A Birthday In Heaven

Eight years ago I was packing to go to Baylor hospital in Grapevine. I checked in the night of 9/1/2008 and the staff administered some medication to try to start my labor with Jude overnight. Unfortunately that didn't work so the next morning bright and early they administered pitocin. 12 hours later on 9/2 Jude was born and scored a whopping 9.9 on his APGAR test. After a very scary pregnancy Jude was with us and was beautifully perfect. I cradled him in my arms and took in his sweet smell. Jude has always smelled like fresh linen and sweet fruit all mixed together. I would nuzzle into his hair and whisper sweet loving comments into his ear. This would be the trend for the next 7 years plus.

He brought us a lot of joy but we had some significant issues with Jude's sleeping and eating habits. We would later learn that this would all be attributed to the brain damage the stroke caused. Most of Jude's life was a hurry up and wait situation but in the end it all had the same answer and that answer was "Intrauterine Stroke." At three months old while we were busy watching TV Jude began to open and close his mouth over and over again. I realized this was not normal and then audible sounds began streaming out of his mouth. I realized my baby was having a seizure and that was the beginning of a very long hard road.

Jude spent many birthdays and holidays in the hospital or at home sick. On his second birthday we had an amazing party planned with one fabulous cake but Jude wound up in a Dallas medical center with his first onset of aspiration pneumonia.

Jude never ate by mouth again when we left the hospital. We were also told that Jude would need a nurse and an agency sent out the amazing Charlotte. Over the course of the next several years we would walk Jude's difficult path together planning his care, visiting doctors, going to the hospital, and setting up his school. A year later we picked up nurse Allen and we all began to form a family bond around Jude and his needs.  We all spent many of Jude's birthdays together and happily celebrated his life at each one. We realized that the miracle of Jude was not the healing of his body but realizing the perfect blessing in the amazing person he was. Jude's struggles, celebrations, and joys danced across my blog pages leaving some readers with a new appreciation of life. All because this one little boy encountered one of the worst tragedies possible but faced it with a smile and love. Jude was a normal little boy but his brain was just compromised by a mere second of fate. 

I am thankful for those seven birthdays I got to spend with Jude but man how I wish he was here now. Of course I am glad Jude is no longer suffering but he never should have suffered in the first place. Random chaos strikes without warning or explanation and you just have to roll with it. Sometimes I just want to run to Jude's grave and dig until I find him but I know he isn't there. So Friday is his first birthday in heaven. Mike and I have taken the day off work to be with each other and that evening Jude's headstone will be placed. We are going as a family to see it and send some sweet wishes to our little angel boy. I will share the headstone with everyone when we have pictures. If anyone would like to go visit him I would suggest going Saturday or Sunday to make sure the stone is positioned and ready. Jude is buried at the I.O.O.F cemetery in Westlake. When you pull into the front entrance his spot is directly to the right by the tree. 

Happy Birthday Jude. We love you. 

Homesick

Jude's birthday is growing closer.

The Dragonfly

You get to hear from me twice today. I have mentioned before that I am skeptical regarding the stories you hear about your love ones visiting in the form of cardinals or butterflies. However I do want to share an odd coincidence with you. At Jude's burial I noticed a dragonfly around his flowers and floating around his casket. I didn't think much of it but I rarely see dragonfly's. Since we have moved there is a blue dragonfly that is always around my back window every evening. When I walk outside it's always flying around me and I just simply smile. Again I really didn't think much of it. 

Today when I walked out of Target I noticed a dragonfly following me and that's when I thought, this has got to be a sign. So I went back to my office and Googled information and this is the first picture that pulled up. 

Interesting. 

Jude's Celebration

Someone in my loss support group shared this picture today. She said she believed it's the most fitting picture she has seen because it explains the pain a bereaved mother feels. I agree. 

She posted this saying under the picture which I have heard multiple times now but it's always true. Do not judge the bereaved mother. She comes in many forms. She is breathing, but she is dying. She may look young, but inside she has become ancient. She smiles, but her heart sobs. She walks, she talks, she cooks, she cleans, she works, she IS, but she IS NOT, all at once. She is here, but part of her is elsewhere for eternity."

Tomorrow evening we are having a celebration of Jude's life in honor of his upcoming birthday at our new house. We will make sure it's an uplifting positive event for everyone that attends. If you didn't receive an invitation just reach out to me because my brain is still not functioning properly. I have a tendency to think I have done something and it turns out I haven't. 

The house is coming along well. We have half the kitchen remodeled and the other half will come along with time. Like I mentioned before the projects keep us busy and our minds focused on positive energy. We rarely even watch TV anymore because we are so busy working during the day and working at night. 

Jude's headstone should be up soon and I am anxious to show everyone what it looks like. I think it's such a fitting tribute to him. 

Thank you again for your continued support of our family and for sharing in our story. 

The Fight Goes On

This is a subject I didn't want to blog about but I figure I should since it's an honest part of our life. I had to fight with insurance companies and Medicaid for years regarding Jude's care and supplies. Every time I turned around I felt we were getting another denial regarding nursing or some other issue. I spent hours of my time on phone calls with companies and arguing with those that thought Jude had no medical necessity. I have large packets of paperwork packed away in boxes providing evidence to insurers why particular items where needed. So why am I writing about this? In April when Jude passed away we filed a claim on the life insurance Mike carried as a benefit through his work. The plan covered him and both children. They have spent months improperly requesting information from doctors thus delaying the decision and now a denial. They basically tormented us for months with their letters and contact. 

Now let me explain. I am an insurance agent and in no way did I think Jude would be covered under his works policy. However when Mike set up his benefits he had me on the phone with him walking through the account each step of the way. When we got to the life portion the only discovery questions asked on Jude was " is the child handicap" which we marked yes. We then began paying on the policy but never received a policy jacket in the mail. We have since been told by the life insurer that the only copy of the policy is provided directly to Mike's work and not to each individual policy holder. His work has yet to find the policy and provide it to us. Inside the policy there is supposedly an exclusion for individuals that are confined to hospitals or home (which Jude wasn't until the end). Makes sense but it wasn't ever provided or disclosed. We also hoped we would never lose Jude but we did. So this was the money we were going to use to reimburse the very large check we wrote for Jude's monument and the rest of the bench that wasn't paid by donations. 

Here is the deal........I would give every last penny I have to have my son back. I would live in a tiny tent with no running water if I could just hold him again.  I don't want money because I lost a child, it sucks. I don't even want to look at payouts but I also hate the fact I am yet again fighting with an insurance company to get what was rightfully Jude's. This has landed me in counseling talking about this very subject and it's been the result of great stress. We will be fine. Thankfully the sell of our house will let us cover the amounts we had to pay but it's just the premise of the whole situation. The fact the corporate America has no class and no regard for human life. The fact we treat our elderly and sick with zero compassion. I believe there should have been better discovery questions in place, a copy of the policy should be provided to the policy holder, and the length of time this has taken is unacceptable. So let's just say without going into to much detail that this won't end here (you heard the tone in my voice as you read that didn't you?) 

I just want Jude back. I hate dealing with this kind of stuff. I wish God would let me write a check for Jude but it just doesn't work that way. Again this is a very personal subject to discuss but I think Jude would want people to know the fight continues. We will be okay. I am a fighter and so was Jude and corporate America has a war on their hands. If anything I will change how this is handled for the next person who has to deal with the tragic loss of their child. 

Emily and Jude

Emily rarely had people over to our house when Jude was alive. Since he was so ill I generally would tell Emily and her friends that they had to keep the noise down and I know that was difficult. She told me once that it was also sometimes difficult explaining to people Jude's situation and what all his medical equipment was for plus visitors could expose Jude to more illness. So it eventually morphed into Emily just not inviting people over.  Most days she would just stay home or just would venture out for awhile and get home before 11. She was always attentive to our need for sleep and our need for routine. So the other night she asked me if she could have a group of girls over to decorate overalls for the football games and I agreed. She took her friends up to the large empty room we now have above the garage. After about an hour I went up to see their progress and there in the room with all her friends Emily was laughing and having a good time. It made my heart happy but I knew we both would prefer to still be sitting on the old green couches, holding Jude, and laughing with his nurses. 

I told Mike I wish Jude was at the new house with us but he said that is impossible. He explained that Jude is like a comet that is amazingly bright but can only grace you with his presence for a short time. We have a few cries every now and then but then we take a few more steps forward. Emily inviting people over is a pretty big step forward. 

Mental Health Days

One of the most important things I believe a bereaved parent can learn is to step back and admit I just cannot adult today. Yesterday I took the day off work and it was needed. Throughout our lives as we face tragedies and losses we adults have a tendency to keep pushing forward. That's important but it's also important to allow yourself to have moments and to heal. So that's what I did yesterday and I may have to shut life off every now and then until we all get better and you know what? That's okay. 

Chandi at my work said she had someone tell her, " Well didn't they know Jude was sick? Isn't it easier." She said she was startled and then replied "NO it isn't easier. We are all dying but imagine losing your child." 

I had a dream about Jude which was exciting to me because I have not been dreaming of him. I remember he had on a white shirt and white shorts. His hair looked so perfect and I was so impressed at how perfectly styled it was. His teeth were no longer crooked from not eating and he made me feel so peaceful. I don't remember his words but I remember having that same soul reaching happiness around him that I always did. 

We are continuing to get settled into our new home. I am loving the land we sit on and how much peace it brings in the evening. I even have little chickens I tend to and they have brought me a lot of joy. They bring Leibe lots of excitement.........sigh we won't go there but overall it's been wonderful. 

Emily starts school on Monday and our lives will fall back into a normal pattern again. We have lots of last firsts coming up and I am going to enjoy every moment I have with Emily this year. 

An Update On Things You Learn

I did a blog on my experience regarding losing a child less than a month after losing Jude. I thought I would reflect back on that blog and discuss how our grief progressed. 

1. I don't really have the wind knocked out of me anymore when someone asks me how many children I have. I have learned to be honest and I say I have two children a daughter Emily and a son Jude that's in heaven. 

2. I still feel a bit lost and disconnected and I am sure that will continue for some time. 

3. I don't really feel like I am going crazy anymore. I guess that's because I fully grasp that this is a sad situation and I understand it's okay to feel lonely, overwhelming sadness, or desperation. 

4. I wasn't sleeping well after Jude died but I have begun to sleep again. However I wake up on cue around 3:15 like I used to when I would get up and check on him. 

5. I still feel panicked in public situations and somethings I do still feel like yelling but more over I tend to really observe my surroundings more. I really look at people and wonder what is going on their lives. 

6. I had mentioned that people make comparisons regarding their losses. I don't really get that anymore but I do understand that if I do it's because people have a natural reaction to want to identify to the situation and help remedy the problem. I just understand there is no remedy. 

7. Staying busy is still a very good resolution for times I feel very sad. With the new home we are constantly busy and rarely sit down at night until 9pm. 

8. Listening to people complain about trivial things still gets on my nerves but now I have a voice to speak up about it. I politely point out that life could be so much worse. I also have very little tolerance with anyone that lashes out against me right now and I almost find that unforgivable I don't care what the situation is. 

9. I had mentioned before that looking around our house makes me realize nothing will ever be the same. However now we have moved so of course it's really different. My doctor told me that child loss is like losing a limb. Eventually you begin to learn to laugh and move on with life but that life will never be the same as it was before. 

10. I mentioned that normal is questioning where we go when we die. I still think that's normal but I also believe that's where faith comes in. If we believe that we live good lives then we will be reunited with our loved ones. However a part of me also believe that you get back what you put into the world and if you don't put enough good in you just may be coming back to repeat it all over again. 

11.  I still have grief fog......bad. I can forget phone numbers that I just wrote down, I misplace things, I forget what Emily's told me constantly, and I walk away from my desk only to stop and wonder where I was going. If anything this is one situation that's gotten worse versus better. 

12. I loved my therapist that I mentioned cried with me but I moved on to a certified grief counselor. I don't see him often but when I do he helps. 

13. I am no longer annoyed at every single thing and I can get out of bed but I still have little patience for drama. 

14. I still rotate through the stages of grief quickly but it's slowed down some. 

15. I still have panic attacks thinking about holidays approaching but it's only been 4 months. Jude's birthday is coming up so I did take some measures to insure my emotional stability and those around me. I am taking the day off work on his actual birthday 9/2. My boss was very understanding and I had the hours left. I also set up an event at our new home on 8/27. Friends and family will be coming to see the new home and paint rocks in Jude's memory for our surrounding gardens. 

16. I still realize there is no reasoning surrounding the loss of a child or a child being sick. Knowing he is in heaven doesn't help, knowing he is out of pain doesn't help, knowing I will see him again doesn't help. However the very fact I did have him was a blessing. 

17. I still cannot do hospital settings or funerals and that may be a long time issue. 

18. I realize people grieve differently even more. I tend to be very vocal about how I am feeling. I hide my tears frequently but I do speak up if I am having a bad day. Emily is more quiet and you wouldn't even know she was grieving until you ask her a question or notice something she did. Yesterday I walked past her hanging calendar in her room and written on 9/2 was "Jude's Birthday!!!" Mike is still grieving but he has a very take charge attitude now of the situation. He says he made a promise to Jude and each day he lives his life is another step closer to seeing him again. 

19. Being the member of various support forums I still see new members starting to join. I can see the shock in their posts and the anguish in the heartache and I feel so terrible for them. However it's like kindred spirits working through this turmoil together. 

20. You still just learn to cope and others around you learn to cope. You keep moving forward the best you can with those that truly love you around you. You realize others lives go back to normal as the Facebook profiles change back to normal pictures and life begin to march on. So you decide to keep up or fall to the side. I know Jude would want us to keep up. I know everyone around us is grieving for Jude too and we love you for loving him. 

21. I also learned that fighting with insurance doesn't end when your child passes. es. 

I guess I will keep updating these as the year goes by. Jude's headstone should be in soon and I am anxious to see it. The cemetery feels so empty right now so I have been waiting to go see him again when the stone arrives.  We still miss his nurses dearly and are looking forward to the event at our house to get to see them. Sweet Allen texts me every Friday, Saturday, and Sunday on cue when he would normally arrive, "morning glory." What a fabulous man he is. Charlotte send me a text this week of a photo from Jude's grave while she was visiting. Candice is still on my Facebook and we laugh at each others posts sometimes. I miss you guys! Love to you. 

The Car Seat

I am having my car detailed today because I need to trade it in. Jude's car seat is still strapped into his spot in my car and I have not been able to take it out. I was able to box up all of Jude's other items or donate them but I couldn't part with the car seat for some reason. So today the gentlemen cleaning the vehicle explained that they have to have my permission to remove the seat to shampoo the seat properly. I explained the situation and asked them not to strap it back in. Hard day.........just a hard day. 

I haven't felt well lately. I have been late a couple of times to work but Chandi my co-worker is always more than sweet and understanding. She said this will probably continue to happen for awhile until enough time passes that the situation becomes easier to handle. It's nice having people around me that are so understanding. She seems to have a great grip on what it's like to lose a child. She had a fiance that passed away suddenly and she was very close to his mother. She said she watched her go through the grief and understands it's not a quick process. Many of the stories she tells me about his mother I can relate to. 

The house is unpacked and organized which is a relief. We are also working on our new projects which helps keep us busy. When I get home I don't tend to sit down until about 9 each night which is a good thing. 

Emily is starting her college visits today. I cannot believe she will be a senior this year. I am sad she will be leaving home but I am very proud of her! 

A quick update

Well the closing has not gone off without a hitch. We were able to move into the house but our buyers buyer had a problem with getting their appraisal back on time. So we are in the house waiting for final confirmation of a close date which we believe will be tomorrow. We also got to the house and our fridge didn't fit and now Emily froze up her ac unit upstairs. So my stress level has not gone down. I also witnessed a horrific accident this morning which pretty much left me teetering on the edge. I had a particularly hard night last night thinking of Jude so I am sure that's why my anxiety is so peaked today. This started because I finally sat down and realized that even though we are in a new place my feelings aren't any better because I still miss him greatly. I know that with each passing day things will begin to get better. 

The good news is that Mike is doing better and said he is moving forward. He thinks that each day he lives happily is another day closer to seeing Jude again. He said he wants to make sure he does everything right in this world because he doesn't want to come back and repeat everything again due to mistakes. He believes there are lots of people he has met that will be suffering through this life again. I think that's an interesting concept. What if hell is actually having to come back and re-do everything versus spending eternity with your loved ones in Heaven? Makes you think doesn't it? Although life is beautiful it's not heaven. 

The positive is that I am nearing completion of the unpacking. As soon as we close I can start working on items and projects around the house. I know this will keep my mind busy and that's what I need right now. 

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.