screaming and sometimes I am alright. I have been immersing myself in work and with setting up the big Emily's Smile Box event on 9/24. We are now all set up on Active.com and we have everything ordered for the event. I feel very accomplished that we got everything handled so early. 

We start the day with a 5K race to honor Jude and spread pediatric stroke awarness. Here is the link if you would like to attend in the DFW area. Note you do not have to do the race to attend the Emily's Smile Box making party.  http://www.active.com/southlake-tx/running/distance-running-races/emily-s-smile-box-day-featuring-the-annual-pediatric-stroke-walk-run-2016?int=

If you would like to virtual run for Jude because you are to far away then here is that link. With a full explanation of how to particpate. 
http://www.active.com/any-tx/running/distance-running-races/i-did-it-for-jude-pediatric-stroke-virtual-5k-2016

Some Days Are Harder Than Others.

Some days it's a little easier to deal with our loss and some days it's not. This morning as I passed the cemetery I said, "Good morning Ju Ju Bean." and my heart just broke. A lump gathered in my throat and the tears started stinging my eyes.  When I got to work the invoice from the cemetery to buy the plot next to Jude for Mike and myself laid on my desk. It's odd writing out so many checks to people all in regards to death. Jude's headstone has been designed and they are now working on the design for the granite bench that will go between his space and ours. Life goes on but for those who just lost someone the invoices and conversations last months and the loss lasts a lifetime. 

Our house has had multiple showings this week so I have no doubt it will sell within the next two weeks. My guess is we will close and move some time in June or July but we will see. I will miss our home but it is hard being there with all the reminders. I guess it's on to a new adventure. 

I am still not up to taking care of anyone else's feelings because my loss feels so great but again as the days pass the emotions get a little easier to handle. I still get irritated when people are having a good time but I never voice it. I know in my heart I want them to enjoy life and Jude would want that too. 

I am not sure what the future holds. I am not even sure where we are going when we sell the house but I know God has a plan. We will wind up exactly where we are suppose to be! Jude's book process has started and I hope to announce release dates within the next month or so. I have no doubt he will touch so many lives. 

The Grief Garden

After Jude passed a good friend of mine really wanted to help us by doing what she could to make sure the 9/24 event for Emily's Smile Boxes was a success. She told me she reached out to a mom who had lost her son who also held a race in his honor. My friend explained she was excited and really just wanted to make a difference and it was the mom she reached out to that pulled the reigns. She told her that she couldn't step in my grief garden right now and she needed to wait until she was invited in. That statement stuck with me but I just haven't had the opportunity to blog on it in the way I wanted to. I thought her statement was very profound. That mom knew my friend only wanted to help but she knew from a grieving parents side that you have to learn to breathe again first. 

I thought that the idea of a grief garden (even though not literal) was amazng and a great way to explain the situation in a sense that others could understand. Basically when Jude first passed I was in a dark sad stormy garden without much light. As the days passed and the storm let up I began to start tending to some wildflowers. Slowly I began to work with the green grass, some honeysuckle filled with memories, and I was able to plant some roses. The roses will take the longest as they are just beginning to grow but eventually their petals will bloom with a sweet fragrance and be filled with Jude's smiles. A little at a time I can invite people in to look at how beautiful the garden has grown but it takes months and years to make the perfect rose garden. It will happen though and it will be perfect.  

Panic

I seem to be doing a bit better. Sometimes I feel guilty for that but I guess I am
beginning to feel like I can at least breathe again. The one issue I have had since Jude passed that I can not stand is absolutely debilitating panic attacks. I mean the type where you feel like you're having a heart attack but you know you aren't. Anything can bring them on driving (mostly), stressful situations, talking about Jude, finances, really anythjng. Yet again it's something I have learned that's normal. I am hoping they will ease soon.

My office is getting out back together so I should be back to work next week. Mike is doing pretty well and so is Emily.

My thoughts of Jude and his sweet smile and squishy cheeks  are beginning to bring me smiles versus pure despair. I remind myself that Jude struggled for so long and as selfish as I am and how I want him here I just cannot have that. It wouldn't even be fair of me to ask that from him. He is breathing easy now.

Today I have a full list of items to do from Emily's concert or dress shopping.

A Fire and Notes

We are still taking each day a step at a time. I sure miss coming home each day to a busy house full of nurses and family. I miss saying, "Ju Ju Bean!!!" and seeing his sweet smile but I know he is with us. 

Sometimes it's hard to breathe but other minutes you just smile at his memory. 

The other night I received a call at 11:54pm from the fire department by my work. My mind is still overwhelmed by losing Jude so I had to get myself together. I realized they were telling me there was a fire at our location and they couldn't reach the primary owner. Mike and Emily helped me pull myself together and we rushed to the scene. When I pulled in the parking lot there were loads of fire trucks and ambulances from multiple cities. At first I thought about crying at the possible loss of something else but I knew no matter what we would be okay. Soon I learned it was a lightning strike that hit the business next to us and they suffered a devastating loss. We have major smoke damage but it's easily repairable but it will just take time. So right now we are trying to work remotely and are traveling back and forth between the office and home. We are a bit limited but we are making it work. It's always an adventure over here. 

Emily is doing well and I heard from Jude's nurses when we all have time to communicate. I know they are aware we miss them. I drive by Jude's little spot in the cemetery each day and I know we made the perfect decision. I am able to tell him good morning and good night. 

Over the past several days I have received letters that were sent to the funeral home and to the church from my readers. I am so touched people took the time to reach out! People near and far! I am so thankful Jude was able to touch so many lives in such a positive way. I hope he continues to do so. So thank you for taking the time you took to send a note. It meant a lot. 

One Month

Yesterday was mothers day and although it was very difficult there were bright sides to the weekend. Mike and I drove to a friends lake house on Saturday morning. We had lunch and then went to look at some artwork. I like stained glass and I was drawn to a piece in the window at Your Private Collection Art Gallery. I wandered through the shop admiring all the items and ventured to their back room. When Mike and I came through the black curtain we were stunned at all the beautiful angels lining the wall. The scene took our breath away. I began concentrating on a blue angel just to the left of a large gold angel adorning the wall. We both began to cry and we felt we needed to explain to the attendant why we were shedding some tears. She then asked if she could get the artist Stacey Watkins and have her meet us and we agreed. We told the artist our story about Jude and the 777 information. She cried with us and said she would make sure that we were able to afford this piece and she did just that. 

I have had serious issues lately with having a very upset stomach and this hit me again on Saturday night. I told Mike I would rather just go home and be in my own bed. I was also missing Jude and wanted to get up to see him the next morning. So my loving husband drove me and the dogs all the way home at 11pm. On Mothers Day it was bittersweet but Emily did brighten my day by leaving me this message. She's an amazing kid. 

It was still hard and today is even harder today because it's been a month since Jude passed. I hate seeing my husband hurting and sometimes I still feel like I am going crazy. At times I feel more put together and like I am beginning to rise about the sadness a bit but then grief strikes again and I just want to go get Jude. NO work doesn't help so please quit saying that. I am pretty sure my stomach ailment in pancreatitis from all the stress but thankfully I know how to maneuver that at home thanks to Jude. I am on an all veggie juice diet today with lots of water. I am basically going to give my system a rest for the next few days and hope it clears up. If not that's when I will go to the doctor but again luckily I am pretty experienced in this situation. I think sometimes a lot of our health issues can be fixed with diet and extra water.  

So I have realized something. Looking back I was so close to Jude's situation that his illness and needs became a routine. I was so close to the situation that even though I knew he was ill I really didn't understand just how sick he was. Since he couldn't walk and could no longer tolerate the stander this just intensified his poor body breaking down.  Sometimes I think we are so close to our children's situations that we begin to focus on the medical versus the reality. Reality was Jude was a normal kid.......he was. He knew what you were saying, he smiled, he laughed, he wanted to play, and he loved Spongebob but he was sick. Take that in please he was a normal boy that was just sick due to a stroke. Strokes can strike anyone at any time so we just have to be grateful for our health. His little body and his lungs just couldn't go the distance ours could. So I know he is better off not struggling to breathe but our hearts hurt without him. 

So one month down..........one month closer as Mike says. 

The Daily Grind

Yesterday was hard again. We are very slow at the office because it's the time of year families are preparing for graduation and other situations. The quiet in the office is deafening and I cannot help but think of Jude. I have had a few people questioning why I am still grieving which makes me turn my head and squint. The loss of a child is awful. You realize you will never see their face while you are alive again and it just punches you in the gut. So I left work a bit early and went home. Once home I checked the mail and saw a letter from our primary insurance carrier. It was listing all of Jude's benefits paid for March - Ninja 1. Then I saw a letter addressed to JUDE from Texas Health and Human Services which always makes me cringe! In the past it generally held a nursing denial which always pushed my stress level over the top. Looking back I still cannot believe how many times we went through denials and how complicated Jude's care was. Anyway this time it held information letting Jude know he was no longer covered for benefits because "He is not living.". Oh the stupidity of bureaucracy. I have no doubt there is probably some idiotic law in place that they have to notify the party. So thank you to the state for reminding me Jude is gone I appreciate all the service you provided him but you can kindly go away now. - Ninja 2

 I was then able to relax a bit and then nurse Allan showed up on my door step. He was refreshing to see and he stayed several hours. The animals were SO excited to see him. 

Allan says he is doing okay. He shed a few tears yesterday and said he has started working again but it's just not the same. I know how he feels. Then night nurse Cynthia called and told us Jude had blessed her because she was pregnant. We were very happy for her. I also talked or texted with nurse Charlotte and nurse Candice this week. Everyone is moving forward but I know they are all missing Jude and we miss them. 

Today is a better day. I have moments when I lash out, moments when I cry, and moments when I smile. I am learning this is all normal. I remember feeling my moms loss when she died and I remember being incredibly depressed when my boyfriend died. However this is a new sadness. I also realize that if Jude had continued to fight and survive his teen years could have proven to be quite difficult for him and for us. My brain is processing everything but my heart still hurts. 

Jude's book is complete. It's basically a culmination of diary entries on this blog since he was born combined with explanations. We hope to have it published and ready by the 9/24 Emily's Smile Box day where she features the pediatric stroke walk/run. I hope the book will touch many lives and help many families. I have my first meeting with the publisher on 5/16 so say a few prayers it all works out for the best. The thought of him touching even more people's hearts makes me smile. 

Thoughts

Sometimes I need people to take a few steps back and remember I just lost a child. I understand you have needs and wants I need to attend to but just remember I am just trying to function. I know your life is marching along but give me a bit of time to get back up to speed. 

I saw this today and I liked this poem. I have read many over the past few weeks but this one stood out.

Tomorrow we list our house. It will be sad to see it go but the living room is so empty now. I think it will be good to have something new to focus on. 

The Memory Feed

I had an overwhelming response to yesterdays blog and I thank all those that reached out. I want to continue making a difference and if that means sharing my grief then that's what I plan to do. I had multiple people email explaining that the feelings I listed are exactly what they had been feeling but were unable to communicate them properly. 

When Jude first passed away the memory feed on my Facebook just tore my heart apart. However today I began to look at the pictures differently. I was thankful that I had chosen over the years to have such a strong social media presence. Due to that choice my memory feed is full of amazing pictures each day. It's almost like Jude is telling me good morning. 

I had Jude and a little Leibe on my page today and I am grateful for that. 

The New Normal

I thought since my blog was about being open and honest that I would again express some of my feelings. I thought grieving parents my be able to relate and understand what they're feeling is shared. 

What is the new normal after you lose a child. Well this is my experience. 

1. Having the wind knocked out of you when someone asks you how many children you have. I am not sure if I should answer 1 or 2. One now with an explanation or save them the grief and just say two (This happened Saturday). So I was honest and said, "I have two children but recently lost one." 

2. Feeling lost

3. Feeling like you may be going bat shit crazy but realize you cannot go bat shit crazy because you have to work and care for your other child. Then overhearing your husband say he is holding it together because he is trying to get his wife through this. That he just wants her to survive......poor Mike. He is almost reminding me of Robin Williams in, "What Dreams May Come" because he is so sensitive and caring. Today he called me and asked how I was and then he stopped before I could answer. He asked "crappy or really crappy." I explained really crappy and that it's not been a good day so he responded that we would work on just getting back to just crappy. He made me smile. 

4. Not sleeping. I slept two hours last night and I am dragging today. 

5. Wondering if you would freak people out if you just yelled at the top of your lungs in a public place. Then realizing they would probably take you away in a jacket so you refrain. No one wants to go away in the jacket.  

6. Realizing people are making comparisons because all they have to go on is what they experienced. However you want to point out to people that losing a parent or grandparent is hard but a parent should never have to bury their child. You just cannot comprehend the hole in your stomach filled with loss unless you've been there. 

7. You want to stay busy but you don't want to go to work. Work seems unnatural and confining. Like you are forced to sit and think about what's happened. Yet again you need to stay busy. 

8. Listening to people complain about trivial things makes you consider slapping them with your purse. Well not really but the woman in the nail salon complaining about her toenail polish made me bite my lip and hold my nail polish extra hard. 

9. Looking around your house and realizing it will never be the same. I generally have something with noise going at the house because the loss of the oxygen machine is deafening. When I look in my living room all I think about is watching Jude take his last breath and watching his little body lay there. It's overwhelming and it replays in my head over and over again like a nightmare. 

10. Normal is questioning if there is a Heaven and if you will see your loved one again........it's natural. It's not a lack of faith it's natural. 

11. Being so tired that you forget to do normal every day activities you normally did and being amazed you forgot to do them. Not wanting to clean, not wanting to cook, not wanting to life.  

12. Realizing your therapist is crying with you because she understands this is one horrible crappy tragic situation that really doesn't have any resolution but time. Hearing the words, "you do what you need to do I am fine with whatever you need." An understanding that depression is inevitable when you lose a child and that you just have to take time and figure it all out YOUR way. No one elses way.........YOUR way. 

13. Putting on a happy face when you really just want to crawl into a ball or sigh at everything you hear. You are basically annoyed by every single thing. 

14. Not wanting to be around large groups of people but toughing it out anyway. 

15. Realizing as prepared as you thought you were you can never be really prepared. Then realizing it's going to take a very long time to get back to normal and even then it will be different. 

16. Rotating through all the stages of grief on a continuous cycle in 10.5 second loops. 

17. Having a panic attack that a holiday is approaching. 

18. Realizing there is no sense to losing a child or a child being sick. People can try to rationalize why God calls a child home but in all honesty there is just no justification. It's just random chaos and all you can do is have faith your child is happier. 

19. The idea of walking into a hospital setting ever again makes me want to vomit. 

20. Realizing that everyone grieves different and you have to help your partner by being with them, standing back, and even asking for some moments to yourself if needed. 

21. Realizing that there is a huge stigma about death in the US.  People really don't want to hear about it but knowing your child's story will forever be with you and you don't want to hide it. 

22. Becoming a member of various support groups leads your heart to break multiple time for new friends that share their stories. You feel connected and thankful but you also want to delete yourself to save the pain. Yet you stick it out because they are your fellow soldiers in this battle. 

23.You learn to cope. That's basically what horrific grief is about just learning to cope until the pain starts to heal. 

24. Advice can be very annoying but you understand people are just trying to help. 

25. Realizing life will have to move on but it will in fact move on without the person you loved so much. You just have to keep up. 

Normal thoughts and feelings that are overwhelming and raw.  

Sunday

I finally dreamt of Jude last night and I woke up almost giddy with excitement. In my dream I somehow found my way to wherever Jude is. It was like building a time machine but going forward at the same time. Emily was with me and so were a few other people. I remember seeing him and he was standing there quietly. I walked up to him and asked him if I could hold him and asked him to walk but he shook his head no. He didn't want to walk. So I gathered him in my arms and sat down with him like I normally would staring at his sweet face and he smiled. I began to happily cry and kissed his hair like I normally would and asked people to come look at his smile. It was peaceful.

We had a fairly decent weekend. Like I said before we stay busy so that helps immensely. We don't really make plans but we go with what feels right and that seems to help us. If we plan to much I have noticed that our patience run thin. Next weekend is mothers day...........I am not sure I can be here. We have a wedding of a dear friend we are suppose to attend but I am not sure I can be in my house next weekend. We may have to get away again to a cabin or something local. Tonight when we got home after having a decent day I suddenly just filled with rage and burst out in tears to Mike yelling, "I am SO angry!!" I think this caught him off guard. I am so ANGRY my child died and tomorrow I have to go back to work again. Then I calmed down took a breath and realized life is what it is and it could be worse. Whew, it's those moments that just overwhelm you that take over for a bit. Again, it's normal and common.

Tomorrow we start a new regime. I am signing up at the rec center to start working out again. I am not doing this for anyone else but me. I really don't care about my weight and Mike doesn't either but exercise is healthy. I also am stocking my fridge with healthy items. It's time to start cooking again and my few glasses of wine tonight will be a send off to the past seven years. It's time to get healthy again and move forward. We list our house this week and we have our eye on a little house in downtown Roanoke. I am not sure it will pan out but we are making plans non the less.

Emily is doing well. She misses Jude and she has lashed out a bit at school at people who are rude and unfeeling. Allan is back working but he misses us and we miss him. He texts us "Morning glory!" on the weekends so we will know he is with us. Candice (the night nurse) is working as well but I know she also misses Jude. Charlotte.........sweet Charlotte hasn't quite been ready to go back to work yet but she about to try. Jude was as much her baby as ours and without her Jude's health wouldn't have lasted as long as it did.

Mike said that soon he will start marking plans on a calendar and if we can make the items that's good and if not that's okay too.  He wants us to spend time together and I think that's important too. So we are making it. Sometimes like I feel like breath but we are making it.

I did get a statue for Jude's grave until we get the final headstone. We dropped it off today.