Friday, April 29, 2016

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. 


Wednesday, April 27, 2016

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.






Tuesday, April 26, 2016

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. 

Monday, April 25, 2016

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.


Friday, April 22, 2016

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.


Thursday, April 21, 2016

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.


Wednesday, April 20, 2016

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.