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.