Vegas and Missing Jude

We have been moving on with our lives and starting to branch out and live again realizing that Jude is gone. However there are those days that for a few seconds I forget and I stop to give him his meds, stop to say hi, or turn to see him and then I remember. Those days have heartbreak in them. Jude book is taking form and it's amazing to see everything that goes into a publication. 

This past weekend Emily and I took a whirlwind bucket list trip to see Miss USA live in Vegas. I have to admit that I got a bit teary whenever the lights starting flashing and the actual show started. 

Watching Emily see Vegas for the first time was incredible. Her eyes would light up at the large hotels and all the special attractions. When we told her we wanted to show her the water show at the Bellagio she seemed less than interested. However when the water perfectly choreographed to the music shot up for the first time you heard Emily exclaim "Whoa!" 

She was cute and sweet all weekend and looked beautiful as usual. She helped her old mom out when I discovered the Vegas heat is MUCH worse in your 40's. When I was in my 30's Vegas was a breeze. Now I think I need a motor cart and a battery operated fan blowing ice water on me. 

Our house is still for sale. We had multiple showings this past weekend and they all gave the house a great report and said it's perfectly priced. So the only reason I can figure that we haven't sold it is divine intervention. I believe God has a plan that we will make one fluid move because of the abundant stress we have already encountered this year.  The house we liked when Jude was with us is about to go back on the market. We wanted to put an offer on it before it listed but the sellers want to see what offers they can bring in with ours so they want to list. I understand that but I wish they would give us the opportunity to meet their asking price before listing. I am ready to move forward and I know Mike is too. Mike has a very difficult time at the house and I want him to have a project to focus on. The house we want is a fixer upper and we could turn this little gem into a diamond. 

Someone was kind enough to nominate Emily for an award. It would help her obtain a scholarship for college. If you would be so kind to vote for her we would appreciate it. She is under Emily Lites. You must select 5 kids and then hit submit. http://www.caring.org/2016YouthBallot.html

You Don't Get Over It

Picture this. It's been multiple years since your child passed and you reference their birthday to a friend and what a sad day it is. Your friend proceeds to tell you it's been years and it's time to get over it and move on. This happened to someone I know yesterday. Our wound is fresh with Jude's loss being so recent but let me make it perfectly clear that a parent never gets over losing a child. Grief simply takes on a new form and you learn to live life again to the best of your ability. I don't believe that time heals all wounds but I do believe time makes those wounds more bearable. So if your ever put in the position of wondering why a mother or father is still grieving the loss of their child you might consider keeping that information to yourself. It hurts the parent when you tell them it's time to get over it. There is no getting over it....ever!
Parents also want to remember their children. They want to tell you about them and remember that their life was once amazing and whole. For a parent to trust you enough to share that information with you should be a great compliment.

If you are wondering........it's still raining. When I said it's rained pretty much every day since Jude died I wasn't lying and the clouds are still weeping. Mike and I have seemed to reverse roles a bit. I believe when Jude died I was in complete and total shock. As a mother I knew my son was very sick but the final decline was so quick that I felt I couldn't catch my breath. There were moments after he died that Mike would just catch me staring at nothing quiet and alone. Mike has now taken on more of the rain cloud and Jude's absence weighs heavily on him. Emily is actually holding up pretty well but she does breakdown every now and then. Here is an amazing speech she gave at the honor Connor run. It was her first public speech since Jude passed. I think she did very well considering.

Jude's nurses have also reported they are doing better and most have secured new jobs. So I am happy that they are finding new work and are making the transition to help others. I know there will never be another Jude and I am grateful for all they did to help him. 

Tomorrow Emily and I leave bright and early to watch Miss USA in Vegas. Some prayers for safe flights would be appreciated. Have a wonderful weekend everyone. 

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.

Friday

Yesterday I went for my first grief counseling session. I had seen the counselor before when Jude came home on hospice so she was familiar with us. We both just sat and cried together and I told her about how I was feeling. She said everything including the nightmares are completely normal. Yes after the loss of a child you can experience nightmares so just know it's a normal response. After the counseling session I went back to work but I was caught up and kept thinking of Jude. So I left a bit early and met with the lady regarding Jude's memorial. We discussed the design for the headstone and for the bench our friends collected money for. Today I began issuing out payments to people in regards to Jude's funeral. It's surreal that you have to handle things like bills and costs. My cousin said if someone should lose a child it should be an automatic pay off on your mortgage and a year off work. Funny statement but it just doesn't work that way. 

I am here at work today and doing alright. Questions seem insignificant to me at times but it's my job so I do it with a smile. I am also watching the bad weather approach our area and of course carry worry about Emily driving in it. My updates seem a little emptier now without Jude here but I know he is watching over us. 

Hope everyone has a good weekend. 

A Quick Little Update.

I have good moments and bad moments and I believe that's normal. At work sometimes it's so quiet that I just start thinking about Jude and cry behind my computer. Tonight Emily had a photo shoot for the PolkaDot Alley. They had the cutest items and she had so much fun. I was happy to see her enjoying herself.  

On our way home I realized Jude wasn't going to be there to smile at me when I walked through the door and the tears started to fall again. I feel as if we are riding a roller coaster again but I know the roller coaster will start slowing down.

When I got home tonight another amazing gift was on my doorstep. I have been so amazed at the outpouring of love for Jude and our family. I realized today we are about to go into May and it seems like we are on a time warp but amazing people stop and still remember us. It's so humbling. If I fail to thank you know that all you did meant so much.

I received this picture and I thought it summed up exactly how I am feeling.

One Step At A Time

I had someone ask if my grief was any easier knowing Jude was so sick. It isn't. If anything it's been really difficult because Jude required so much attention and depended on us for everything. Our schedules literally revolved around what Jude needed.  If you can close your eyes and think about your child then imagine coming home and never hearing from them again. Never touching their face, never kiss their lips, never hold their hand, or tell them you love them. It's just silence. Not only that but we feel like we lost four people because the nurses are gone too. However you learn to move forward. You put one foot in front of the other and you just live. Mike quotes Shawshank all the time, "You get busy living or get busy dying." We choose to live.  We choose to honor Jude's memory by trying to crawl out of our grief and helping ourselves and others! We can do this, we have faith! 

We are getting our house ready to place on the market. We hope the change in scenery and putting our attention elsewhere will help us recover some. We aren't even sure where we are going and may rent for awhile but we are making steps to move. At first I was worried I would be leaving Jude but Mike pointed out he is always with us. So a step forward.

Emily has started working out again and she is doing pretty well. She misses little things like we do such as Nurse Allan singing Spongebob Square Pants at the top of his lungs. She misses seeing Charlotte when she gets home from school and of course she misses Jude. She posted something on her Facebook that I thought I would share. 

"I have realized over the course of my brothers passing that too many people are upset at the wrong things in life. Going to prom with the right date should not matter, getting mad because someone did not answer a phone call should not matter, and so many people do not understand what my family is going through. We barley can comprehend the fact Jude is not here. I lost my brother. My inspiration. My friend. Someone who was so innocent and lovable he was aware at every moment what it meant to be living! Please don't stress about work or getting something on time that it ruins someone else's day be positive and enjoy life because it's the only life you get and make a difference. Just understand my parents are not doing well and would just like a couple days to sit back and realize the precious little angel that they lost is no longer here physically. So thank you to advance, but we lost someone very important and it's hard to hear people complaining about small things."

She is pretty amazing. 

I keep telling people I don't feel like I'm receiving any signs Jude is okay. However I had to recant that tonight. I realized that every night when I go to take my bath and I turn my music on that of all songs... "Tomorrow" from Annie plays. We can thank Emily for the song being in my play list. She loved it when she was younger and I just never deleted it. Also my friend Sarah loves singing it very loudly so it makes me smile. However I have such a large plays list that I rarely hear it but literally every night it's played. So maybe I just need to be more open and listen. Jude loved musicals despite his dads protest. 

The cemetery will allow a granite bench at the foot of Jude's grave and I have some sweet friends trying to obtain one for him. https://www.gofundme.com/2asz7uwk

Anyway, back to work. 

How Are You?

"How are you?"

I keep getting that question and I know people mean well but I wonder if they really want to hear the answer. I reply " I am good if I am out busy." However I normally don't add that I am NOT good if I am sitting at home, if it's night time, or if I am working. Work is the hardest and it's taking a HUGE toll on me emotionally.  I am doing my best and servicing my customers but I honestly feel today that I am not sure I can do this. Then I remind myself that I have to for my family. I am also having terrible nightmares which I have been told is normal but still scary. No I don't want to take sleeping pills so please don't suggest them. 

I feel like someone has reached inside my body and pulled every single nerve ending through my skin and left everything on the outside. That's how I feel. That's the best description I can give and since I have always been raw and open on this blog I figured I should continue that. Every single part of my body hurts and I just want to see Jude's smile again. I know I have pictures and his smile in my memories but I want to walk through the door and cuddle Jude like I normally would. I miss his nurses too. 

Hearing people happy or making plans grates on my nerves which is not what Jude would want but again how I feel. I don't want to hear complaints because everything you could possibly say seems extremely minimal to me right now. I wanted to start eating right and working out today but I have no desire anymore so I will just walk the dog. 

Grief is dark and it's sad and I hate it. I don't want to ever experience it again. I have traveled this road before but again not with a child. I have lost my mother, grandparents, a boyfriend, friends, but this............this one a child.......... trust me it's SO much worse.  I pray every night and let God know that I don't want to lose Mike or Emily. I hope he listens to me. 

It takes time. 

Just time.

The Evident Decline.

Tonight has been the first night that I haven't felt completely encompassed in grief. I know it will come and go but we are keeping ourselves busy which is helping. The funeral is over and people are dispersing but I am very lucky as I said last night to have so many people still checking on us.

When our family arrived home tonight I again came to the realization of how much our lives were dedicated to Jude. Literally everything we did worked around his schedule, his medications, and his needs. I am so glad we did too. I can also clearly see how much Emily lost and gained during these last seven years. It's very odd for us to not be on a schedule and it's almost disturbing.

When Jude was initially diagnosed 12/5/2008 (I will never forget the day) I remember feeling grief. I mourned the baby I thought I was going to have but there is nothing like losing the actual baby you had. I remember comparing Jude's situation to other special needs children. I hate to admit that but I did it and I remember thinking his diagnosis wasn't that bad. Jude could smile, eat, babble, hold his head up, roll over etc. The doctors thought the very best.  However as the years passed all that went away........well everything except his sweet smile. Now that I am standing back looking in I can see just how very sick Jude was from 2015-2016. I think we all got so used to his situation that we couldn't see past the medications and his precious smile. Now I can flip through pictures and video's from infancy through current and see the progression. I really blame the surgery in 2013 we subjected Jude to installing the pain pump but I know we did what we thought was best.  I remember telling someone this was a rapid decline and although Jude passed quickly this was actually not a "rapid" decline. Jude's oxygen levels had started to drop, his congestion had increased, his heart rate had increased, and his pain was evident. I remember getting a sinking feeling one morning before I left for work that Jude was fighting something extremely serious this time, but he still smiled when I kissed his sweet hair and I dismissed the thought. The pictures I took of Jude showed him growing ever more pale and I can see him growing more tired. I am eternally grateful that something divine intervened and let us know that putting in a trach and breathing tube would only prolong Jude's suffering. Although there are those that can benefit for a breathing tube Jude's pulmonologist made very clear that Jude would NOT be that type of candidate. I am happy he was so frank with us. He made Jude's last few months as comfortable as possible.

I know I will continue to miss Jude but my head is beginning to clear some. I can look at situations more realistically and realize just how hard this baby struggled and how blessed we were to have him. I also see new flowers being dropped off at the cemetery and I thank those that stop by to visit him.

Stone Soup

When I was a child my elementary school teachers would read our class a story about Stone Soup. It told the story of a stranger walking into a village hungry and looking for food but no one would give him anything to eat. The only material item the wanderer had was a large pot. So he filled it full of water, made a fire, and put the pot on to boil. Soon he put a stone in and began to loudly talk about the amazing aroma that filled the air. Villagers began to ask him what the wanderer was cooking and he would reply, "Stone soup and it tastes so good but it needs something else to make it taste better." Villagers began to offer up carrots, seasoning, onions, and more. Soon the wanderer took out his stone because it wasn't edible and then everyone enjoyed the amazing soup and the wanderers belly was full.

This is the story that came to my mind tonight. I have had a very hard day at work but I try to cover it up to the best of my ability. I am not ready to face life but as an adult I have no choice. I feel like I am the villager that has a pot that is full of water and a single stone. I have put my pot on the fire and I know everyone wants to throw their vegetables in but the fire isn't quite hot enough yet. So many people are asking how I am and I want to respond like Sally Field did in Steel Magnolias "I'M FINE!!! I'M FINE!! I can jog all the way to Texas and back but my son can't he never could"......you know the rest. I know people mean well and I am so blessed that I have so many people who love my family. I just know so many people want me to participate in life and be happy in the bright sunshine but I am just not ready yet. I need a chance to just breathe and take in everything that has happened over the last seven plus years. Each morning as I go to work I pass Jude and say, "Good morning Ju Ju" and each evening I pass and say "Good night my love." I have pulled in most days just to walk around his grave but I know over time that need will pass.

So over time I know the pot full of water with the single stone will need to be filled. Slowly but surely I will ask people to throw in their carrots, then their celery, some seasoning, and finally some onions. Onions are my favorite and the layers will be filled with the stories of our life and will flood the pot with amazing love and happiness. I know everyone is out there and I hope you all will be patient. Just know it may be months or years but I will ask you to throw in your seasonings and I will truly thank you for your patience.

Hey Jude!

I had to go back to work today and honestly I would rather be home in my bubble.  Life carries on but I am not quite ready to carry anything. Getting away to Sante Fe was an amazing thing for Mike and myself. As mentioned the nights are very difficult here at home and although we didn't escape our grief we found new ways to channel our emotions while in another setting. We saw many sacred holy places and we appreciated being so near to holy comfort. I never thought I was overly religious but in Jude's death I found I was much more faithful than I thought. I have always said that Jude is a blessing and I still maintain that information. As my sister mentioned at Jude's funeral when Jude was born we were all under the impression that God had answered our prayers and Jude would be okay. Yet God had other plans and we learned that Jude was "okay" in God's eyes and soon he was perfect in our eyes too. I have found a purpose in Jude's death in the fact he has reached so many people. With a purpose I believe our fragile spirits find away to heal.

I could elaborate on our trip but I choose to tell you about how we are doing because that seems to be the questions of choice. We are devastated and I am not sure how we will go on but per Mike we just choose to live. We choose to "be" and that's what counts. We choose to do what Jude would want us to and we march on. We do that with profound grief as we have had to pour out all his medications, question all that happened during his rapid decline, and realize we have to somehow find our way back to living a regular life. We all are taking this situation day by day. I caught Emily humming "Hey Jude" last night as she cleaned her room and it touched my heart. 

For our family part of our grieving included distributing Jude's medical equipment to other amazing fighters that need what insurance cannot or would not give them. I also believe that providing his diapers, food, baby wipes and other small items to those in need will mean as much as the large items we will be donating. I appreciate everyone's amazing emails and messages and I do know that grief takes time. I have traveled the road of grief many times although never for the loss of a child. I guess I could ask why God has subjected me to so much tragedy but I choose to thank him for not experiencing more loss. Like I always tell Emily, "Everyone has a story it's what you do with yours that counts."  I share my blog because I feel like I need to tell others that it's okay to grieve and to cry. It's okay to have your shoulder heave in pain as you question everything around you.  I would like to share something I felt on the plane this weekend. I wrote it down when we flew above the clouds with a beautiful radiant sun shining brightly all around us.

As I looked out the tiny airplane window over the vast beautiful clouds I felt peace. I knew in my heart that Jude was indeed finally free. He would never struggle to breathe again and he would never have tubes attached to his body. So at that moment I vowed to no longer wish for one more minute with him because I knew that minute would just cause Jude more pain. He had suffered enough so I simply said, "Goodbye Ju Ju Bean! I love you with my whole heart." and with that I looked forward. Jude would want us to all look forward.

For those that could not be there Jude's service audio is attached. I think it is rather inspirational and if you feel compelled please listen. Note it's about 2 minutes in our so before the service starts. When you hear Allen speak that was one of amazing Jude's nurses. Just copy and paste.  http://chirb.it/q9vn7g One thing you cannot hear is the entire congregation singing "Hey Jude" at the top of their lungs. It's why the person singing gets choked up. It was so moving. 

Thursday....

My - Heart - Hurts.

It's so selfish!! Jude is NO longer in pain but man my heart hurts. I feel like I have been cut in two and I keep thinking about his nurses as well. I want one more day to hold Jude and kiss his little head as I take in his sweet smell. We will be okay............it just takes time. Time! Emily went back to school today and although she said she wasn't ready to "life"' yet she held up pretty well!!

We are leaving Saturday and will be back on Tuesday. As I mentioned before the nights are almost unbearable for me. So we are getting away for a bit so I can try to come to terms with everything.  Mike seems to be my rock and is handling things so much better than I am. I am a broken mess and I always thought the roles would be reversed. So I am very thankful that he is here and holding my hand. Today when we got home from errands the company that was ordering Jude's new wheelchair was here waiting for us.......ninja! Anyway, we explained what happened and the salesman explained he had lost FOUR children! He said he and his wife had 6 and they had lost 4 in various tragic circumstances. I breathed deeply and counted my blessings.

I will blog when we get back and I want to thank everyone from the bottom of my heart. Thank you for the food, flowers, and for allowing me to grieve in the way I need to. I miss this sweet little face but I will choose to believe he is here in my heart.

Grief

Over the past few days I have been so busy I have barely had time to think. When I did think I don't think my brain functioned properly so my blogs have been laced with various emotions. Overnight and this morning we finally got some sleep. I woke up numerous times but early this morning I snuggled in and got several hours of good restful sleep. When I woke up I felt a bit refreshed but still conflicted and sad. I decided that I have always promised to be completely honest on Jude's blog and always share everything I felt. I now believe part of that is sharing our journey in grief. Other families need to know what it is like, but they also need to know that everyone grieves their own way.

This morning when I got up I still didn't eat. Our refrigerator is filled with food from friends and family but nothing sounds good. So I just immediately went to work and turned on some music as I sorted through Jude's room. Some people decide they prefer to keep their child's room the same but I decided seeing the medical equipment and personal items hurt me worse. I also knew all of his items could help families more than they I could help us. I started with his clothes which I knew would be the hardest and I pulled everything out of his wardrobe. I pulled out the items I knew I would want to keep and the ones that still had his smell. Many times throughout the day I smelled those particular items very deeply. I had called the oxygen company on Sunday but I had not heard back from them. I finally called them in tears today begging them to come take their equipment and they showed up today. The gentlemen actually showed up explained he had lost a child too and he hated he was here to pick up Jude's supplies. Around 2pm my doorbell rang and my best friend Gina was standing on the steps. She immediately stepped in to help with boxes and bags and help me sort through every single piece of Jude's items and his equipment. I also received help from my other Gena who found a faith based medical supply company that said they would pick up all the other equipment. Watching the oxygen leave my house was difficult because it sustained Jude's life. I found an amazing home for Jude's bed through a friend so I know it will be well taken care of and I am very grateful for that. Trust me that I miss him and wish I just had a few more seconds to hold him close.

Later in the day I was settling down to watch TV when I heard the doorbell. I answered the door and it was our normal trustworthy Fed Ex lady delivering Jude's supplies for the month. There sat boxes full of items and I just gasped, which Mike heard. He yelled, "Ninja's??" and came running. He calls the items that hurt our heart Ninja's. As he ran to the door I asked our Fed Ex driver if she could return the boxes to the sender and she just looked at me perplexed. I said "He died on Saturday" and I could tell her heart broke. She said, "Of course!" and she began loading the truck back with our help then she hugged Mike and went on her way. Tomorrow we have more supply companies arriving to obtain their items we had leased and then the major donation should be Friday. Then hopefully Friday night we will leave for some time away because the nights are killing me in this house. I am easily frustrated right now and I just need some time to act like my normal self.

Mike drove by the cemetery today to see Jude's mound with all his flowers but I have not been able to drive by yet. Today I really didn't want to leave the house until night set in and now I just want to run away. I know grief well because we have become very acquainted over the years. I know this horrible hole in my stomach that's filled with hurt will only lessen as the hole is filled with time. It won't even fully go away but it just takes a different shape and form.

Our nurses are grieving too and we miss them dearly. I think they probably find some comfort in the fact they provided Jude with the best care possible but I know their hearts are still aching. One thing that has been helping me is watching the video my friend Cristina made of Jude. We started his service off with it and each day as I crawl into my hot bath I put the video on and watch it several times. It's so comforting and makes me smile. So know throughout this grieving period I will be here and share with you my memories of Jude. It's my honor to share his life and the love that surrounded him every step of the way.

It's just Wednesday

In the past I have watched other parents before me grieve for their children and I could not relate to their emotions. Sometimes their posts were a bit overwhelming so I would bypass them with a heavy heart. This may be one of those posts some may want to avoid. I am broken hearted. I may seem like a pillar is strength but when I get home and the silence sets in I miss my Jude. Tonight when we finally arrived home from Jude's services I needed to take a bath. I turned to ask Emily to watch Jude and just sighed and touched my chest. Not only did I realize Jude is not there but I realized Emily is leaving soon too and Mikes father is still also very ill. It all became very overwhelming. I just wanted to take Jude out of his bed and hold him in our normal fashion while I smelled his sweet hair and kissed his forehead.

I remember when Jude was very ill or another pediatric stroke parent lost their child I thought the world should stop, but it doesn't work that way. I have a husband that feels alone because I'm grieving so bad my entire body aches and I have a daughter that cannot be alone at night. All this but tomorrow it will be just another Wednesday for most people filled with work and school.  Just another day of the week but the weeks march on and we must March on too. Tomorrow proves to be difficult as we donate all of his items to those that need them. His organs may have been to damaged but his equipment will help so many. Thank you to all that came to his service!!

Mike and I may go away for awhile. There are no final plans because I'm really tired but if it all comes together I'm shutting my phone and blog off for a few days. Thank you so much to all those that loved my Jude! I know we will get through this and Jude will be there holding our hands.

Jude's Amazing Room

I won't sugarcoat this situation because it's been rough. When everyone is gone at night, the silence has become deafening. It is very difficult for me to eat and even harder to sleep, but we are making it. I finally got about six good hours of sleep overnight. I am used to having our nurses here, and I miss them dearly. I normally walk out in a sleepy haze in the middle of the night asking Candice how Jude is. I miss Charlotte and Allan's smiles in the morning, and most of all, I miss Jude's smile. The house seems empty without the rise and fall of the loud oxygen machine or the beeping of his feeding pump.

The visitation last night was amazing. We were so touched by all the people that turned out to see Jude prior to his service. There were people attending that I haven't seen in 35 years that followed Jude's journey who just wanted to reach out. I was overwhelmed and grateful. The outpouring of response to my blog, our Facebook, Emily's Smile Boxes, and more shows just how far reaching Jude's message was. My grandmother said last night that Jude was put on this Earth to make us all better and I believe that's true. I have felt a bit torn as a mother because I am not sure how to quit parenting and taking care of my son. I also felt like I would have some instant gratification in a form of a sign that Jude was okay. That didn't happen. Saturday and Sunday I searched everything smells, clouds, words of peace, but nothing filled my heart. Then last night as I bent down to kiss Jude one last time I saw him smile. I thought I was hallucinating from lack of sleep so I looked again and there he was........smiling at me. I just stepped back and exhaled. I had one good last cry and then realized Jude is no longer in pain. I had to admit that he was really struggling and really in pain which is evidenced in his pictures. He is now FREE and I have to celebrate that. He deserves to be celebrated and today that's what I plan to do. Today his service is about his amazing life not mourning his death. We plan to do just that. Jude is free of pain, Praise the Lord Jude is free.

I was going to save this picture until after the service but I believe it needs to be shared for all our readers all over the world. To all those that cannot make it today. Jude was in our living room most of the time and couldn't truly enjoy an amazing little boys room. Therefore, we wanted to make sure he had an amazing room to sleep in. Thank you Trey Ganem for your fabulous artistry.

Jude's Service Information - Please share.

Jude's services

Monday 4/11: Visitiation
If anyone would like to see Jude please come between 6-8 pm at Lucas Funeral Home.

700 W Wall St, Grapevine, TX 76051. We will close his casket after the viewing.

(817) 488-7566

His funeral will be Tuesday 4/12 at 11am. Keller United Methodist Church. 1025 Johnson Rd Keller, TX 76248

The burial will be private

We ask that everyone wear something comfortable because that't what Jude would want. He loved the color red and we thought he was a super hero. So put on your best superhero T shirt or outfit and let's celebrate this amazing boys life!

What Happened And Our Blessing.

After not properly sleeping for so long I should probably be in bed but I am not (true to fashion). So you will have to forgive any ramblings or bad grammar. I told Mike that when Jude passed I should probably stop my blog and he said that if he was reading this as a book he would be mad he didn't know the exact ending. I feel like some people may want to read this particular update and some may choose to move forward without this information. So I will leave this at your discretion to read.

I blogged on Thursday that Jude's health had taken a rapid decline and I am afraid this continued into Friday. After a week of Jude's nurse Charlotte lovingly trying to help him with his horrific lung pain,  Nurse Allen show up for his Friday shift. It wasn't easy and hospice came to check on Jude. Around 2pm I received a call from them and it's one I won't forget. I heard the words, "Honey I think this is it," and I melted into a ball of sobbing blubber. My friends and co-workers came rushing to my side holding me as I sobbed and spouted off statements about getting Emily to Dallas. It may sound like a ridiculous statement but we will get to that information. My friends were calm and collected and merely asked what they could do but I tried to recover myself. I realized I needed to pull myself together and make sure my kids were first. So I grabbed my purse, grabbed my keys, and with a tear stained face I explained I had to go.

I drove home my normal route down the windy country road laced with green grass and wildflowers. As I passed the cemetery I think is so beautiful I wondered if I would soon be reaching out to ask for residency for Jude in such an amazing place. Once I got home the hospice nurse was still there and nurse Allen looked blessed but concerned. I noted that Jude's breathing had taken a sharp turn for the worse and his tiny little hands were growing cold to the touch. The tears streamed from my eyes and I hugged him tightly. I began to tell him just how amazing he was and then I turned to the situation at hand. Emily is due to give up her Miss Dallas teen title this weekend and although unimportant in the grand scheme of things I knew this was fate. Her pageant family is amazing and with one touch and one phone call her needs were handled. Her amazing father stepped in and so did so many of her friends. Emily is being watched after and I rested easy on that stand point. I knew she would want to remember Jude as her smiley beautiful brother full of inspiration and hope.

Once Jude's weekend  night nurse got to the house we explained his grave situation and she was devastated. See our nurses are also our family. She kissed Jude, loved on him, bathed him and more. His breathing grew louder and I laid in my bed begging God to make him comfortable. Around 3am his breathing slowed and I could no longer hear him. I finally slept for an hour or so. When I awoke I would wander in my living room looking at all Jude's equipment and sat calmly on the couch hoping I wasn't disturbing them but yearning to be close. I would wander over and kiss Jude and tell him how amazing I thought he was. Finally at 7am Nurse Allen arrived and I walked over to Jude and the night nurse explained how she thought Jude was rallying and might make it. I walked over to his bed and leaned down, grabbed his head, and kissed his hair. I said, "Darling boy I love you with all my heart and soul but I never want to watch you suffer like this again. I will see you soon baby." and I went to bed.

Fifteen minutes later Nurse Allen knocked on our door with tears in his eyes. Jude's tiny little fragile damaged lungs could no longer keep up. Mike and I walked to Jude's bed and holding hands we kissed his tiny little face and told him goodbye. Despite how strong I think I am Mike was ever the giant in this particular situation and he explained to Jude that we will be there together soon to hold him. We then tried to curve information on social media while we called family and deflected information going to Emily until we could get to her.

Soon hospice arrived to pronounce Jude and amazing people came with tenderness and care to take him to his forever home. Mike and I then drove to Dallas. With the help of the amazing pageant family surrounding Emily we walked into a private hallway and as she looked at me perplexed I said, "Oh honey Jude died." and she burst into tears. She cried for a good 20 minutes as I showed her picture of  his casket and more. I knew she would want to be involved. Then suddenly she looked up and said, "Please tell everyone I said not to cry. When we cried it made Jude cry and he wouldn't want that." and she meant it. She text me later tonight and said she wanted to make sure no one thought she was being strange but to understand she is being positive which she thinks is important. She knows coming home will be very difficult because it's so very quiet here now.

It's been a menagerie of information today.  People want to help but honestly we don't even know where to turn yet. We have meeting tomorrow to set final arrangements and I can say that having a big turn out at this inspirational boys services will mean the world to us. I understand many people will relate this to their world and no one wants to lose a child. I just ask you to bear in mind that Jude was pretty amazing. Without speaking one word he touched thousands. How amazing is that?

While driving home tonight I remember thinking that I have been around death so much in my life that I am very cynical of signs. Then looking through my photo album I found this. Taken on 3/28 in his bed with full sides there is a strong light presence there. Jude truly had angels around him.

I think Jude had some pretty amazing angels and now he is one. Seven years, Seven months, and Seven days this boy graced the Earth. So many people think I should be devastated but look how I was blessed. How lucky was I?? "I am okay I am alright although you have gone from my life. "

I have read so many of the amazing tributes to Jude tonight. I have also read all those with small children who are confused. I guess I learned with Jude that bad things are just going to happen and although we have to handle them it's at your discretion how to approach them. Just let your children  know that Jude spread so many smiles. That giving to others is the best reward you could ever hope for. Please know I will post his service information here.

Love Always,

Jude Is Gone

At 7:50AM Jude walked into the arms of Jesus. My son may never have walked, or ran, or played in a park but I believe he has touched more lives than most of us ever will. We have shed many tears this morning but are so incredibly grateful to have been there to tell Jude goodbye. I want you to know that he loved each and every one of you. 

His services are pending but we will be using Lucas Funeral Home in Grapevine, TX. I will post more when I have the information. 

"You know that place between sleep and awake, the place where you can still remember dreaming? That's where I'll always love you. That's where i will be waiting." Peter Pan

I love you Jude. You were my heart. I am not sure how to not parent you anymore but I know you will be there to guide your father and I both. I have no doubt my mom is rocking you in her rocking chair right now and my grandparents are waiting for you at the park. Go and run my son! 

We are sorry for the delay in notification but we wanted Emily to know first. 

Much Love

Jude's Night

Last night Jude's breathing was so scary and Mike even mentioned that he was truly concerned Jude wouldn't make it through the evening. However in true Jude fashion he did a bit of a turn around. I took him out of his bed and held him close holding his chin in an upright position to stop the apnea and raspy breathing. I did this for about two hours and Jude began to calm down and fall fast asleep. I was so happy he was resting comfortably in my arms and I gave him lots of kisses while he slept. 

 Hospice instructed us to turn off Jude's feeds so that we could try to get some of the fluid off his lungs. However I knew that running a slow drip of Pedialyte could help flush his body so about 3am I asked the nurse to put that on. Jude has been sleeping calmly ever since. I did end up coming into work and when I left I could hear some wheezing but he was still comfortable. 

The big test will to see how his day goes today. He did still have some crying out in pain last night but not as bad as he had throughout the week. So therefore the pain management course hospice has put him on is working. Hospice has informed us they will be going by to see him today and check on his condition. They also informed the hospice doctor last night of his condition. 

I really just want to be at home. I am also having the WORST allergy attack so thank you Texas for that situation this morning. I have to get Emily to Miss Dallas tonight so she can give up her crown this weekend but I really don't want to be away from Jude. I know his dad will keep me updated so I will stay close to my phone. 

Jude's decline

Jude has taken a rapid decline. Hospice has been here and we are trying to control his comfort. Jude has a way of bouncing back but we have crisis care on stand by if needed.

Frustrated but making it

So the short of it is that it's been an extremely stressful week. I think I have blogged that statement so many times that it has become irritating for me to read so I am sure it's frustrating to you. You know it's a bad week when your husband is crying begging God to just give us a break for a change. 

Basically Jude is not well. He is in pain and is crying most every evening and fighting oxygen issues. He has good hours filled with smiles and bad hours filled with pain. So hospice is setting up a pain management schedule where Jude will receive pain medications around the clock to hopefully offset any pain that could be coming on. There is a debate on whether this is respiratory related or intestinal and everyone has varying opinions. On top of this Mike's parents are not well and he and his sister are having to make some very stressful decisions regarding their care and finances. My grandmother always says, "Getting old isn't for the weak." In addition to these issues we had a situation creep up with surrounding our home that will probably have us sell within the next few weeks. I am also still waiting on nursing for this weekend and I have to go see Emily give her title up at Miss Dallas. I will enjoy myself but I will worry about Jude if we don't have full time nursing on Friday and Saturday. I have also met with some backlash on the Go Fund Me I set up for my friend which has been extremely frustrating. I won't go into details on that situation but just know the family appreciates your continued support. 

So I am overwhelmed. Story of my life it seems but yet again I am reminding myself it could be worse. You just take one step at a time and laugh when you can.  

A Tragedy, A Staycation, and A Visit.

Mike and I had our staycation from Wednesday through Friday. It was nice to be able to relax but it was also without fail laced with some issues. Tuesday when I got home from work I received a message from a friend asking if I heard that an acquaintance of ours was in a car wreck. I told her I was not aware and then she proceeded to tell the wreck was extremely serious. Our friend Patience was in a coma and her husband was killed on impact. Although we were not super close I have known this family for about fifteen years. We met in the pageant scene and they are one of the biggest supporters of Emily's Smile Boxes. They have attended almost every event Emily has had and they said the September walk/run was their favorite event of the year. This family was all about giving back to the community and never once asked for anything in return. At Emily's box making parties they were always the first ones to volunteer to take the boxes to the local pediatric hospitals to drop them off. If they weren't volunteering with Smile Boxes they were helping tornado victims, holding food drives, volunteering with Meals On Wheels, and more. My friend Patience had overcome many challenges in her life and it doesn't seem fair this would happen. Now a family sits in a similar position we were in so many years ago. However a situation that looks so much more bleak. I have decided that this year at Emily's big event we are going to put stickers on every box in honor of Patience and Scott.  Its the least we can do after they gave so much time to Emily's charity. If you would like to help Patience family in this time of need then here is the link to her Go Fund Me page. She had multiple children and we want to make sure they are cared for in the best possible manner. https://www.gofundme.com/forpatience

It's never easy for any family to encounter a major tragedy and the discussions that are held are difficult. More often than not those discussions and decisions are also judged by others and they really shouldn't be. Deciding what someone would want regarding quality and quantity of life is the most difficult decision there is to make. It's hard to realize that sometimes there are fates worse than someone passing and vice versa. I hurt for families every time I see them walking a similar path. 

On top of that situation Mike's dad wound up in ICU on a ventilator. His condition has some improvement but it is still very serious. They are taking his situation day by day and Mike has been visiting the hospital. 

During our staycation we had an appointment with the medically dependent children's program to re certify Jude for another year. The case manager and a nurse came to evaluate Jude and to take down notes regarding his last year. While the nurse was there she asked if I needed anything and I explained I needed everyone to stop denying Jude's nurse. She was stunned that Jude had ever received any type of denial based on medical necessity. She just shook her head and kept commenting on the issue. She said "Baclofen pump.........needs a nurse, Continuous feeds......needs a nurse, Controlled substances....needs a nurse, etc." I just shook my head and agreed. So Jude's complexity according to MDCP has changed and he is now the very top level of medical necessity according to their charts. They consider the Baclofen pump an IV and said his care never should have been questioned. If I could only have the nurse and case manager with me each time I fight these denials. 

Jude is doing well but he has been crying some at night indicating that he is dealing with some pain. We control it the best we can and generally with work we can get his smile back. I will share some more regarding places we visited tomorrow. It's not super interesting but I enjoyed it.