It Just Hits You Like WHAM!

I had a nice lady in a loss group share a post about losing her special needs child. She included the following sentence. 

"You become a "doctor", a "pharmacist", a "lawyer", an "advocate", an "educator", and some people's worst nightmare (Mama Bear doesn't even begin to cover it)! Almost every single waking moment is focused on this child."

She is right and she expressed that in the most perfect way and I can feel the emotions in her sentences. She feels a bit lost since she doesn't have her person to care for anymore and I relate to her feelings. Our move is going through and I am packing up the last of the items I need to put into boxes. As I finished some packing and exited Jude's room last night I once again had tears streaming down my face. Mike stopped and asked me what was wrong and I told him I hate packing. I explained that every time I pack I encounter another reminder of our loss and this time it was a simple medical tag hanging on Jude's shelf. I have no doubt the amazing nurse Charlotte hung it there for easy access for deliveries. He chuckled and I know it wasn't to make fun of me in any manner. He simple said, "a tag makes you cry but you can look at pictures each day? The pictures stab me in the heart." It's the little things that get me for some reason. The tiny little Ninjas waiting around the corner like the talking Scout toy that was stacked in numbers at Wal Mart. For some reason the little things you don't think about on a daily basis are the hardest for me to deal with.  I had to get a crib sheet today and walking into Babies are Us was like walking through a haunted house. Around every corner was a reminder of Jude, a little boy his age, or something he would never get the opportunity to use. I almost felt like Jude was there for a bit just guiding me through the store to find what I needed and guiding me gently out. So I fluctuate between having good moments and not so great moments but if the good outweighs the bad then I think I am making progress. 

I do tend to struggle if I am faced with stressful situations. They are not as easy to handle as they used to be and weigh heavier on my shoulders. At times I feel like I cannot handle any type of stress and throw my hands up and walk away. It's just how it is right now and how it may continue to be for a long time. 

So I am mixed on my feelings about our move this weekend. I am sure I will shed tears but I have lots of friends coming to help and lots of family. I know I will have many shoulders to lean on and so will Emily and Mike. I know in the end this move will be a positive change. 

Have You Checked Your Check Engine Light?

I am currently learning about personal boundaries and how to improve my life. I didn't write this to call anyone out but rather I am writing this to share what I have learned and maybe help someone else going through grief. I found this quote on one of the informational sites I have been reading and it resonated with me. 

“You change for two reasons: Either you learn enough that you want to, or you’ve been hurt enough that you have to.” ~Unknown

I want you to imagine having an injury that has affected a nerve in your body. That nerve is frayed, sensitive, and every time it's touched a shock of intense unbearable pain runs through your body. That's how my grief is right now. It's new, it's fresh, and my emotions are at their very peak. So anything even trivial can become a very big deal in my little world. On Saturday I had a terrible experience when I went to the movies with my family. I had a situation/argument escalate out of control. Because I didn't lay the groundwork for the foundation I needed for my boundaries I was enveloped in drama. I wound up on the side of the building bawling while my family sat inside. My husband eventually found me and although comforted me he also scolded me for allowing my emotions to escalate the way they did. That's right I allowed it. It wasn't anyone else fault that I allowed the situation to exhaust me and take over. I allowed an outside situation to ruin the evening with my family and they suffered for it. 

I read an article about checking your own personal engine lights and I found it fascinating. If you are in a situation that is not desirable then ask yourself what's causing the issue. Is the person draining? Are you draining? Is the situation worth losing a relationship? Is it worth losing yourself? What lights are going off on your personal dashboard and are you ignoring them? When we don't check our engine lights and find the root cause of the issue then we are just giving away wasted energy. I was not checking my own personal engine lights and because of that I was suffering from anxiety and over emotional responses. I wasted energy I could use to heal my heart from losing Jude and energy that I could use to mend my family who has suffered so much over the past year. 

My husband is an expert at setting and maintaining boundaries both personal and professional. He will warn anyone that begins to cross the line with him but if they keep crossing they get bitten (metaphorically speaking of course). I am not good at this and never have been. I wear my emotions on my sleeve and it has cost me severely. I am not good at being assertive, I fear people's responses, and I care to much about what others think. I do this in my professional life and in my personal life. However with Jude's situation I did get a bit better about saying "no."  One of the number one complaints I read in my loss forum is the parent who lost the child feeling people are crossing their personal property line. They want to throw up a no trespassing sign but they feel guilty or afraid to do so. So how to we implement a no trespassing sign in times of grief in a way that we don't hurt the other party?  I learned to have compassion for the others and understand they have feelings too. Then firmly and respectfully set your boundary and their response is not your responsibility. All you can do is take care of yourself. I learned if you do this both professionally and personally then your life, emotional state, and physical state improves. So that's my quest to follow this program. 

Moving Forward

I had a moment this weekend in a movie where I started to cry a bit. We went to see Tarzan and there is a scene where the mother Gorilla lifts Tarzan up and cradles him like a baby even though you can see he is much older and a full size child. His feet extended far beyond her lap but it didn't keep her from cradling him. I thought of Jude and how I held him at night and I shed a few tears but then I remembered how wonderful it felt to hold him. How incredibly lucky am I that I had such a wonderful experience in my lifetime. I had a baby for almost eight years who loved his mother with every ounce of love he had. He was purely innocent. 

Jude just had a sweet presence about him and a look in his eye. 

He liked to tuck his little bottom lip in when he was thinking about something important. 

and dart his little eyes when he was being cute. 

and he was always sweet even when he didn't feel well. 

I have mentioned we should all strive to be like Jude but I have to strive to be like him as well. Jude never got angry over insignificant matters and in the grand scheme of things every single item but our loved ones lives is insignificant. Without our loved ones our lives just don't matter much because if you think about it we live to be loved and give love.  If Jude was ever angry it's because he was physically hurting. I wonder if we all decided to refrain from getting angry unless we were physically hurt what would happen. I understand that is impossible but I still wonder. 

I remember sitting in the hospital room with Jude feeling honored I could be by his side but crying when he hurt. It was an honor just to hold him and be with him for comfort. I miss being with him but I don't miss him hurting and I know he is no longer in pain. Jude taught me a lot including letting go of the past and this weekend I did a lot of letting go. Nothing will bring Jude back and that's hard to take. Nothing will bring anyone back that I have lost throughout my life so I plan to keep their memory safe in my heart and move forward the best I can. 

Our closing on our new home Has been delayed. We are requesting some prayers that we close by Thursday because we really need possession by Friday. If we don't obtain possession it's going to be a MESS for me to clean up in regards to utilities and moving companies. I would for once like things to be..........smooth. 

I miss Jude

Today is a hard day. The tears keep flowing. My heart hurts, my head hurts, and my stomach hurts. I keep thinking of his tiny little body fighting so very hard until it just couldn't fight anymore. 

It's just one of those days. I realize Jude will not be coming with us on our move and I think it's started a chain of emotions. 

I just miss him. I love you Jude. 

Being positive

I have tried something new this week and some of you may think I am being ridiculous but I wanted to make an effort. I wanted to work on being more positive as my small change in the world. 

I have worked on keeping my head up and smiling at everyone I pass. I have noticed how smiling is contagious(thank you Elf) and how people really do brighten when you extend them kindness. 

I have taken the time to watch the funeral processions for the Dallas police officers and joined in placing my hand over my heart. I said prayers for the families of the fallen and asked God to touch them with grace and comfort. 

I have reached out to a few friends just to tell them hello and see how their day is going. 

I have laughed at everyone playing PokeMon go. Rather than seeing the negative in the game I saw the positive. I saw people exercising, having fun with their families, and spending quality time with people. I left the negativity up to others and said some prayers that those playing would be safe and respectful while gaming.

I loved seeing George Bush dancing at the memorial in Dallas because in Texas we like to cerebrate ones life.  I again left the negativity up to the internet. 

I took the time to watch a movie last night with my amazing daughter. We chose "Miracles From Heaven" and I bawled when I saw the NG tube, the feeding pumps, and the hospital stays. I took the time to look the family up and realize they are from a city very close to me. So I decided to follow the mother Christy Beam on facebook to read her uplifting faithful posts. When my husband asked why God chose to heal their child and not ours I pointed out our child did amazing things because he couldn't speak and because he lost his life. I concentrated on believing in faith and love. 

When someone driving abruptly turned in front of me without a signal today I took a breath and calmed myself. I realized that maybe their blinker was out and they didn't have time to fix it. 

When a woman called my office grumpy and irritated this week I tried to remind myself I don't know what's going on in her life. She may be lacking sleep from caring for a very ill child. 

Instead of judging and making assumptions about another's life I decided to just stop and step back. I decided to write yesterdays blog and I felt good after doing it. 

I just stopped and decided to do my best to be positive with whatever situation was presented to me. Before I respond to someone I asked myself if my words would have a meaningful impact and if they were worth saying. 

I think it's been a decent week. 

We Just Need More Love

 It's obvious I have a lot going on in my life both emotionally and physically right now. Because of that I tend to shy away from other people's life tribulations although I try to still lend moral support. However I have come to the conclusion that not speaking up about specific situations can have negative ramifications on those closest to us. I believe this is true regarding anything in life even the political situations that surround our very world today.  Often people don't want conflict so they keep their opinions to themselves and shy away from any type of backlash. From my Facebook you can tell I don't hold back on personal opinions yet I have in specific situations surrounding those close to me I need to speak up. I guess I just had to much on my plate and like I always say, "Not my circus no my monkeys." but in this situation I feel compelled to post something. 

I have a couple that is very close to me going through a divorce. It breaks my heart because I love them both so dearly. I have been in a divorce situation and it was very difficult and it took a long time to recover from.  I was married to an amazing man who was kind, generous, and made good money. However we had grown apart and he was more like my brother than my husband so I decided to divorce him. It was not mutual he did not want a divorce and it broke my heart seeing him hurt. I received the "look", the whispers, and the judgments from others. Many people made assumptions about the divorce, the money, and the decisions without knowing a thing about what was really going on. The assumptions are what bothered me the most yet I kept my mouth closed and knew in the end everyone would see the truth. Now 12 years later my amazing ex and I have a still fabulous relationship and with Mike we are an amazing triple parenting unit to Emily. I knew it would be this way, I had no doubts. I knew the judgmental remarks we received would become words of praise and they did. 

Here is the reality of the world we live in, you are allowed to have your own opinion. However when you take that opinion and spread it to others in a derogatory manner you hurt not only yourself but those around you. Everyone is allowed to have concerns about someone they care for but when you mix those concerns with assumptions then you create chaos. I have had more than one person tell me things about this divorce that flat our aren't true. I could have spoken up but I figured it would just feed the chaos. Generally I simply just ask "Is anything you are feeling or doing going to change the outcome of this situation? No then why worry about something you cannot control."

I choose to just love them both. I choose kindness in general because our world needs more of it. We need less judgement, less gossip, and more love! I am not saying we shouldn't be concerned for others but if we have questions then why not just ask them?? Why not get clarifications before rushing to judgement. I think it's very easy for us humans to look in on someone's life and draw conclusions but taking a mirror out and facing our own demons are so much harder. Also if you think this blog is about you then you need to step back and realize it's about us as a group and not to take offense because we all just need more love in the world. I will leave you with a part of the speech that President Bush gave yesterday here in Dallas, "Too often we judge other groups by their worst examples, while judging ourselves by our best intentions."

How true is that?

How we handle questions

Yesterday was an interesting day. We had three incidents where people were asking questions that we couldn't avoid discussing Jude and his passing. I love talking about Jude but I know it can upset people making them feel they intruded on our life by asking questions, but that's far from the truth. The first were people that were picking up our dining room table I sold them. Super sweet couple who were asking where we were moving, why we were moving, etc. I eventually told them about Jude but they took it very well.

The second was a lady at the furniture store. She noticed the relationship between Mike and Emily and asked me if she was my only child. He explained I had a son and left it at that but she asked if he was as handsome as Emily is. I replied yes and then she asked another question and I replied, "I am afraid we lost him three months ago." She looked at me and said, "have you ever asked a question you regretted." I couldn't help but smile and thank her for her response. She then asked me about Jude and I happily told her about his amazing life. She looked at me and made a comment about all the hate in the world and what an amazing story. I then told her, "my son fought a battle everyday of his life but he did it with a smile. There was no anger like what we are seeing in the world just innocence and love. He can teach us all." She started crying and hugged me tight. She was a neat lady. 

The third encounter happened to Emily. We were buying a pillow for her new room and again our family was joking around with each other. The sales associate asked Emily if she was the only child. You have to know Emily, she is quiet. She has also had a difficult time lately with anything that involves public speaking about her brother. She just missed a function that is dear to her heart because of high anxiety about the situation that made her physically ill. I know people don't understand but I will have to rely on faith they will eventually. Anyway I was impressed when Emily replied, "No I have a little brother." The sales associate kept asking questions and I acted like I was looking at something while I listened. I heard Emily explain Jude had passed and the sales associate extended how sorry she was. Emily replied, "Don't be. He brought us lots of smiles and happiness." WHOA! I was proud. 

Emily is about to start talking to her interview/mental management coach and I know she will help her in regards to how to speak about Jude. It's a tough situation but each day gets a little easier for us and I think I am to the point that I enjoy sharing Jude's story. You may see us cry when we talk about him but we like to share Jude. We want to share his legacy. 

Packing is still hard, Moving, and Dallas

We got a lot of our house packed today and a lot of the rooms cleared out. I have had to start packing weeks in advance for multiple reasons. Primarily it's because packing is very difficult. As mentioned before I encounter many of Jude's memories and it's emotionally taxing. After clearing a closet I have to take a break to recover. However I think of that as a positive that I know what I need to do to make sure that during this process I am emotionally stable. I am also not really leaving my house during this process and hopefully people understand. Today while packing the Emily's Smile Box room I opened a box I had forgotten I placed in their temporarily. It was full of the decorations I had used in Jude's room before he went on hospice. I gave a little gasp and a few escaping tears. Then like right on cue Somewhere Over The Rainbow started on the radio. Gina was helping me pack and we both smiled even she noticed it was like a sign. She told me "Jude is telling you his is okay mommy."

As many of you know I live in the Dallas/Fort Worth metroplex.  I am appalled at the massacre that happened in my hometown the other night and I am praying for all those involved. I was also appalled at the MN incident and the young man that lost his life. I pray for peace and for unity throughout our country. Unfortunately, I grew up in a very race conscience society and I was determined that my child would not grow up seeing color. Emily had babydolls and Barbies of every beautiful race and she was taught everyone deserves kindness and equality. I don't know what the cure is for our country so I just choose to take my lessons from Jude. I will choose to be kind and to love others.  To hold my head up and smile at everyone I see and only pour out love because love overcomes darkness. Maybe may way seems ridiculous but all I have is my voice and my heart so I will speak up and reach out.  All we can do is try to make the world better.

Complicated grief and the book cover

I have touched on the subjects before that I am going to talk about today. The thoughts on this blog are strictly my own and anyone that reads this has a right to disagree with them. There are two areas I have talked about that I am going to list out. 

1. There is a stigma in America regarding mental health. People don't like to discuss mental health, people don't like to discuss grief, and many issues in modern day society are still swept under the rug. 

2. Special needs parents are not superhero's. We are simply parents that have been faced with a tragic situation that do what we can to properly care for our children to the best of our abilities. We still fall, we still cry, and we still need help sometimes. 

I switched from seeing the counselor I was going to when Jude was ill to a certified grief doctor. Today we had a very good discussion and I am very in tune with the  level of care this individual provides. He said if grief lasts longer than 6 months the official diagnosis is complicated grief. He believes he is already seeing some of this in me and has started treating me for it. So what is complicated grief? It is not depression although that can sometimes present with it. Depression is a clinical situation that presents in the brain. Complicated Grief is someone who is having issues with the natural healing process. 

"The main symptoms of complicated grief are yearning, longing and frequent thoughts of the person who died. They typically retain a strong interest in a deceased loved one and experience positive emotions when they think about that person; all of their negative emotions are sharply focused on the circumstances or consequences of the death."

The doctor was very kind and has also lost a special needs child. He explained that putting a limitation on grief when it's a child or a partner is rather ridiculous. He knows you never get over the grief but there is a way to help change your thoughts to help you process the situation in a healthy manner. 

"Grief is not a disorder, a disease or a sign of weakness. It is an emotional, physical and spiritual necessity, the price you pay for love. The only cure for grief is to grieve."
~Dr. Earl A. Grollman 

After an evaluation he discovered I was having bad days laced with sporadic good days which he said is big positive. It shows my mind has the capability of being able to move forward. So we did some exercises to help with this process. One included finding out the feeling I miss most that I experienced with Jude and reconnecting to that feeling. Oddly enough that feeling was comfort. I missed being able to comfort him and the comfort he brought me when I held him in my arms after a long day at work. My worry about him was eased as soon as I walked through the door and held him in my arms. 

I have no doubt my husband is knee deep in complicated grief and is having a very difficult time with it. Maybe I can show him some of the techniques I am learning. I realize none of this will ever bring Jude back but I do realize Jude wouldn't want us upset or angry. I keep repeating this to myself as I walk through this difficult path. I know in time my blog will once again discuss happy moments and amazing memories but this just takes some time to process. 

Why do I talk about all this? My inner most personal experiences? Because I promised to do it for Jude. From the start of this blog I promised to be open and honest. People need to know it's okay to seek help, it's normal to feel despair, and it's okay to cry. 

On a good note I have the cover of Jude's book and the website we will be working with. It will be fine tuned with a book trailer and more in the upcoming future but you can see the cover now. I am proud that Jude will spread so much happiness through his smile and stroke awareness to others. http://www.diaryofbabystroke.com/

Packing Is Hard

Although I am grateful we found the perfect home to move to packing this house has been so difficult. Today has been physically and emotionally draining as I packed one memory after another of Jude. From his Halloween costumes, to school work, to birthday cards. I haven't cried like this since the day Jude died. Also our fence blew down in the storm so we will be cancelling all our plans for the fourth and hopefully people understand.

It will get better but right now it's a hard day. Hard days are allowed.